Health Updates 2020
March 9th 2020
Had a scan on Wednesday with an appointment scheduled for the results on Thursday at 2pm. I am so thankful for Hong Kong’s efficiency in this manner as I am not patient at the best of times! I started Thursday therefore making pancakes with the kids when at 9am, the clinic rang me to ask me to come in immediately. Normally that is not a good sign. I was expecting new/more tumours in the bones/legs/back/tummy as all those areas have been hurting (a bit).
NOTHING in the bones (that's a first since July 2017!)
MINIMAL in the lungs
2 SMALLER liver tumours
NOTHING ELSE (well a bit of soft tissue activity but smaller than before)
With hindsight, I think my doctor is dealing with fewer patients right now (as many of his mainland Chinese patients are unable to travel here), so wanted to knock off early, hence the earlier appointment!
In October there were larger lung tumours, multiple bone (pelvis and spine) tumours, bigger liver tumours and tumours in gallbladder, stomach, more soft tissue etc. It’s a fantastic result. However, to be honest, I knew it would be better (but not this good) as October was simply horrendous and my tumour markers, while rising, are still only a fraction of what they were last October. In terms of the areas hurting me, that is still a mystery but the main thing is, cancer is not to blame! Nerve damage post chemo and radiation to the bone is one possible explanation.
I am suddenly a lot happier therefore with the knowledge that there is actually very little cancer in my body right now, even if it is growing....
Written March 2nd 2020, posted March 9th 2020
Apologies for the delay in writing an update but while Hong Kong schools remain closed to contain the coronavirus, I am homeschooling three children, which is pretty demanding on one's time. However, while I have done my fair share of shouting, I am sincerely enjoying the time with them and feel much closer and bonded to them. It’s such precious time that we wouldn’t normally have had. (That’s apart from the 2 days when the WiFi wasn’t working and all 3 had to hotspot me to do their school assignments and stay within 10 metres of me all day:)
My tumour markers are continuing to accelerate which is quite distressing so we booked a PET CT scan. The other annoyance (which paled into insignificance post markers tripling) is that the week before, I was diagnosed with shingles. It was actually quite a relief as I had suffered a tingling headache for a few days which I feared to be another brain tumour, so a shingles diagnosis felt like a positive victory. Unfortunately though it comes with big blisters which turn into ugly scabs, and while shingles could choose any part of the body on which to appear, in my case it chose the face. FFS. I am a hermit therefore until I look less unsightly. Luckily Hong Kong has become a lot less sociable due to COVID-19 so I haven’t missed out on too much.
Deep down I have been pretty upset about how things have turned sour so quickly but I just have to stay strong, keep busy researching options and enjoy the distraction of homeschooling and being a mum (which included the delight of de-licing one child’ s hair this morning!).
February 8th 2020
Unfortunately it looks like the good news might have ended... I am distraught. After 5 consecutive falls in my tumour markers, they are both up 38% and 70% in the last few weeks, accompanied by a few familiar aches and pains in the pelvis and lower abdoment. I feel like I have had a trapped nerve in my right leg as it has felt numb and/or had pins and needles in certain positions. I was hoping it was radiation damage to a nerve but now I am more inclined to think a tumour is growing. My doctor explained that sometimes tumour markers can reach a nadir after 6 cycles which doesn't necessarily mean the tumour growing. Frankly, I don't believe that! Whenever tumour markers have gone up in the last few years I have obsessively googled reasons that could have caused it other than the cancer growing, and apart from markers sometimes rising after a new chemo is introduced, as the bloodstream is flooded with dead cancer cells (never has happened to me though), or spiking after radiation due to inflammation (that has happened to me on 5 separate occassions), I have never read about such a nadir, but please email me if you have read research pointing to this, as I would love to be proved wrong!
It's so distressing for obvious reasons, but also frustrating as I now question everything I have been doing and wonder what the hell to do next. Plus, two ideas I had for treatment involve travelling overseas which isn't easy at the moment due to the coronavirus. One of those places was China, which is clearly off limits, and the other is Australia who may not now want a HK resident in their country!
