Husband to Louise, father to Noah and Evie, master of Bulldog-Benson. I’ve lived an exciting life, I’m still living it, addicted to getting my buzz-on, I’m always chasing steep and deep descents on skis or my next dirt bike session at the track. At forty, I encourage Noah to the skate park for my own selfish reasons. Professionally, I’m a full stack digital marketing expert with my own business, Digitoro. My life goals, needs and wants have dramatically shifted in the past year. I’m now dedicated to keeping the mother of my adorable little tin-lids alive and happy.
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.
I just spent two hours at the track and I’ve reset my brain.
I know some people, actually a lot of people, probably wonder why I participate in action sports that come with a high risk of injury. Especially now that I’m far from the reckless age of a teenager, and double especially that my wife’s outcome with stage four cancer comes with uncertainty. Just so you are aware, I do wonder about my risky interests more than you.
I have always been addicted to the substance released into the body through excitement. Adrenaline. Some may think it’s audacious behaviour, perhaps negligent or downright stupid. Of course, you’re welcome to your opinion.
I do think there is a blurred line between the pursuit of seeking intense experiences without regard for physical risk, verse activity that has a high level of danger even though you do all within your power to keep your limbs intact.
So, my ride today: Motocross would be arguably one of the most physically demanding sports on the planet. In my current state of fitness, riding at the threshold of my ability, I have about thirty minutes before muscles start to pack it in and I need a recovery period between sessions. For that thirty minutes, I am in a mentally clear state and while my heart rate might be through the roof and lactic acid is ballooning all limbs, I am emotionally neutral. Isn’t that what people aim to achieve through meditation?
Why do people meditate? To reduce stress, anxiety, depression and pain. They do it for well-being, psychological, neurological and cardiovascular benefit. Extreme athletes professional or recreational go hard for the same reason, even if they are consciously unaware and self-medicating ignorantly.
For me, it’s a combination of getting your buzz-on and concentrating so hard your mind has to be 100% clear, bar the exact moment. If you don’t get that front wheel in the deep rut entering the turn and your balance not weighted correctly, you will fall off. You’re thinking of nothing besides entering and exiting that corner. Because if you fall off you’ll hurt something.
On approach to a jump, if your brain hasn’t matched the distance you need to be in the air to the speed of your bike and you end up short or long, you’re a very good chance of eating dirt. Throw thirty other riders on the track, perpetually varying conditions and the power of hundreds of horses under your ballbag and the intensity is intoxicating. All of those horses at your disposal at the flick of the wrist, you have no choice but to “meditate.” Mediate or get a lift from the track in an HCF funded white van with flashing lights.
I’ve had to retire from one-off thrill seeking events that are a probable bad ending. The physical disregard I mentioned earlier. I’ve done this reluctantly, but your age and precious offspring become a priority. However the ongoing desire to progress at a sport, MX, skiing, skateboarding or whatever your poison, the combination of skill, concentration and risk will never leave you. Participating in these sports is a basic need, not a compulsive behaviour, I don’t doubt this one bit. It’s meditation, medication and an expensive session on the couch, all rolled into one therapy that works better than any other treatment.
Think about how powerful those endorphins and adrenaline are and why they’re so addictive. You can get hurt playing footy, even break something and not even realise until the 80-minute whistle sounds. That internal drug is stronger than morphine less expensive and good for your health, fact. For the extreme sports ‘junkies” and contact sports participants, science would prove our brains flood more dopamine during activity than the safe and conservative. That feeling of pleasure will always have you going back for more.
The overcoming of nervousness and fear is like an emotional reward, it leads to feelings of well-being and positive psychological outcomes, a constant sense of achievement. I honestly don’t know if I am addicted to the biochemical reaction within the brain that leads to that epic state of joy, or the activity itself.
I won’t grow out of it, it’s in my DNA. It’s a matter of minimising serious risk but having enough fun to clear my thoughts, reset my brain, look forward to the next session and enjoy living. Unfortunately, I will break another bone or two in the years ahead of me, I don’t want to but it’s inevitable. I hope to all the gods it’s never serious.
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.
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.
In two weeks, if Lou is in satisfactory health with her current treatment plan, I’m going on a journey. My dad, brother and I are going to be rafting, trekking and bike riding The Borneo jungle, Coast to Coast.
