“Some of you will now know that last week I was diagnosed with Breast Cancer. A rare and aggressive form, which I thankfully found early.
Yesterday I went into battle with my first round of chemotherapy.
I’ve ridden the rollercoaster of emotions but I’ve landed in a really positive place, feeling strong, surrounded by love and overwhelmed at the support we’ve already been given. I have amazing doctors, a treatment plan, and I’m ready to fight this with everything I’ve got!
Trying to let everyone know in a personal way is exhausting and I don’t want to hide. So this is me, ready to take cancer on, hair cut, controlling what I can and feeling scarily healthy. Not a single sign of illness short of a lump. And the chemo drugs now taking hold.
Dom, my babies, my family and closest friends have held me up this far. I love you all so so much. And all the messages and gestures of support flowing in mean everything.
In the words of my beautiful poet of a husband…. “Winners fight harder than the opposition, dig deeper, accept more pain and even smile in the face of such a challenge or adversity” I promise to always dig deep, be brave and fight for a win.
So bear with me guys, it’s going to get a little rocky over here, but I’ll be giving it my best, and even in my darkest days I won’t be taking a backwards step. #ivegotthis XoX 🌈✨❤️🌈✨❤️”
Today is International Women’s day, it’s about celebrating women’s achievement, raising awareness against bias and taking action for equality.
Lou strived for all of these objectives. She was driven in the corporate world, a successful business owner, she orchestrated the family household and she was a phenomenal mother.
While it’s not related to International Women’s day, I thought it would be a good day to share this speech, a night organised by her friends. The primary aim of these events is to raise money to help The Cancer Council fight women’s cancers through prevention programs, support services and world-class research.
The speech demonstrates her courage, strength and inspiring qualities.
Lou and her friends smashed all records for the most amount of money raised by any previous Girls Night In event. Girl power!!
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………
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…….
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
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.
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.
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.
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.
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.
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.
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.
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:
Extreme nausea
Inability to move/comatose sleep, for well over a week
Doesn’t eat and barely drinks = dehydration
Weight loss – up to 5kg’s
Scrambled brain like she’s extremely drunk, these side effects last for two weeks
Key Blood results decrease significantly, apart from the usual side effects and danger this has, it also delays the next treatment significantly
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?
We don’t yet know how effective the two TACE sessions have been
An MRI will assist with this
If Lou has had a reduction in tumour size then we should consider continuing the next two rounds with Vogl
The door with Vogl could close if we go with Aigner
I will ask Vogl if this is the case
We would be changing strategies without completing the current prescribed regime
We don’t know if Aigner’s treatments are as effective as Vogl (It’s something we will never know)
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….
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.
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…….
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.
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.
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”
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.
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.
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 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.
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.
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.
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.
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.
All the preparation in the world cannot beat the demon that is chemo. It might start ok, and you think “hey maybe this time I’m going to get through this relatively unharmed” and then SMACK, SMACK and once you are down SMAAAAACK!!!!! There is no such thing as chemo and unharmed.
And so you suffer greatly and you sob to your husband that you don’t want to do it anymore. And you don’t. NO MORE!!!! You find yourself disoriented in the hospital not knowing what day it is.
Then your bloods start coming back to acceptable levels and your mind feels peaceful. You finally turn the corner. You wake up fully and you can move your body, walking, stretching. Literally coming back to life. That’s my week. I’ve climbed out of the hole and I’m feeling alive again. Crawling til I’m walking, walking til I’m dancing.
My week in numbers…
Days since the last Chemo: 8
Days it took for the demon to get hold of me: 4
Days spent sleeping 20 hrs: 2
Hospital days done: 4
Hospital days to go: At least 3
Net round of chemo due: Yesterday. Will have it as soon as blood levels are back up. Ouch!
Side effects of chemo: 7 (at least) unbearable, unspeakable side effects that hit you all at one time
Medicines taken: Too many to count 🙁
Hair falling out: ZERO!!!! Yessssss
Hours slept: Over 110
Hours spent crying: More than usual
Needles: Only 1 straight into my new port. Woooo hoooo!! Saving me 20 needles this visit alone.
Nurses looking after me: Mix of 10 beautiful people. I heart nurses
Litres of IV saline: 4
Platelet count: 34 (Normal 150-450. Below 20 platelet transfer)
Other blood counts: All in the danger zones but improving each day
Visits from my kids: Zero. Hard for me but easier for them. Dom brings them in when they ask to come
Laps of ward: 7 and rising Messages of support: Over 100. THANK YOU SO SO MUCH!!!!!! Bravery: Utterly diminished the day I was admitted but its come back in force Strength Body: Wasting dammit. Back to baby steps and my home yoga gym space. Cannot wait! Strength Mind: Rock solid! I’m back in the ring. I’ve got this!!!
