Health Updates Jan - June 2018
JULY 2nd 2018
Tumour markers have shot up, the pain is still bad and generally I am pretty down, confused, frustrated and scared! I thought things were getting better, but it's apparently still too early to tell whether or not the current treatment is working. My doctors are unmoved by the recent rise in my markers and say I have just to have sit tight, take the painkillers and keep everything crossed that something works soon. Getting this news on the first day of my kids' school summer holidays felt like a shot in the head, but while it might have wrecked my afternoon, I must not let let it ruin a second more of my or their lives. We need to make every moment count. Easier said than done.
Tomorrow I start cycle 2 of TS1, the oral chemo - 5 pills a day. I am going to do everything in my limited power (which is how I currently feel - impotent) to get this show on the road. I may try to go more keto on the diet front, having relaxed things a bit in the last few months. TS1 is a relatively new chemotherapy drug so there is less research on interactions and combinations, however I have managed to dig up three natural substances which have been shown in trials to either increase the efficacy of TS1 or mititage its side effects. These are coriolus/turkeytail mushrooms which I can buy in capsule or tea form, shiitake mushrooms which I can buy fresh or take as supplements, and lastly, a slightly more osbscure one, juzentaihoto! This is prescribed in Kampo, the Japanese Traditional Medicine component of Traditional Chinese Medicine (TCM) and according to one study, has mitigated the side effects of TS1 regarding blood counts. Now to find a practitioner of Japanese Traditional Medicine in Hong Kong to prescribe it to me... I will post the links to this research here tomorrow once I have slept and recovered from a very emotionally draining day!
JUNE 20TH 2018
I have ended up being quite verbose in this update (!), so it you want to cut to the chase, the summary is that I am still in a lot of pain which is getting me down, am desperate to see an improvement in my bloodwork or pain (either of which could reflect that the treatment is working), last week received mixed messages on this, but today I found out my tumour markers are falling, so suddenly I feel a lot better....
The last few weeks have been pretty unpleasant. The pain in my sacrum bone has continued to plague me. Instead of its previous dull ache, it now gives me sporadic episodes of throbbing pain, immobilising me and causing me to frantically read all the leaflets in my medication boxes to check I am not about to overdose. After getting this far, it would be a shame to OD on paracetamol:) Unfortunately, my daily NSAID is no longer cutting it, and I have had to reluctantly move up the spectrum of analgesia into the opiates. I have resisted these for a while, because taking them feels like an admission of failure, and that I am deteriorating, but I have to just stay positive, pop the pills and believe that soon the recent treatment wiIl kick in and I will improve. However last few weeks have seen me housebound (so thank you to all my visitors, I really appreciate it!) and anxious as I am terrified that the treatment might not work and that we will have used up another bullet... I also find myself fielding more and more heartbreaking questions from my kids “but why can’t you pick me up from school?” Well, at least I am home when they get here.
I also caught a vomiting bug last week from my youngest meaning I have been further laid up on the sofa, nourished mainly with Heinz baked beans and homemade apple sauce, my comfort foods, washing them down with kombucha to replenish the bacteria in my gut destroyed by this gastric bug. There are also studies supporting probiotics in improving the outcome of some treatment programmes: https://www.uchicagomedicine.org/cancer-articles/specific-microbes-in-digestive-tract-can-boost-success-for-cancer-immunotherapy so I am currently re-researching which is the best probiotic to buy. An old friend and sports nutritionist has recommended sachets of VSL on Amazon as well as something called Symby. Chris Woolams of Cancer Active mentions 20 billion is practitioner’s strength, with any exceeding that a waste of money, and that you need the strains species Lactobacillus and Bifidobacteria and especially the strains L.ramnosus and B. Infantis. Any feedback welcome! Meanwhile I am necking the 'buch.
