Health Updates July - December 2018
See new page for 2019 updates
December 6th 2018
Given the half decent scan results we have decided to return to good ol' Folfirinox chemo, which I was supposed to do this Tuesday- Thursday this week. However, I got turned away due to a low white blood cell (1.3). I thought this could be remedied with a Neulasta (WBC booster) shot after my chemo, but then learnt that while the shot pushes up the WBC, it crashes the platelets, which are also on the low side. After 12 cycles Folfirinox in 2016, I needed a platelet infusion, and I am not far off those levels now.
I was quite disappointed not to press on with chemo, but my tumour marker results cheered me up, which were fractionally down for a change! It also meant I was in good shape to receive the Christmas tree which arrived yesterday, one of my favourite moments of the year, and also our nine year wedding anniversary which we celebrated at Madame Fu, while I added on a cheeky trip to the Mandarin this morning for a facial. I am planning on thoroughly enjoying the next few Christmassy days with the family until the next chemo onslaught, but just in case you think things were improving or settling down, the oh too familiar back pain has returned with a vengeance as of 1am last night, so f--- know what's going on now!
December 3rd 2018
Given my rising tumour markers, we decided to do a PET CT scan last week of which the results were half decent. It showed that of the 40 lung tumours present in August's scan, there are just 10 remaining, and these are mostly ametabaloic (i.e. not active). The bone tumours are also slightly less active (accounting for the reduction in pain) and the lymph node involvement is less. However, although the comparison of scans in August & November shows an improvement, it doesn't reflect the recent trend in tumour markers. Perhaps if I had been scanned a month ago, it would have looked even better for example? My HK oncologist wants to change chemo drugs whereas my London doctor wants to eek out as much as he can from the current regime. I have a Skype with him this evening to discuss this, then will be back at the HK clinic tomorrow with a plan of action.
Otherwise, I have been looking into a new (to me ) repurposed drug: Disulfuram. Commonly known as Antabuse, this is the pill given to recovering alcoholics which will make them violently ill if they even sip alcohol. However, there are promising studies on its anti tumour activity. Mouse models has shown it can make my very own chemo, Folfirinox, around 75% more effective:
https://www.sciencedirect.com/science/article/pii/S0304383517305153
I even found a clinical trial where they are recruiting patients, but to be eligible, they must be doing Folfirinox while facing rising tumour markers - is this fate?!
https://clinicaltrials.gov/ct2/show/NCT03714555
Then I found a phase 2b lung cancer patient trial where they combined it with a different chemotherapy regime (40mg 3* day) showing decent long term survivor data:
https://www.ncbi.nlm.nih.gov/m/pubmed/25777347/
Tempting...
This week I also formed a new support group in Hong Kong, which I have named Cancer Collaborate Asia. I wanted to create a group of like minded cancer patients (or caregivers if they are keen), with cancer probably (but not exclusively) at a supposedly incurable stage, who like to research their treatment protocols as much as I do, possibly want to push some boundaries, and who place a great importance on scientific data supporting their decisions. I am already part of a few wonderful groups like this worldwide, thanks to the internet, and feel very up to speed on treatment ideas in the West, but sometimes feel I lack basic knowledge of what's on my doorstep, in Hong Kong and across Asia. As per this report published by UBS, there is huge commitment to growing biotech in China, which had in 2017 more trials ongoing for CAR-T therapy than the US and Europe combined. I therefore wanted to form a group where we could discuss everything from trials in China, access to repurposed drugs in Hong Kong, local oncologists, conferences in the region and more.
From biotech to brows, having lost the majority of these during the last 5 cycles of chemo, I enrolled the gorgeous Ali Wilde in Hong Kong this week to help me look more human. Not only is she a very talented make up artist, she prides herself on using only natural, organic and eco-friendly products. Having lost all of my hair, most of my eyelashes and half my brows, I felt in need of a little expert care and I learnt tonnes of tricks from her including this beaut: "eyebrows should be sisters rather than twins" - that's going to add half an hour a day back to life which is about the time I had been spending making sure my brows were perfectly symmetrical!
November 25th 2018
Unfortunately I got the dreaded news this week that my beloved Folfirinox chemo, that cleared up 23 tumours across my body in 2016, has stopped working. When my markers rose fractionally two weeks ago we hoped this was a blip, but the second consecutive rise reported this week confirms the trend and worry that the cancer has gained raised resistance. The second time around for this chemo regime, despite the 21 month break, was never expected to be quite as successful as before, but I was counting on it seeing me through to 2019, allowing me to enjoy Christmas, my very favourite time of year!
I am obviously upset and deflated as that’s one big bullet of ammunition used up. I was hoping it could be my fallback between other more experimental but potentially curative treatments. Anyway, we just have to get back on the horse and try other ideas. Having to deal with this emotionally and practically while on chemo is tough however. We still pushed on with this last fifth cycle as it looks like it is at least slowing the growth, albeit not stopping it. Normally I can indulge in my chemo recovery with the help of Netflix but this week I have felt like l I should be constantly reading research and emailing my contacts for advice.
