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.
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 ?!?!?!
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.
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.
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
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.
I still have to research these further but they are all in my notes as potential options…
siRNA to target EGFR and RNA
Dendritic cell vaccination
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 gene. Foundation 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?”
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.
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.
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.
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
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: firstname.lastname@example.org 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.
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 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.
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.
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?
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.
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.
Hyperbaric Oxygen Therapy
Targeted Radiopeptide Therapies
Dry needling for pain
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.
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
Sodium Bic 10ml
B 12 (and complex B’s)
Alpha Lipoic Acid 400mg
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.
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.
Yay, Lou was accepted into an Immunotherapy trial today. A tiny win in our cancer war.
The study might work. Fingers and toes crossed. Pray to your gods.
If the study doesn’t work for us, the knowledge will help people with advanced cancer in the future. That’s a good thing.
A very long list of side effects, several pages. But the doctors like to cover their arse and we’ve seen the worst, so bring it.
We may not receive any benefits from this research and it is possible Lou’s condition may become worse during the study. We accept this and are already on the case of alternative options.
Some detail about this Immunotherapy Trial – Only if you are interested.
These studies are run by the big drug companies, in our case, it’s Pfizer, Inc. They pay an organisation to conduct the studies. Luckily for us, one of the locations is Macquarie University, where we will join the study. I guess the big win for the drug company is if they succeed they have the patented right to sell the drug commercially.
What is the purpose of this specific research?
The purpose of this research study is to learn about the effects of the study drugs, avelumab and talazoparib when given as a combination treatment for Lou’s triple negative breast cancer. Avelumab and talazoparib have never been given together as a combination treatment, so the research study will also find the best dose of talazoparib to be given in combination with avelumab. Avelumab and talazoparib are both investigational drugs. (An investigational drug is one that is not approved for sale by regulatory authorities.)
A little bit more about the drug coctail, Lou loves a cocktail
Avelumab is a monoclonal antibody, a type of protein that recognises and attaches to other proteins. Avelumab specifically recognises and attaches to a protein called PD-L1. PD-L1 is found on the surface of some cancer cells, where it acts to protect those cells from being attacked by your immune system (the part of your body that fights infection but which is also involved in fighting cancer). When avelumab attaches to PD-L1 it stops PD-L1 from working and so allows your immune system to recognise and kill your cancer cells.
Talazoparib is a drug that stops the activity of a protein called poly (adenosine diphosphate [ADP]-ribose) polymerase or PARP. PARP is involved in repairing damage to the DNA within your cells. DNA is the set of instructions found within all of your cells that tells them how to behave. Your DNA is damaged all the time by things around you in the environment, and is repaired by several different methods, one of which uses PARP. When PARP is turned off by talazoparib in your normal cells, other methods can still work to repair damage to DNA. However, in some cancer cells, these other methods are broken and cannot be used. When PARP is turned off by talazoparib in these cancer cells, DNA damage cannot be repaired and leads to the death of the cancer cells.
By giving avelumab and talazoparib as a combination treatment in this research study, they are evaluating if the study drugs work together to have a greater effect than if each study drug was given by itself.
A bit to take in there I know. If you don’t understand it all you can ask our little scientist Noah.
A total of about 300 patients are expected to participate in the study. The study is being done at approximately 50 different research centres globally. It is expected that approximately 6-10 patients will be enrolled at each research site.
We kicked off with a biopsy on Monday morning (13 August). Three samples were taken from Lou’s ninth rib. One was a standard sample, one for the Immunotherapy Trial and one for the MoST trial.
On Tuesday Lou started Radiotherapy. This localised radiation was continued on Tuesday, Wednesday, Thursday and Friday. She has one more session on Monday.
We met with Professor Rick Kefford and his primary breast care practitioner – Jenny Gilchrist. This was basically an Immunotherapy Trial Inception Meeting. Everything seems set for the trial and a start date in the week of the 27th. We’re waiting on final paperwork from the drug company, this is expected on Monday the 20th.
It was good to hear that “we wouldn’t have done anything differently” from Jenny, in regards to the last twelve months. Jenny and Rick looked at four possible studies, all phase one trials, three are Immunotherapy and one is chemotherapy. The other two IT trials are “Seastone” and “HLX.” The reason we have gone with the JAVELIN Paarp Medley is the timing of the trial. The study isn’t open yet and they already have `people waiting from all over the country. Lou’s cancer type and age help us be a candidate for the trial.
On Tuesday night Dom spoke with Professor Allan Spigelman. Allan backed up the current plan of attack. He wants a copy of Lou’s BRCA tests.
Louise spoke with Elgene Lim on Friday afternoon. Elgene personally collected Lou’s third tumour sample from The Mater. Elgene’s team already has individual mutated cancer cells 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.
We’ve initiated multiple conversations for both traditional and nontraditional medicine options with the aim of understanding all avenues of treatment possibility.
We’re extremely happy with the appointments, connections and ongoing research achieved in the past two weeks.
Evie, our youngest is throwing up and has a high fever this morning. Just to keep us on our toes.