Last week I had my tumour markers tested, the bane of my life and many other cancer patients’ I am sure. For some people, these markers bounce around and their condition can only be judged by a PET CT scan. However, this cannot be performed too often for health reasons given the radioactive dye with which they inject you. My markers, on the other hand, have been so far indicative of the underlying picture. This means I can track my progress non-invasively with a fortnightly blood test, the results of which are emailed to me a few hours later. During this time, I cease to function as a normal human being. I check my email every frigging minute for the result, despite having set up a distinctive, extra loud, extra annoying, vibrating ring tone on my phone to sound on the receipt of any message from any member of staff working at the clinic! It’s a tense time to say the least, and the outcome is fairly binary. If it’s down, I rejoice, credit myself for all my research (tongue in cheek...), treatment decisions, dietary and supplement choices, WhatsApp the family with the news and generally dance around the flat. If it’s up however, I normally cry, lose all trust in my protocol and frantically search the internet for any possible explanation other than the dreaded but most likely: that the cancer has progressed. The tension right now is even more pronounced as I am dying (only I can use this phrase) to see a response from my recent treatment, however premature it may be, because despite being inherently impatient, I am in constant pain. In fact, last week wasn’t so black and white. The CA 19.9 fell 17%, which, all other things being equal, would delight me, especially as my oncologist emphasises this is the most important marker for me. However, the CEA rose a whopping 66% which is one of their largest divergences to date according to my spreadsheet. So all in all a bit confusing but I am just told to wait, be patient and not to read too much into numbers so early into my treatment programme. In the meantime, I need to manage the pain with my pharmacy of pain relief and cross my fingers that something works soon.
This is all taking its toll on me emotionally so I have retreated a little on the social front and am just trying to be the best mother, wife and homemaker that I can in case there is a day when I can’t, while naturally continuing my medical research on my biggest project to date: survival. Interior design isn't really my forte but I am also trying my best to redecorate my 7 year old daughter's room which I am really enjoying and it's good to have a different focus for once.
However, after three weeks of pain, despair and worry, today I had some good news! My tumour markers were tested again and both showed at 15% fall so I am feeling much brighter and praying these are early signs of the treatment working. I plot my tumour markers in Excel and right now, from looking at the chart, if you imagined they were share prices, they would be a raging SELL, so am hoping this trend will continue!
On the research side, I have been encouraged by some of the recent news coming out of this year's ASCO (American Society of Clinical Oncology). Dr Katie Kelley does a good summary ( http://www.ascopost.com/issues/april-10-2018/future-treatment-of-cholangiocarcinoma/) of the main mutations affecting the cholangiocarcinoma community and which drugs are being developed for these. It seems you are most in luck (well not that lucky I realise:) to have FGFR fusions, with many benefiting from the recent TAS 120 trial. I don’t have this but instead an amplification in EGFR. There is a phase III trial (https://clinicaltrials.gov/ct2/show/NCT03093870) to open combining Varlitinib with capecitabine, and I see the trial locations are even in Hong Kong and China, so perhaps something I could consider for the future.
It's also good to see more research on the TP53 mutation in relation to cholangiocarcinoma, which I have: http://cancerres.aacrjournals.org/content/early/2018/06/05/0008-5472.CAN-17-1123
With regard to genetic testing, the FDA has now approved the Foundation One test for next generation sequencing of tumour tissue, the results of which can drive treatment decisions in the immunotherapy and targeted routes. Since I don't have any tumour tissue to biopsy at present (can't biopsy the bone, the lung tumours are too small to biopsy), I have been looking into liquid biopsies where they test the mutations found in the blood, but according to a recent study, the concordance between soft tissue and blood biopsies is quite low, suggesting a high degree of inaccuracy: https://am.asco.org/ngs-becomes-more-common-expectations-must-be-managed. The focus on immunotherapy also remains strong, and while this refers to lung cancer rather than my cancer (bile duct), it's interesting to see that now Keytruda is the first line treatment for NSCLC rather than chemo.
So that's it - I am still plodding on and hope things will start to improve soon! X
MAY 28TH 2018
I had a productive time in Europe and can't thank everyone enough for the messages, visits and general support. Every single one means so much to me in boosting morale and empowering me to believe I can do this, because trust me, however positively I may write and appear, there have been a few dark days lately and my poor family have been the brunt of lots of tears. I try to be strong as much as possible, especially for the children, but now and then the reality hits and I need a good old cry. I think that's only human given my situation. Anyway, Europe went well...
Since getting back to Hong Kong however, my back pain has worsened, possibly due to the long flight as well as jet lag and I have never been good at managing the latter, with which my husband will undoubtedly agree! Day three after a longhaul flight always reduces me to tears and this time has possibly been the worst to date. For 48 hours I have been writhing around my apartment, sleeping at erratic hours and wondering which painkiller to pop next. Everyone keeps telling me the pain will subside and it's just the flight which has caused it but I didn't actually find the journey too bad, plus the pain feels more internal, which I find a bit worrying. My fear is that the bone may have fractured ever so slightly due to the tumour weakening it, as that is what happened at diagnosis, so even more than usual I must not lift anything. I am even having to reduce the number of items in my make up bag to lighten my handbag. Things are getting serious! Anyway, may be a good night's sleep will solve a lot of problems. Sorry to everyone I have ranted and cried at in the last 48 hours!
