Health Updates Jan - Jun 2019
CLICK HERE FOR JULY 2019 onwards updates
June 23rd 2019
Hi everyone,
Difficult times. We discovered the presence of over 20 new brain tumours around 10 days ago. My main HK oncologist was keen to treat me with whole brain radiation which would involve around 10 sessions over 2 weeks along with its possibly significant cognitive impairments. A friend who recently when through this at Sloan Kettering in NYC was prescribed Memantine (an Alzheimer’s drug) to help with this. There was hopefully the chance of sparing the hippocampus ( the important bit!) in the brain but my oncologist told me the positioning of the tumours made this impossible. I reached out to many esteemed neurooncologists and neurosurgeons as well as patients I have met dealing with brain mets, typically lung cancer patients as my kind of cancer rarely hits the brain. Everyone told me to avoid full brain radiation where possible and to fight to get them treated individually with cyberknife, gammaknife or SRS. I understand why avoiding the whole brain is preferable but I also respect my oncologist’s opinion and reasoning that if we can see 20 brain mets, there must be many other small sprouting ones that we can’t see, so focused brain radiation would be futile.
Anyway, thanks to a much appreciated connection from a school friend to one of London’s top neurooncologists, we dropboxxed him files of my latest scans and he agreed to treat me in London with gammaknife. However, my radiation oncologist in HK who works alongside my main doctor then agreed to replicate his technique using SRS in Hong Kong. To avoid leaving my family I opted for the HK treatment which took place on Tuesday at St Teresa’s. It was pain free, non invasive and quite incredible that they could zap 24 (final count) brain tumours in 20 minutes.
I left the hospital within 10 minutes of completing the procedure feeling fine but within an hour of two of being at home, started vomiting, which happened every couple of hours for about 24 hours, so I was admitted to hospital on Wednesday for IV fluids, anti sickness meds and an increase in steroids. They weren’t expecting such extreme side effects, but with hindsight, perhaps they hadn’t sufficiently dosed me with steroids before the procedure, which then caused an brain swelling and the intense nausea.
I stopped vomiting on Wednesday night and while I could have happily convalesced in hospital longer, I begged them to discharge me to let me attend the kids’ end of term summer concerts.
I am now at home watching Netflix while eating and drinking well. I even managed to swim six widths of the pool this afternoon and had a lady come and give me a pedicure yesterday. Whatever is going on in the rest of my body, is is practically illegal in Hong Kong to have imperfect toes so I simply cannot let standards drop!
A new treatment regime begins on Monday: Gem-Ox with Avastin. I have had the first two chemo drugs before albeit in different combinations, but Avastin, an anti-angiogenic, is a new one for me and should hopefully reach the brain which chemo doesn’t. Although apparently, the zapping of 24 brain lesions may have somewhat loosened the blood brain barrier!
It’s a tough time in many ways as besides feeling ill and weak, I am scared of running out of options and/or being too weak to try them. For the first time in 3 years of dealing with this, I feel really quite debilitated. I can’t drive or be the active mum and wife I want to be, but I am so fortunate to have such a great support network around me of family and friends. While a long term recovery seems quite unlikely at this point, although I won’t ever give up, to maintain my sanity I am focusing on short term goals. These are:
- To be well enough to do the new regime on Monday. It won’t matter how I look or feel, it will all be about the blood tests.
- To be recovered from chemo sufficiently (again according to blood tests) the next week to go on a family holiday.
Please keep everything crossed that I start to feel less foggy and more energetic soon, that the new regime works and that we can all get through this (again!) Xxx
June 7th 2019
Just as I thought we might be able to cruise on Tagrisso for a while and enjoy the summer, I got well and truly smacked in the face yesterday with the news of over 20 new brain tumours. No words. Well, here are a few...