When cancer becomes your life, it helps to relate other peoples struggles to your own. There is nothing like peoples experience of war to remind us of how fortunate we really are.
The Sandakan “death march” remains the greatest single atrocity committed against Australians in war. I’m still struggling to get my head around it.
I will add more content to this page to in the coming weeks. That’s the plan anyway……
22 October 2018
Unfortunately, I won’t be going to Borneo this week. While Lou is still insisting I go, others have made the decision for me. Maybe another time.
So this is me on Sunday morning (no makeup), it’s early, the sun hasn’t even graced us with its presence. I’m 41 and still get excited about the day ahead when I know it’s going to be fun. Evie and Noah are asleep, I do want them to wake but I remain very still as I flogged them the previous day with non-stop action. Noah has been sleeping with a smile on his face. I’m tangled up in arms and legs, which I love, a nightmare for some but a happy place for me.
A primary goal of mine with Louise’s cancer has been to minimise disruption for the kids. It’s come at a financial cost but to see them happy is extremely fulfilling. I am proud of this. It’s important to feel like you are achieving in some areas at a time filled with consecutive bad news. Lou and I, with the help of family and friends, have nailed the management of our precious little munchkins.
Evie is still oblivious to the current state of affairs, she’s too young and naive. Noah is very well aware of what is going on. He does at times get emotional and momentarily angry at his “mumma” about the situation, which is his way of expressing his frustration. He’s genuinely concerned that she’s not always present and healthy and that their future together isn’t guaranteed. Lou hastily turns his upset feelings around by pouring some love into him.
Lou’s had a horrible three weeks, one bad day after the next. You have to sore to the sky and look down with perspective though. Lying here with the little ratbags, disappointed their mum isn’t here with us right now (although the bed is too small where would she sleep?) but still appreciative of my fortunate life that has been and that still is.
I’m on a best mates farm when he isn’t even in the state. Noah’s hanging with one of his besties and I his parents. I’ve borrowed motorbikes for the kids from another mate. Today we’ll be hosted at a good friends house, so the kids can ride horses, eat ice creams, breath the county air and simply have fun. The kids are nothing but smiles, all weekend.
Sure I still think about the reality and the enormity of the current shit-show we are in but when the kids are smiling, we’re smiling.
When Noah wakes the first thing he says is; “I had the best dream Dadda,” and proceeds to tell me about all of these tunnels and slides that went down, around and underneath the house. It actually sounds pretty fun, I’m a little jealous. Evie is hungry.
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.
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.
I didn’t know it was possible to be so proud of a five-year-olds achievement.
Today Noah was presented, in front of his whole school, the Kindergarten Blue Award.
Days like this make you feel like a million dollars. Noah, I honestly don’t care what profession you choose, what sport you play, what social or sexual preferences you decide. As long as you care about others and try your absolute best, you will always be a winner.
His teacher said it best: “Noah, you are wonderful. Thank you for adding positivity, happiness and joy to KB. You consistently follow the school rules and display great manners every day. Your kind caring nature makes you a fantastic team player and a beautiful friend. You make sure everyone is included and always help out if a friend is in need. KB love to hear about your amazing adventures on the weekend, whether it be whale watching or making bonfires. Your bright smile lights up our classroom every day and we are so lucky to have you in KB. Thank you for being you, Noah Byrne. ”
Dom PS: I would prefer you ski over snowboard but I will learn to board if that’s your choice – ha…..
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.
So yesterday at our Immunotherapy kick-off meeting, Professor Kefford gave Lou a quality compliment. Not bad coming from someone who has been working with cancer and treating cancer patients with chemotherapy, radiation and Immunotherapy, from before Lou was born.
“I’ve been doing this job for forty years and haven’t seen anyone that looks as good as you do for what you’ve had.”
Even though my medical experience is shallow, from my observation, there is a massive divide between non-traditional and traditional medicine. Surely there could be major benefits, for patients, if there were collaboration and co-creation of treatments.
I don’t know why this is?
Other countries seem to be so much more integrated across the traditional to non-traditional medicine paradigm.
I thought I’d share a personal email I sent Lou at the beginning of this cancer journey. Umm yep, I send my wife emails that are non-work/admin related. Somehow my keyboard knows what to say when my mouth doesn’t. If it wasn’t for modern comm’s technology (SMS, email, social etc) I may well be classified as a mute by now.