We are also expecting an RGCC test to be conducted this week which will produce an individual profile of both chemotherapeutic drugs and natural substances (including diet) that can be used to achieve the best treatment outcome.
Based on Louise’s treatment summary you approved, there wasn’t any variation to your recommendation of treatment
The only thing John was keen to do was a PET scan
The PET scan didn’t seem to be a priority for Dr Morgia, Dr Forster or Dr Kay Xu
This meeting with John was valuable as it validated previous decisions (mainly tumour extraction post chemo) and the current recommendation
i.e Biopsy, Radiotherapy, IT Javelin/parp.
Dr Marita Morgia I 7 August
Keen to start radiotherapy two weeks from last Xoloda intake
Will do six rounds
Needed copy of latest scans
Need biopsy done
Profesor Elgene Lim I 8 August
We went through all the past and present detail with Dr Kay Xu and then spent time with Elgene
Elgene thinks the Macquarie IT Javelin/parp trial is the best current option
Lou will start some testing ASAP looking at a large panel of genes to help find the driver of her cancer. This Tumor analysis was previously done OS but is now done in Dr Lims lab. It’s part of The MoST trial:
MoST is a personalised experimental treatment based on Lou’s unique personal and cancer genetic profile. Rather than focus on the tumour location, we focus on a shared harmful variant, we then target the variant
Create avatars in mice, break down the tumours into single cells, find the mutation result and match it to a treatment
After Elgene we met with Dr Amy Prawira to give consent and blood for the MoST trial. Amy is running MoST
This meeting also validated past and recommended treatment
Katrina Ellis I 9 August
Katrina is a naturopath and has successfully naturally treated triple negative metastatic breast cancer cases, one being a mutual friend
Cancer is classified as MDR1, it uses angiogenesis to spread, the idea is to test and see what is needed to block the spread. “Stop inflammation, stop cancer growth.”
RGCC Test (personalised testing, individual profile to help achieve the best treatment outcomes)
Isolate cells – all the genetic info taken from a blood sample
See if the cancer is vulnerable to heat?
We talked about some pretty alternate therapies: Hyperthermia, Verita Life, Rife Machines (Spooky Two), coffee enemas, near far infrared sauna’s….
Diet/Nutrition advice, high genistin – this blocks vegf, egf etc
Prince Of W: Phase 1 with parp + PDL-1 (BGB-317/BGB-290-study-001
(this one might be BRCA only?
Tristan was keen on “foundation testing.” Next Generation Sequencing, PDX – Patient-derived xenograft
Which seems to be all covered with the MoST trial at the Garvin?
Some of the side effects of IT (intravenous) could be: fatigue, inflammation (rash, diarrhoea, hepatitis, endocrinopathies) / Parp side effects (tablets): nausea, constipation, blood counts down
Additional people recommended or been connected with but haven’t spoken to:
Professor Rick Kefford; Away on holidays but I assume we will see him soon – as he oversees the Javelin trial
We are being lined up to chat with Professor Allan Spoigelman next week
Email contact (3rd party) with Dr Ursula Jacob (Germany)
Email contact (3rd party) with Sadia Saleem, MDAnderson (USA)
Recommended to talk to Professor Tony Tiganis, Monash University Melbourne
Look at NHMRC Clinical trials – Sarah Chinchen?
A good friend working for a Pharmaceutical Company said:
“The anti – PD1 / L1 drugs (eg Keytruda, avelumab, spartalizumab, etc) seem to be showing good signs but do cost a lot! I would recommend going for a clinical trial – not just because it is free but it is often in combo with other exciting compounds and hopefully you get special care/attention also. I sent a link to Lou with a trial we have just opened (open in Perth at the moment but Melbourne shouldn’t be far behind – no Sydney site for this one) which looks promising and allows people to be enrolled who have had previous systemic therapy (regardless of whether it was for metastatic/advanced disease or not). There are a few others which seem to be open, including the one Ben has referred to”
I’m keen to learn about Natural Killer Cell Therapy for cancer as it’s been mentioned a few times……
Immunotherapy – Immunotherapy is a type of cancer treatment which assists the body’s immune system to fight cancer. Immunotherapy can boost the immune system to work better against cancer or remove barriers to the immune system attacking the cancer.
Parp Inhibitor – A parp also known as a Poly (ADP-ribose) polymerase is an enzyme which repairs damage done to our DNA. In basic terms a parp enzyme regulates our body repairing damaged DNA. In normal cells this is useful and stops cell death however there is suggestion that cancer cells may use the PARP repair method to their advantage.
She had an unplanned admission to hospital with febrile neutropenia after C4
Breast surgery: Left skin-sparing mastectomy and sentinel lymph node biopsy on 22 November 2017 – (Prof Andrew Spillane).
Tumour report attached: RCB-III response to treatment with residual 23x20mm grade 3 triple negative invasive ductal carcinoma. No evidence of treatment effect. 1/9 lymph nodes involved with 2.25mm macrometastasis. No ENE or LVI.