Sisters United

Louise DeCelis and Elysia McConkey at balmoral beach

It was great to see Elysia arrive safely this morning. I stayed in bed with Lou until Elysia’s taxi dropped her off at the clinic. It would have been a beautiful commute with fresh snow in the villages and farmland between Frankfurt airport and Bad Salzhausen.

I hold Lou’s and all night. (she would not let me do that if she was well, she likes her sleep-space waaay too much. She actually builds a barrier with pillows between her, myself and the kids……LOL)

Lou was restless from about 2:45 am until about 4 am. As she can’t communicate I’m not sure why she was uneasy. It just feels like ‘fight’ to me.  The Princess Warrior – Mrs Perpetual Motion, punching-on until the bell.

While Louise was agitated, attempting to open her eyes and speak, I told her maybe 10 times; “Your sister Elysia will be here in a few hours, she loves you, I love you, Noah and Evie love you, your mum and dad love you, your friends and village love you.”

Elysia is holding her hand now. They can spend some quality time together today. Her parents are there too, like every other day. Together as a family, like the previous 40 years.

I’m now spending time with the kids.

 

Noah And Evie Came In Today To Tell Their “Mumma” They Love Her

Some flowers evie picked for her "mumma"

I brought Noah and Evie in to cuddle and kiss their mum today. I’d like to say it wasn’t a facilitated goodbye but while we hope for a miracle, I have to prepare for the worst. I was undecided on whether they should see her.

Lou fell into a deep sleep at 1:30 am this morning and has remained in dreamland for 15 hours. She slept through her bed-bath, sheet change and catheter insertion. She’s unresponsive to any conversation but seems to have occasional awareness of peoples presence. Her breathing has slowed and she pauses for long periods before the next inhale. She looks peaceful right now. Observing her this minute, as the room gets dark by the sun going down, my thoughts are distracted, I want her to sit up and say, “what’s up Byrne? what should we do now? Grab the kids, let’s go…..”

Lou had some fleeting moments of consciousness when her babies were here. Unfortunately, she didn’t acknowledge Noah or Evie though. Their presence did stimulate some movement, she momentarily opened her eyes but seemed to look through the children. I don’t know what was going through the kid’s heads at this time. Evie wanted to cuddle me and Noah seemed distracted by my sister’s emotional state. Their minds were busy with thought, which I hope wasn’t stress.

Words can’t describe how much Noah loves his mum

Those two little monkeys are so special.

Evie picked two red flowers before we left the apartment, one for her and one for Noah to give their mum. They are in a glass beside her bed now, next to some polished stone love hearts the kids purchased for Lou from a vending machine at the Frankfurt pool a few weeks back.

I’m glad I brought the kids to the clinic. They both kissed “Mumma” and told her that they loved her, many times each. They don’t know she’s is on the precipice of life. Actually, Noah may be aware now that I think about it, not much gets past that kid.

Evie with a red rose in her hand for mummy

Noah and Evie’s life is potentially made more difficult from this point forward. I know I have the ability to shape them into the best they can be but their lives will be very different if we don’t get a miracle.

I’m playing Lou some music right now. I’m taking one for the team by not blasting my hip hop 😉,  I’m playing her some of her favourite tunes, which I like anyway. I’ve always liked her music. It’s amazing how powerful lyrics are when you are in a high emotional state. We’re listening to Vance Joy, all his words are smacking me in the face as I attempt to type this post…….the two songs that have played since I started typing………

‘Fire and the flood’ lyrics…..

Since we met I feel a lightness in my step
You’re miles away but I still feel you
Anywhere I go there you are
Anywhere I go there you are
Late at night when you can’t fall asleep
I’ll be lying right beside you counting sheep
Anywhere I go there you are…….

‘Riptide’ Lyrics….

I just wanna, I just wanna know
If you’re gonna, if you’re gonna stay
I just gotta, I just gotta know
I can’t have it, I can’t have it any other way……

Noah and his mum, such a bond.

We were meant to see Vance in Brisbane with Jon and Elysia a few months back but Lou spent the afternoon in the hospital. Lou purchased Elysia and John tickets in appreciation for all their help and support they have given us. It was a pre-booked ‘beating cancer’ weekend away.

Lou loves music, live music particularly.

The kids would be back in the apartment with my mum and sister now, they all went back on the train from the clinic. I’m lucky mum and Leish are here to help. I didn’t know how much we would rely on them before they arrived last week. It allows Les and Lynda to be present with Lou as much as possible.

Evie and my hand holding mums

I hope my lil munchkins heads are clear tonight and they sleep fun adolescent dreams. It’s important that I can let them know at any proceeding moment in time that they told their mum  they loved her and said goodbye.

Louise’s bloods have improved today, her vitals are strong but her liver enzymes are increasing. She is essentially in a liver coma or hepatic encephalopathy. This comes with a decline in brain function because the liver can’t adequately remove toxins from the blood.

The world can be really cruel. The end, whether we can extend it or not, is really horrible.

I just love the way Noah says “mumma” – with an extended aaa at the end….

Her best friend (and sister) will arrive on Friday morning. If Lou does leave us soon, I hope she clings-on to be present with Elysia. They have a sister bond like no other.

I do wish that Louise was at home right now but I have no regrets being here in Germany, we knew the risks involved. The tide turned so fast though. On Thursday we were preparing for the kids to go back early for school, thinking we could follow a few weeks later. Crazy.

I’m going to slide in behind Lou now and give her a cuddle and tell her that I and her village love her very much.

Dixie Chicks now playing…….”wide open spaces”……she loves this song.

Evie needing a cuddle from dad as she’s a little confused

I Cried Today

Louise and Dom on Evie's fourth birthday party

Someone asked me a few months ago, “when was the last time you cried?” I couldn’t recall. I’ve thought about it a lot and why it’s been so long. Not days, not months, perhaps decades. I’m not proud of it, I think it’s a little strange.

The last time I recall tears on my face were moments of victory, not sorrow.  Winning an under 21 world cup in South Africa, a world Australian sevens championship in Paris, even a schoolboy rugby premiership in my final year of school. All that effort, the months and months of perseverance, pain and grit, paying off in ultimate reward.  The top step on the podium.  These vivid memories of emotion for me are in the 1990s.  A long time ago. The only visible emotion I recall since then is the birth of my precious babies.

Noah, Louise, Evie and dom in Evies fourth birthday party

I haven’t cried throughout Lou’s cancer-rollercoaster, a cruel roller coaster where the tracks only descend into further depths of anguish. Louise has received perpetual bad news, week after week, and I haven’t felt the need to shed a tear.

In the last few months, I’ve envisaged tears, but in the event of a doctor informing us of a victory. This conversation seems to move further from our reach. I’ve always been so optimistic about Lou’s battle, she’s a warrior and warriors fight to the end and I’ve always anticipated the end is Lou on top of her podium. Even if it took years which I accepted as the reality.

I had no team success in club rugby. In fact, nine years of first grade and I never played in a grand final, semi-final or playoff game. I always thought my team could win any game on any given day though, always. Is this unrealistic optimism? Maybe. I don’t think so.

It was this ambitious thinking that would win us unlikely games, even against the best of the competition. At those moments in a game, well into the second half, down by 20 points, some of our own supporters already departed. The fight drained from teammates faces, you could see the loss-acceptance in their eyes. I still thought we could win.

The Byrne family on Evies fourth birthday

I would do anything to be the catalyst for turning the tide.  An intercept, line break, a damaging tackle, a try against all odds to close the deficit and push the optimism back into my player’s faces. I remember trying so hard. For every minute of every game.

I cried today.

A combination of seeing Lou so broken and hearing her doctor say that her situation has become extremely serious, deflated my confidence or even idealism of how this war was going to play out.   There is nothing I can do to shift the outcome of this game. With Lou in a delirious state, she hasn’t got the current mental or physical capacity to fight right now.

I’ve always thought Louise could win.

Lou has tried so hard. For the 600 odd days, she’s been aware of cancer in her body, she has given it her all. A disease doing everything in its power to take her from this world, she’s done everything asked of her, and more. Lou has tried to turn the tied and we’ve attempted everything in our control to help her.

les, noah, louise, lynda , dominic and evie, on evies fourth birthday party

Louise’s platelets keep dropping, even after blood transfusions. Physically her body isn’t working for her. She can’t walk alone. Her doctor said she has hypercalcemia. He referenced an “exploding tumour” due to her LDH levels dropping (which I think means the tumour growth and potency is rising uncontrollably).  Her haemoglobin is falling so oxygen isn’t moving around the body the way she needs it. Her body is failing to make the bone marrow needed to recover for any form or treatment. All of these issues are improbable to recoup from.

“It would take a miracle to turn things around.”

I feel so helpless. I want to turn the tide of this game. I want to cry in victory. I don’t want to tell Noah and Evie their mum didn’t win. I don’t want tears today.

Louise DeCelis and all the young ones at the table on Evies fourth birthday

Hospital Care Update I Special Hospital Dr. Herzog / Bad Salzhausen

Lou has been in 24-hour medical care with Professor Herzog since the 26th of December. We needed somewhere between treatments that can give Lou the medical support we can’t.

The private clinic is in Bad Salzhausen, 55km’s from where our apartment is in Bad Homburg.

Lou is in a double room so Lynda, Les or I stay take it in turns of keeping her company day and night. It hurts that she can’t be with the kids but it’s one of those hits you just have to wear on the chin.

Unfortunately, we can’t plan a day let alone a week right now, it’s practically hour by hour for decision making.

We’re happy with the clinic, the staff and their services. We just need to get her healthy so we can treat the liver.

I’m Keen For The Results Of Lou’s Liver Function Test Today

Lou’s brain has been scrambled since Friday. This has only previously happened when her liver has been overloaded processing the chemotherapy with TACE. It’s been a little over three weeks since her last liver treatment so there wouldn’t be any chemo in her liver now.

A simple blood test measures how well the liver is performing its normal functions of producing protein and clearing bilirubin, a blood waste product.  Hopefully her blood test today will show her liver is still in good working order.

I’m hoping her horrible symptoms are because she’s eaten very little in the last five days. Her digestive regularity is completely out the window too, so it could be a combination of these two. I actually don’t know.

She started on IV food last night. I really hope this helps.

It’s horrible when her brain is scrambled because she can’t communicate, she’s confused, delirious and scared. Physically Lou is the weakest she’s been.

Struggle Street

Lou had a good few days to finish off 2018, which we’re very grateful for.

She’s struggling right now though.

She has no energy, she’s extremely weak and has non-stop nausea.

Mentally she’s in the basement.

She’s very emotional.

It’s difficult to watch when there isn’t anything you can do make her feel one bit healthier.

*sigh.

Personalised Cancer Treatment Options For Louise

We’ve commissioned a number of blood and tumour molecular screening/profiling tests over the last six months, with the aim to source potential treatment options for Louise. Tests include:

  • RGCC
  • mOST
  • Foundation One; and
  • OncoDEEP

Lou’s sister Elysia has been the driving force behind the acquisition of knowledge regarding personalised cancer treatment.

Once Lou’s bloods are elevated enough to continue treatment then the two primary drugs Elysia and I are keen to test are:

Epirubicin Hydrochloride and Everolimus.

Epirubicin is an anthracycline drug used for chemotherapy that has shown up in several tests that Lou’s tumours may have a sensitivity to.  In combination with this, FEC is the only chemo Lou had a positive response with (August 2017). Out of the three agents in the FEC cocktail; 5FU and Cyclophosphamide don’t come up with high sensitivity but Epirubicin does. So Epirubicin should be part of the plan?!?!?