My HK oncologist wants to change chemo regimes in 2 weeks’ time to Gemzar and Abraxane, adding in Avastin. We may do a liquid biopsy (a simple albeit costly blood test) which restests for mutations, as the last time these were tested was as diagnosis in June 2016. This might open the door to other treatments. A tumour biopsy would be more accurate however but unlikely to be possible right now as the tumours are still too small (a good thing!). Also considering a few other ideas including a targeted therapy trial, a targeted drug for my EGFR amplification (I read some compelling research on Cetuximab and amplifications at 4am:) http://cancerdiscovery.aacrjournals.org/content/candisc/early/2018/02/15/2159-8290.CD-17-1260.full.pdf
Not sure whether or not I will have a scan just yet. It’s always useful to have as a baseline before the next treatment but also good to spare my body the radiation, as I and my doctor could probably predict what it would show: yes still tumours in bone (some pain still) and lungs(?) but fewer, smaller than before chemo, as I have been off all painkillers now for 2 weeks. I am scheduling second opinions right left and centre in Hong Kong and across the world thanks to all the contacts I have made in this journey.
So in the true tune of Thanksgiving, as my green bean casserole cooks in the oven (don’t worry am not hosting while on a chemo IV, it’s for the kids’ school party), let me be thankful for the fact that the chemo did work a short while and removed the majority of my bone pain, that I have tonnes more energy recently and have been exercising, looking after the kids properly, and even been to a few parties at the weekend! Long let that continue while I find the next drug that works for me.
And if you are shopping on Amazon for Black Friday sales and Christmas, remember that by registering with Amazon Smile (which takes about 30 seconds), you can choose a charity of your choice and Amazon will donate 0.5% of your total purchase price each time, at no additional cost to you. For my Amazon.com account I choose the US charity The Cholangiocarcinoma Foundation and for my amazon.co.uk account I choose the AMMF, another charity dedicated to the research and improvement of lives with those dealing with bile duct cancer. Another charity I strongly support is the Anti Cancer Fund (www.anticancerfund.org) who work hard to fund trials and research on repurposed drugs, those already FDA approved for conditions other than cancer that are also showing promise in cancer. Since already FDA approved, drug companies are unlikely to fund further costly trials but the Anti Cancer Fund will and has such as a recent trial where they created a basket of repurposed drugs most suitable for the treatment of recurring glioblastoma, recently reporting efficacy in 50% of patients. I have been in touch to see if they would consider setting up something similar for cholangiocarcinoma.
In other news, I am thrilled to have been asked to speak at a global conference on cholangiocarcinoma, organised by the Cholangiocarcinoma Foundation, taking place in the US in January, and have just been asked to be the Ambassador of the new British charity, CONCH, also dedicated to the cause. There is so much work to be done in this under-researched and underfunded area of cancer so I am hoping to make a difference while learning from others.
Happy Thanksgiving and be thankful for those that love you, that you love, and your health.

November 12th 2018
Last week I did my fourth cycle of Folfirinox chemo so spent most of it on the sofa looking for decent film fodder. Mrs Maisel (97% on Rotten Tomatoes!) and Homecoming saw me through the worst of it.
As you may have picked up by now, tumour markers are the single most important number in my life, which determine (rightly or wrongly) my degree of positivity, tilt of research and general disposition. Like the day, albeit inversely, of a stock market trader, if they are down I am happy, if they are up I am scared. Unfortunately after the 3rd round of chemo, I learnt last week that they had risen slightly (9%, which is still considered stable...) so that was a bit unexpected and upsetting as it could mean the treatment is already failing and the cancer has gained resistance. However it could just be a blip and they could continue to fall next time. I am keeping my fingers crossed that it's just a blip obviously, as frankly I am feeling wonderful. This is day 4 now (and counting) of not taking ANY painkillers at all for the tumours in my back. I had been taking NSAIDS such as Celebrex (most anti tumour reported here) for over a year now, and during the summer, added in a fair amout of Tramadol and Ultracet before finally conceding to Oxycontin and taking up to 40mg of that a day for a few months. However, after just one cycle of chemo, I managed to eliminate the Oxy, despite the "hangover" that came with it, and in the last 3 cycles, I have phased out the Celebrex and Arcoxia totally so even if the chemo has now stopped working now, at least it did a good job clearing up some of the mess. I also have tonnes of energy, have been hiking or swimming most days and running around after the kids. Life is good...
Anyway, I wasn't feeling quite so positive when I received the tumour markers last week. It’s bad enough recovering from chemo without additional anxiety. Up until now the elation I derive from seeing falling tumour markers seems to offset any negative feelings from the chemo side effects, so last week was a little tough emotionally, but I made myself a list of all the options I see on the table, which made me feel better, in every sense. I will discuss these with my oncologist next visit if he hasn’t kicked me out of his office before I have finished, and that’s not because he is hasty - I adore him - it is I who am lengthy and apparently, he has other patients... WTF?!
Here they are:
- continue Folforinox chemo if markers fall or even if they remain stable
- add Maraviroc (HIV drug) to chemo to resensitize cells to chemo? Read this study.