Anyways, we’re staring down the barrel of another battle in the war, the enemy has more artillery and we are on the backfoot but the fight needs to be unwavering.
12th of July 2017
At school, we wrote letters to each other before big games, races or events, we wrote letters to each other even when we lived in the same room. It was all about preparation, support, confidence and motivation. We did it at the start of the season, before big games and grand finals and when things weren’t going to plan, the reason we did this is is because success begins in the mind. If you believe that you can do something, you can do it. You must believe in it one hundred per cent. What you believe yourself to be, you are. Your self-image prescribes the limits for the accomplishment of your goals. It prescribes the “area of the possible” for you.
If you envisage successful milestones along the journey, the goals become easier to obtain, in saying that it’s never easy. Successful milestones come with a ridiculous amount of pain, hardship and suffering. Winners fight harder than the opposition, dig deeper, accept more pain and even smile in the face of such a challenge or adversity.
You’ve handled the first ten days like a champion, the mental preparation has been on-song, but the game starts today. There are six games (treatments) and the first game always sets the foundation for the next. Each game determines what changes need to be made, how prepared you really are and how tough the opposition is going to be, along with what strategy is needed for the next. In this instance, the competition doesn’t get any tougher, because the competition is a disease in your own body, and to win, you have to fight.
This is a fight. When a fighter gets boxed into the corner and is on the ropes, the only way out is to come out of the corner swinging. Over the course of a boxing match you may find yourself on the canvas, out of breath and utterly fatigued but if you keep getting to your feet and you keep punching, you will be standing when the last round dings, and if you punched harder than the competition and dodged the onslaught as best as possible, and you never gave up, then you win.
It’s one game at a time. Compartmentalise the small things (unpackage them and deal with them later) and play what is right in front of you, play the milestone staring you in the face. Losing your hair, feeling weak, getting a puffy face and looking like shit, it’s all temporary and insignificant. Losing a titty is also insignificant in the scheme of things too, who cares, no one. Deal with all those setbacks when its time, deal with them one by one as the hurdles appear in your stride.
The Tour de France is multiple stages, climbing Everest is four camps and many ups and downs, a fight is multiple rounds, a competition is many games, a marathon is many steps, a gold medal is many races and your treatment is currently six sessions. You only have to win today’s game, recover from it and prepare for the next.
Good luck. Stay positive. I am proud of you. You’re a great role model, not just for Noah and Evie but anyone that is dealt an unwanted and unwarranted set of cards.
Nothing changes. The ref has rung the bell, it’s simply another fight. Bring on Immunotherapy, do your best to win, never give up, it’s not even an option. If we go down, we fight again.
Immunotherapy helps your immune system find and destroy cancer cells. I’ve read in detail and it gets pretty technical, my head was spinning. The best summary is that cancer cells have molecules on their surface that can be detected by the immune system (tumour antigens). The immunotherapy directs the immune system to attack tumour cells by targeting the antigens. I hope I got that right.
In clinical trials, doctors use new medications or therapies on small groups of volunteers like Lou to see how well they work. The trials seem to be the last step in the research process before a drug or treatment can be approved.
There are probably more unmet needs for Lou’s TNBC cancer than most other cancers, unfortunately advanced metastatic disease is not cool.
Immunotherapies are pretty new in the scheme of treatments and have succeeded in achieving complete and durable remissions in some patients with cancers previously considered incurable. It’s always nice to have a silver lining on the next part of the journey, some hope to keep you fighting.
From what I have read (although the fine print for the study is like signing a waiver at the motocross track) it seems that Immunotherapies are generally safe, and do not punish you with the traditional side effects seen with chemotherapy.
Immunotherapy is a completely new approach to cancer treatment, thank god because we need a day where nuking your body with chemo is brushed aside. What Lou gets in participating in an immunotherapy clinical trial, is the opportunity to access a “potentially” lifesaving treatment, but help advance this avenue for future unlucky patients that have been dealt a bad hand of cards.
There is only a handful of active immunotherapies have been approved for cancer, most of the promising immunotherapy treatments are only available in clinical trials like the one Lou is starting next week.
Less than 10% of cancer patients eligible for clinical trials participate which means a massive amount of patients miss out, which is pretty sad.
Feel free to give me tips for a better explanation if you are a subject matter expert.