Everolimus (Afinitor) is an antineoplastic chemotherapy drug. This medication is classified as an “mTOR kinase inhibitor.” All of Lou’s tests highlighted the PI3K/AKT/mTOR as something to focus on. We are keen to test this ASAP as well ?!?!?!

potential pathways (that we know of) for TNBC.
Potential pathways (that we know of) for TNBC.

The above two drugs are an initial focus point for Elysia and I  to massage into the coming month’s treatment plan. I know that Epirubicin can be more toxic on the liver but if Lou could handle the drug then Epirubicin in TACE or RCT along with an oral Everolimus programme is a stone we would like to turn over.

Elysis McConkey's Notes on teh desk regarding Louise DeCelis's cancer treatment options
Elysia’s desk of research material…(and J Boy’s pet fish)

The below are recent notes, from Elysia, to continue to understand,  collaborate and discuss with the doctors. Easier said than done.

*Unfortunately we’re still a few years away until someone’s cancer journey is personalised from inception.  It’s difficult to get options like the above into any form of action. Which I do understand the reasoning for. 


Summary or Elysia’s notes:

“Dr Lim once said it is very hard to find who is the bus driver and who is the passenger…   I have gone through all of Louise’s test results and come down to the conclusion that the ‘bus driver’ of her cancer is

  • EGFR (this is overexpressed in RGCC results 45%)
  • Pi3K > AKT > mTOR (this pathway is active in 40% of TNBC patients and was in all her test results)
  • maybe RAS (RGCC 40%) as well

AKT2 / mTOR

  • MOST trial – noted it was amplified – they suggested PI3/mTOR inhibitors
  • RGCC – 45% mTOR
  • FBXW7 – identified in FoundationOne
  • OncoDNA – mTOR treatment associated with clinical benefit

These are all connected along with FBXW7 (a tumour suppressor gene) which is not listed in the diagram.

Everolimus is massive for me, I have been harping on about it for a while (there is also an alternative being Temsirolimus) – both are Akt/mTOR + FBXW7 pathway inhibitors. I have in my notes that they are very strong drugs however all test results point to them. Dr Lim said we should seriously consider trying it.

Epirubicin and Doxorubicin (these were tested on the TOP2A gene alteration which is common in BC)

– both came up in RGCC and OncoDeep as a potential clinical benefit. They are Anthracycline chemos (Epirubicin is the E in FEC which is the only time Louise’s tumour shrunk). Both can have a negative effect on the heart so we would need an ECG before starting.

Others which have always been of interest are…

Pimozide – an antipsychotic drug suggested by Dr Kopic. This also inhibits the mTOR/Akt pathway –  50mg at night – this drug is not available in Australia for cancer use but can be purchased.

https://www.outlookindia.com/newsscroll/antipsychotic-drug-may-treat-aggressive-breast-cancer/1400108

Vinorelbine – Lim said can only be used as a single use drug and is an option he would explore – 82% in RGCC

Ixabepilone – RGCC 82% for taxane-resistant MBC (trials use with capecitabine) and didn’t show up in OncoD. In my notes, i have ‘related to Curcumin/mTOR’

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004658/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3846877/

Gemcitabine in combination with paclitaxel TACE

Erlotinib (not tested yet) – RAS and EGFR pathway inhibitors (EGFR 45% in RGCC)

Afatinib (15% in RGCC) – EGFR pathway inhibitors (EGFR 45% in RGCC) – Afatinib is used to treat EGFR/Her2 positive TNBC

A few questions I would be keen to hear the answers to…

Do they have any ideas to overcome the following? I have been reading up on it and there has been some significant movement in the past month…

MDR (multidrug resistance) – 55% RGCC

MDR1 – 45% RGCC

Is there the option to biopsy the liver if Vogel is in there to see if the makeup of the cancer has changed or if they could do their own testing to see if we have become Her2 or Her1 positive? (RGCC said Her1 55% positive)

Does Herzog do the laser treatment? I am certain he was using it for what has historically been a drug-resistant cancer

https://www.genengnews.com/topics/translational-medicine/new-method-overcomes-cancer-cells-multidrug-resistance/

TP53 – is there any evolution in treatment options for this? It has to do with genetic instability which drives increased evolution of the cancer in response to treatment – or activate expression of downstream genes that inhibit growth and/or invasion, and thus function as a tumour suppressor. Some research has been released in the last month on ‘tumour protein p53’ but I am not scientific enough to be able to understand it.

https://www.ncbi.nlm.nih.gov/gene/24842

What’s happening with Zometa for bone metastasis?

Have they heard of Atrin?

I still have to research these further but they are all in my notes as potential options…

Aromatase inhibitors

siRNA to target EGFR and RNA

Dendritic cell vaccination

Oncolytic virus

Liposomal gefitinib

NK cells

Methylation of FBXW7 –  is associated with a longer overall survival period in lymph node-positive breast cancer patients, although it is also associated with high-grade tumours (DNA methylation is a process by which methyl groups are added to the DNA molecule. Methylation can change the activity of a DNA segment without changing the sequence. When located in a gene promoter, DNA methylation typically acts to repress gene transcription.)

PTEN (15% on RGCC) acts as a tumour suppressor geneFoundation One says PTEN is not present to antagonise PIk3 pathway and to fulfil its function as a tumour suppressor – is there a connection between this and mTOR?”

A Decision Point For The Next Liver Treatment

Louise was scheduled for her third round of TACE today but her bloods have continued to drop. Her platelets are 10 000 as we speak. A normal platelet count ranges from 150,000 to 450,000 (platelets per microliter of blood). So her platelets are 140 000 short of where we would like them to be……..

TACE or RCT?

Lou has had two rounds of TACE (Trans-Arte­ri­al per­cu­ta­neo­us Chemo-Embo­li­sa­ti­on). She’s scheduled for four.

Leaving for Germany I thought TACE was the same as RCT (Regional Chemotherapy). TACE is definitely a form of RCT but they are administered and managed differently.

I believe the TACE we have done so far has been of benefit. After two rounds (half the liver each round) Lou has had some positive response. Her Pleural Effusion (water in the lungs ) has slowed. Her tumour cell activity has also decreased, which means some aggression has been removed from the liver tumour metastasis. As you know, the metastasis in young triple negative breast cancer patients is angry as all hell.

The decision junction we’re at now is TACE or RCT? While there are several different forms of RCT, the one proposed for Louise is; Isolated Perfusion with chemofiltration.

The big question is; which option/facility/doctor provides Lou with a better chance of taking down the tumours? Unfortunately, not ever being able to know the answer to this question makes for a tough decision.

I’m very mindful of changing treatments halfway through, so I want to leave both doors open until a progress scan provides more data on our current position.  We will acquire a liver MRI when her platelets are on their way back up (>100 000), hopefully within a week.

1.) Professor Vogl and Trans-Arte­ri­al Chemo-Embo­li­sa­ti­on(TACE) Of The Liver

Up to 75% of the nor­mal li­ver tis­sue is per­fu­sed by the por­tal venous sys­tem and on­ly 25% is supplied by ar­te­ries. On the con­tra­ry, li­ver tu­mors are supplied up to 95% by ar­te­ries. Hence che­mo­em­bo­lisa­ti­on of li­ver ar­te­ries lead to de­ve­lop­ment of ische­mic ne­cro­sis in the tu­mor re­gi­on whi­le the re­mai­ning nor­mal li­ver tis­sue is spa­red by suf­fi­ci­ent per­fu­si­on th­rough the por­tal venous sys­tem.

The half-life of a che­mo­the­ra­peutic agent is in­crea­sed by hours to weeks through the stop­pa­ge of blood supp­ly.

The procedure as I know it: Af­ter lo­cal anaesthesia, a punc­ture is ma­de in­to the fe­mo­ral ar­te­ry in the in­gui­nal re­gi­on. Doing this, a small fe­mo­ral sheath is usual­ly placed in the ar­te­ry th­rough which dif­fe­rent ca­the­ters or gui­de-wi­res can be in­s­er­ted.  The ab­do­mi­nal aor­ta with its va­rious bran­ches is vi­sua­li­sed. Then a very small ca­the­ter (mi­cro ca­the­ter) is pas­sed th­rough the li­ver ar­te­ry in­to the ar­te­ry supp­ly­ing the tu­mour and the che­mo­em­bo­lisa­ti­on is per­for­med. You’re gi­ven pain me­ds th­rough in­fu­si­on du­ring the pro­ce­du­re.

The cocktail is usually strong chemo agents. For Louise, for both her rounds, she had 9.88mg of Mitomycin C, 101,96mg Irinotecan, 50,12mg Cisplatin. This is combined with Li­pio­dol and Spherex, these two ingredients block the blood ves­sels.

At the end of TACE Louise was placed in ob­ser­va­ti­on for about three hours du­ring which pos­si­ble com­pli­ca­ti­ons can be dia­gno­sed and trea­ted (which she’s never needed). She also had an MRI before the procedure and a CT after to eva­lua­te the suc­cess of the tre­at­ment and to ru­le out a com­pli­ca­ti­on.

This technique allows the toxicity to be >80 times a systemic dose.

Side effects:

Most sources I’ve read say TACE has mi­ni­mal ad­ver­se ef­fects with very litt­le stress for the pa­ti­ent. This, unfortunately, hasn’t been the case with Louise. The side effects for Louise have been severe. They include:

  1. Extreme nausea
  2. Inability to move/comatose sleep, for well over a week
  3. Doesn’t eat and barely drinks = dehydration
  4. Weight loss – up to 5kg’s
  5. Scrambled brain like she’s extremely drunk, these side effects last for two weeks
  6. Key Blood results decrease significantly, apart from the usual side effects and danger this has, it also delays the next treatment significantly
  7. Massive mental hit

The brain issues are likely to get worse with each treatment, based on treatment one and two. Having her mind scrambled for weeks will have a big effect on her motivation and ability to fight.

2.) Professor Aigner and Regional Chemotherapy (RCT) – Isolated Perfusion of The Liver

In the method suggested for Louise, an arterial port catheter is implanted directly into the tumour-supplying vessel during surgery. This enables the tumour to be treated with the chemo agent over three to four days. This is combined with isolated perfusion where the liver is isolated with a catheter system, so the high cytostatic concentration flows through the liver by means of an external pump.

At the same time heat is supplied to the tumour (hyperthermia) and the oxygen content of the blood supplied to the tumour is reduced.

This method is combined with chemofiltration (extracorporeal detoxification which is like dialysis) to remove excessive amounts of chemotherapeutic agents in the systemic circulation. This is done at the completion of the isolated perfusion phase.

This technique also allows the toxicity to be >80 times higher than a systemic dose.

Side Effects:

None of Aigner’s patients experiences the brain issues Lou experienced with TACE and his patients have a much less severe reaction. “95% have few side effects.”

We’re not guaranteed that Lou will have minimal side effects (as his treating team predicts) but I envisage they will be considerably less.

What’s holding us back from making a decision?

  1. We don’t yet know how effective the two TACE sessions have been
    1. An MRI will assist with this
  2. If Lou has had a reduction in tumour size then we should consider continuing the next two rounds with Vogl
  3. The door with Vogl could close if we go with Aigner
    1. I will ask Vogl if this is the case
  4. We would be changing strategies without completing the current prescribed regime
  5. We don’t know if Aigner’s treatments are as effective as Vogl (It’s something we will never know)
    1. I think that they are as effective but maybe I just want to believe this so its apples for apples on the positive treatment output….

Another big ingredient in the decision is our desire to change the chemotherapy agent/s for either treatment choice if the first two rounds of TACE haven’t had a positive enough effect on the tumours in Lou’s liver. This is a whole subject in itself……..one that I will try and explain in my next post….