It was only a week ago that I received the surprisingly pleasant news from my PET CT whole body (ex brain) scan which showed an improvement in the lungs (just one small tumour left) and bones (reduced in size and number from 5 to 4). However there were three new pesky lymph nodes showing activity so we took the opportunity to biospy one. I was pleased with the result on balance as the disease had shown areas of subsidence while making new information on mutations accessible in the lymph. I even got really excited and contacted a few TILS centres to see if they might take me on. However the lymph node biopsy came back negative, as in no cancer. I was initially disappointed that we couldn't get the info we wanted, but was also pleased as there was obviously less cancer in my body than we thought. Maybe Tagrisso really was doing its job. But how to explain the galloping tumour marker? As a precaution we did an MRI of the brain on Thursday evening, the results of which stunned me yesterday afternoon. Over twenty new tumours. Even more incredible since I am asymptomatic, so far.
Apart from obviously being totally terrified of what's to come in terms of treatment, quality of life and the obvious, I am so disappointed that my current regime has not kept the brain stable. I am on THE very best drug for blood brain penetration. Tagrisso, and it has failed me. I take the clinical formula of silibinin at the required dose shown to reduce brain mets in lung cancer patients and it has failed me. And another 15-30 repurposed drugs depending on my mood/need. Now what?
Whole brain radiation therapy and all its cognitive side effects, is on the cards, although I will see if they can spare the hippocampus. I will also beg for cyberknife over WBRT, albeit a huge number of times! Other ideas are to pulse Afatinib, double up on Osimertinib, try Keytruda standalone, or combine Keytruda with the radiation. Usually EGFR mutated lung cancer patients do not respond to immunotherapy so my EGFR amplification was previously viewed as a potential obstable to immunotherapy success, but if I am not responding to an EGFR inhibitor (Tagrisso), maybe EGFR isn't driving the cancer and won't hinder the immunotherapy. This is only my middle of the night theory though!
I will spend the next few days reviewing ideas before meeting with my HK oncologist and radiation oncologist on Monday. I spoke to a couple of doctors in London, one of whom suggests trying to get new cancerous tissue to analyse, to see what is the driving force. Maybe we could biospy the largest brain tumour (1.7cm)? Clearly no one wants a needle shoved in their brain or surgery, but if cholangiocarcinoma is similar to breast and lung cancer insofar as different mutations drive the brain compared to the body, then that would be interesting information to extract to help guide treatment. Another doctor suggested (and I will cling onto this!) that given the bones and lungs were improved, and the lymph node negative, maybe the brain is showing an inflammatory response only, like the lymph, rather than expansive metastatic spread. My case is also now being circulated at one of the US' top institutions for cholangiocarcinoma. Only 50 more emails to write now, so better get on with it. Thank goodness for Love Island as a daily distraction; maybe it's because my brain is so screwed that I enjoy it so much?!
May 27th 2019
An emotionally draining week. The pain in my pelvis returned so sharply last weekend that I thought it prudent to ask for a scan. It’s been 9 weeks since I started taking Tagrisso, during which time my tumour markers have roughly doubled, not a good sign, coupled with with the increase in pain. This produced my biggest “scanxiety” to date and I was an emotional wreck while waiting for results.
In fact I was pleasantly surprised. The 4 lung tumours had all calcified (this is good as it means the cancerous tissue is dead) except for one, but that one is small and not very active. Four bone tumours are fractionally smaller (not much but it doesn’t matter!) and the fifth has disappeared. Perhaps the Tagrisso is working after all, or maybe it’s the combination of everything I do. However there are now 3 active lymph nodes which weren’t there before. That tempered my joy from seeing the improvement in the bones and lungs until my oncologist suggested one lymph node may be amenable to biopsy. “I would love that, more than life itself” was my jubilant response. Not sure he had previously encountered a patient so excited about a biopsy!