Things seem a little brighter now as I am just back from the oncologist with a veritable smorgasbord of painkillers and a prescription for TS1, an oral chemo which I will begin this week. TS1 is a supposedly superior drug to the more well known capecitebine/Xeloda but only available in Asia as it didn't pass the FDA's side effect profile for Caucasians. You can read about the drug compared to its peers in this report: This isn't a major issue for me apparently (I'll confirm this at a later date!) as the difference and side effects are both minor in my doctor's opinion. On the whole, it's not as toxic as my first chemo, Folforinox, and I won't lose my hair again, which is good, not just for vanity's sake but to avoid difficult questions from the kids who are now two years older than last round... Nor will it be as cumbersome as the first chemo, as instead of a 48 hour IV that I used to carry around with me attached to my port, I will be simply popping 5 pills a day for two weeks on then one week off. The side effects should be gastro-intestinal but mild and since I didn't fare too badly on Folforinox, I am hoping this will be even easier. My blood counts may suffer however, meaning my immune system will be slightly suppressed so please let me know if your lovely children are germ ridden before coming into my house! And excuse me if we do air kisses...
My tumour markers also came in flat on the last three weeks which is very reassuring to know that the things are not off to to the races. They do remain highly elevated however and there is a rising trend in LDH (lactate dehydrogenase) which is now just out of range, and possibly another reflection of progression in the cancer as per this article on LDH from Nature.
APRIL 27TH 2018
Last week was quite a week... Beginning with a court appearance for a minor driving offence (not my fault) followed by Tuesday's disappointing scan results, I then spent the next few days deep in research to work out my next step. Both my oncologists in Hong Kong & London would prescribe chemo, such is their job, but since we know this won't cure me and I am in relatively good health (feel fine, perfect blood tests apart from elevated tumour markers), I am determined to try something more experimental but potentially curative. Unfortunately there are no trials for which I might be eligible or that interest me, although please feel free to forward me any if you know otherwise! There are some immunotherapy treatments out there however, for which I could be eligible, which may cure, stabilise or at least delay the progression of my cancer, without the corresponding whack to my immune system to be expeceted from chemo. I have therefore made plans to explore some of these ideas in Europe in a few weeks. Please note that these are still highly unlikely to cure me, but there is a chance, and that's all I need to remain positive and hopeful. Whatever it takes...
APRIL 24TH 2018 - NEW LUNG TUMOURS
I got the results from my PET CT scan this morning. I guess, deep down, I was hoping to see the cancer contained to the bone, like the last few scans. However, in addition to the bone tumour, which is now fractionally larger, there are new multiple nodules in the lungs, each measuring a couple of millimetres. On the plus side, there is still nothing in the liver, which is good news, or anywhere else, which takes us to 15 months without active cancer in the liver since the RFA in January 2017. It's also almost 17 months since I finished chemo, so I have had a pretty good stretch without systemic treatment, in other words the chemo and RFA in 2016-17 produced an excellent and durable response.
My oncologist in Hong Kong would like to restart chemotherapy ASAP, namely Folforinox which I had before, but we all know that this is merely applying a band aid to the problem and not a solution. While my tumour burden is relatively low and I feel fine, I would like to take this opportunity to pursue something more experimental but potentially curative. Annoyingly the lung nodules are too small to biopsy (but obviously I am pleased they are small!) so we can't redo my genetic sequencing with Foundation One. And since I still don't have any soft tissue to biopsy/extract, we can't pursue the personalised peptide vaccine or TILS route. However there are other immunotherapies in Europe that we are looking into and I will write more about these soon. I have a lot of emails, phone calls and research to do in the coming days.
Obviously it's upsetting to discover there has been progression in the cancer, but it could open the door to a sustainable or curative treatment, so I remain hopeful!
Just after I finished writing this, my blood tests from today arrived by email and showed a 20% fall in CA 19.9 and a 7% rise in CEA, so things have been pretty stable if not good in the last 2-3 weeks at least, and I would have been rejoicing about them had it not been for the new lung nodules! The rollercoaster never stops...