We will push on with another cycle next week anyway. Doing chemo is hideous enough but when you know it's working, it becomes bearable. Doing it when you think it's not even working, is pretty soul destroying.
Back to the grindstone therefore as I consider future treatment ideas, send some emails and review my supplements and repurposed drugs. Currently researching hydroxychloroquine, an antimalarial pill...
Just to brighten up my week further, I had a brain MRI. Not because of the above but because it's required by a doctor who is considering me for a trial. The written report takes 2 days to be released. I asked for a verbal update on the phone on the, which they have agreed to in the past. The straight up reply was "we only ring when it's bad". Well they didn't ring thankfully. I got the results today which are half decent. Not perfect, as there are 3 small tumours but these are residual ones from larger previous ones, and 3 is a lot better than 9 in the last scan in August, and a hell of a lot better than 24 last June. I will take that as a small victory therefore.
January 14th 2020
Hello! Since last chemo 2 weeks ago, I did immunotherapy one week ago and have had severe mucositis (inflammation and ulceration of lips, mouth and GI tract) for the past 8 days. It typically occurs days 7-9 after chemo and I often get it but this time was the worst to date. The cumulative effect of 35 chemo cycles over the past few years may be a contributor. It gave me a fat lip, sore throat and mouth which stopped me sleeping and eating/drinking properly for the period. I was actually terrified to see I had lost 15kg until I realised the scales had broken. Maybe my husband had rigged them to make us all feel better at Christmas. Just 2kg lost in fact. Anyway, I couldn’t give two hoots about any of the above because the treatment is still working as per tumour markers yesterday showing another 38% fall since Dec. 30th and 96% since we started on Oct. 28th. Woo hoo! Check out my Excel chart above (which is not Bitcoin as my friend first thought). The high at the beginning was diagnosis in June 2016 when I had 24 tumours across the lungs, liver, bone and peritoneum, reaching normal territory 6 months later when I was in remission, followed by the gradual climb up to the June peak this year when I had 24 brain tumours. Now we are in a far more comfortable position thankfully, but it's still not in the normal range.
However, my doctor thought my mouth wasn’t sufficiently recovered to do chemo this week so we will delay it until next Monday. No big deal.
Since none of the pharmaceutical drugs I had been given (Caphosol and Diflam mouthwashes, steroid cream) seemed to help my mouth, I have been researching natural remedies for mucositis:
These appear to include honey, coffee, chamomile and last but not least, placenta extract. So if you are soon to give birth, do get in touch. Joking. Most of my food has therefore been liquid, non-spicy and non-acidic while I have been stocking up on raw honey and even found a manuka based toothpaste. It's been pretty dull on the gastronomical front therefore, but Sunday night I turned a corner and managed a pizza!
I also applied to (a.k.a begged) approx. 30 interesting trials at the back end of last year, for none of which I was really eligible as they were all for different cancers (mine is rare) and seldom accept patients with previous (multiple) brain metastases. Most of them therefore didn’t reply and 25% of them rejected me but one professor replied, explaining I didn’t meet the eligibility criteria but he was willing to seek a waiver on my behalf. Much to my surprise and luck, this has just been granted so talks continue. I am not definitely accepted, but it’s the nearest I have ever got. Still depends on a few tests. And then I will need to weigh it up versus other options but what’s reassurring is having options...
On the repurposed front I have been looking into dipyridamole, the favourite "big gun" from Jane McLelland's book "How to Starve Cancer", which she discusses in detail. It's a platelet inhibitor given to prevent blood clots after heart valve replacement surgery. and this research discusses how it can benefit patients with triple negative breast cancer:
and may be syngergistic with the chemo 5FU that I am on:
I have also been researching DCA (sodium dichloroacetate) available on Amazon and commonly used on children with congenital mitochondria disorders:
Not only has DCA shown strong anti-tumour activity across various cancers as monotherapy, it is also synergistic with the chemo, 5FU, that I am doing, AND targets TP53 where I am mutated:
In am now looking forward to a week of no treatment, being able to eat and speak (although I think my husband has been ejoying the peace) and being able to commit myself fully to the family!