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.
Without anyone telling Noah that mummy was in a precarious situation, he knew something was up. Five-year-olds are way more clever than often credited. They might be doing simple sight-words and basic maths, but they know a hell of a lot.
In a meditation class at school last Tuesday, Noah (a good Catholic boy like his dad) put his tiny little hand in the air and asked; “can we pray for my mum because she’s still a little bit sick.” Just four days into Lou’s metastatic diagnosis, he was all over it, without receiving a single personal memo across his desk.
All the literature I perused had some common themes I found valuable:
Start with questions to see what they already know
Don’t overload the detail
Make sure they understand it’s nobody’s fault
Assure them they will be looked after no matter what
If they feel like you’re hiding something from them, it might bite you back
Talk to them at their comprehension/age level but don’t sugarcoat it
Love the hell out of your little stinky monkeys
I’d prepped all week, going through presentation deliveries and scenarios in my head, it felt like I was gearing up for corporate prezo to a full auditorium, not an adorable little five-year-old.
Daddy: “Noah, I heard that you prayed for mummy at school, what did you say?”
NoNo’s: “Just that my mummy was a little bit sick”
Daddy: “Do you know what’s wrong with mummy?”
NoNo’s: “Ummm, ask the Doctors, they will know”
Daddy: “Do you know what cancer is?”
Noah: “Cancer, how do you spell it dadda?”
Daddy: “You tell me how you spell it buddy”
NoNo’s: “is it with a K or a C”
Daddy: “close, well done, C.A.N.C.E.R.”
Being the wannabe scientist that he is, he steered the conversation deep into the biology.
With his enthusiastic animated face, eyes and motoring mouth wide open, he’s onto something that the scientists aren’t. “Dadda, why don’t the good cells have fire, swords and laser beams to beat the bad cells! You know if Mumma learns karate then the good cells inside will learn to fight and kill the bad cells right?”
The conversation played out really well, I was very proud of his maturity, knowledge and interest. He did ask some questions that reluctantly had to be answered and while I prepared for them, I had to digest the cricket ball in my throat to respond as best I could.
NoNo’s: “What if the bad cells win Dadda?”
Dadda: “Well, your mummy, the doctors and I are doing everything we can so that the good cells win and I think we’ll win buddy. If the bad cells do win, well, then mummy could get very very sick.”
NoNo’s: “Could mummy die?”
Dadda: “That is a possibility beautiful (he’s not going to want me to call him beautiful in a few years time, I’m pretty sure of that). Noah, you know how you’ve ranked everyone in the family on who is going to die first? You know how you’re always telling me that NanNan is going to die first because she is nearly a hundred, and then Poppie will be next because he is like 70 and then grandpa and grandma………….all the way down to Georgie because she is a just a baby.” It doesn’t always happen that way, sometimes accidents happen, people get sick, even babies might die before NanNan.”
He was so brave. The conversation progressed. After some silence, the tears welled in his innocent ocean coloured eyes and he said:
“Dadda, I don’t want Mumma to die, how will I come home and tell her that I scored a goal in soccer today.” He had a little cry. I kept reassuring him that no matter what, he would always be loved and looked after, by mummy or daddy, nanna, poppie, grandma, grandpa, aunty-Leisy, uncle Jon, aunty Emma…….(I was rattling off all of his aunties and uncles when he was quick to interrupt)
“And my cousins and friends Dadda, they will look after me too!!.”
Noah had a dinner date with his Mumma that night at his favourite restaurant – Italian Pizza Kitchen. He raised the conversation with her on his own. “What’s your sickness called again, oh yeah, cancer, that’s it. Sometimes if the bad cells win mummy, you can die. If you die, who will be my mummy? How will you be my mum forever if you die? Your only 40, your not old enough to die.”
Lou answered all his questions like a trooper while forcibly pushing down her strict keto meal conversing intently while simultaneously dreaming of pizza and tiramisu. While her perfect creation sitting across the table, propped up like an adult, washed down his burger and fries with a lemonade, confidently telling her what’s what.
Noah slept in my spot that night, I surrendered upstairs so he could cuddle and protect his most favourite person in the whole wide world.
We love you Noah, more than your imaginative brain can comprehend.
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.