APRIL 20TH 2018
Today I had a PET CT scan, the results of which will be available on Tuesday. It didn't go terribly smoothly. I cannot lie on my back comfortably for more than a few minutes as the pressure exerted on the sacrum bone where the tumour lies, is intolerable. At night I sleep on my front. However, it is impossible to perform the scan in any position other than supine, so I need significant analgesia to get through the 20 minute exam. On waking I popped my usual celebrex, for pain relief, but also given its apparent ability to target apoptosis pathways in cancer (https://www.ncbi.nlm.nih.gov/pubmed/21345578) and on arrival at the imaging centre, I took a couple of valium (admittedly enjoyable but I only used it as a muscle relaxant to help with the pain, honest), and once the radiogragher had injected me with the radioactive dye, I took 5mg of oral morphine and drifted off into a haze while I waited for the dye to circulate my veins and highlight any cancerous areas. During this time, I started watching "How to Survive Terminal Cancer" a film based on the story of Professor Ben Williams who cured himself of a terminal brain tumour with his own self-prescribed cocktail of repurposed drugs, an outcome I am striving to emulate!
However, despite the celebrex, valium and morphine, the pain from lying on my back for 20 minutes was unbearable and I had to demand a break half way through, which didn't delight the radiographer, and I left pretty upset. Anyway, they apparently got the images they needed which is all that really matters. Friends wished me luck with words such as "hope it goes well" and "it'll be fine" and I am grateful, as always, for their support. However this time, I don't think there is necessarily a good or bad outcome (famous last words!). I have created an enormous flowchart in my head of all the possible scenarios and how I can respond to each. Here are the 6 main scenarios I envisage including blue sky (no cancer), worst case (extensive spread) and base case (confined to the bone):
1. NO ACTIVE CANCER - we know this is frankly impossible since last the PET scan showed a 3cm tumour in the sacrum, I have had no conventional treatment since, the pain is worse and tumour markers are higher.
2. SHRINKAGE IN SACRUM TUMOUR - highly unlikely given the above.
3. CANCER REMAINS CONFINED TO SACRUM BONE - this is possible since my blood tests do not reflect issues in the liver. Given I have had my quota of radiation for at least another 8 months, we will look at cryoablation or radiofrequency ablation to this area. I have already emailed places in the UK who do cryoablation so I am teed up for this outcome.
4. SPREAD TO OTHER BONES - will consider RT or SBRT to these areas, and have this done in Hong Kong at the Sanitorium who apparently have the some of best radiation equipment in the world.
5. SPREAD TO SOFT TISSUE E.G. LUNGS or LIVER - as long as the tumour is in an accessible location, we will do a biopsy to retest my genetic mutations/sequencing. We will also extract cancer cells with a view to performing one or several of the following forms of immunotherapy:
personalised cancer peptide vaccine - in touch with clinics in Germany & Switzerland about this. Need exome sequencing done for one of these.
TILs - tumour infiltrating lymphocytes - in touch with clinics in Israel about this
dentritic cell therapy in Germany
We will also look into storing my cancer cells at Storemytumor.com and transplanting the tumour cells into a mouse to create a patient derived xenograft.
6. EXTENSIVE, LIFE THREATENING SPREAD - unlikely given last scan was 3 month ago and confined to the bone, plus my biochemistry and haematology blood tests are totally normal and I feel great. However I felt great at diagnosis with 24 tumours across the body so we can't rule anything out! If this happens, I imagine we will do still do a biopsy to retest mutations, and extract cells for any future immunotherapy treatment but also start Folforinox chemo to tie me over...
Note these are all my ideas and I have yet to run them past my oncologist but I feel he will be on board with most of them, apart from the mouse idea at which he has already rolled his eyes!
APRIL 15TH 2018
Less of a health update, more of a diary entry on my current thoughts.
Last week I connected with a notable gentlemen in Oslo who has devoted his life to saving his young wife from stage 4 lung cancer. His blog alunglife.com details his journey and I spent most of last night reading it from the beginning. I am about a three quarters of the way through and I cannot thank him enough for sharing his knowledge gained from his research. Thoroughly frustrated with the standard of care offered by the state, he has gone out on limb to find the best, cutting edge treatment for his wife and he has been inspirational to me in my next steps into the world of immunotherapy, namely a personalised cancer vaccine. Check out these trial results for personalised vaccines in ovarian cancer, which look very promising, not to mention this paper detailing the remission of a 51 year old lady with metastatic cholangiocarcinoma (my diagnosis) thanks to a peptide vaccine.