- change chemo to Abraxane or Gemcitabine/Cisplatin if markers rise next week
- add in an EGFR inhibitor. Research which one but possibly Afatinib which seems to work on EGFR amplifications (which I have/had) rather than mutations (subject to biopsy of tissue or blood?). Is Osmertinib an option or is that really only for NSCLC? This article is a very neatly explained piece on the role of Osmertinib in EGFR mutant cancers: https://www.onclive.com/conference-coverage/ny-lung-2018/ny-lung-camidge-breaks-down-oncogenedriven-nsclc- add in an antiangiogenic e.g Avastin
- see if any tumours in lungs able big enough to biopsy - unlikely (I will be off the blood thinners in few weeks/month - basically 3 months after the clot was found but now looks to have disappeared so fit for a biopsy) then send off to Foundation One/peptide vaccine makerin Germany/TILS?
- do liquid biopsy if tumour tissue not avail to retest mutations
- radiate/cryoablate (London)a different pelvic tumour
- look into Yeliva
- explore CAR-T options in China esp the one focusing on EGFR
- Look at Cimavax EGFR vaccine in Cuba
In the meantime I am trying to eat better as have let a fair amount of rubbish crawl back into my diet in an effort/excuse to gain weight, and I want to try and fast before/during chemo which I feel I can afford to do weight wise as have gained 5kg since starting chemo, unusually! It’s amazing what your body can do when you re-introduce it to ice cream and crisps! Fasting has been shown to increase the potency of the chemo while mitigating the side effects. There is a trial for this ongoing sponsored by the Mayo clinic: https://clinicaltrials.gov/ct2/show/NCT01175837
And here is some more info on fasting around chemo: https://bmccancer.biomedcentral.com/articles/10.1186/s12885-018-4245-5
So plenty of things to research and try out. There is also an ESMO oncology conference next week in Singapore, which which will unfortunately clash with my chemo but at least I can read the abstracts from my bed and listen to some livestreams. That's in between Christmas shopping on the John Lewis website, naturally...
OCTOBER 19TH 2018
Last post I mentioned I had been turned away from chemo due to a low white blood cell (WBC) count, which was quite distressing not just from the health perspective but logisticially, as it meant my chemo schedule was rejigged meaning I should have been doing chemo instead of holidaying with my family over October half term. A week later however, my WBC recovered with a vengeance, possibly thanks to my improved diet and supplementation regime focusing on upping the white blood cells (green leafy veg, citrus fruits, very balanced diet, green tea, more melatonin, fish oil, Ashwhaganda, no curcumin) based on studies I found on Pubmed. Here is the study on Ashwhaganda for example that shows it improved neutropenia in mice: https://www.ncbi.nlm.nih.gov/pubmed/11480235
We then persuaded my doctor to delay my subsequent cycle by a few days meaning we managed to get to the Philippines (very accessible when you live in Hong Kong) for a wonderful week's holiday. Plenty of sun, sea, snorkelling and lots of snoozes. The photo above is from this trip. I had to return just one day earlier than my family in order to have chemo, but frankly the sheer bliss of flying alone possibly made up for missing the last day, as any parent travelling with young children will understand!
My tumour markers fell another 28% after the second cycle, which is decent in most people's eyes and shows the chemo is working. However, I can't help but compare it to the numbers in 2016 which although starting from a higher base, showed a steeper fall at this stage, but I appreciate it's still early days. I am not sure I ever examined a Excel spreadsheet when I worked in banking quite as thoroughly as my home made tumour marker excel sheet! Like a share price, I look for every pattern that might predict its future performance, and spend hours trying to analyse what led to the greatest falls and how I can emulate it! My oncologist will no doubt tell me it's out of my control and I just need to do the chemo and be glad it's falling, possibly not to the extent it did in 2016 as it's my second time, however while recovering on the sofa, I can be mainly found watching Netflix while constantly looking up what might potentiate the chemo in the supplement and repurposed drug world, the results of which you can read here: supplements to take on chemo.
As I have mentioned before, I am big fan of repurposed drugs, which are pharmaceutical drugs already FDA approved for conditions other than cancer, that happen to also show anti-tumour activity. The most well known in terms of showing clinical benefit with very limited toxicity are metformin, atorvastatin and mebendezole, the latter of which is a worming tablet, so at the very least, one thing I can tell you with complete confidence is that I DO NOT HAVE WORMS! A case study however has recently been doing the rounds about a 60 year old US finance executive who believes he cured himself from his terminal lung cancer with a canine dog worming tablet, already safely tested on humans, called febendezole. You can read his story here: https://www.mycancerstory.rocks/single-post/2016/08/22/Shake-up-your-life-how-to-change-your-own-perspective
so if you happen to be a dog owner (I am not), feel free to forward me your vet's number! Whatever it takes...
I have now done three cycles of chemo and we are aiming for 8. This is 4 fewer than in 2016 as my body is unlikely to tolerate the the toxicities so well second time around. I am desperately trying to get my ducks in a row for what we do post chemo and am looking at different targeted, immunotherapy and CAR-T treatments. There is nothing FDA approved for my condition in this regard, but there are plenty of ideas out there, albeit costly and experimental, which I am trying to research. These include:
1. Cimavax - a Cuban designed vaccine targeting EGFR where I have a mutation. Available in Cuba during a short stay, and also at Roswell Park in New York.