Click to view in Google Sheets

Happy New Year To Lou’s Precious Village

Happy New Year to Lou’s essential supporters. 2018 was a challenge for us. 2019 will not be any easier, we know that.  We’re a long way from the summit, the air is thin and our packs are heavy. We’ll keep trudging with our eye on the summit and your support in our hearts.

We hope your hard work materialises your own dreams, this year and the next.

Much Love,

The De-Byrnes

Some fireworks from Noah for your trouble……

How Is Lou Doing And How Is Her Liver?

How is Lou Doing? It’s a question I get asked many times a day. Unfortunately for months now I haven’t been able to give a positive response. In most instances I find myself adding to the answer; “she is doing well considering…”

While her physical condition obviously isn’t good, I feel it’s a little more constant than the mental. The mental is burdened with so many factors that make it hard for her to have psychological control.

Even though breast cancer is one of the most common carcinomas and one of the main causes of cancer-related death worldwide. The vast majority (like 85%) of breast cancer patients, will live for more than ten years. And this number seems to be constantly improving, especially for breast cancer patients with a  hormone or ‘human epidermal growth factor’ receptor.

The type of breast cancer bringing the median statistics down is triple-negative.  Triple-negative (TNBC) accounts for approximately 15% of breast cancer cases. The absence of estrogen, progesterone and human epidermal receptor 2 (HER2) in malignant cells reduces treatment options and increases the risk of recurrence and death, especially in the first 3–5 years.

TNBC is super crazy aggressive, especially in young patients like Louise. For many TNBC patients, chemotherapy will treat the disease, which is great because chemo is the “only possible treatment option.”

If your TNBC turns up somewhere else in the body, i.e. it becomes metastatic (MTNBC), Google online sources will tell you that you have a year or less left on this earth i.e you’re fucked.  And if you’re classified as chemorefractory, i.e your cancer doesn’t respond to chemotherapy, well then guess what? your double fucked.

Louise is young, she’s MTNBC and she’s chemorefractory. If you think about this alone, you might be able to grasp the enormity of Lou’s mental strain. You combine this with the punishment I detailed in her fundraiser video and you are living in a nightmare, a nightmare with no dawn to wake you from the terror.

Louise’s cancer is so aggressive that her tumours have had their biggest growth during treatment, especially treatment that affects her holistic health. Louise’s primary liver tumour doubled in size during her IO trial and then grew another 18% under a very toxic systemic chemotherapy session, that was intended to stop its growth.  I truly believe it wasn’t the treatment but the debilitating effects of the treatment and the inability to exercise during these periods that saw such devastating regression.  There are publications that back this theory up. 

So where are we at right now with the liver? You can’t live a day without a liver so this is obviously our biggest concern.

The good news is that her liver is still functioning well. The bad news is that her left lobe has many metastatic lesions on it, rendering about 30% of it affected by cancer. The bad-bad news is that her right lobe is 80% covered in tumours. One of those tumours alone is 14.5 cm’s long. The mass of these tumours combined with inflammation has almost doubled the size of her liver.  This is the source of much physical pain.

These tumours pilfer blood supply and nutrients too.

How does this current condition and its subsequent side effects play out? To be frank, Lou hasn’t been happy for several months. The kids are the only remedy that put the occasional smile on her face. She’s physically and mentally exhausted and she’s incredibly scared. She is still fighting though.

The last two rounds of TACE have been incredibly taxing on her body and mind. It’s painful and heartwrenching to watch. She’s still being extremely brave.

We do need to keep treating the liver however we can’t schedule any more treatments until her platelets increase. Once the platelets rise we will do another MRI which will help determine our next move. Our next move currently consists of two primary options. A big decision weighing on her mind as I type this post.

In regards to liver cancer improvements. Louise had a 7% reduction in tumour volume after the first TACE. The two consecutive TACE sessions have also reduced chest fluid activity along with her tumour tissue “stabilising” and tumour cell “activity becoming less.” It’s a positive that the tumour hasn’t grown in Germany, especially after non-stop growth since early September. It’s still not enough, way too much pain for little gain.

We do have some bigger gains around the corner, I can feel it.

If we talk about the liver exclusively, let alone all the other issues and ailments, how is Lou doing? Well, she’s doing bloody well considering.

That’s A Hat-rick, Three Good Days Of Improved General Health

Louise has had the best three days in a long long time.

She’s battling some lymphedema today which tarnished a reasonably clear side effect run. And towards the end of the day, her mind was carrying the weight of our next treatment move but she looked tip-top and has made some great physical gains since Wednesday.

I’d love to see the positive momentum build before the next liver session. Whatever that may be…….

A Good Day 😊

Louise had a really good day today. 🤗 It’s the best day I can recall since the 11th of October.  Let me just ask Google how many days that is…………………………………. 77. Boy. That’s waaaaaaaaay too long, 77 days is a very long time to feel like rubbish.

Lou had 1.2 litres drained from her right lung yesterday which was a big help in her feeling well.

We’ve just had 24 hours without an ailment bringing us down.  I really hope we can make it 48. 🙏

I’ll post a detailed update on her health over the weekend. Her bloods are still down and we know we have a garden of cancer/tumours on the liver which we’re battling, but I just thought I would let everyone know that today was a good day. 👊🏾👊🏾👊🏾

I am a massive believer that the mind is the majority contributor to the success of any kind. If you’re not feeling well, confident, healthy and happy, the journey is made that much harder.

That is all.

I Just Thought I’d Post This Amazing Image Of The Burghausen Castle

The Burghausen Castle is about a kilometre down the river from Lou’s clinic.

Here a couple more: (click to enlarge)

Yeah, so Australia didn’t even have a building on it’s land until about 800 years after this castle was founded, in 1025……

And the locals will tell you its the longest castle in the world. Go Burghausen!!

A health update on Lou will be posted in the next few days.  

Louise Got Very Sick Very Quickly After The Last TACE

Well, that didn’t go well. Louise went downhill faster and harder than me on my motorcycle.

On Friday after her chemotherapy liver treatment, I made a prediction she would start spiralling on Monday, with the hope it wasn’t too severe this time. Well, nausea and vomiting started prematurely on Friday night. Then on Saturday, we went to emergency because she couldn’t manage her pain. Then after five days of continuous comatose-sleep, not eating and most alarmingly, the delirious state of confusion, slurred speech and incoherent conversation, it was time to get her into 24-hour care. In hindsight, she should have been in professional care since the procedure.

Lou didn’t want to go to mainstream emergency hospital care and I didn’t want to take her to any clinic, so we had a quick family discussion and I bundled her in the car with her pillow and dooner and drove to Burghausen, close to the Austrian border. The only positive of her being so whacked is that I could make use of the autobahn without her breaking my balls.

Six hours in the car and we were at the Medias Klinikum and in a consult with prof. Dr. med. Karl R. Aigner (who I had connected with in October). Then we had Lou on some fluids and overnight monitored care. It was five days overdue but I’m happy to shoulder the poor judgment and responsibility. She’s here now and that’s the main thing.

This morning, they x-rayed her chest to assess her pleural effusion and also took blood samples to pathology with the results due back today.

Do you know I spent a couple of weeks in a hospital far from here, the university hospital in Innsbruck? It was about a month after I met Lou. Yeah, a “skiing accident.” She was still courting me 😉, so I remember talking to Lou on the hospital pay phone. They didn’t have any English stations on the TV and I was in traction for a few days, it sucked. At least we have two rubbish English stations here now. I also remember sneaking out of the Innsbruck hospital and walking a few kilometres along the river to get a McDonald’s soft serve. I was struggling with the hospital food and my jaw was freshly wired. It’s an interesting and funny story, remind me to divulge one day…….. Sorry, sidetracked, back to Lou.

In all honesty, I don’t mind caring for Lou 24×7 but the only medical experience I have is the dozens of time I have been an inpatient. So a few times lately, when she hasn’t budged for hours and I find myself checking to see if she is breathing and warm, I say to myself, “what the fuck is going on? How are we in this position right now and why am I researching on the internet at 1 am to see why her brain isn’t working and if it’s going to recover. It’s a crazy world sometimes and we’re defiantly in the depths of its ugliness.

So the short-term objective is to get Lou well enough to have a family Christmas back in Frankfurt. Lou’s mum Lynda is shouldering the kids care right now in our Bad Humberg Airbnb and Lou and I want to get back for Christmas Eve. Most importantly to make sure Santa comes by that night. Noah can write now so his wish lists on route to the north pole are pages long out of control. We better be there to answer him if a select few of his requests are not delivered on the 25th.

So I sign this post off from a hospital bed, lined up next to Lou’s, while she receives a big bag of liquid food through her chest port. She seems at ease in the comfort of care here. She’s eaten a little today, she’s still talking nonsense but the colour has returned to her face and I believe she’s on a north-east pointing recovery-trajectory.

Where Are We At Right Now? Hmm..

Some quotes from Professor T Vogl I jotted down Verbatim:

“the amount of tumour tissue in the pleura is better, the reduction of fluid is also becoming now less.”

“With the liver, we always have a problem, we treat one area and of course, we cannot treat the whole liver,  other areas are still in activity.  Overall it’s now stabilising more in the liver.”

“If you take the total tumour volume, if you say we do one half of the liver and then the other is still a little active, I think there is some reduction.”

“To me, more importantly, the activity of the cells is lower.”

“The problem in your ribs is not cancer, the pleura is near there”

“Your type of cancer is very aggressive”

What does all of this mean? Hmm.

26 Days In Germany

Louise getting a blood transfusion in the Frankfurt University Hospital

We’re closing in on a month in Germany, I’m honestly not sure if the time has gone fast or slow. Being in a foreign country, a place I’ve never previously visited, a place with much to do and see but it’s somewhat of a blur.

On occasions, you get a minute to appreciate some architecture, heritage, the landscape or some history but mostly you live in a distracted space consumed by the reason you’re here.

The Good: Lou’s health is the best it’s been since arrival. She’s been out of the apartment for small adventures every day since Wednesday. She’s been eating too which is essential. Her brain function and memory have improved out of sight from a week ago.

The Bad: The fluid is building in the chest again. She’s scheduled to have it removed on Wednesday afternoon. Until we get on top of the liver tumours, it’s an issue that will continue to haunt.

The Ugly: The pain. Lou’s got pain in her liver and back. Pain is a constant reminder of the nightmare you are trying to get a reprieve from.

Despite the good, bad and ugly, we’re always determined to make sure the kids are comfortable.  Lynda, Les, Lou and myself all work hard to ensure they’re happy and they are. Noah and Evie are far from their own home, cousins and friends but they are being champions. I’m very proud.

Today we decorated our Christmas tree, it’s an absolute monster of a tree and perfect in stature.

Lou has a big week this week with the other half of the liver scheduled for local chemo/TASE on Friday. Progress scans will also detail where we’re at.

Thank You Thank You Thank You

If YOU donated $1 or $1000, if YOU purchased a book for $50 or successfully bid $10, 000 on the Yacht, the gratitude from Lou and her family is as immense.

As mentioned in the auction booklet, EVERYONE’S contribution is a true testament that the whole is greater than the sum of its parts. Believing As One. Stronger As One. Succeeding As One.

There was one single detail that would have improved the night and that would have been the presence of Lou. None the less, the pressure cooker of love was felt across the oceans and into Europe, buoying Lou when she’s needed it most.

Louise and I both received numerous messages mentioning the energy that was present in the Greenwood on Thursday night. The glimpses we saw of the crowd streamed through Jon’s phone was astounding. Simply amazing.