I have always known that chemotherapy and radiation were not a cure, although I am thankful for them getting me as far as I am now. Reducing my tumour burden from 24 to 0 is no mean feat, however temporary it might have been. Likewise I knew it was probably unlikely that diet and supplements could really move the needle albeit supportive as they are in reducing side effects and maintaining good health outside of cancer. However, from my recent research, I have never been more hopeful for the future. I really do believe that there probably is a cure out there, not one cure for everyone, but something for someone and I just need to find the one for me! It will no doubt be in the field of immunotherapy, and I am hoping that we can try one shortly, and if it doesn't work, we may have to fall back on chemo for a while for some shrinkage before we find the next immunotherapy that might work for me. And one day we will find the one. That is my (fairly simplistic) hope anyway...
APRIL 12TH 2018
Slightly disappointing marker results this week... CA 19.9 up 60% and CEA up 40%, so not as stable as the last two check ups but still not galloping/doubling. Otherwise my haematology and biochemistry blood results are totally normal. Two previous check ups revealed elevated bilirubin (1.9, so not too out of range), which I feared was due to my increased dosage of celecoxib (for pain relief AND since it targets apoptosis pathways in cancer: but my bilirubin has now returned to range so my fears are allayed. On physical examination, I appear normal (great in fact!) so my oncologist remains happy to wait until after my next scan for the next check up. The PET CT scan was scheduled for 24th April but my back pain has increased in the last few days so I have brought the scan forward by a whopping 4 days to April 20th as I just want to get on with it (no change in my impatience) and start addressing things rather than waiting to get worse. The scenarios in my head resulting from this scan are almost endless that I feel like drawing a massive flow chart on the dining table to map them out. Maybe I will.
If the tumour remains confined to the bone, I will look into cryoablation, in fact I have spent most of today emailing places around the world who offer this. Hong Kong doesn't but I found a few places in the UK, France and the US, so now am just trying to learn more about their reputations and costs. However if there is cancer elsewhere in the body, in soft tissue such as the liver or lungs, we will definitely do a biopsy and send it off to Foundation One for retesting of my genetic mutations. This may open up the door to other targeted treatments and immunotherapy. Last time I was tested was June 2016, at diagnosis, which threw up an amplification in EGFR and a mutation TP53. There could be different or additional mutations now so it's worth retesting in the vain hope that I might see high MSI (microsatellite instability) or mismatch repair deficiency, either of which would make me eligible for Keytruda, an immunotherapy drug. We could always try Keytruda without these mutations, but it's less likely to work and won't be covered by insurance. We would also like to take some of the cells from the biopsy in order to use them in one (or all, cost permitting!) of the following: TILs (tumour infiltrating lymphocytes), dentritic cell therapy and personalised cancer vaccines. I am currently researching all the places that offer these and may have to plan a road trip to meet some of the providers. All of these are likely to be expensive so we need to do our due diligence in selecting which one to do and who is to do it.
Last week I connected with a notable gentlemen in Oslo who has devoted his life to saving his young wife from stage 4 lung cancer. His blog alunglife.com details his journey and I spent most of last night reading it from the beginning. I am about a three quarters of the way through and I cannot thank him enough for sharing his knowledge gained from his research. Thoroughly frustrated with the standard of care offered by the state, he has gone out on limb to find the best, cutting edge treatment for his wife and he has been inspirational to me in my next steps into the world of immunotherapy, namely a personalised cancer vaccine. Check out these trial results for personalised vaccines in ovarian cancer, which look very promising.
I have always known that chemotherapy and radiation were not a cure, although I am thankful for them getting me as far as I am now. Likewise I knew it was probably unlikely that diet and supplements could really move the needle although I certainly they have both been supportive in reducing side effects and maintaining general good health. However, from my recent research, I have never been more hopeful. I really do believe that there probably is a cure out there, not one cure for everyone, but something for someone and I just need to find the one for me! There are so many immunotherapies out there that we can try, funds and health permitting, and I am hoping that we can try one shortly, and if it doesn't work, we may have to fall back on chemo for a while for some shrinkage before we find the next immunotherapy that might work for me. And one day we will find the one. That is my hope anyway...