The results show promise in improving survival but are not overwhelming:
2. Combining SBRT on any remaining tumours with an immunotherapy drug. Could be done in Hong Kong.
3. CAR-T - this is much more advanced in blood cancers than in solid tumours such as my own, but the field is progressing quickly, and seem to be some targeting EGFR which may suit me, and many on my doorstep in China. Researching their reputation and gaining comfort with their data however may be challenging! This article briefly summarises the CAR-T landscape as it stands: https://www.targetedonc.com/publications/targeted-therapy-news/2018/oct-2018/experts-remark-on-car-tcell-therapy-at-1year-milestone-where-it-is-headed
4. EGFR inhibitor - as per next generation sequencing in 2016, my tumour showed a 30X amplification in EGFR which we have yet to target but could try afatinib or another TKI.
5. Combine and EGFR inhibitor with an antio-angiogenic e.g. Avastin. Check out this case study of an EGFR mutant gallbladder cancer patient who recovered significantly with this approach: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228189/
6. Personalised peptide vaccines and/or TILS: I must have fresh tumour tissue to proceed with either of these, and since none was accessible prior to chemo, it's unlikely after shrinkage that there will be any either. This is a good thing in many ways, but annoying that I can't proceed with the creation of one of these treatments.
In terms of how I feel, I tend to have one bad week when I am doing chemo, the first 4 days of which I am firmly anchored to the sofa with a sick bowl, making various diva demands for esoteric food and drink items while binge watching certain TV series. The following week, I am hiking, swimming, lunching but most importantly, trying to be a good mummy to my children.
SEPTEMBER 27TH 2018
A couple of weeks ago, I restarted chemo, 21 months after my last chemo cycle in December 2016. After multiple opinions, we felt this was the best way to get things under control for the time being. All my ideas for targeting the EGFR mutation and exploring immunotherapy options in terms of peptide vaccines and TILS are therefore on the hold, partly because we need fresh tumour tissue for most of these, however we chose not to biospy the lungs as the procedure looked a bit risky (tumours were embedded rather than superficial) and may well have been too small anyway to yield any useful amount of tissue.
Having completed 12 cycles of Folfirinox chemo in 2016, I was fairly comfortable walking into cycle 1; I knew my enemy. I was even looking forward to it in a strange way, hoping that it produced the same outstanding response in 2016 and the elation accompanying it. Folfirinox is a combination of 5 chemotherapy drugs: oxaliplatin, leucovorin, irinotecan and 5-FU, and is probably one of the most toxic and aggressive chemo regimes out there, but thankfully as I am young and in fairly good shape all things considered, I was able to tolerate it pretty well before and hope to again. I was wrong! This first cycle really knocked me for six and I can't remember feeling this bad at any point in 2016. Not sure why it was so brutal, maybe because it's a bit of a shock to the system after 2 years of clean living and no chemo, whereas in 2016, I used to just compare it to a bad hangover!
The side effects are various. First, there is the nausea. I was actually rarely sick in 2016, but often felt nauseous, and I felt the same last week. It was so bad that I barely drank which obviously dehydrated me and no doubt aggravated my recovery, so I have demanded a saline IV for my next cycle in order to maintain hydration. Then there is the sensitivity to the cold. For a few days, I cannot open the fridge or eat anything chilled as it produces a strange, painful sensation. Even when eating fruit from the fridge, I have to leave it out for 30 minutes in order for it to come to room temperature. Next are the salivary glands. When I start to eat someting and my salivary glands produce saliva, I can feel the glands doing so, and it's painful. A few mouthfuls in, and it's fine again. Then the tear ducts.... It hurts to cry - what's sadder than that?! Note these last two side effects are not commonly reported, just my personal experience. Diarrhoea is a more common side effect however, but I have managed to escape it luckily, perhaps because I supplement with curcumin which is said to reduce irinotecan induced diarrhoea as per this study on colorectal cancer.
Next is the fatigue, which gave me the excuse for 4 naps in one day last week, one of them beginning during a friend's visit (sorry!) and another lasting 4 hours. Sleep is restorative after all, so it's important to give into it I believe. Last but not least is the dreaded hair loss. In 2016, this was very gradual, allowing me to smoothly transition from straw hats, to scarves and only really needing a wig by month four. This time, forget it.... In the space of 3 days, I would say I have lost the majority and expect to bald by the weekend. Thank goodness this is my second time round and I am slightly tougher as I can imagine the sheer speed of the loss would have been terribly upsetting first time around.
When my hair grew back brunette after my first lot of chemo, everyone was quite surprised. After a slightly enthusiastic summer in the Greek Islands with a bottle of Sun-In, aged 14, I turned blonde and never looked back, in fact I had been blonde for so long, even my own mother believed that was my natural colour. Blonde was therefore the obvious choice for my wigs in 2016. However, having let it grow back naturally as a brunette, I will be choosing some darker numbers this time, and have spent most of the last few days perusing Headcovers.com who really do have an awesome and very large collection of wigs, headscarves, hats, turbans, earrings to accompany the above and more. It's a US site who ship internationally and I can't recommend it enough. In 2016 I bought one of the Margu wigs attached to an alice band, which I found far more wearable than regular wigs as it's the alice band on your forehead rather than hair, which looks more realistic and is far more comfortable.
