I don’t know why this is?

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.

Has anyone got an opinion on this?

Never Ever Give Up, Never

Immunotherapy cancer fight for TNBC Louise DeCelis

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.


EMAIL

12th of July 2017

Lou,

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.

Punch on.

xxx


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 Explained, As Best I Can Anways

Louise DeCelis starts her Immunotherapy trial for TNBC next week

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.

Dom

Woo Hoo, We Got Into An Immunotherapy Trial

Louise DeCelis was accepted into an Immunotherapy trial today

Yay, Lou was accepted into an Immunotherapy trial today. A tiny win in our cancer war.

The Good
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.

The Bad
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.

The Ugly
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.

Week Two: Appointments And Firming Up Plan Of Attack

Louise DeCelis Cancer Treatment options for tripple negative breast cancer

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.

Mice in The MoST trial for Louise's Tripple negative breast cancer trial
Poor Little Guys!

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.

How to tell a five year old his mum has cancer, and it’s serious

Noah Byrne Having a Lemonade in Bali. Louise DeCelis Breast cancer Blog

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.

Noah Byrne Skiing in Thredbo

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: “C”
NoNo’s: “C.A.N.C.A
Daddy: “close, well done, C.A.N.C.E.R.”

Noah-Byrne-Pre-school-OAC-2017-Louise-Decelis-blog

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.”

Dominic Byrne and Noah Playing With Paint

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.

Dominic Byrne with Noah when he was a fresh baby

I Want to Speak With ‘Triple Negative Metastatic Breast Cancer Patients’ That Have Responded To Treatment!

Anyone out there with triple negative, metastatic breast cancer that is doing well with treatment?

I am on a mission to find anyone that:

  1. Has been diagnosed with triple negative breast cancer
  2. They were treated with chemotherapy
  3. The chemotherapy didn’t work (cancer turned up somewhere else i.e metastatic)
  4. They are now responding positively to another/different treatment option (Traditional and/or Non-Traditional medicine)

I’m super keen to talk to you.

Dom

Week One: Appointments For Plan Of Attack

Louise Decelis and Dominic Byrne Skiing in Telluride

Professor John Boyages I 7 August

  • 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
  • Does Louise have a tumour marker?

    Dr Tristan Barnes I 10 August

  • Advice reflected Ben’s plan. Tristan’s recommendation/consideration:
  • IT or paying for Keytruda
  • Eribulin was also a consideration?
  • Trial options:
    • Macquarie – Javelin Medley
    • 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……

The Immunotherapy Trial That Louise Is Likely To Start is The JAVELIN Medley

e professors, oncologists, doctors are all favouring the JAVELIN Medley Immunotherapy trial as the priority treatment to date. Louise DeCelis Cancer Blog

JAVELIN Medley:

ANZCTR WebsiteAustralian Cancer Trials Website

Louise’s likely schedule after her five rounds of radiotherapy is Immunotherapy with a Parp Inhibitor:

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.

 

So What Does The Last Seven Days Look Like?

Louise Decelis and Noah Byrne smiling for a selfie

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.

I’ve got a big day today. I’m going to tell my beautiful boy, the most sensitive, emotionally connected five-year-old on the planet, about the current situation that is. I think I might do it at the BMX track.

Dom

Louise DeCelis’s History of Diagnosis And Treatments For Triple Negative Breast Cancer

Louise DeCelis, History of Treatments For Triple Negative Breast Cancer
  1. Diagnosis date: June 2017 – Stage IIA (cT2N0) triple negative invasive ductal carcinoma of the left breast. 22mm. Ki67 60%
  2. Chemo: Started 12 July 2017 – Neo-adjuvant chemotherapy
    1. Three rounds of FEC and three rounds of D (12Jul17 – 24Oct17)
      1. From my memory, the tumour shrunk slightly in the first three rounds but then grew in the next three rounds….
      2. One round (4th) had Carboplatin in it (whilst awaiting results of BRCA testing)
        1. Note: No mutation was detected in ATM, BRCA1, BRCA2, PALB2 or TP53
      3. She had an unplanned admission to hospital with febrile neutropenia after C4
  3. Breast surgery: Left skin-sparing mastectomy and sentinel lymph node biopsy on 22 November 2017 – (Prof Andrew Spillane).
    1. 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.
  4. Radiotherapy: Mid January- 22Feb18: 24 rounds (Dr Marita Morgia)
  5. Oral Chemo: Six rounds of Xeloda (capecitabine) (eight were planned) + Zoladex (goserelin) for ovarian suppression
  6. Pain in the ribs (for about six weeks) was the catalyst for scans
    1. Abdo USS 30Jul18
    2. CT chest/abdo/pelvis 31Jul18 – report attached
    3. whole body bone scan and Liver MRI 03Aug18
      1. i. Bone Scan – report attached
      2. ii. Liver MRI – report attached

HERE IS A DOCUMENT THAT HAS ALL THE REPORTS THAT WE HAVE IN OUR POSSESSION.

Please see this page that I will continue to update with ongoing treatment.

Oncologist Recommendation For Immediate Treatment

Current recommendations from Lou's Medical Oncologist
  1. Biopsy
    1. To confirm receptor status and provide tissue for further testing re clinical trial eligibility
  2. Consider radiotherapy to rib lesion for pain relief (best to do early rather than need to interrupt systemic treatment)
    1. Dr Marita Morgia’s team to arrange appointment
  3. Clinical trial
    1. JAVELIN PARP Medley trial (avelumab plus talazoparib)– Prof Richard Kefford at Macquarie University Hospital
    2. b. Other options include:
      1. Keytruda (pembrolizumab) – self-funded
      2. Another clinical trial
  4. ARCS- Multi tumour (anetumab ravtansine in mesothelin expressing advanced solid tumours) – Prof Richard Kefford at Macquarie University Hospital
  5. Xgeva (denosumab) to treat and protect bones (to be discussed)

Why TNBC Is Such A Biatch!

why is tripple negative breast cancer so bad

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.

tripple negative breast cancer louise decelis blog

While Lou and I often talk of mortality and the daunting odds, she still finds it hard to address the median survival rates. Which is a good thing because we have health, support, family and other resources to blow even the best case statistics out of the water.

There are patients living with TNBC and responding to Immunotherapy, which gives us great hope, I am talking to some of these patients and will continue to talk to more. It’s a very small group as only 15% of breast cancer cases are TNBC and only a small percentage of this group doesn’t respond to chemo. Sucks ha!

It really feels like we are on a cusp of discovering why some TNBC cells are tougher and more capable of surviving the harsher conditions that occur when cancer metastasises. I do believe that we’re not far away from a new therapy for the devastating disease.

From what I have been reading, it does seem that researchers are working to improve their understanding of the biology of triple-negative breast cancers, how these types of cancers behave and what puts people at risk for them. I guess we are part of that research, to help find out the best ways to use treatments that already exist and to develop new treatments.

What Is Cancer? Do You Actually Know The Answer?

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:

  • A chemical
  • Environmental Carcinogen
  • Hereditary
  • Viruses
  • Smoking
  • Diet?
  • 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.

So that’s the easy part. Now, what are treatment options? and Why is TNBC such a bitch?