MARCH 25TH 2018
My markers rose a little this fortnight, but only 17% for the CA 19.9 and 4% for the CEA, which I consider pretty stable, reinforcing the view that my foray into repurposed drugs may be paying off. We are therefore continuing to delay chemo, and will look to do a scan around April 24th and make a decision after that.
I also took a trip this week to Bangkok to attend, for the second year in a row, the 2nd Pan Asian Cholangiocarcinoma Conference. Weekends away don't get sexier than this. This has left me literally exploding with excitement from the information I have learnt, opportunities to exploit and contacts made. One idea in the future is to look into TILs (tumour infiltrating lymphocytes), a form of immunotherapy. We need cancerous soft tissue to start this off, which I currently don't have (which is a good thing!), as the disease is only present in my bone right now, but if/when we do this is definitely something we can explore, and that the fact that my EGFR is amplified means there is a higher probability that this could work. NIH in the US offers this as part of a trial, but having spoken to the nurse there, they are not accepting non US residents, so we may be forced to find a private centre undertaking this treatment, or I need to find an American husband, whichever is more cost effective:)
Also, having been told in Hong Kong, that there is nothing more we can do to this bone tumour for a while, having had both radiation and cyberknife to it in 2017, other US oncologists tell me I could be a candidate for ablation or cyroablation. I also heard about improved drugs coming out to target the EGFR mutation where I have an amplification, and it was recommended, that if/when I do have soft tissue to biopsy, not only do I get it resequenced at Foundation One, but I look into getting it implanted into a mouse, or even a few mice if there is enough, for laboratory studies, and to see what drugs work well on it. Not sure how logistically viable or affordable that option is however! Anyway I have a further 10 sides of notes I won't bore you with but those were the highlights, and as a result, never have I been more hopeful.
If you or a loved one is suffering from cancer or another incurable/chronic illness, I cannot emphasise enough how productive these conferences are. In the space of a couple of days under one roof, you can listen to countless presentations and round table discussions on cutting edge treatments, drugs and trials etc, while, far more importantly, spend your breaks and mealtimes having one on one discussions with dozens of doctors. Imagine the (no doubt prohibitive) logistics and costs of setting up all those meetings across the world and attending each clinic in person!
Your doctor may not highlight these events to you but charities dedicated to your cause may know or organise something similar. In my case, it’s the US charity, the Cholangiocarcinoma Foundation who organises a yearly event in Utah and also the AMMF in the UK whose conference takes place in London. This one in Bangkok was a collaboration between the CCF, Thai hospitals and various US centres including MD Anderson and the Mayo.
Go, listen, learn, network and follow up! Be your own health advocate as no one will do this better than you!
MARCH 6TH 2018
Today, I had some pretty good news, well in the world of stage 4 cancer it is anyway... I went to the doctor for the first time in three weeks; normally I have a check up every 2 weeks but we went skiing for a week in Japan, so it was delayed. I wasn't allowed to ski sadly for fear of breaking already fragile bones, but the joy I gained from watching the children learn, breathing the mountain air and eating my body weight in Hokkaido snow crabs (almost) made up for it! Anyway, after a 3 week break I was slightly anxious I would be seeing galloping tumour markers, but in fact they were relatively stable! The CA 19.9 was only up 7% while the CEA was higher, but that one has remained static for the previous 2 check ups. We will never know for sure why this stability has occurred, but I do wonder and hope if it's anything to do with the recent cocktail of repurposed drugs I have been delving into...
FEB 13TH 2018
Tumour markers are still rising but not galloping. One (CEA) has actually not moved for a month now, although it is still abnormally high at 200; <5 is normal. The other (more important one, CA 19.9) is only up 30% in the last 2 weeks, but still high at 800 whereas normal is <35. My oncologist remains happy to delay chemo until my back pain becomes intolerable, as I am still only popping the odd painkiller every other day (although I can feel it getting bit worse), or there is evidence of disease elsewhere. As per the scan in late Jan, there was nothing apart from the bone tumour and re my blood tests today, all organ functions remain perfect so I am pretty good really. We are also looking into a liquid biopsy blood test to see if any of my mutations have changed in the last 18 months. Last time we tested was at diagnosis, from soft tissue, and I only had a mutation in TP53 (common in 50% of cancer patients) and amplified EGFR. The first is currently untreatable by conventional means (although statins may help - see this research: whereas the EGFR amplification can be targeted further down the line with an inhibitor such as Tarceva. My UK oncologistrly respectful of my vanity (!), seems happy to delay this as it may give me a terrible facial rash. Unfortunately, as per the last genetic testing, I didn't possess the right mutations which would lend themselves to a favourable outcome from immunotherapy, such as high MSI and mismatch repair deficiency. However, your mutations may change and increase over time, as cancer progresses and in the case of a recurrence, so it might be productive to test them now. While I don't have any diseased soft tissue to biopsy at present (which is a good thing!), only the bone, we can do a liquid biopsy in the form of a blood test to look for mutations. We are therefore looking into this test, available from Foundation One. Next check up is in three weeks.