He will check the images this week to see if the lymph is accessible and we will schedule a fine needle biopsy for this week, an outpatient procedure in hospital. My plan is to send the tissue to Foundation One for updated molecular testing; this hasn’t been done since diagnosis June 2016 and could reveal new mutations we could target. I also wonder if I might have enough tissue to qualify for a TILS programme, although the tumour doesn’t quite look big enough. Getting on an actual TILS programme would be a challenge in itself. I also want to see if we could test for mesothelin, not previously tested, but I note is a target in a Bayer trial and this new drug from TCR2 Therapeutics:
https://www.fiercebiotech.com/biotech/immuno-oncology-player-tcr2-therapeutics-tees-up-for-80m-ipo
There are other “fun” ideas for tumour tissue such as asking a lab to implant patient derived xenografts into mice to then test out various drugs. My oncologist rolled his eyes at this but I know it's possible.
Repurposed drugs continue to play a heavy role in my protocol. This week’s new one was an accidental addition! I have recently suffered from a runny nose that I just can’t shift (which is seriously the least of my concerns) and been sneezing a bit. However, it’s actually getting annoying to be continually carrying tissues so I mentioned it to my doctor who concluded it was an allergy and prescribed Claritin. I read the pack, noticing the active ingredient is loratidine, yet another drug I have heard is a possible candidate for oncology repurposing. Woo hoo! It’s now in the mix.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4972561/
By the way, I check any additions to my protocol on drugs.com for interactions. This is an excellent free app with an “interactions checker”. You can type in and save the list of drugs you take and it runs off a screen report of all the major, moderate and minor interactions as well as duplications. Invaluable to any cancer patient trying to cure themselves with a cocktail of drugs! And I have started talking more to the pharmacist at my clinic. While I highly respect my oncologist for his views and experience, I think the pharmacist might have a better idea on the actual drugs' interactions and my chats to him are off record (!) so it's another place to sound out ideas. Plus I think he quite likes the interaction as most patients just grab their drugs from him and say goodbye.
Anyway, after an emotionally draining week, I feel quite relieved that Tagrisso may be working which is even more pleasing because it’s side effect free (for me). Plus it means we can avoid/delay adding Cetuximab for a bit longer (the drug that gives the bad facial rash/acne).
Oh, and I have a new wig. My daughter’s puzzled reaction was priceless. “So you don’t like it?” I asked her. “No, it just looks so real, so real that I thought you had literally grown it overnight”. If only... It’s from the Raquel Welch range on headcovers.com and is called the “crowd pleaser” so it would help if you could look suitably pleased when you see me! It does make me look like I sat in rollers at the salon all afternoon in preparation for my gala dinner, so be prepared.
Thank you for all the support, as usual. Couldn’t do this without my family and friends xx
May 19th 2019
I wish I had more interesting news to share, but sometimes an uneventful week in the world of cancer is a good one! In brief, it's the same old story. Still on Tagrisso and still don't know if it's working. The tumour markers continue to climb, which is worrying, but the pain, while getting a lot of worse in weeks 5 and 6 has now improved somewhat in week 9. Only a scan will tell us the real story so I think we will schedule one in a week or two.
Day to day, I feel great! I am exercising, taking the kids to all their activities, socialising, sunning myself, basically engaging in the full tai tai HK lifestyle!
I continue to explore and dip into repurposed drugs. The drug a la mode right now is febendezole, brought to the fame by Joe Tippens, the CEO of a private equity firm who claims febendezole cured his stage 4 lung cancer.
Read his story here:
I am loath to write here exactly what I do on the side of my conventional treatments as don't want to recommend or advocate anything. I am not cured after all. Anyway, you can find my notes on repurposed drugs here and febenedezole is one I am examining at present, as well as itraconazole, an antifungal medication that as well as being a potent angiogenesis inhibitor (like Avastin), has the ability to raise plasma levels and increase the strength of TKIs such as the one I am taking. This could make it more effective, but of course, could increase the side effects. Even the Daily Mail (!) has reported on this:
But if you prefer to read from other sources (!), I highly recommend the website cancertreatmentsresearch.com for its well written and and researched pieces on cancer treatments including repurposed drugs in oncology:
https://www.cancertreatmentsresearch.com/itraconazole
This is where I found a link to the report suggesting itraconazole with chemo in biliary tract cancers could be interesting:
https://www.ncbi.nlm.nih.gov/m/pubmed/23546045
And here is an interesting report where using cholangiocarcinoma patient derived organoids they screened hundreds of drugs to conclude that anti fungals were potential therapeutic targets for BTC.
