Metastatic Triple Negative Breast Cancer Blog I Louise DeCelis

Lou’s Blog

Fundraiser For Lou!

When we started this blog on the 11th August we never expected we’d be posting about raising funds for Lou. We also never expected that chemotherapy, surgery, radiation, more chemo, more radiation and immunotherapy wouldn’t work either. With the ongoing expense of fighting cancer now outweighing our diminishing income. We’re overcoming

SAVE THIS DATE: 6 DECEMBER 2018 I 6PM I GREENWOOD HOTEL

Remember those wild Thursday nights in the late 90’s, early 00’s at the Greenwood Hotel? I sure do. We’re having another one, all for Lou. Put the date in your diary now. Let’s make it a sellout. While all the details are to follow, if you or anyone you know

Treatment Position

Dominic Byrne   
1 Comment
Oct 18
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

The Immunotherapy Trial Didn’t Work

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

Give Blood, Make The Effort And Save Lives

Have you ever needed a blood transfusion? Do you donate blood regularly? 💉 🌡 If you’re answer to question 2 is no, and you have no medical reason, then just consider for a moment that there was no blood to give me today. Or no blood for your loved ones

To Be Honest, It’s Been a Shit Month

Dominic Byrne   
1 Comment
Oct 14
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
Dominic, Geoffrey and Tristan Byrne, Borneo Coast to Coast. Sandakan Death March.

Sandakan Death March

11/October/2018 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

The Little Ratbags are Happy, I’m Happy

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

How To Beat Metastatic Triple Negative Breast Cancer

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
Louise Decelis's Blood used for Immunotherapy Trial

Treatment Update September 2018

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

My Tidal Thoughts

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,
dominic byrne and noah on the t-bar, thredbo 2018

A Few Days On The Snow – Just What The Doctor Ordered

My brother Happy and I had the best few days on the snow, in the sun, with Faith and Noah. What an escape. Alpine air in the lungs, fast turns and family time. #Winning
Three days ago I had a full blown panic attack in the middle of a crowded flight. Louise DeCelis. MTNBC. Are You Ok Day

R U OK?

Three days ago I had a full blown panic attack in the middle of a crowded flight, that had only just taken off, trolleys blocking both my ways out. I knew it was coming. It started with shortness of breath, a warm feeling crawling up all my limbs, nausea, shoes
Evie Byrne has some clangers - Louise DeCelis Cancer Blog

Evie Harper Byrne, So Much Character And A lot of Clanger

Dominic Byrne   
1 Comment
Aug 31
A little bit of humour leading into the weekend. Lou had a week to herself in Cleanland (Queensland), relaxing and preparing for the next phase of treatment. She’s feeling tip-top so, why not a little laugh. Evie Pops loves a mashup. She has an amazing, un-deliberate ability to mash together not
Louise DeCelis and Noah Byrne, Noah receiving the kindergarten blue award.

Today Australia Has A New PM, Who Gives a $*#! When Noah is Kicking Arse

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

A Little Bit About The MoST Trial

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

A Compliment For Louise

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

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
Immunotherapy cancer fight for TNBC Louise DeCelis

Never Ever Give Up, Never

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)
Louise DeCelis starts her Immunotherapy trial for TNBC next week

Immunotherapy Explained, As Best I Can Anways

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
Louise DeCelis was accepted into an Immunotherapy trial today

Woo Hoo, We Got Into An Immunotherapy Trial

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
Louise DeCelis Cancer Treatment options for tripple negative breast cancer

Week Two: Appointments And Firming Up Plan Of Attack

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
Elysia DeCelis, her four children and Noah and Evie Byrne

Yesterday Was A Bad Day On The Rollercoaster

Yesterday was a bad day on the rollercoaster. Tough, overwhelming, painful and exhausting. I want to tell you all about it but before I do I want to thank every single one of the 502+ people who have shared our post looking for other women like me. It’s unbelievable how
Noah Byrne Having a Lemonade in Bali. Louise DeCelis Breast cancer Blog

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

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
Cancer Blog Louise DeCelis, Naturopath has recommended she go on the Keto Diet plus Read Meat

Recommended Diet

Lou’s Naturapath has recommended she go on the Keto Diet + Red Meat. See attachments: Louise’s Diet – Ketogenic Diet Nutritional Advice Oligo Scan 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
Anyone out there with triple negative, metastatic breast cancer that is doing well with treatment?

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

I am on a mission to find anyone that: Has been diagnosed with triple negative breast cancer They were treated with chemotherapy The chemotherapy didn’t work (cancer turned up somewhere else i.e metastatic) They are now responding positively to another/different treatment option (Traditional and/or Non-Traditional medicine) I’m super keen to talk
Louise Decelis and Dominic Byrne Skiing in Telluride

Week One: Appointments For Plan Of Attack

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

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

Dominic Byrne   
1 Comment
Aug 11
JAVELIN Medley: ANZCTR Website & Australian 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
Louise Decelis and Noah Byrne smiling for a selfie

So What Does The Last Seven Days Look Like?

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
Louise DeCelis, History of Treatments For Triple Negative Breast Cancer

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

Diagnosis date: June 2017 – Stage IIA (cT2N0) triple negative invasive ductal carcinoma of the left breast. 22mm. Ki67 60% Chemo: Started 12 July 2017 – Neo-adjuvant chemotherapy Three rounds of FEC and three rounds of D (12Jul17 – 24Oct17) From my memory, the tumour shrunk slightly in the first
Current recommendations from Lou's Medical Oncologist

Oncologist Recommendation For Immediate Treatment

Biopsy To confirm receptor status and provide tissue for further testing re clinical trial eligibility Consider radiotherapy to rib lesion for pain relief (best to do early rather than need to interrupt systemic treatment) Dr Marita Morgia’s team to arrange appointment Clinical trial JAVELIN PARP Medley trial (avelumab plus talazoparib)–
why is tripple negative breast cancer so bad

Why TNBC Is Such A Biatch!

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

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
Louise DeCelis and Husband Dominic Byrne 2017

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