FEB 1ST 2018
Apologies if I don't always update this on the day of tests etc but I often get distracted by the kids and so forth. Feel free to whatsapp me if you are interested. I never mind being asked, in fact I am flattered that you care! Anyway, Tuesday's check up was largely uneventful. One tumour marker (C.E.A) was unchanged which is good, although still abnormally high at approx. 200. The CA 19.9 marker continues to climb to 600 from 400 (bearing in mind normal is <35), however my oncologist is still happy to delay treatment until my sacrum pain gets worse, markers double or liver enzymes increase. So, I am very pleased to be able to concentrate myself on far more important things this week, like my birthday!
Also, I was delighted to have a positive discussion with my doctor about dentritic cell therapy, a form of immunotherapy available in Germany, Japan and the US for which I would be eligible. That's not to say it would work but we could at least give it go. In the challenging game of stage 4 cancer, the thing I dread is running out of options, but today I feel like we added an option, and given all the positive updates I read from the annual cholangiocarcinoma conference currently taking place in Salt Lake City, hopefully there will be more to come as this disease is treated less like an orphan disease and receives more funding for research.
Next check up is February 13th.
The Cholangiocarcinoma Foundation is a US charity dedicated to bile duct cancer, and who I have had the dubious honour of getting to know in the last 20 months. In the future, I will write more about them and the spectacular job they do in raising funds and awareness to help patients with this rare cancer, but for now, you may like to read the interview I did with them last week: https://cholangiocarcinoma.org/empowerment-helen-scotts-story/
JANUARY 24TH 2018
Unfortunately there was a bit of a turnaround. Over the weekend of January 12th, my pain around the sacrum increased and tumour markers showed a rise on January 16th. My Hong Kong oncologist suggested starting chemo immediately but my London one ordered a PET CT scan first. Had this on Jan 19th and got the results yesterday. That tumour in the bone is largely unchanged since the PET CT scan performed before the cyberknife treatment began, which is very disappointing, although the pain is slightly reduced. I have currently no recourse to analgesia. However, I am grateful that the rest of the body remains clear, and while this bone metastasis is a bit painful, it doesn't really cause me any bother. My doctor is therefore happy to delay chemo until I become more symptomatic, have galloping tumour markers or elevated liver enzymes. Next check up is Jan 30th...
JANUARY 2nd 2018
I completed three fractions of cyberknife at the Sanitorium Hospital in Hong Kong in the middle of December. Thanks to the thoroughly enjoyable cocktail of pethidine and valium, I sailed through the week and succeeded in lying exceedingly still for each 45 minute session while the robotic arm worked its magic. Annoyingly they didn't test my tumour markers immediately before the treatment, so I don't have a baseline for comparison. However, given the last figure for CA 19.9 was 800 on November 14th and they were roughly doubling every 2 weeks, I estimate a number around 3000 as the baseline. Since my treatment finished, the pain has reduced, although not totally gone away. I have had zero recourse to analgesia post treatment and can now lie on my side comfortably. Prior to treatment, sleeping on my tummy was the only way... However, I still can't lie on my back comfortably for more than a few minutes. Things are improving gradually however, day by day, so I am hoping for further pain reduction. Today, January 2nd, I had my tumour markers tested, and was pleasantly surprised to hear that they have fallen to 350 from my estimate of 3000. It's a long a way off normal (<35) but they should fall further in the weeks to come. As usual, the doctors do a good job in managing expectations and have told me to expect pain reduction, possible shrinkage but remind me it's unlikely to disappear. Well, today is a good day. Markers are falling, pain is diminishing and I feel absolutely fine, if not great. HAPPY NEW YEAR! Next check up is in 2 weeks...