Thank YOU so much for attending the party. For knowing that Lou wasn’t going to attend but still being there with bells on. YOUR friendship, the respect YOU have for her determined battle, YOUR unwavering support will continue to be the nucleus that moves her toward the possibility of remission. Thank YOU.

YOU have afforded Lou to be in Germany, with her family, to receive treatment options not available at home. YOU are giving her the best chance of winning and helping her achieve her biggest goal, to be a mum.

THANK YOU, THANK YOU, THANK YOU!

A special thanks for contributing to the event’s production:

  • Elysia McConkey: Coordination and ongoing involvement
  • Ginny + JulesTimmins: Managing the very successful auction and its 300 items
  • Brigitta De Laet: organising auction items
  • Judy Smart: Helping acquire multiple items
  • Michaela Francis: Finance
  • Nikki Hodgman: Managing the physical event
  • Nicole Watts: Event collateral design
  • Jon McConkey: Being a great MC
  • Rob Ward: Auctioneer
  • Adam Khamis: Videos production
  • Damien G from Hire Intelligence: 50% of screens and equipment
  • Anthony Reed:  FOC Install and pack down of all screens and AV
  • Lincoln Baker and Alex Taylor: For spinning decks and making tunes
  • Wilso: The Greenwood

I’ve taken the liberty of one final reciprocal thank you, passed on from YOU to Lou; thank you for keeping up the fight. Thank you for maintaining the rage, for amazing your village with your strength, courage, tenacity, grit and determination to keep punching while taking heavy blows. For putting one foot in front of the other when all the forces are trying to drag you down.

Thank you for being something that Noah and Evie,  your village and the world will forever be proud of. Everyone knows that you are really struggling right now but keep that spirit burning, draw upon the village’s energy to do so.

The village loves you and the world needs you for many days more.

Danke Schoen

TODAY IS THE DAY – PARTY FOR LOU!

Good morning Australia 🇦🇺. Lou had another 1.5 litres of fluid removed from her right lung yesterday. That’s twice in seven days. 😩

The good news is that she had her best day today since we have been in Germany, and we’ve been here for three weeks already……..I know right.

Hopefully, this means she can skype to all 464 (and counting) party goers……

It’s midnight Wednesday here in Bad Homburg, 10am Thursday for you. I hope you’ve polished your party shoes and got your drinking hats on. 💃 🕺🏽

I’ll continue to update this page with content before, during and after the party MOFO’s.  Everyone loves to party.

481 TICKETS SOLD 🙌🏽

Welcome: Jon McConkey, MC

Main Speeches: Jon McConkey, Dominic Byrne and Louise DeCelis

Auction:

A Kick In The Face When You’re Down

So Lou’s right lung is full of fluid again. If you look up side effects for “pleural effusion” you will get:

  • Shortness of breath
  • A dry cough
  • Pain
  • A feeling of chest heaviness or tightness
  • Inability to lie flat
  • Inability to exercise (or move in our instance)
  • Generally feeling unwell (Understatement)

She fits that textbook description to a tee.

We received a big blow today with one of Lou’s treating doctors delivering his candid opinion on Lou’s situation. Dr Arhnold said that Lou’s liver is not healthy enough for his treatments. He said that she should be in palliative care. Ouch.

He said the large liver tumour and tumour cells are next to the right lung, this would be causing the fluid issues. His radiologist took me through the MRI’s and said that 80% of Lou’s right liver lobe is covered in metastasis.

He said that her brain function and memory issues are a result of the compromised liver and also the chemotherapy. The tumours, low bloods, poor oxygen levels, fluid in the chest and the chemo drugs is the reason she is so unwell. That all makes sense but it’s a real blow to have a Doctor express that his treatments won’t help her.

Dr Vogl still wants to help. Vogl will remove the fluid at 1pm tomorrow. It’s a painful procedure so Lou’s not exactly excited about it. He plans to do the other half of the liver (Transarterial chemoembolization – TACE) on the 14th.

Nothing much positive to add today. It is what it is.

Lou Is Really Struggling

So we’ve finally moved into an apartment, we’re in a beautiful town called, Bad Homburg. It’s a close distance to the two clinics we visit daily. The kids now have play space with neighbouring parks. Hopefully, we get a little time to explore and familiarise ourselves with the area. It feels very German. It’s beautiful.

Lou is really struggling. The fatigue is next level. She’s been like a hibernating bear since the 18th of October. Non-stop sleep and every movement a struggle. Endless nausea for months now.

She’s in the depths of her biggest emotional battles. 😞

We’re only doing a fraction of the treatments we’d hope to be doing here in Germany. Some of the infusions I was very interested in that include ingredients like curcumin, resveratrol and 6-Shogaol, she hasn’t had since the 20th of November. She hasn’t had regional hyperthermia since the 22nd. For the last seven days, Lou has only been able to have a cut-down treatment regime of substances to aid her recovery.

Even though the TACE (regional chemo) is liver-specific, her body seems to be struggling with it.

With her liver compromised along with “chemo brain,” her mind and thought function is the worst it’s been. It’s like she has dementia.

I’m worried that the fluid is building in her thorax again, I’d be surprised if it’s not. She seems to be displaying the same symptoms.

Hopefully, she’s well enough to get the other half of her liver treated with Professor Vogl this week. It’s a real double-edged sword because we want to mitigate the liver tumours to give us time to focus on the body but it’s more than likely she will remain extremely unwell.

*Sigh.

Our First Unplanned Trip To A German Hospital

That’s not a bag of urine, beer or ice tea. It’s a litre of fluid drained from Lou’s right lung. The reason she hasn’t been eating and has had 24/7 nausea.

The tube was still attached in the pic, and the bag drained another .5 of a litre making it a rounded 1.5-litre, collected through thoracentesis. A procedure in which a needle is inserted into the pleural space between the lungs and the chest wall to remove excess fluid from the area.

The Online Auction Is a Go!

9 more sleeps until Lou’s party. We’ve sold 410 tickets to the event, there are 139 auction items online with many more to be added.

Products are open for instant buy and bidding.

(yep, click on the hammer)

Lou’s village has spoken.

No wonder this is Noah’s favourite song:

Crank up the volume and listen to this song by George Ezra. Noah sings his little lungs out to this. He loves his mumma more than anything or anyone in the world.

Guten Morgan

It’s only 8pm in Frankfurt but the kids and Lou have been out for an hour. It’s blissfully quiet. Just that very faint hotel murmur, humming somewhere unidentifiable in the background.

I’d be lying if I said I didn’t want to be waking in my own home right now, getting Noah dressed in his budgies so he can dominate the flags at nippers. Then rushing home to sneak off to the MX track to spin a few laps. Returning for one of McConkey’s prawn paster Sunday specials.

I’m happy here though. The kids have settled in and have been sleeping to the central European standard clocks and not their own messed up time that was causing me some torture.

We’ve sold 397 tickets to Lou’s event, amazing really. Do you think we can get to 500 in ten days time? If you haven’t purchased a ticket and live near Sydney, pull the trigger. “Chk Chk Boom” – Clare Werbeloff May 2009

Lou and I are obviously not going to make her very own party. There are some positives in this.  If Lou was home, she’d be under self-imposed pressure to attend. If the party was on any of the last four or five Thursday’s. I dare say she wouldn’t have made it. Being a few kilometres from the Greenwood, in bed, would have upset her.

Lou would have wanted to speak to the audience also. This would have been an unneeded burden. Her anxiety from certain medications along with the constant fear that comes with an “incurable disease” may have been too much. Being in Germany has removed her from any planning and event pressure. She will be sad she’s not there. My dream is to have a remission party that she can dance at, in full health.

We know you will party and party hard on her behalf. As I have mentioned, YOU, are the reason we are here in Deutschland.

Lou is really struggling right now, physically and mentally. She’s in a rut proving difficult to get out of. I documented a brief post with some detail here.

I managed a quick trip to the zoo with the kids on Thursday, It was fun but nothing on Taronga. Noah and I hit the ice together this morning (wow, that doesn’t sound right), I’d prefer to be putting in some turns on some skis but a skate is pretty fun.

Evie Byrne at the Frankfurt Zoo, easting an ice block when it's about 3 degrees.
Evie eating an ice block, not my choice of snack at 4 degrees…..
Noah Byrne at the zoo in Frankfurt Germany
Noah and one of his new buddies.
Noah Byrne and the Frankfurt Ice Skating Park
Noah’s little penguin helping with some stability on the ice
Evie and Noah Byrne on the way to the indoor pool
Just so you know, I don’t dress Evie like this when its 6pm and zero degrees. It’s just how she rolls.

It’s amazing how much you can love your own children. A limitless level of some sort. xx

 

Current Treatment Regime – Frankfurt

The objective is to achieve four individual regional chemo liver sessions (half the liver per session) with Professor Vogle between November and January.  In between these sessions, receive as much complementary therapy as possible.

Univ. Prof. Dr. med. Thomas J. Vogl

Transarterial chemoembolization/chemoperfusion; Abdomen Rotation Vom. Puncture of the femoral. Introduction of a 5F lock. Careful positioning of a pigtail catheter. Incorporation of a cobra catheter. 9.88mg mitomycin, 101, 18 mg irinotecan, 50, 2mg cisplatin, 5 ml Lipiodol occlusion, 180 mg EmboCept. Other: 3mg Granisetron, 20mg Dexacortin, 100mg Pethidine

Dr. med. Jürgen Arnhold

Curcumin: Is a substance found in the spice turmeric and has long been used in Asian medicine to treat a variety of maladies. It has antioxidant properties, to decrease swelling and inflammation. Inflammation appears to play a role in cancer.

Shogal; Is a biochemical produced during drying and cooking of ginger roots. It is active against tumour stem cells in concentrations which are harmless for healthy cells. The raw ginger extract can inhibit the proliferation of cancer cells

Resveratrol;  A dietary polyphenol derived from grapes, berries, peanuts, and other plant sources. Resveratrol affects all three discrete stages of carcinogenesis (initiation, promotion, and progression) by modulating signal transduction pathways that control cell division and growth, apoptosis, inflammation, angiogenesis, and metastasis.

Photodynamic Therapy: A photosensitizing agent is injected into the bloodstream. The agent is absorbed by cells all over the body but stays in cancer cells longer than it does in normal cells. Approximately 24 to 72 hours after injection. When most of the agent has left normal cells but remains in cancer cells, the tumour is exposed to light. The photosensitizer in the tumour absorbs the light and produces an active form of oxygen that destroys nearby cancer cells.

In addition to directly killing cancer cells, PDT appears to shrink or destroy tumours in two other ways. The photosensitizer can damage blood vessels in the tumour, thereby preventing the cancer from receiving necessary nutrients. PDT also may activate the immune system to attack the tumour cells.

Dr Gerhard Siebenhüner

IPT (Insulin Potentiation Therapy); Normally this therapy is done with a low dose of chemotherapy. However, because Lou still has chemo in her liver from the TACE, this process helps the chemo in her body do its thang.

DCA Infusion: The aim of this drug is to kill off cancer cells, while not harming healthy cells. DCA turns on natural apoptosis (cell death) in the cancerous cells. It also blocks the process by which glucose is used by cancer cells, thus removing their energy source and starving them. Without blocking the glucose of healthy cells.

High Dose C:  Vitamin C breaks down to generate hydrogen peroxide, which can damage tissue and DNA. The new study shows that tumor cells with low levels of catalase enzyme activity are much less capable of removing hydrogen peroxide than normal cells, and are more susceptible to damage and death when they are exposed to high doses of vitamin C.

