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?