Health Updates 2020
May 24th 2020
It's been an unpleasant week, the minutaie of which I will endeavour to describe with modest detail to avoid turning your stomach.
First, I had the MRI results of my lumbar spine and plexus, as ordered by the orthopaedic surgeon to investigate my femoral and L2 weakness. The results of this were “unremarkable” which may sound slightly derogatory, but in fact is highly desirable in medical terms as means everything looks normal! However, although I am grateful that he didn’t spot any raging cancer destroying my spine, we still haven't got an answer to our questions. Why can’t I kneel, crouch or put on my right sock?! He did note some disc degeneration however, caused by wear and tear and which may be causing my “girdle” ache, and therefore bestowed me with my first lumbar corset. He took some length to explain how it worked and how to wear it, after which he appeared slightly surprised by my first and only question: did it come in another colour? Black it is then. This helps support the back and I feel a small benefit while wearing it, although I fear it may be quite uncomfortable in the HK heat.
Given my recent increased discomfort in the lower back, I have been taking painkillers, some of which I know only too well can cause constipation. I thought I was managing it fairly adeptly with the daily delightful glass of psyllium husk (1 tsp of husk in 1 glass of water) and a high fibre diet, but in the last few weeks noticed my tummy getting bigger and more uncomfortable, while simultaneously losing weight, an unusual lockdown phenonemon. After failing to respond to some natural laxatives earlier in the week, such was my bloating this Thursday coupled with excruciating abdominal pain thatI begged my oncologist to relieve me of chemo for the week while we rectified the above. After examination he admitted me to hospital where an X-ray showed my entire intestine to be blocked and within a couple of hours I had the pleasure of my first enema; I’ll spare you my husband’s jokes. This wasn’t terribly successful but may have “chipped at the iceberg”. Following this were 2 industrial strength “Fleet” laxatives over the course of 2 days. I’ve definitely had more relaxing stays! On the first day, my husband asked the doctor if I would come home that night to which he replied “do you really want to manage this at home?!” Back now thankfully and I feel decidedly “lighter” although not pain free and upset to now find pelvic floor issues getting worse. I am falling apart!
It’s hard to retain optimism right now, although after 48 hours of watching CNN news in hospital, it feels silly to complain. I just feel like I am deteriorating, with some of these problems due to (radiation) treatment damage, so wouldn’t even benefit from a cancer cure.
Chemo is rescheduled for Monday, which judging from last week’s rise in markers, is keeping me stable at best, another concern. We will need to change tack very soon.
After 4 months of unforgettably precious family time with the children at home, they are now back at school, albeit for half days only. Without the deluge of daily zooms and constant requests for snacks, this will free up my time to explore other medical options, restart an exercise routine which has seemed impossible to fit in during homeschooling, and address my pelvic floor problems with a physio and/or gynaecologist. All this while wearing my lumbar corset and snacking on prunes, obv...
May 8th 2020
What a rollercoaster of a week (for a change)! To reiterate what happened last week, I had a very uncomfortable MRI and a gruesome result from it that my oncologist summed up as "the bones are bad". The report included "extensive bony metastases" and a fractured sacrum.
I then saw my radiation oncologist this Monday to see if there were any tumours not previously irradiated that could be zapped. Bear in mind I have had radiation already thrice to the sacrum while many cancer patients only have radiation to an area once. While radiation might destroy tumours, it incurs a lot of a collateral damage to the body so can't be repeated often. He looked at the MRI films shaking his head in disbelief. "The sacrum is looking pretty crappy" was his, er, professional interpretation. He explained that it was impossible to tell from the scan what was cancer and what was damaged tissue due to past radiation, and despite my reduced mobility/agility, he thought best not to radiate again, as it might cause more harm than good. He warned me how fragile my bones were, due to 4 years of cancer and multiple treatments, that they could easily fracture, and that I ought to procure a 4 pronged stick, a quadropod, to use when walking. I left the meeting underwhelmed.
Tuesday however brought a revelation, when I met an orthopaedic surgeon. For a start, he explained that my sacrum is not fractured. He understood how the radiographer performing the MRI had concluded from those images that it was fractured, but by comparing it with my PET CT from March, it was clear that there was no fracture. The discomfort, numbness and pins and needles in the leg and pelvis are more likely caused by radiation induced nerve damage. He also pointed out that there were no active cancer tumours in the bones, but the reason it looked like that on the film, was that in fact I had sclerosis. This is the result of my bi monthly Denusomab injections (oft given to cancer patients with bone mets) for 4 years which strengthen the bone and prevent fractures. Thank you Denusomab! My bones are therefore very strong, not broken and not even at risk of fracture! Who knew?! I don't need a quadropod therefore, which is good as my friends had been threatening me with all manner of “pimp” canes.
After a physical examination, he established I was actually pretty strong, but that there are clear agility issues linked to weakness in L2 and the femoral nerve, with possible femoral nerve palsy. I will have another MRI next week of the lumbar spine and right lumbar plexus to investigate this.
We also had an open discussion about the use of repurposed drugs in cancer, this time with respect to their effect on bone health, mentioning that statins could contribute towards myalgia and peripheral neuropathy. He also check my levels of Vitamin D, folate and B12 to ensure they were at optimum levels.
What a turnaround to hear that instead of a fractured sacrum, extensive metastases and fragile bones at high risk of fracture, in fact I have strong bones and sclerosis (which is not really a problem apparently). This is also a very good lesson in the importance of always seeking a second opinion! I literally skipped (with a limp) out of there into M&S Food, where every British woman goes in time of celebration (or sorrow), and better still, I went out to dinner on Wednesday night. Note all the tables had screens between them...