Artesunat Infusion:  A substance from the annual mugwort, has a destructive effect on rapidly growing cancer cells. Tumour cells have much higher iron concentrations than healthy cells due to their extremely accelerated rate of cell division. Artesunate gets into the heavily iron-loaded cancer cells, spontaneously large amounts of so-called free radicals are released, which damage the cancer cells and finally destroy. Recent studies show that Artesunate interferes with the neovascularization of the tumour. In this way, the tumour cells can be cut off from the blood supply and starved,  this reduces the possibility of metastasis formation.

Extracorporeal Regional Hyperthermia EHY-RG: This involves artificial heating of the affected areas of the body to temperatures above 40.1 degrees Celsius. This is done by irradiation of electromagnetic waves. The body surface is protected by water cooling of the overlying irridation head. Heat can harm or kill cancer cells by damaging proteins and structures within the cells. Heat also damages blood vessels inside of tumours and causes less blood flow to the tumour, which can help slow its growth.

The above list of infusions and hyperthermia is alternatively managed by Arnhold and Siebenhüner and worked around Vogl’s TACE

  • Note added in December: We were not able to continue with all of the above-intended treatments. Lou’s liver is not healthy enough. We have only been doing a reduced amount of infusions to aid recovery. 

A Win Is A Win, Even If It’s Small

A small win with a ling way to go.

Lou is still very unwell but we had our first small win yesterday. Her big tumour on her liver that has been growing uncontrollably has shrunk by 5% in surface area and 7% in volume. This occurred over a seven day period.

It is a small win and hopefully validation we are doing the right things and moving in the right direction. We haven’t had any good news since a slight decrease in the tumour in September last year, fifteen months ago. So we need to take the win and use it as motivation and reward.

It’s such early days, there can be fluctuations and I have a small worry that the cancer takes a hit and builds resistance. It’s hard not to have some negative thoughts after such a shit journey.

But today it’s a win. And we’ll work hard for another consecutive win. We’re due for a little success.

I feel like we’ve earned it.

Fick Krebs!

We're nit having much success but we are still shooting

Lou’s second round of liver treatment scheduled for today was postponed until the first week of December. She’s been extremely unwell since we arrived, with little to zero energy. Her white and red blood cell numbers are down, they’re a tad high for transfusions but low enough to keep her on struggle street.  She’s fatigued and unhappy. Yep, Fick Krebs.

We’ve been dealing with three doctors  and they’re all very candid when they say things like, “it’s serious” or “Louise’s situation is very critical.” The size of the tumours, the number of lesions and the swelling of the liver is very concerning.

While we missed today’s primary treatment, we have been doing complimentary therapies every day this week and we will continue to do them, indefinitely.

We will be in Germany for a minimum of eight weeks. We’ve found a place in a nice town called königstein, it’s the town that Lou will continue to get the majority of her daily treatment. We will inspect the little Deutsche dwelling on Saturday and if the patient gives it the thumbs up, we’ll be in on Sunday.

It’s been one of Lou’s toughest weeks. The positive is that today has been her best day in seven days.  I truly believe we are in the best location to turn things around.  We’re working on making tomorrow a better day again.  Peace.

 

Deutschland Update

It was a very long journey door-to-door. Lou got here as good as we’d hoped and the kids were absolute champions. I couldn’t have asked for more.

We’ve been here for three days. She’s had one targeted treatment session on the liver with another scheduled for Thursday.

She starts some full body treatment today as well.

Lou isn’t feeling that well but she’s here, the family is here and we are doing all we can to get back some control.

Fick Krebs!

RCT (Regional Chemotherapy), The Objective Is To Buy More Time

I’m attempting to talk about RCT, I think you’ll find it hard to comprehend while Evie is busy “on the phone.” 😂 I do pretty well at staying on track. (you’ll see her walking around in the background “talking to her cousin Billy” – classic)

Hey Evie, the phone is upside down!

I think this next video is a great visual of how RCT works, along with some of its applications.

Stories like Nada’s also give you the confidence and motivation to aid a decision. We know that Lou may not respond in any way as Nada did, but we will know if she responds and how, this very month.. ………Gotta be in it to win it…..

The two videos were created by Brian Hunt, Nada’s husband. I’ve been in contact with Brian for some time, to share our stories. Nada was treated at a  Clinic in Burghausen Germany, called Medias.  I had some direct contact with Prof. Dr. med. Karl R. Aigner who is a pioneer in the field of regional chemotherapy and heads up the clinic. We really liked him. We ended up prioritising Profesor Vogl but Aigner is definitely a sound option.

Elysia and I have been talking to patients and doctors all over the world since August this year, a bit like obsessed crazy people. While we’ve been perpetually prioritising; the time, the situation and conversations naturally massage your list of options into order. When it feels right to move, you move.

Our Options In Australia Are Running Pretty Thin

It’s the first week of November, this is the week that we were meant to be reviewing the success of the Immunotherapy (IO) trial. The original plan was to schedule the scans and decide if we were to continue with the trial or not.

Well as you know the cancer snuck up behind Lou and bit her on the arse, catching us by surprise. Cancer does what it wants with concern for absolute nought. We always new IO was a long shot, a 20% chance of success to be exact. However, we got complacent and assumed that the cancer may regress slightly, slow, or if it did grow, it would be just enough to force a consideration on an alternative treatment.

Didn’t we get caught napping? The cancer grew a fucking garden in her liver in a measly six weeks. It’s like you’re running for the corner post because a gap has opened up in the defence and a big burly prop is tying his shoelace in the shadows, he’s just out of your peripheral. Smack! Lights out, you’re on a stretcher.

We’re out of options in Australia. Elysia and I have been trying to get into see Steve Rosenberg with no success. He’s considered to be the godfather of cancer treatment. Out of all the treatment options, adoptive cell transfer therapy (ACT), is at the top of my list. This is a treatment whereby they find the soldiers (Tumor-Infiltrating Lymphocytes or TIL’s) in your body that are having a crack and build an army out of them. The process uses the TILs that specifically target tumour cell mutations to see if they can shrink tumours. The selected TILs are grown into large numbers in the laboratory (millions) and are then infused back into the patient to create a stronger immune response against the tumour.

I know the ACT process takes three to four months and Lou would have to be fit to travel. She would also have to be off all therapies for 30 days prior to resecting a lesion to get the TIL’s out. Anyway, Rosenberg isn’t taking any international patients. I’ll keep trying though. Hey, Steve, are you there?

I think our next best option as it stands is Germany. They seem to lead the charge with personalised treatment therapies. It’s funny, I’ve given a lot of presentations in the digital and online sector about personalizing individual brand experiences and how this can be done online through the use of data. Well, it’s very similar in the medical world and probably just around the mainstream corner with cancer.

Personalised cancer treatment is a move away from a ‘one size fits all’ approach to the treatment and care of patients, using genomic and molecular screening to utilise target therapies to achieve the best outcomes and better manage patients’ health. We are all very unique so it makes a lot of sense.

Many people say that Australia is as good as any county when it comes to cancer treatment and the quality and experience of our doctors. I was always unsure about this as I continued to read and educate myself on treatments and options. I have only recently come to the conclusion that we are as advanced but it’s in a very narrow, ‘racing blinkers on’ kind of way. When it comes to traditional medicine i.e. chemotherapies, radiology, surgery and perhaps access to new IO trials etc,  we’re up the front of the innovators and early adopters pack. But the ignorance and institutionalised approach is simply our medical practitioners operating within their guidelines.

I guess it’s like skiing in Europe, you can ski wherever the hell you want, there are no warning signs, no barrier ropes and no backcountry patrol. In America and Australia, there are ropes, signs-on-signs and rules governed by more rules. And I do get it, if you push the envelope in the European backcountry, in new terrain, then the risks are high. But the exploration and progression are much more advanced too, there is more opportunity, more powder stashes, more cliffs to huck. Their medical field seems to be similar, they’re pushing the boundaries with more haste than we are.

Elysia and I have been researching and talking to a plethora of practitioners in many countries since the fifth of August. We’ve had to dial up the prioritisation in the last two weeks as Lou’s cancer has reared its ugly head. I just want to bite that fucking head off. Anyway, it’s looking like it could be “guten morgen” central Europe, “hier kommen wir.”

I also like that Germany is a stand out with the use of holistic integrative treatments. Something Australia sucks at, our medical system doesn’t even try. As I have mentioned before, there is a massive divide between non-traditional and traditional medicine. Get your act together Australia, you will save more loved ones. Please note: The oncology, the doctors, the hospitals and support staff we’ve had has been tip top, every time. Absolutely stellar.

The reason why Lou needs advanced personalised treatment is that the ‘one size fits all’ cancer treatment train Lou hopped on has not worked at all. Nine out of ten people that get on the breast cancer treatment train have success. Options are limited for the <10% that learn the hard way of being refractory to traditional treatment. You’ve just been tortured with your mortality on the line regardless. Sucks to be you alright.

I always said that if we had a preferred option that would extend Lou’s life, even a life extension for a short period of time, then geography or money should not act as friction towards the decision. I stand by this. Go hard, strive to win and pick up the pieces later.

Louise, Dom, Evie and Noah in the pool

Two Hours On My Shrink

I just spent two hours at the track and I’ve reset my brain.

I know some people, actually a lot of people, probably wonder why I participate in action sports that come with a high risk of injury. Especially now that I’m far from the reckless age of a teenager, and double especially that my wife’s outcome with stage four cancer comes with uncertainty. Just so you are aware, I do wonder about my risky interests more than you.

I have always been addicted to the substance released into the body through excitement. Adrenaline. Some may think it’s audacious behaviour, perhaps negligent or downright stupid. Of course, you’re welcome to your opinion.

I do think there is a blurred line between the pursuit of seeking intense experiences without regard for physical risk, verse activity that has a high level of danger even though you do all within your power to keep your limbs intact.

So, my ride today: Motocross would be arguably one of the most physically demanding sports on the planet. In my current state of fitness, riding at the threshold of my ability, I have about thirty minutes before muscles start to pack it in and I need a recovery period between sessions. For that thirty minutes, I am in a mentally clear state and while my heart rate might be through the roof and lactic acid is ballooning all limbs, I am emotionally neutral. Isn’t that what people aim to achieve through meditation?

Dominic Byrne post about thrill seeking and action sports

Why do people meditate? To reduce stress, anxiety, depression and pain. They do it for well-being, psychological, neurological and cardiovascular benefit. Extreme athletes professional or recreational go hard for the same reason, even if they are consciously unaware and self-medicating ignorantly.

For me, it’s a combination of getting your buzz-on and concentrating so hard your mind has to be 100% clear, bar the exact moment. If you don’t get that front wheel in the deep rut entering the turn and your balance not weighted correctly, you will fall off. You’re thinking of nothing besides entering and exiting that corner. Because if you fall off you’ll hurt something.

On approach to a jump, if your brain hasn’t matched the distance you need to be in the air to the speed of your bike and you end up short or long, you’re a very good chance of eating dirt. Throw thirty other riders on the track, perpetually varying conditions and the power of hundreds of horses under your ballbag and the intensity is intoxicating. All of those horses at your disposal at the flick of the wrist, you have no choice but to “meditate.” Mediate or get a lift from the track in an HCF funded white van with flashing lights.

I’ve had to retire from one-off thrill seeking events that are a probable bad ending. The physical disregard I mentioned earlier. I’ve done this reluctantly, but your age and precious offspring become a priority. However the ongoing desire to progress at a sport, MX, skiing, skateboarding or whatever your poison, the combination of skill, concentration and risk will never leave you. Participating in these sports is a basic need, not a compulsive behaviour, I don’t doubt this one bit. It’s meditation, medication and an expensive session on the couch, all rolled into one therapy that works better than any other treatment.