Yesterday, 2 weeks after the first cycle, I returned to the clinic for cycle 2. First he was thrilled to see I had put on a few kilos in 2 weeks; those full English breakfasts have been doing their job! Secondly I am delighted to have drastically cut my painkillers in the last 2 weeks, which really should be a reflection of the chemo working, already. The pain from the tumours in my sacrum has diminished significantly. Thirdly, despite the fatigue, nausea, dehydration, hair loss and sensitivity to cold, my tumour markers have already fallen by more than they did in the first round of chemo 2016! Hallelujah! This is a huge relief, as it's not guaranteed to work second time round as you may have developed a resistance. Plus, it's refreshing to see the tumour markers fall after 16 months of consecutive gains!
However, obviously there is a catch; things could never be that simple huh?! My white blood cells were too damn low to proceed with cycle 2, so I was sent home pretty disappointed and need to wait another week to recover before we attempt cycle 2. This was a bit distressing to hear after only one cycle, but is apparently due to the radiation and cyberknife I had in 2017 which has suppressed my bone marrow function. Going forward we should be able to remedy it with fortnightly Neulasta injections which will give my white bloods cells a boost. I am currently walking around therefore with very low immunity so just trying to eat and sleep well, and NOT GET ILL before the next round. I have also been re-researching the hell out of all my supplements and repurposed drugs to ensure all either potentiate or mititage the side effects of Folfirinox chemo, the results of which you can read here:
SUPPLEMENTS TO TAKE DURING (FOLFIRINOX) CHEMO
SEPTEMBER 9TH 2018
I have now spent nearly two weeks trying to work out what to do next. I have had opinions in Hong Kong from three leading oncologists, with all believing I should restart Folfirinox chemotherapy, the hardcore but highly effective regime I did in 2016. Apparently, it "should" work well again, especially since I have left it more than 6 months since stopping, so resistance should be lost. My last infusion was in fact 21 months ago. Tempus fugit! If someone could guarantee for me right now that it would work, I might even be excited at beginning it again to get the beast under control, however the uncertainty is making me super stressed! Once I see one set of tumour markers come in lower, I will relax.... That won't be for another week or so however.
One opinion however suggested I add in Nivolumab to the chemo, despite the fact that my tumour tissue taken at diagnosis is PD-1 negative. (I had my original tumour tissue, surgically removed at diagnosis in 2016 and stored in paraffin wax since then, tested for PD1 status this week. The institution performing the task were not terribly willing to do it as the result is apparently inaccurate unless you have lung cancer, and while I realise they know a lot more than me on the subject (!), I felt it was one more stone worth unturning, as a wildly positive result might warrant treatment with a checkpoint inhibitor as a monotherapy, which you can read more about here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5572324/)). Despite my result being negative there are still grounds for challenging my cancer with chemotherapy and immunotherapy simultaneously, as much as an oxymoron that might sound, with one whacking while the other stimulates the immune system! In fact, that's now a first line approach for lung cancers, even for those PD1 negative, as you can read here from a post as this year's ASCO: https://am.asco.org/frontline-pembrolizumab-and-chemotherapy-new-standard-care-metastatic-squamous-nsclc
However, Nivolumab can be fairly toxic from a financial point of view, so it was worth doing a spot of research here before blindly and painfully signing the cheque, so I explored the option of importing it from Amsterdam via this site: https://thesocialmedwork.com/opdivo-nivolumab with the idea that I buy it from here and only pay my doctor to administer it. Think of it as BYO while paying for corkage! Anyway, I have now had three top gastro-intestinal oncologists oppose the idea, in spite of the cost, with one paper suggesting it would be futile in cholangiocarcinoma (but is that definitely my diagnosis - maybe it's PRMC??) so that is now currently off the table, although I could change my mind! Please email me if you think I should do it and why! The main reason that most (protocol bound) doctors are against it is a lack of evidence, however, I recently found out that there are some phase I trials using it so I have contacted them in hope they might give me some preliminary data. We will see...
Another idea rather than chemo is to target my EGFR amplification, which was discovered during next generation sequencing of my tumour tissue in 2016. It is highly amplified to the tune of 30X. Apparently one EGFR inhibitor targeting mutations as well as amplifications is afatinib, which we may consider after chemo, although the facial rash is one side effect I could do without. At least a wig can cover up a bald head! It's bad enough to go through this without walking around looking dreadful... We could also consider Avastin (an antiangiogenic) with either erlotinib (see this phase II study https://www.ncbi.nlm.nih.gov/pubmed/20530271) or with panutimumab - see this case study of an elderly gentleman with advanced gallbladder cancer (not dissimilar to bile duct cancer as anatomically close by) who made a dramatic recovery combining these two, despite being offered hospice care just beforehand. In the end he passed away from an unrelated cause on a fishing trip, so that's one hobby I had better avoid:) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228189/
In terms of a biopsy, we have decided to delay it until the blod clot dissolves and I can safely come off the blood thinners, which is diappointing but the way to look at it is, if the chemo works then the tumours will then be too small to biospy (yippee!) and if it doesn't, we might get some decent tissue out of them for mutational testing, TILS or a peptide vaccine (yippee!)