And that’s what a week in my world looks like! Let me know what you have all been up to XoX
When we started this blog on the 11th August we never expected we’d be posting about raising funds for Lou. We also never expected that chemotherapy, surgery, radiation, more chemo, more radiation and immunotherapy wouldn’t work either.
With the ongoing expense of fighting cancer now outweighing our diminishing income. We’re overcoming pride and asking for help.
There is no cure for Lou’s cancer. Our cancer-fighting focus is attempting to find treatments (domestically or abroad) that will prolong her life. Some of these options are upwards of €100 000, less travel and relocation costs.
A heartbreaking scenario for Lou is that Evie might not remember her mum if we don’t get a lucky break. Balancing treatment and spending time together is our priority right now.
You can help by:
Sourcing/Donating an item for auction
Please contact: donations@louisedecelis.me or Ginny Timmins on +61 404 033 237
Attending Lou’s party: (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.
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.
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 👇:
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.
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.
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.
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.
Three days ago I had a full blown panic attack in the middle of a crowded flight, that had only just taken off, trolleys blocking both my ways out. I knew it was coming. It started with shortness of breath, a warm feeling crawling up all my limbs, nausea, shoes kicked off, sweating, panic, heart pounding and endless thoughts about how of course I was dying given my health and all the meds I am on. In that moment the panic is so real and you can’t escape it. And when you’re on a plane you can’t escape your situation so it’s multiplied. I’ve had two major ones before, one ending in an ambulance with my beautiful friend Ali looking after me. The other time Dom who always works me through it. Friday was my wonderful brother in law. All three of those people knew how to handle it because they knew my mental state. They knew I was in times of struggle and they made me feel like it was normal. It was OK. And as such my openness became my safety net.
On top of it, this time it was total strangers that also helped me, the hosties. (before Jon could even get to me) they reached out and asked me if I was ok. I explained that I needed help. They got me on oxygen, a seat with some space, a cup of ice and they were just so kind. Not judging me. Just genuinely concerned.
Friday also happened to be R U OK? day. A day of checking in on our loved ones, colleagues… or even strangers. And I wanted to say That One; it is perfectly ok to not be ok. People all around you are not ok. Two; it’s ok to be feeling great one day and not the next. I’m the perfect example. I go from 150% to 0 in a day and sometimes it takes a while to break through. And that’s ok. And Three; you don’t need to wait to be asked if you’re ok, it is perfectly ok to ask someone for help, or an ear, or some physical comfort. A hug. A hand held. My brother in law held my hand on that plane and it literally saved me. It comforted me without words and I knew I didn’t need to feel embarrassed or concerned about what other people thought. He was with me and he had my back.
But I am good today, please don’t worry about me, this post is not for support. My openness has me covered with endless support. But do check in on your loved ones. And if you need help, even in the middle of a crowded aeroplane, reach out and ask someone. People want to help.
I hope you’re all ok this Sunday!! Big hugs 💖 #ivegotthis
When you first find out that you have breast cancer, your doctor searches for the presence or absence of three receptors, proteins that live inside or on the surface of a cell and bind to something in the body to cause the cell to react. You may have heard of the oestrogen receptor, progesterone receptor and human epidermal growth factor receptor 2 (HER2).
In oestrogen receptor-positive breast cancer, progesterone receptor-positive breast cancer and HER2 positive breast cancer, treatments prevent, slow or stop cancer growth with medicines that target those receptors. There are drugs available that specifically target these receptors and effectively kill the cancer.
Triple-negative breast cancers (TNBC) need different types of treatments because they are oestrogen receptor negative, progesterone receptor negative and HER2 negative. Chemotherapy has been shown to be the most effective treatment for triple-negative breast cancer. For patients and doctors alike, Triple negative breast cancer that is resistant to chemotherapy is one of the most challenging forms of breast cancer. Sadly, unlike the other breast cancer types, there are currently no targeted therapies for triple negative breast cancer in patients who fail chemotherapy.
While Lou and I often talk of mortality and the daunting odds, she still finds it hard to address the median survival rates. Which is a good thing because we have health, support, family and other resources to blow even the best case statistics out of the water.
There are patients living with TNBC and responding to Immunotherapy, which gives us great hope, I am talking to some of these patients and will continue to talk to more. It’s a very small group as only 15% of breast cancer cases are TNBC and only a small percentage of this group doesn’t respond to chemo. Sucks ha!
It really feels like we are on a cusp of discovering why some TNBC cells are tougher and more capable of surviving the harsher conditions that occur when cancer metastasises. I do believe that we’re not far away from a new therapy for the devastating disease.
From what I have been reading, it does seem that researchers are working to improve their understanding of the biology of triple-negative breast cancers, how these types of cancers behave and what puts people at risk for them. I guess we are part of that research, to help find out the best ways to use treatments that already exist and to develop new treatments.