Think about how powerful those endorphins and adrenaline are and why they’re so addictive. You can get hurt playing footy, even break something and not even realise until the 80-minute whistle sounds. That internal drug is stronger than morphine less expensive and good for your health, fact. For the extreme sports ‘junkies” and contact sports participants, science would prove our brains flood more dopamine during activity than the safe and conservative. That feeling of pleasure will always have you going back for more.

Dominic Brrne Motocross and action Sports

The overcoming of nervousness and fear is like an emotional reward, it leads to feelings of well-being and positive psychological outcomes, a constant sense of achievement. I honestly don’t know if I am addicted to the biochemical reaction within the brain that leads to that epic state of joy, or the activity itself.

I won’t grow out of it, it’s in my DNA. It’s a matter of minimising serious risk but having enough fun to clear my thoughts, reset my brain, look forward to the next session and enjoy living. Unfortunately, I will break another bone or two in the years ahead of me, I don’t want to but it’s inevitable. I hope to all the gods it’s never serious.

SAVE THIS DATE: 6 DECEMBER 2018 I 6PM I GREENWOOD HOTEL

Remember those wild Thursday nights in the late 90’s, early 00’s at the Greenwood Hotel? I sure do. We’re having another one, all for Lou.

Put the date in your diary now. Let’s make it a sellout.

While all the details are to follow, if you or anyone you know can source an auction item please contact: Ginny Timmins: donations@louisedecelis.me or +61 404 033 237

We’re in the process of firming up the finer details of the party but your ticket will cover food, a DJ or band and a quantity of drinks TBA. Get in early and buy a ticket today.

Buy tickets for LouiseDeCelis.Me

Treatment Position

Lou is officially off the trial as her primary liver tumour has doubled in size and she has more lesions.

Her three Aussie Onco’s advise we start chemo on Monday (gemcitabine and carboplatin). The positive’s are:

  • We don’t have a better option right now
  • It is a combination that has worked for TNBC patients before and its a class of drug Lou has not previously tested *except a single round of carbo in Sept last year
  • Gemcitabine (one of three chemos) came up in the RGCC test as a drug that Lou may be sensitive to
  • We can change tact and come back to this if we prefer another option in the coming days
  • We should be doing something over nothing
  • We are off the trial so we can do all of Lou’s complementary treatments (get her back on the disciplined health wagon)

The Negative’s for me are:

  • Lou may not handle carboplatin (*hospitalised once before)
  • Lou is so far chemorefractory and chemo is simply horrible
  • I don’t like the fact we are meant to stay on this cocktail for three months before assessment

We’re still waiting for Foundation One and Onco Deep results to potentially give us direction. We’ve got a heads up that the Foundation One may not offer anything fruitful so we’re hoping the Onco Deep may.

We have four other practitioners we’re in conversation with, some of these leading to potential options that we will continue to pursue.

The Immunotherapy Trial Didn’t Work

The path we were on has lead to nowhere. We are in no better position than the original diagnoses in June 2017 or learning of the disease spreading in August. In fact, our situation is much more inauspicious. A little draconian I know, but that’s how it is.  

Due to an ongoing adverse reaction to treatment, plagued by pain and suffering,  we were forced to have scans earlier than scheduled.  Scans always lead to more scans and scan results for us are a punch in the nose. A punch that makes your eyes water, your vision blur and head pound.  

Lou has more tumours on her liver. The tumours that were already there are much larger. The primary tumour has doubled in eight weeks.

We’re off the trial because it’s not working.

We’re looking for the next best potential solution and may start something as early as Monday.

We anticipated a couple more weeks before we got to this dead end. It does give us more time to activate the next phase which is a win. Whatever that phase is.

There isn’t anything positive to say today. I’m unapologetic because it’s ok to be on your back. As long as you get back up. We had short odds of the trial being a success and we were mentally prepared for it.  We weren’t however prepared for the relentless, unforgiving assault we’re under by Lou’s mutating cells.

We need to lick our wounds and regroup, find a new train line and stoke the engine. Lou’s going through the process of accepting the current situation, a situation harder to digest than a bucket of sand.  We all know she will bounce, she always does.

Onward and upward.

louise decelis on knees but not giving up
Down but not out, just having a breather…

 

To Be Honest, It’s Been a Shit Month

I was just looking at my calendar and thinking, we’ve had a bad run. Yep, Fuck You Cancer, you’re making us work for it. Lou’s only had a few good days since 10 September.

It’s mainly the Paarp pills that are causing severe fatigue, nausea, anxiety and pain. It’s a real kick in the face when you’re trying so hard.

I jotted down the words that best describe cancer and put them in a word cloud, unfortunately, Lou’s last five weeks can be summed up here 👇:

what are the feelings you get with cancer?

We’ve got many conversations in play with some of the best practitioners all around the world. We have some molecular screening results due back next week. And we are not taking a step backwards in the fight.  So we’re due for some wins to fall our way, and they will.

The best positive is Lou had a few consecutive days in good form for our week in Byron with the DeCelis clan and catching up with some of my family. So Cheers to that.

Sandakan Death March

Dominic, Geoffrey and Tristan Byrne, Borneo Coast to Coast. Sandakan Death March.

11/October/2018

In two weeks, if Lou is in satisfactory health with her current treatment plan, I’m going on a journey. My dad, brother and I are going to be rafting, trekking and bike riding The Borneo jungle, Coast to Coast.

When cancer becomes your life, it helps to relate other peoples struggles to your own. There is nothing like peoples experience of war to remind us of how fortunate we really are.

The Sandakan “death march” remains the greatest single atrocity committed against Australians in war. I’m still struggling to get my head around it.

Geoff and Tristan Byrne, walking, Training for the Sandakan Death March Walk.
Dad and Happy in training on the Newcastle coastline. Good to go!!

I will add more content to this page to in the coming weeks. That’s the plan anyway……

22 October 2018

Unfortunately, I won’t be going to Borneo this week. While Lou is still insisting I go, others have made the decision for me. Maybe another time.

 

The Little Ratbags are Happy, I’m Happy

So this is me on Sunday morning (no makeup), it’s early, the sun hasn’t even graced us with its presence. I’m 41 and still get excited about the day ahead when I know it’s going to be fun. Evie and Noah are asleep, I do want them to wake but I remain very still as I flogged them the previous day with non-stop action. Noah has been sleeping with a smile on his face. I’m tangled up in arms and legs, which I love, a nightmare for some but a happy place for me.

A primary goal of mine with Louise’s cancer has been to minimise disruption for the kids. It’s come at a financial cost but to see them happy is extremely fulfilling. I am proud of this. It’s important to feel like you are achieving in some areas at a time filled with consecutive bad news. Lou and I, with the help of family and friends, have nailed the management of our precious little munchkins.

Evie is still oblivious to the current state of affairs, she’s too young and naive. Noah is very well aware of what is going on. He does at times get emotional and momentarily angry at his “mumma” about the situation, which is his way of expressing his frustration. He’s genuinely concerned that she’s not always present and healthy and that their future together isn’t guaranteed. Lou hastily turns his upset feelings around by pouring some love into him.

Lou’s had a horrible three weeks, one bad day after the next. You have to sore to the sky and look down with perspective though. Lying here with the little ratbags, disappointed their mum isn’t here with us right now (although the bed is too small where would she sleep?) but still appreciative of my fortunate life that has been and that still is.

I’m on a best mates farm when he isn’t even in the state. Noah’s hanging with one of his besties and I his parents. I’ve borrowed motorbikes for the kids from another mate. Today we’ll be hosted at a good friends house, so the kids can ride horses, eat ice creams, breath the county air and simply have fun.  The kids are nothing but smiles, all weekend.

Sure I still think about the reality and the enormity of the current shit-show we are in but when the kids are smiling, we’re smiling.

When Noah wakes the first thing he says is; “I had the best dream Dadda,” and proceeds to tell me about all of these tunnels and slides that went down, around and underneath the house. It actually sounds pretty fun, I’m a little jealous. Evie is hungry.

We’re up and at’m.

How To Beat Metastatic Triple Negative Breast Cancer

So you want to be cancer free, what are you doing about it? Minute by minute, play by play?

You need to imagine your success, visualize what you want, feel it. You must be focused and know exactly what you need to get from here to there. You need to make your goals attainable, broken down by the day if necessary. You need to execute. You should have started already.

What are you doing right now to make your primary end-goal happen? What are you doing to keep this cancer at bay and aim for NED (No Evidence of Disease)?

To be honest, I don’t have a solution that will guarantee your success with metastatic, triple negative breast cancer. I so wish I did. The truth is, no one does. My personal goal is to collaborate with Louise and multiple professionals,  formulating the best strategy and action program that helps Lou defy the odds.  A very comprehensive holistic approach that leaves no stone unturned.

The six big pillars that are going to extend Lou’s life, defy the odds and have her present for Noah and Evie’s major life milestones are; Mind, Exercise, Diet, Professionals,  Contemporary Medicine/Treatment, Traditional Medicine and CAM (Complementary and Alternative Medicines.)  All packaged with the right amount of each ingredient, at the right time.

1.) Your Mind

You can’t win anything if your head isn’t right. Whether it’s sport, academia, corporate or social. You simply can’t progress if your not motivated, mentally disciplined and have a will to win. Cancer is no different. In fact, in many cancer cases, just like our own, the bookies would have you at an outside chance more than most underdogs in a sporting event. So the mind is more important than that of a professional team-captain in a grand final. Your mental fitness is the most important ingredient to beating cancer.

After speaking with multiple people that are beating their odds, their mind is undoubtedly the winning factor. It is a factor hard to quantify but essentially inherent.

You need to find the right triggers that help you overcome the shock, fear, anxiety, grief, trepidation and uncertainty that’s dancing around you, elusive and unpredictable. You need to own the demons, don’t let them own you. Like any onerous accomplishment, it’s easier said than done, a broad holistic approach will aid your success.

You will have many days you can’t control, plunging into darkness, uncontrollable tears and periods where you can’t see the light. In saying that, by mastering your mental fitness you will be able to find ways to bounce back from despair more quickly, limit and sometimes avoid the black clouds.

2.) Exercise

Many studies suggest that breast cancer patients who exercise daily survive 50 per cent longer than those that don’t, now that is a bloody good incentive to get the heart pumping and legs dancing yeah? There are more medical reports being produced this month that link breast cancer to inactivity.
The mind plays a big part in your body fitness, they go hand-in-hand.

While I have you here, can I just repeat what I said; breast cancer patients who exercise daily survive 50 per cent longer than those that don’t. There are multiple reasons why this is the case (many are unknown) but I just gave you one reason that doesn’t need any supporting material, you will live longer. Exercise, do it daily and do it well, no shortcuts or half-arsed efforts.

What is Nike’s a slogan?

3.) Nutrition/Diet

Here is another primary factor linked to the previous. Find the right diet that has the most success with your cancer. A lot of people will say an 80/20 diet elasticity rule is good enough, so you have flexibility and some enjoyment in food and drink. My personal opinion is that we’re talking about your life so if it were me in the cancer seat, I’d be military disciplined. No cheeky rewards. No sneaky tastes. Rock solid.

I can’t tell you what diet will be best for you and your condition but there are some obvious disciplines that I believe you should follow.

Many people believe that some cancers are often caused by toxins. Toxins in the environment and toxins in our food. Whether toxins cause cancers or not, consuming toxins certainly wouldn’t aid your chances at defeating the big C. Especially when you need every fighting cell to be floating like butterflies and stinging like bees.

There is nothing good about sugar and processed foods. As tasty as they are, there is only a long list of negatives. High levels of acidity also can’t be good, with many reports detailing that cancer thrives in an acidic environment.