https://www.cell.com/cell-reports/fulltext/S2211-1247(19)30427-9
This report from Pubmed focuses on its angiogenic properties and a phase 2 trial in lung cancer patients combining it with chemo.
https://www.ncbi.nlm.nih.gov/m/pubmed/23546045
May 2nd 2019
I am now 6 weeks into taking my new targeted drug, Tagrisso, and I am feeling pretty magnificent. In the last few weeks I have hiked or swum daily, played football and badminton with my son, ping pong with my daughter and tried to be as full time a mother as possible. However, the last two weeks saw another rise my in my dratted tumour markers and the return of that familiar pain in the pelvis, caused by the bone metastases. My doctor now wants to add in another drug, a monoclonal antibody called Cetuximab. This is a fortnightly infusion with very few side effects apart from a severe facial rash. Google it. Aside from the obvious fear of feeling very self-conscious, I am more worried about embarrassing the children. It's already plain that they wish their Mummy had normal hair like all the other mummies, so I don't want the rash to add to that embarrasment. It's always our intention to maintain as much normalcy as humanly possible, so this horrible disease doesn't shadow their childhood. I guess I need a more opaque foundation or maybe just paint?!
I will start the new drug will start next week until when I am exploring other drugs and combinations while soliciting opinion globally. It's at these junctions when I am so grateful for having attended these oncology conferences, as I have a Rolodex of contacts I can think about contacting for help.
I have been pretty down about the new drug not possibly working, and my oncologist didn't help boost my confidence this morning when he told me that if the new combination doesn't work, I should give up on targeted drugs. I am not so certain. Surely, with that many EGFR drugs out there, one might work for my amplification?! Gratitude is very helpful these days, and currently I feel grateful for feeling well and having another option to try. That's what keeps me going, aside from my family and friends' support so thank you everyone! X
April 19th 2019
Why are things never simple? I was pretty sure we were going to see another fall in my tumour markers today. My doctor was so sure that when he bid me farewell, he said my next appointment wouldn't be for another month! However, a few hours later the dreaded tumour marker results arrived and while the CEA registered another 15% fall, the CA 19.9 rose 69%, leaving us both utterly confused. Is the new treatment working or not? I thought we could say 2 weeks ago that it was, but now it's not at all certain. As I added the numbers to my spreadsheet, I note this is one of the biggest divergences in the markers in 3 years. I tried to look for patterns, hoping for a massive drop preceding any similar divergence, but alas no. Just have to sit tight for 2 weeks, and retest. Story of my flipping life! Annoying as I was hoping for a worry-free Easter. I had spent the last few days reading all the abstracts on EGFR drugs from the ESMO conference taking place this month, trying to get prepared for the day I became resistant to Tagrisso, but now I am back to hoping that it works. So please keep everything crossed for me that the next set of numbers in 2 weeks is better.
April 2nd 2019
The good news continues! First, I am delighted to report that we managed to get away for a family ski holiday in Japan last week. Sadly I did not ski as if I had fallen (or had a snowboarder career into me), there's a higher than average chance of breaking my pelvis, already weak from tumours. I had considered taking the risk anyway as I definitely fell strong and fit enough to get on skis. However, the discovery of the brain metastasis in February heightened my risk aversion and I decided best to avoid another a medical drama and stick to watching the kids in ski school, from which I derive pure joy. It also felt good to escape from polluted Hong Kong, to inhale mountain air and eat my bodyweight in sashimi. A much needed and appreciated family break.