It’s been seven days since Lou’s oncologist dropped the mother of all bombs on our lives. Yeah, we’d been living with cancer for over a year. Yeah, Lou had been brutalised with 14 months of barbaric treatment. Yeah, it disrupted our lives as we ran the cancer gauntlet while trying to keep some family structure. But yeah, “we’d be right mate.” We were always going to come out the other end, bruised but better for it, challenged but successful, flogged but winners. Not this time. By any means, don’t count us out, another game starts and we’re preparing for all-out war. But we lost the opening battles and the odds are tipped against us.
So what does the last seven days look like? Well, I hired a lifeguard for the home as I was worried the tears were going to push the water level above the kids wading height. Family, friends, big grown men, rugby players that were on-field enforces, country boys with calloused hands and stoic hearts, all reduced to tears. After three days of essentially mourning, we sprang back into action. Since Tuesday we’ve met with two cancer professors, three oncologists, a naturopath and several doctors. Our calendar is just as populated this coming week.
A massive thank you to those that made calls and opened doors. Peoples prompt response to just make shit happen has been remarkable. Thank you for the love and thank you for the tears, all shed for Lou. Tears of empathy, tears of sorrow, tears of anger, tears of gut-wrenching pain. Thank you for your unwavering support. I echo Lou’s last social post that the love expressed, both physical and virtual, has supported her limp and exhausted body. It’s propping her up so she can stand on her own two feet again.
I’m a fairly private person. My social media posts are nothing but an embellished snapshot of the good times. Motorbikes, skiing, holidays and a plethora of proud parent snaps of the two best kids on earth. The best kids in my biased eyes anyway. Lou has let it all hang out over the past year, it’s motivated me to keep the transparency moving and contribute, especially when she can’t. So I’ve started this blog, I have no idea where it will end up. Perhaps a detailed narrative of the next twelve months, maybe some preserved words for Noah and Evie or some motivation for the next cancer number thrown to the wolves. Maybe just a post or two that becomes nothing but forgotten pages buried deep in Google’s servers.
Apart from my two previous updates about Lou, you won’t find any emotional words from me online. I’ve never displayed affection publicly, it’s been my preference to do this in the comfort of my own home, and perhaps more through actions than words. For those close to me you are well aware I am a man of minimal verbal dialogue. Often zero words in a social arrangement (I don’t apologise). So this public journey will be interesting, therapeutic – hopefully, and maybe even uncomfortable for someone aloof like myself. However, I’ll dabble in taking you for a ride on the cancer rollercoaster. Hopefully, Lou will do most of the posting.
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.
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.
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.
If you or someone close to you has been diagnosed with cancer, you know how overwhelming it can feel. Maybe you’re also getting a lot of confusing information and advice. The more you know, the more confident you’ll feel making decisions. That’s the way I see it.
If you asked me a year ago what cancer is, I would have struggled to give you a satisfactory or close to an accurate explanation. The first 38 years of my life were not significantly impacted by cancer. A friend of a friend, a distant relative or a neighbour a few doors up got cancer. No one in my family was going to get it. Not until we were all old anyways.
What is cancer?
I’ll give it my best shot at explaining it. Our bodies are made up of millions of cells. Inside each cell is an instruction manual called DNA, which has chapters we call genes. Genes tell the cells how to behave; when to make new cells, and when to die.
Cells grow by dividing; one cell divides into two cells, two cells become four cells, and so on. Cancer begins when one cell starts to grow uncontrollably.
Cells divide when their genes tell them too. But if a gene has a mutation, it might instruct a cell to divide when there’s no reason to. The cancer will rely on the blood supply to grow, when they draw blood cells to it, these vessels allow it to travel.
When these cells divide, they make a copy of their DNA in genes, so that each new cell has the same instructions. That copy also divides, and so on, while older or damaged cells are told to die off, making way for new healthy ones.
Occasionally, the DNA instruction manual in a cell can get damaged or mutated. The cause of this mutation could be:
Unknown, lots of unknown
While healthy cells are trained to listen to signals for when to grow, divide and die, cells with mutated DNA sometimes ignore your body’s signals. These rogue cells continue to divide unchecked. This is how cancer starts. In some cases, cancer stays put and is localised. In other cases, the cancer spreads (metastases).
When they are metastatic, tumours consume the body’s resources as they grow, damaging healthy functioning tissues and organs along the way.