Whether you are a very institutionalIsed medical practitioner, a far-fetched witch doctor or someone in between, all advice says your health and immune system needs to be in the best fighting chance for prescribed cancer treatment to work. So the answer is to stop the build-up of refined sugars and acid levels in the body while simultaneously throwing superfoods down the hatchet.

To overcome the acid issue, it’s imperative that the body is more alkaline. One of the best ways to increase the alkalinity of our bodies is a massive focus on vegetables and raw foods. I’m afraid you’re going to have to empty the pantry of refined sugars, grains, white bread, pasta, soda, coffee and all processed foods. Gooone.

Replace them with as much green food and as you can along with nuts, sprouts, avocado, lemon, limes, whole grain foods such as spelt buckwheat, quinoa, rice, beans and lentils. Wild fresh fish is good too.

Go hard on chlorophyll foods. One of the most alkalizing foods to incorporate into your diet is chlorophyll. Chlorophyll is the substance in plants that allows them to absorb light from the sun and convert that light into usable energy. A diet high in chlorophyll (dark green veggies and super greens) is like consuming liquid oxygen. Super greens come in different formulas and may include wheatgrass, alfalfa grass, barley grass, chlorella and more.

One of the most important factors for creating an alkaline environment in our body is water. This makes complete sense when you simply consider how much of our body is water. 70%. By consuming 70-80% raw alkaline foods and consuming large quantities of alkaline water, the body will become alkaline and play a massive role in removing acidifying toxins from every cell in the body. Creating a pretty dam healthy environment.

Whack an alkaline filter on your tap at home.

I’d be careful of some perceived healthy foods such as apples and grapes which have the highest levels in processing and pesticide. Make sure you wash these foods thoroughly.

A few other summaries:

  • There is a list of super food and supplements that I’m still learning about, but these are some that appear to be anticarcinogenic, oxygenating and have alkaline properties; Green tea, wheat grass, and barley grass
  • Turmeric is evident to be a very powerful anti-inflammatory, enhancing the effects of chemotherapy and helping to reduce tumour sizes. It must be mixed with black pepper and ideally dissolved in quality olive oil
  • Garlic, onions, shallots, leeks and chives – regulate blood sugar and reduce insulin. They promote the death of a cancer cell
  • Mushrooms; Shiitake, and Coriolus. Now, these are considered to be acidifying however they are essential in creating natural killer cells in the body. They stimulate the production of immune cells
  • Cruciferous Vegetables; cabbages, broccoli, cauliflower. Have them lightly steamed
  • Fruit and vegetables rich in carotenoids like; carrots, sweet potatoes, squash, tomatoes, apricots, and beetroot. They are found to inhibit particularly aggressive cancers
  • Herbs rich in the oils of the tarpene family that block cancer cell enzymes; Rosemary, thyme, oregano, basil, mint
  • Citrus Fruits are generally acidic but I’ve read that the ones that become alkaline in the body are limes, lemons and grapefruit
  • Himalayan Salt is the go instead of ocean or other salts, it has a plethora of benefits with a lot more minerals and no toxins

Booze, it’s gotta go. Studies are suggesting that no amount of alcohol is good for cancer patients. This one always hurts because getting on the lash is so fun, but it’s shortening your odds of survival. Sorry.

Louise is on the ketogenic diet, a little more specific than the information above but with many of the same recommendations.

Your own healthful, balanced diet should supply your body with sufficient nutrients to carry out its routine tasks. I do believe supplements can play a big role in contributing to your health by supporting the immune system. Supplements played a big role in my sporting career and fighting cancer is bigger than any game or competition,  so I see the need.

My advice would be to work with a diet professional. I personally think you will get more value from someone with more of a  holistic approach to health and wellbeing. Someone that has had success with cancer patients, focusing on the supplements, vitamins, minerals, essential fatty acids, phytochemicals to give your body’s internal environment it’s best chance to punch on and protect and repair those cells in your body.

4.) Professionals

Speak to as many professional as you can. The best way to create options is to converse with the people that have been studying your disease for many years. You need to get the best possible advice, from the professors, doctors and clinicians that are the subject matter experts. It’s hard work and a lot of effort but these smart cookies are your ticket to a cure.

Speak to professionals that work in different areas of your disease. Traditional and nontraditional practitioners, complementary and alternative. Knowledge is power.

Talk to the innovators and early adopters that are pioneering or at the early adoption curve of new developments.

Ask lots of questions. For some reason, doctors drip feed information and often don’t tell you important details unless you ask. I don’t know why this is but I experience it often. Store and categorise your notes of who you are talking with and about because the library of information accumulates very quickly.

5.) New School Medicine

Immunotherapy, precision medicine, targeted therapies, personalised vaccines, natural killer cell therapies. There is a lot going on.

My advice is to get your tumour profiled. Do your research on what profiling is best for you. Examples of commercially available tumour profiling services are Caris Molecular Intelligence (CMI), FoundationOne (Foundation), OncoDEEP, and Paradigmdx (PCDx. The (RGCC) Blood test is another test to determine the tumour cell counts in the bloodstream.

These tests may give you the data you need to guide treatment.

In my opinion, mainstream cancer cures will be found in personalised treatment options. This is where the success is at but I feel the vast majority of success is still on the horizon. The big barrier to accessing these options is that many personalised treatments have not gone through rigorous phase three trials, or any trials which have proven to be better than the current one size fits all cancer train that you have to get on. People are being cured by highly personalised treatments, people with only days to live are being cured, like miracles. But we don’t hear about the ones that don’t respond to the treatments. At this stage, it may be a last resort option but it’s an option. It will however be the first choice option in years to come. Hopefully in Lou’s lifetime.

Lou’s cancer just seems like a massive minefield of varying histological subtypes and molecular profiles within the heterogeneous biology that is TNBC. Personalised treatment needs to consider the uniqueness of these presentations so we can come up with the best strategy.  It feels like we are right there but just. can’t. get. to it…….

I still classify Immunotherapy (IO) as a new school medicine. While some Immunotherapy treatments might be personalised many of the trials are not. IO uses the natural power of your immune system to fight cancer.  Some IO boosts your immune system overall, while others try to teach it to attack very specific types of cells found in tumours.

Cancer grows in our bodies by tricking the immune system into ignoring it. Lou’s current trial is about testing checkpoint inhibitor drugs to stimulate the immune system to recognise and destroy cancer cells. Lou’s current trial also has a PARP inhibitor. These drugs block an enzyme used by cells to repair damage to their DNA. PARP inhibitors may work by keeping cancer cells from repairing themselves once they’ve been damaged.

The main point I would make about IO is getting across the trials, work with an onco that has access to trial options and do what you can to investigate, learn and get on one as soon as possible while researching the next one.  If IO is your choice of direction.

5.) Traditional Medicine

First stop; Chemotherapy. Second stop; surgery. Third stop; radiation. Fourth stop; more chemo. Unfortunately, you need to get on this old-school barbaric cancer train to see if it works or not. For most it does, hence why it’s still the preferred method.

Louise is refractory to upfront chemotherapy so we pretty much had a year of all pain no gain. Her unfortunate situation of getting TNBC and not responding to treatment puts her in a very small bucket of metastatic patients resistant to chemotherapy, a very small bucket. Fuck you cancer.

I wish I could say you didn’t have to go through this archaic process but chances are you will.  Do your best to balance it with whatever you can to help mitigate the brutal side effects that will beat you up like a bully in the schoolyard.

6.) Complementary And Alternative Medicines (CAM)

I know there are many individuals that have decided to steer around traditional medicine completely, I am fascinated by it.  I think it’s amazing, brave and inspiring. I don’t have the balls to influence Lou down this path because I don’t know if I could do it myself. The smallest thing you can do is learn about alternative options, learn from it and integrate all that you can into your prescribed regime. Attempt to make the most of both sides because there is a trump style wall between the two.

Finding the right ingredients of CAM for your own war on cancer is critical. The reason I think it’s critical for an advanced cancer patient is:

  • The new school medicines mentioned in point five are advancing by the day, so you need to do what you can to stay healthy and be present on this earth.
  • This puts you in the best position to trial and be treated with new school options
  • Being in peak condition also gives you the best chance for traditional therapeutic options to have a positive effect
  • They help your mind fitness
  • They give you control of your body  as most lab-rat traditional options do not

If you are on a trial or taking a chemo regime, be careful to make sure CAM treatments don’t interfere with your cocktail of drugs.

Vitamin Infusions help Lou a lot as oral intake of such high doses is simply not possible due to absorption limitations from the liver. The Intravenous (IV) therapy is a method of feeding vitamins, minerals, and amino acids directly into the bloodstream used to correct and aid nutrient deficiencies.

There is a lot of CAM options out there to explore. Here is a list of CAM that we are still researching and willing to try if we can validate its success.

  • Heat treatments
  • Hyperthermia
  • Hyperbaric Oxygen Therapy
  • CBD Oil
  • Ozone Therapy
  • Targeted Radiopeptide Therapies
  • Dry needling for pain
  • Acupuncture
  • Mushrooms
  • Coffee Enemas
  • Rife Machines
  • Mistletoe

If you have any more suggestions and evidence of a treatment success I would love to hear about them. I am all ears.

At the time of writing this, Lou has been diagnosed with advanced cancer for eight weeks only. I am not a medical professional, I’m the furthest thing from it. But I’ve read more in the last two months and taken more notes than the five years it took me to complete my Masters of Business. I have an open mind and believe I have the right balance between an ignorant and an all-out radical approach.

If you’re embarking on a journey to succeed, you need to get started, you need to get moving and adapt along the way. If I wrote this blog post in a few months time I have no doubt it would read very differently. I’d much rather set sail and change course as I go.  Reacting to the winds and tides I encounter and making a start rather than not getting out of the harbour at all, with little attempt to win the cup.

Noah and Evie Byrne at Balmoral Beach Sydney
Little Angels

Treatment Update September 2018

Louise Decelis's Blood used for Immunotherapy Trial

Lou’s just shy of seven weeks since going from a stage one cancer patient to a stage four, In a single day. We’ve talked to dozens of subject matter experts during this time and we’ve learnt a stack of information while being simultaneously guided with treatment.

Lou had a face to face with Manuela Boyle on 28 August which was good. I’d had a web meeting with Manuela along with email correspondence. I like Manuela and her approach to cancer, focusing on holistic evidence-based therapies to correct metabolic dysfunction at the cellular level. Manuella focuses on supporting the structure and integrity of collagen tissue surrounding cells. She focuses on blocking the activity of the collagen-digesting enzyme, where she believes a high degree of prevention of metastasis can be obtained. Our focus with Lou is to have her primed for traditional treatment and IO trials. The primary objective of her health is to have a rock solid immune system function; decrease inflammatory markers; decrease platelet aggregation, reduce infection and viral load, improve stress management. Chemo and radiation, along with other medications have wreaked havoc on Lou’s body, we need to perpetually resolve side-effects created by trauma, drugs, pain and toxification

On 5 September Louise got her RGCC results back. In summary:

  • The specific tumour appears to have resisting populations because of the MRP overexpression that can be reversed by the use of inhibitors of ABCG2 pumps
  • The neoplasmatic cells have the greatest sensitivity, in the nucleous spindle stabilizer (Abraxane), in the tubulin dimmer
    polymerization inhibitors (Vinorelbine, Ixabepilone ), in the antagonist (Gemcitabine)
  • lso can be used Everolimus/Temsirolimus as an inhibitor of Akt/mTOR pathway, Afatinib as an inhibitor of EGF r and HER-2.

