Unfortunately, I have been knocked unconscious an estimated 25 times in my life. Four of these knocks resulted in memory loss and three were hospitalised. I’ve become paranoid about various memory incidents I’ve had in recent years and I’m anxious about the possibility of CTE symptoms coming my way. CTE or Chronic Traumatic Encephalopathy is…
Lou has been in 24-hour medical care with Professor Herzog since the 26th of December. We needed somewhere between treatments that can give Lou the medical support we can’t. The private clinic is in Bad Salzhausen, 55km’s from where our apartment is in Bad Homburg. Lou is in a double room so Lynda, Les or I stay take it in…
Lou’s brain has been scrambled since Friday. This has only previously happened when her liver has been overloaded processing the chemotherapy with TACE. It’s been a little over three weeks since her last liver treatment so there wouldn’t be any chemo in her liver now. A simple blood test measures how well the liver is performing its…
We’ve commissioned a number of blood and tumour molecular screening/profiling tests over the last six months, with the aim to source potential treatment options for Louise. Tests include: RGCC mOST Foundation One; and OncoDEEP (summaries for the above reports in red + access to the full reports in Lou’s treatment history) Lou’s sister Elysia has been…
How is Lou Doing? It’s a question I get asked many times a day. Unfortunately for months now I haven’t been able to give a positive response. In most instances I find myself adding to the answer; “she is doing well considering…” While her physical condition obviously isn’t good, I feel it’s a little more constant…
Well, that didn’t go well. Louise went downhill faster and harder than me on my motorcycle. On Friday after her chemotherapy liver treatment, I made a prediction she would start spiralling on Monday, with the hope it wasn’t too severe this time. Well, nausea and vomiting started prematurely on Friday night. Then on Saturday, we…
Some quotes from Professor T Vogl I jotted down Verbatim: “the amount of tumour tissue in the pleura is better, the reduction of fluid is also becoming now less.” “With the liver, we always have a problem, we treat one area and of course, we cannot treat the whole liver, other areas are still in activity. Overall it’s now stabilising more…
We’re closing in on a month in Germany, I’m honestly not sure if the time has gone fast or slow. Being in a foreign country, a place I’ve never previously visited, a place with much to do and see but it’s somewhat of a blur. On occasions, you get a minute to appreciate some architecture, heritage, the…
So Lou’s right lung is full of fluid again. If you look up side effects for “pleural effusion” you will get: Shortness of breath A dry cough Pain A feeling of chest heaviness or tightness Inability to lie flat Inability to exercise (or move in our instance) Generally feeling unwell (Understatement) She fits that textbook…
So we’ve finally moved into an apartment, we’re in a beautiful town called, Bad Homburg. It’s a close distance to the two clinics we visit daily. The kids now have play space with neighbouring parks. Hopefully, we get a little time to explore and familiarise ourselves with the area. It feels very German. It’s beautiful.…
That’s not a bag of urine, beer or ice tea. It’s a litre of fluid drained from Lou’s right lung. The reason she hasn’t been eating and has had 24/7 nausea. The tube was still attached in the pic, and the bag drained another .5 of a litre making it a rounded 1.5-litre, collected through thoracentesis.…
The objective is to achieve four individual regional chemo liver sessions (half the liver per session) with Professor Vogle between November and January. In between these sessions, receive as much complementary therapy as possible. Univ. Prof. Dr. med. Thomas J. Vogl Transarterial chemoembolization/chemoperfusion; Abdomen Rotation Vom. Puncture of the femoral. Introduction of a 5F lock.…
Lou is still very unwell but we had our first small win yesterday. Her big tumour on her liver that has been growing uncontrollably has shrunk by 5% in surface area and 7% in volume. This occurred over a seven day period. It is a small win and hopefully validation we are doing the right things…
Lou’s second round of liver treatment scheduled for today was postponed until the first week of December. She’s been extremely unwell since we arrived, with little to zero energy. Her white and red blood cell numbers are down, they’re a tad high for transfusions but low enough to keep her on struggle street. She’s fatigued and…
It was a very long journey door-to-door. Lou got here as good as we’d hoped and the kids were absolute champions. I couldn’t have asked for more. We’ve been here for three days. She’s had one targeted treatment session on the liver with another scheduled for Thursday. She starts some full body treatment today as…
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…
🙏🙏🙏👊🏾👊🏾👊🏾🤗🤗🤗👨⚕️👨⚕️👨⚕️🤞🤞🤞 💓💓💓 Thank You!!
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…
All the preparation in the world cannot beat the demon that is chemo. It might start ok, and you think “hey maybe this time I’m going to get through this relatively unharmed” and then SMACK, SMACK and once you are down SMAAAAACK!!!!! There is no such thing as chemo and unharmed. And so you suffer…
When we started this blog on the 11th August we never expected we’d be posting about raising funds for Lou. We also never expected that chemotherapy, surgery, radiation, more chemo, more radiation and immunotherapy wouldn’t work either. With the ongoing expense of fighting cancer now outweighing our diminishing income. We’re overcoming pride and asking for help.…
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…
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…
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…
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…
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…
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…
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…
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 can be used to achieve…
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 to you. Dom
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…
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 remove barriers to the immune…
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 three rounds but then grew…
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)– Prof Richard Kefford at Macquarie…