In other news, I have been talking to various TILS creators to get the ball rolling for what could be a potentially curative treatment for the future. See this case study in cholangiocarcinoma: http://science.sciencemag.org/content/344/6184/641 and you have no doubt read the more famous case study of the lady with metastatic breast cancer, the darling of the press! https://www.telegraph.co.uk/news/2018/06/04/miracle-cure-saves-woman-breast-cancer-given-months-live/ At present, the lung tumours are no doubt too small (a good thing!) to start a TILS treatment as I understand the requirement is 0.5cm cubed of tissue. My biggest is only 1cm but possibly not in 3 dimensions. For anyone else researching this, if you are unable to access the NIH trial, the Sheba Hospital in Israel is apparently considering melanoma and ovarian cancer patients privately, although be prepared for a big bill......! I also contacted a trial in Copenhagen but they do not accept non-Danish residents. Any nice single Danish men in HK?!
Besides TILS, I have been talking to a CAR-T therapy company which is making headway in blood cancers, but sadly it seems that the side effects are still possibly too toxic for solid tumours. I was actually warned against trying this a while back, with the doctor suggesting dementia could be a risk to which my husband responded by asking how one could tell if this symptom had occurred:)
Anyway, I can't quite believe that after this many emails, phone calls, meetings and late night sessions on pub med, that I am going back to my very old chemo regime on Tuesday, but if it works (albeit temporarily), who cares, and thinking back to how much I have learnt since 2016 and how medicine has progressed, hopefully we will have another bright idea of what to do when it finishes.
Apologies if this whole post seems a bit technical to non-cancer patients, but I am hoping it will help those with cancer in case they are in the same boat and looking for ideas. In layman terms and summary, I feel fine day to day with painkillers totally masking any pain from my bone tumours, am a bit stressed about starting chemo again and worried it's not going to work, but I am going to plough all my positive energy into it and look forward to seeing and chatting to my friends in the daytime, getting into some good series on Netflix, nourishing myself with healing meals and of course, like every good expat wife, having lots of foot massages XXX
SEPTEMBER 2ND 2018
I have just been discharged from hospital after a close shave with a blood clot! Let this be a warning to anyone who likes to ignore symptoms and hope they go away. Luckily I have always been a hypochondriac and never ignore any symptoms; how ironic it is therefore that I managed to get stage 4 cancer of a flipping symptom-free cancer! Anyway, I digress... On Thursday & Friday last week I noticed that my right arm felt slightly achey but I put it down to having to yank my toddler around day to day, who is currently having a lot of tantrums. Never having experienced the "terrible twos" with my older two, our youngest is certainly making up for it, no doubt as she has just started pre-school so maybe feels a little separation anxiety. Then, on Saturday morning I noticed that as well as the achey feeling in my right arm, the veins were distended along with a vein on the right side of my neck. I went straight to my oncologist's clinic for the open and he agreed there must be some kind of blockage, probably associated with the port (silicone device implanted in my chest to facilitate meds) and he admitted me immediately to hospital with a suspected thrombosis in the superior vena cava. There I had a chest CT with contrast where they found a blood clot partly blocking a tube in the port, started me a on a course of blood thinners to dissolve the clot and kept me overnight. I have now been discharged and feel fine, in fact I went straight from the hospital to neighbour's for a lunch party, followed by a swim! I will take the blood thinners (xaralto) for a few more days during which time the clot should dissolve. The veins are still bulging a bit in the neck, so if you see me you will know why - I have not started bodybuilding and taking steroids!
Annoyingly, my oncologist now wants to skip the lung biopsy for various safety reasons and proceed straight to chemo at the end of next week. I am not sure if I agree yet though, as I see this lung biopy as the GOLDEN OPPORTUNITY to get some fresh tumour tissue, recheck its mutations and send it to various people for analysis and creation of various treatments e.g. potentially a peptide vaccine or maybe TILS, although honestly there is is probably insufficient tissue at present for the latter. But we don't know if we don't try!!!! I now need to speak to a few more people and evaluate the risks for myself. Thank you for all your kind messages of support. Each one buoys me more than you would imagine XXX
AUGUST 31ST 2018
Holy moly, as my two year old has just learnt to say, it has been quite a week. Sadly I learnt on Tuesday that the last few months of treatment have been ineffective, as a scan performed on Friday shows disease progession in the lungs, bone and lymph nodes. The active lymph nodes are in the thorax (previously these were fine), the lungs now have 44 (!) tumours (seriously???) and the bone tumours have spread more around the pelvis, which I could have probably guessed as the pain seems to have spread accordingly. I have therefore been pretty heartbroken that the last few months' efforts have yielded so little. Anyway, tears aside, I just need to work jolly hard on making sure we make the very best decision next, as opinions are very divided right now on what to do next. I am knee deep in emails between doctors across the globe, and have been seeking lots of second, third, fourth - honestly I have lost counts of how many opinions I have sought and received, and I would probably stop seeking them if they showed any kind of convergence, but so far they don't which is most frustrating and confusing!