There are critics of the RGCC test as they are based on CTC’s (Circulating Tumor Cells). Cells that have detached from the primary tumour and flow into the blood or lymphatic circulation creating a secondary tumour. “Despite their rare population, these cells exhibit metastatic attributes and are related to cancer progression.” I’ve spoken with several patients that have been successfully guided by this test so we have nothing to lose in acquiring the data from the results. Particularly with the individual profile of chemotherapeutic drugs and natural substances that are highlighted to be effective.  Presently we are using the results to adjust Lou’s diet and supplements and we are really keen to see if any other testing supports the chemotherapy recommendations.

On 19 September we received the results from the MoST trial. In summary:

  • Louise’s Tumour Mutation Burden (TMB) is “low average,” with a TMB score of  9. Which suggests Immunotherapy might not be effective. Although some low TMB patients still respond to IO.
  • AKT2 protein is amplified. Mtor Inhibitors can help with this. AKT2 is a Protein in the cell, telling the cell to grow. We need to block this signal
  • FBXW7 is defective / there is a mutation in the cell cycle. There are drugs that target the checkpoints (cell cycle checkpoint inhibitors) which is an option
  • TP53 is defective but doesn’t have a treatment at this stage

No real dominating wins with the MoST trial. Two potential options to keep in our back pocket I guess. It hasn’t guided us with anything substantial.

One point that Elgene raised is that there is an IO trial coming up with an Abraxane (Chemo) combination. The RGCC stated that there is “great sensitivity in taxanes (Abraxane).” This means if the current trial gives us no joy, we may have an option with some “proof” of an alternative cocktail.

Louise will continue with her  IV infusions through the trial, on alternate IO infusion weeks.  A Myers Cocktail Infusions will assist to restore energy, encourage healing and support the immune system. The better shape we can keep her immune system in, the better chance IO can teach her own body to fight the tumours. The better shape her body is in, the better the mental fitness she’ll have. Cocktail is:

  • Vit C – 30g
  • Glutathione 500mg
  • Sodium Bic 10ml
  • B 12 (and complex B’s)
  • Magnesium
  • Alpha Lipoic Acid 400mg
  • Saline

Today was round two of Lou’s IO/Paarp trial. We’re already at the halfway point before more scans will inform us of its success. If tumours are stagnating or have reduced in size then we’ll stay on the trial indefinitely. If Lou’s tumours don’t respond then we are on to something else, hopefully as quickly as you can change your undies.

The Paarp is giving Lou fatigue and nausea. Fingers crossed this subsides as her body adjusts to the treatment. Being sick has put a dent in her mental state, with some emotional breakdowns, anxiety and clouds of doubt.

Yep, Lou has been in a shit place emotionally for the last seven days. She’s on her way back now. She seems to fall in a holde at the start of every new treatment cycle as the road ahead looks long and steep. It is. Anyway, she’s emotionally returning to us with a smile on her dial. The fogs lifting, it’ll be good to have her back. Just in time for a few days R&R in Queensland with Lou’s sister Leisy and my bro from another mo, J-boy.

Peace out.

My Tidal Thoughts

Your brain covers a lot of distance in many different directions when mortality is on your doorstep. I truly believe Lou will be around much longer than the ominous sentence most pundits prescribe. But when time is an unknown, it keeps your brain humming.

If you knew you had months, years or decades, you would do things so differently for each and every time variable. If Louise doesn’t respond to any treatment, the best and worst case scenarios differ by such a significant margin. If she does respond; then to what treatment, for how long and how well will she respond? What state will her body and mind be in throughout the battle? It’s impossible to strategise, it has to be day-by-day with an optimistic outlook.

So what is my washing machine brain doing as my neurons fire off wildly thoughts?

The kids obviously dominate my thinking. How can we manage the ongoing cancer rollercoaster without disrupting their innocent day-to-day lives? I’m always wondering how they will respond to different scenarios. It’s challenging to control your thoughts, so you often think about their precious little faces in the worst case scenarios. It’s just how it is.

Louise DeCelis Cancer Blog and What I think about

One thing I encourage my brain to address is that this is my life now. Lou’s disease is currently incurable but treatable. That sounds like a conflict of words but the reality is until they find a cure, we will be forever focused on treatment and survival. The geniuses will find a cure for MTNBC in about five years. So it’s five years we will fight like Spartacus and rest easy when we are free. I’m ok with this.

Because advanced cancer is our life now, for the immediate future its hour-by-hour, day-by-day. Many of the materialistic objectives are replaced by health and spiritual values. Sure we still want to take the kids on epic holidays and do fun things as often as we can, but many of the business, financial, aspirational and material goals have to be parked.

Money is always a massive worry. Money is a big worry for most families without throwing the cost of cancer into the thought blender. Lou and I built a great business that had several years of doubling annual growth. We never missed mortgage payments, we travelled the world and the wants we possessed continued to outgrow our needs. My motorbike accident followed by 15 months of cancer has crippled our trajectory. The truth is, if it wasn’t for family support we’d be beggars on the street. For that, we are extremely fortunate, downright lucky.

I think about life after death. I like to think there is something there.

I’m always thinking of the less fortunate. The people that die unexpectedly, shit out of luck children that get taken by an illness, individuals that have no financial or social means to survive their unfortunate situation. Often random things like citizens in North Korea or innocent children in war-torn countries. I guess that these thoughts are constant due to a combination of never-ending unpleasant media and my brain searching for markers to make me feel more fortunate about my own situation. It gives you perspective. The fact that life can be brutally cruel to some makes me feel like I’m a lucky one, regardless of Lou’s struggle.

My brain often worries that I’m not doing enough about our personal war on cancer. Who should I be talking to? What other options are out there? What should I be learning? It’s a very tough line to walk managing family, business and battling the Big C. I think about creating more options and prioritising those options so we’re always on the front foot. Australia is behind the eightball with cancer treatment, so where should we be? Are we doing the right thing? Where is another stone to turn over?

I appreciate special moments more than I did a year ago. Time with the kids, happy thoughts, the life that I have lived, days on this earth. Their good thoughts to stream.

I think about my own health, physically, emotionally and mentally. I have my own interests and techniques to reset my brain and keep my mind strong and motivated. Some activities like spinning laps on my motorbike carry their own risks, so I think a lot about this too.

When your children are sick or unhappy, you wish you could own that pain. Trade out. I wish I could do that for Lou. I can handle pain, physically and emotionally, better than anyone I know. I wish it was on me.

I think a lot about how loved we are. This keeps Lou going like fuel to an engine. The tsunami of support is immense, it flows in each time Louise needs a hit of love. I’m perpetually surprised when she gets smacked to the canvas how many people are there to pick her up again. This monopolises the thoughts I prefer not to entertain.

I think about winning. There is nothing like the satisfaction of winning when you have left absolutely everything on the pitch. Not another breath, another stride, another single effort. I think about the fulfilment of winning the toughest of battles, I think about our battle, the battle we are in, the battle for life.

I think we will win.

Evie Harper Byrne, So Much Character And A lot of Clanger

Evie Byrne has some clangers - Louise DeCelis Cancer Blog

A little bit of humour leading into the weekend.

Lou had a week to herself in Cleanland (Queensland), relaxing and preparing for the next phase of treatment. She’s feeling tip-top so, why not a little laugh.

Evie Pops loves a mashup. She has an amazing, un-deliberate ability to mash together not only words but multiple songs or nursery rhymes. If it was intentional, she’d be a hip-hop artist, at three.

It’s an ongoing source of micro entertainment, something to increase your daily smile numbers, which is always a good thing.

Evie’s own language starts with mispronounced single words, and she has some clangers. Here are some examples that are currently part of her daily rhetoric. Enjoy:

Bedtime daddy, time to put my tappie on.
*Nappie

(Evie jumps in the spa, holds eyes) Ouch, my eyes are stinking.
*Stinging

(Opens fridge) I want bizzy water.
*Fizzy

Not just a little bit, I want auvalit.
*All of it

Bibix for breakfast mummy
*Weetbix

Can we go to Aunty Eggs house so I can see Leck Leck
*Aunty Meg
*Lecksie

Dad, put Peanut Rabbit on Neckclicks
*Peter Rabbit
*Netflix

Mumma, did you get me a cresent when you were in Cleans Land?
*Present
*Queensland

Look, be careful, a spiderwent!
*Spiderweb

When I finish dinner can we have serdert?
*Desert

Well lactually!
*Actually

Don’t forget my pacpac
*backpack

Putt my dolly in the cram and let’s go the claygrown for Henry’s birsday
*Pram
*PlayGround
*Birsday

I might wear my pretty pink gress and put my lacelett on.
*Dress
*Bracelet

We love our little princess poppa. How could you not? Anyway, I’m off to watch Sleeping Mooty (*Beauty) with this funny little munchkin.

Dom

Evie in a swimming pool at Byron Bay, Elements

Today Australia Has A New PM, Who Gives a $*#! When Noah is Kicking Arse

Louise DeCelis and Noah Byrne, Noah receiving the kindergarten blue award.

I didn’t know it was possible to be so proud of a five-year-olds achievement.

Today Noah was presented, in front of his whole school, the Kindergarten Blue Award.

Days like this make you feel like a million dollars. Noah, I honestly don’t care what profession you choose, what sport you play, what social or sexual preferences you decide. As long as you care about others and try your absolute best, you will always be a winner.

Noah Byrne getting the Kindergarten Blue award

His teacher said it best: “Noah, you are wonderful. Thank you for adding positivity, happiness and joy to KB. You consistently follow the school rules and display great manners every day. Your kind caring nature makes you a fantastic team player and a beautiful friend. You make sure everyone is included and always help out if a friend is in need. KB love to hear about your amazing adventures on the weekend, whether it be whale watching or making bonfires. Your bright smile lights up our classroom every day and we are so lucky to have you in KB. Thank you for being you, Noah Byrne. ”

Dom
PS: I would prefer you ski over snowboard but I will learn to board if that’s your choice – ha…..

Dominic Byrne with Noah Byrne at Sacret heart getting the kindergarten blue award

 

A Little Bit About The MoST Trial

So Louise is enroled in the Immunotherapy Trial, which she starts on September 5. This is an attempt to assist her immune system to find and destroy cancer cells.

She is also simultaneously participating in the MoST trial, which is quite different and essentially starts out as a research study.

MoST (Molecular Screening and Therapeutics) personalises experimental treatment based on an individual’s unique personal and cancer genetic profile. In these trials, rather than focusing on a tumour location, such as the ovaries, patients with say ovarian cancer, pancreatic cancer, sarcoma and other cancers, but who have a shared harmful variant, are treated with a drug that may target the variant.

Lou’s tumour is genomically screened to see if they’re suitable and if there are variants that can guide the treatments. These trials are looking to see if a treatment will work, or work more effectively than another treatment.

MoST has already shown that genomic cancer profiling can identify treatable options for a significant portion of patients who previously had none.

Lou’s individual mutated cancer cells are currently in mice. This separate tumour gene test will take six weeks which should be about the same time the Immunotherapy trial checks/scans will take place. Hopefully, this gives us evidence-based options if Lou isn’t responding to the trial.

After screening, the plan is that we will be offered either:

  • MoST clinical trials, including immunotherapies
  • Clinical trials outside MoST that use molecular eligibility criteria
  • Other biomarker-guided treatments outside MoST

Fingers crossed it gives us an option if the Immunotherapy isn’t successful.

A Compliment For Louise

So yesterday at our Immunotherapy kick-off meeting,  Professor Kefford gave Lou a quality compliment. Not bad coming from someone who has been working with cancer and treating cancer patients with chemotherapy, radiation and Immunotherapy, from before Lou was born.

“I’ve been doing this job for forty years and haven’t seen anyone that looks as good as you do for what you’ve had.”