I had chemo yesterday so am bit grotty today and who knows what horrors (or pleasures) next week’s MRI could herald, but for now I remain high on the revelation of how strong my bones are! Wishing you a wonderful weekend X
April 30th 2020 (uploaded May 6th)
Hi everyone,
Hope you are all enjoying the sunshine.
I had chemo today which was uneventful in itself (tumour markers will be tested next week) but had pretty bad results from the leg and pelvis MRI from Tuesday. For a start, the scan itself did not go very well. I was required to lie completely still on my back for 2 hours which is intolerable for me given the discomfort in my sacrum, so despite a hefty dosing of opiates beforehand, I had to press the panic button 3 times to ask for breaks and hot water bottles. We got there in the end and I rewarded myself after with some hydrangea on sale outside.
I walked into my doctor’s office this morning to his opening words “the bones are bad”. Straight to the point. The report was pretty lengthy in problems which include a fractured sacrum and extensive bone metastases. It’s unclear which are old and new so this will be reviewed by my radiation oncologist on Monday with a view to radiating anything new. My doctor isn’t hopeful here. He has also referred me to a neuropathic surgeon in case he can suggest anything, but again, isn’t that hopeful.
I am not actually in much pain, but have noticed a marked deterioration in my agility around the right leg to the extent that I have to use my hands to physically lift my right leg to get into the car, and putting on a right sock is near impossible. I have occasionally asked the children to help me get dressed therefore, which the older two find laughable while my youngest sweetly reminds them “Mummy looked after us when we were babies, now it’s our turn to look after her”. Incomprehensible compassion from a four year old.
I know the above doesn’t read too well but I don’t feel too despondent. I have dealt with worse scan results (24 brain mets tops it). I am hoping my two meetings next week yield something fruitful and am beyond grateful to be in Hong Kong where two referrals can take place next week compared to cancer patients in the rest of the world who I realise have had their care put on hold due to COVID-19.
Anyone got any exciting bank holiday plans? Xx
April 21st 2020
Hope you had a lovely Easter - ours didn’t feel like any other day really, apart from the obligatory torrent of chocolate eggs and hunt(s). I haven’t had the best week of news so have been feeling a bit flat.
I am uncertain this new chemo is working as I am suffering a lot more discomfort in the pelvic area: achey right leg, numbness in the glute and shooting pains around the sacrum and right leg. I also feel decidedly less flexible and tend to groan like an old lady if I need to pick up something from the floor. Even reaching my right foot in the bath to wash it is a challenge. Lyrica, prescribed for neuropathic pain, seems to help, and has avoided me reaching for opiates, but its accompanying dizziness scares me I have new brain mets. Other previous symptoms seem to have gone however (e.g. less abdominal pain). I did round 3 last Thursday and we will test tumour markers this week with round 4 to see it if it has been working.
When I was first diagnosed, I used to jot down all my meeting notes and ideas in a notebook, but that soon became redundant when I had too much digital material to store, so I moved to Evernote, a note taking app, which was more helpful, until I discovered Mindnode a few months ago which has revolutionised my research process! I always have such a crazy, chaotic decision tree going on in my head of what I should try, in what order, and all the "what if' scenarios along the way. Mindnode is a perfect way to catalogue all my research links supporting treatment ideas, trials to apply for, doctors I should contact, etc. I thoroughly recommend it for all patients or anyone with a project or research idea (and am not affiliated to them in any way!)
I have also been rejected from a trial I was keen to get on, which is disappointing, but I have a few more ideas, so just got to keep swimming!
My oncologist is also keen to try a PARP inhibitor along with a checkpoint inhibitor. Once the borders open up again post corona, there should be more opportunities. Everything now feels like a bit of a punt, but I guess that’s how it has always been, and has worked out so far for (almost) 4 years. And yesterday Hong Kong recorded zero new coronavirus infections, which is definitely something to celebrate.
April 11th 2020
I hope you are all well and safely ensconced at home with your lovely families while dodging the virus. Fortunately, since Hong Kong was quick to impose contain the virus, my cancer care has not been disrupted in this country, however it has put paid to a few ideas I was considering overseas such as a trial in Australia which has now rejected me to due to quarantine issues, and another treatment I was researching in China, who are no longer permitting foreign nationals to enter the country. The successful treatment (Tecentriq, Avastin, Onivyde and 5FU), I began last October has definitely stopped working as my tumour markers have been rising fast since February. Since we believe the first two drugs have done a good job controlling the brain thus far, we will retain these two drugs but switch the chemo to Abraxane. I did this before successfully for 5 cycles (with Gemcitabine) in Jan - Feb 2019, and hope that the resistance gained is now lost, in part at least. This began just over a week ago. Chemo will be weekly with Avastin and Tecentriq every 3 weeks. The side effects have been manageble thus far, but given the increased discomfort around my pelvis, I am not sure it's working.
The hope is that the new chemo regime bridges the next few weeks (months?) after which the world might be an easier place to travel around so I can get to my ground breaking, curative trial that I know is there somewhere!!
I have been dabbling in repurposed drugs since diagnosis (pharmaceutical drugs prescribed for conditions other than cancer that also have anti cancer properties) and in the absence of a cure/vaccine for COVID-19, it’s natural that the medical world is looking to repurpose existing drugs to cure/alleviate corona symptoms. I have been thrilled to read that I am already taking a lot of these drugs in trials so I have been cataloguing useful research links about these as a result. I will create a separate page on this site of these links, in case of interest.
Lots of love to everyone and please stay home and safe! X
March 9th 2020
Goodish news!
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).
In fact....
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)
Amazing...
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:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5736079
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:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3829204/
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:
https://www.nature.com/articles/s41388-019-1035-8
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!
X