What does look likely at this point is that I will take a coagulation test on Monday, and if I pass it, have a lung biospy on Wednesday. If there is sufficient tissue, we will send it off to have my mutations tested by Foundation One (F1), although I have also been considering sequencing my entire exome with Personalis or ACT Genomics. Finding out the current mutations of the cancer (not "my" cancer, as I have been taught to say!) can help direct future targeted treatments and immunotherapies, so possibly open door to something exciting (a.k.a curative/durable!) Personalis has already turned me down however as I am not US based, and ACT Genomics, in a call today, actually dissuaded me from taking the whole exome test as they think their typical panel (ACT Onco Test) would suffice right now. They have also persuaded me that their testing is superior to Foundation One (of course they did!), explaining that since F1 started seeking FDA approval 2-3 year ago with a panel of 300 genes, more genes have been identified since then, which F1 can't include as the FDA only approved them for the first batch, but ACT does include, meaning ACT tests for a wider panel of 440 genes. However, are they actionable/treatable??? My oncologist had been fairly anti ACT as thought it didn't provide such a patient and doctor friendly report, but ACT assures me this isn't the case. I am just waiting for a sample report now so we can make a decision. I would also like to test for PD-1 status in either next week's biopsy, or from my original tumour tissue excised in 2016, so I have been looking into that, have been in touch with some TILS clinics to see if I might be eligible, although it's unlikely I have enough tumour tissue for that at present (which is a good thing!) and peptide makers, as well as some doctors in the UK running trials on targeted drugs. Everything I have just mentioned is more experimental in nature than the "standard of care", and maybe unlikely to happen in reality, but if you don't ask you don't get! I would imagine that the more likely scenario for me in the next couple of weeks is hardcore chemo, Folfirinox, the same one I did in 2016 so goodbye hair and hello Armitage Shanks. If I knew I would get such a durable and oustanding response from it as before, I would actually be quite excited, but I am scared it won't be as effective or even work at al, which is possible as I may be resistant to it. Anyway, there are many, many more bridges to crosss before I start worrying about that.
One very interesting meeting I had in Hong Kong this week was with a female oncologist I had been longing to meet as many of my fellow cancer friends have been raving about her. She strongly believes I have been wrongly diagnosed in terms of primary! As I may have mentioned before, officially my cancer is CUP (carcinoma of unknown primary), meaning they don't know where it began. This happens in 5-20% of cases, fewer as time goes by and diagnostics improve. I had multiple opinions at diagnosis therefore and the two largest, most reputable organisations that did their own pathology on the cancer tissue stated that it was officially unknown primary but concluded it as cholangiocarcinoma (bile duct cancer) with the second guess as primary retro-peritoneal mucinous carcinoma (PRMC). Of the 5 other opinions I sought at diagnosis, most concurred with bile duct, with the exception of one believing it to be PRMC. One of the reasons for believing it to be cholangiocarcinoma is that of all the tumour markers they tested, the only two elevated were C.E.A and C.A.19.9; the latter being the main tumour marker for bile duct and pancreatic cancer. With a clear pancreas yet several tumour near my bile ducts, bile duct cancer was the diagnosis. However the oncologist I saw this week believes the pathology report screams PRMC and that tumour markers are unreliable. PRMC is an extremely rare cancer, with around forty cases documented ever! It's not dissimilar to ovarian cancer, occurs more often in females between the age of 20 and 50, who present typically with a large mass in the retro-peritoneum, as I did - my original tumour from the retro-peritoneum measured 9cm. In the taxi on the way home, I went straight onto pubmed, and low and behold, the very first case study of PRMC I clicked on was of a girl in her 20s with PRCM, also presenting with elevated CEA and CA 19.9, just like me and a large peritoneal mass: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3406436/ I appreciate there are a few more data points to consider, but I am definitely going to do my homework on PRCM to see I can find any global experts and look into what treatments have worked for these other 40 patients. Thankfully one of my girlfriends took over this part of the research today and has now connected me on Facebook with two other PRMC patients and thereby creating a support group which is now 3 strong! At this rate we will have set up a Foundation by the end of next week:)
In other news, I have no doubt let slip some of my more natural and emotional therapies in recent times as I strongly believe I need to find the very best scientifically proven and cutting edge treatments to get through this; we all know that the traditional "standard of care" will not cure me. However, I do still believe in an integrated approach, embracing the best of all kinds of therapies, and have therefore started seeing a hypnotherapist. I have been twice so far, and while I can't guarantee I was definitely hypnotised, she certainly does put me into deep state of relaxation, and deeper each time, for which I am extremely thankful as things have been pretty frantic otherwise. However, if you see me walking around Central, naked while biting into a raw onion, you will know why:)
So sorry if I haven't been in touch of late, or let you know personally about this bad scan, but I have been absolutely up to my eyes in doctors' emails, phone calls and meetings since Tuesday. I now plan to take a couple of days "off" to digest, relax, sleep and be with my family, before making the big treatment decisions next week. Things may be quite scary and rocky for a while (for a change!) but I really appreciate all your messages, am always around for coffee, lunch, chats and I will certainly never turn down a foot massage! Don't write me off just yet please X
JULY 16th 2018
Sorry this update is a little belated, but I have been so frantic managing the kids on school holidays as well as my emotions which have been a bit of a mess lately. In my whole 25 months of living with stage 4 cancer, the last few weeks have been the toughest emotionally because things just seem to be getting worse and worse. Aside from the first two week of my diagnosis, by far the darkest fortnight of my life, everything afterwards just started to get better: I responded to treatment, my tumour markers fell off a cliff, my scans got clearer and clearer until I was in remission and everyone made me feel like a rockstar for getting through it all, but that was only the beginning... Since the recurrence in May 2017, things have just got worse and worse, and not receiving any good news over a sustained period of time is really taking its toll me on emotionally. Anyway, I try and concentrate my tears to during the times I take a shower, so that I can be as good a mum as possible the rest of the time, and children really are the very best tonic during difficult days. Any time I am feeling sorry for myself and my two year old asks me to take her to the loo (we are potty training her right now), I forget all the bad and think only of my love for them (despite all the poop)...
I had my tumour markers tested this week, knowing that any further rise would necessitate a scan and possibly an end to the current treatment schedule and return to hardcore chemo. I had been pretty anxious (for a change!) in the run up to the results therefore. My oncologist told me that if the numbers were stable or lower, we would cancel the scan (that had been provisionally booked) and press on to round 3. I asked him how he would define stable. His answer was +/-10%. Well one marker only rose 0.5% so within his acceptable range while the other rose +11%. Why are things never simple?! Anyway, after a few rapid whatsapp exchanges (bet he regrets the day he gave me his mobile number....), he considers it stable so we are pressing on with round 3.
My back pain is ever present but well controlled with pain killers, so I am managing the kids pretty well day to day, although I can't drive the car due to the meds I am on, which is a pain in the butt during school holidays. I have a fair amount of energy however, have been taking them to their camps, swimming, playdates etc, and have been playing badminton with them most days. I do tend to collapse on the sofa most evenings, but don't most mothers of 3 during the school holidays?!
As promised in my last post, I thought I would share the research I have found on two natural substances which could potentiate the activity or mitigate the side effects of my current low dose chemo, TS-1. I have almost finished two cycles and have had some nausea (actual as well as feeling sick a lot) and a bit of a fatigue, but am largely OK. I just make sure I always keep a sliced Granny Smith apple on me in case I get a sudden nausea attack, as well as peppermint oil to sniff. These are the two things which seem to help me far more than any prescribed anti-nausea pills. I can already see TS1 affecting my blood counts but everything (white blood cells, neutrophils) remains in range for now so nothing too worrying.
Despite living in Hong Kong for 8 years and with a serious illness for the last two, I have never consulted any Traditional Chinese Medicine (TCM) doctors, however I did come across this piece of research suggesting that Shi Quan Da Bu Tang could protect the bone marrow of those taking TS1 so I made my first trip to the TCM drug store last week to procure it! I first consulted with a TCM doctor to establish it was suitable for me and then bought it in a store on the Queen's Road. A prescription was not necessary. It's going to to be very difficult to ascertain if its helpful or not as I take a lot of other things, but I can tell you that after taking it with round 2 of chemo, my blood tests are superior to round 1 when I didn't take it! Every little helps and if there is no harm done, I don't see any downside from adding it to my protocol. It's also inexpensive at around $60 (HKD) for a month's supply.
Likewise I found some research suggesting that turkeytail mushroom/coriolus versicolor can improve survival in colorectal cancer patients when combined with Tegafur (ingredient in TS1) https://www.ncbi.nlm.nih.gov/pubmed/14997197
I have previously mentioned how much I have benefited from the free app from Memorial Sloan Kettering, About Herbs, a compendium of all the natural substances, herbs, botanicals, minerals, vitamins and natural therapies that supposedly can help prevent or treat cancer. I liked the fact that it was compiled by healthcare professional from MSK, one of the best cancer hospitals in the world and that it only uses academic and clinical research to support its claims. However, as usual there are two sides to every story, and I was interested to read a (slightly harsh perhaps) critique of the app from Science Based Medicine, that points out its shortcomings, lest you depend on it too much: https://sciencebasedmedicine.org/about-herbs-an-app-to-avoid/
I have also been reading some research on milk thistle which I have been taking daily since diagnosis in an effort to protect my liver.
This article from El Pais discusses how milk thistle has achieved shrinkage in brain mets in lung cancer patients: https://elpais.com/elpais/2018/06/11/ciencia/1528727883_239077.html and this research shows how it may protect the liver during chemotherapy, reverse resistance caused by chemotherapy, radiotherapy and targeted therapies, however most forms seem to be very poorly absorbed by the body with the exception of Eurosil 85, which is available OTC in Spain for non-alcoholic fatty liver disease. Luckily, I have friends currently holidaying in Spain! However, I latterly discovered the manufacturers include a large amount of Vitamin E in their formula which, in its synthetic form (food sources permissible) is not recommended for cancer patients as per this research: http://cancerpreventionresearch.aacrjournals.org/content/5/5/701
It's not exactly a good state of affairs to be rejoicing over "stable numbers" when I clearly would have loved a drop in the tumour markers, or better still not have to deal with frigging tumour markers or cancer at all, but we have to be thankful for small mercies right now, and be grateful that it is allowing my treatment to continue and that day to day, I lead normal(ish), happy(ish) and healthy(ish) life!