I started Tagrisso (Osimertinib) two weeks ago, a daily oral pill targeting the EGFR gene where I have an alteration. This replaces my chemo. The side effects have been manageable thus far. I had been expecting the notorious facial rash/acne associated with this class of drugs, but so far so good. I was a little fatigued and breathless for the first week, but the second week saw a marked improvement and I will go as far as to say that today, on day 14, I feel fantastic, with zero pain and good energy levels. My doctor told me it could take up to 2 months to have an effect with the drug company's literature stating 6-12 weeks. Today, we tested tumour markers all the same to see if there could be any early indication. I repeatedly told myself to ignore any bad news, and remember it's too early to expect a response. Blood was drawn at 9.30am with the clinic usually emailing the results after about 3 hours. I therefore planned to (politely) chase them up at 12.30 in the absence of any communication. At 11.30, I saw my phone ring with my oncologist's secretary's name. FUCK. This could only be bad news. He only rings me with bad news, in order to discuss the next step. Good news need no discussion. My heart was racing as his secretary told me he wished to speak to me, and while she connected me to his office. How bad could it be? I thought it was too early to tell? "Helen, I thought you would like to hear the good news!" In fact my tumour markers have fallen 45% after just two weeks! It's early days therefore but it looks like the drug may be working, already, and I couldn't be more thrilled. Even now considering fancy dress for the HK Rugby 7s....
March 19th 2019
The good(ish) news of my scan prompted me to book a last minute flight to Tai Pei on Friday where I attended the 3rd Asia Pacific Cholangiocarcinoma conference. This was my third time at it too! Always delighted to make another year, in every sense:) This was useful in terms of meeting more local doctors and hearing about trials going on in the region. I came back again high from the information learnt and contacts made, and after the last bumpy few weeks, it was a much needed boost to morale.
I also managed to fit in a meal at Din Tai Fung - 80 minutes wait for a table unless I was willing to share with a toothless octogenarian slurping his soup. Yes please! We didn't speak but I think we became friends and I may have noticed the odd smirk at my (questionable) xiao long bao technique.
Then as soon as the conference was over, I took a taxi over to the Royal Palace where my husband insisted I view three famous items, which on arrival I sadly learnt were all on loan to other galleries!
Back in Hong Kong I went to the doctor yesterday to find my tumour markers have been flat over the last 12 days. Always disappointing not to see a fall after both chemo and cyberknife, but at least they didn't go up. I also picked up my new oral drug, Osimertinib, to target my EGFR alteration which I started today. I could have started it yesterday but in the morning I sat down to review all my supplements to ensure nothing interacted with it only to find grapefruit was a big offender in reducing its efficacy. I was eating one at the time... Please keep everything crossed for me that the new regime works.
March 13th 2019
Phew! A half decent scan thank goodness.
Lungs are slightly better. There are 5 tumours all under 1cm. In case that sounds bad, this compares very favourably to last August when there were 40! The two cancerous lymphs node have also resolved and there is still nothing in the liver. This marks 2 years and 2 months since my ablation to the liver, with no cancer returning to that organ. However the bone lesions are a bit worse: more active, larger and there is one more of them. However, I am not too concerned as I am not currently in pain.
I can imagine the above might not sound that rosey to anyone who is cancer-free but trust me, today is a small victory which must be celebrated so we are off to a drinks party!
That said my doctor has not done much for my confidence. "So your face is fat huh?" (from the steroids I had to take for the brain swelling). Got to love his directness... Apparently it will take another two weeks for my moon face to return to normal, much to the amusement of my husband and friends. I am now going to select a wig/headpiece for the evening to try and elongate my face somewhat for this party....
That's it for chemo - well for now anyway. We are going to move onto an oral drug, a TKI to target my EGFR alteration. I have another Skype with my London oncologist tomorrow evening to discuss which one, then I will start it in a couple of days.
And now breathe....
March 12th 2019
I had cyberknife to the brain 9 days ago now and am now starting to feel more human, although a dose of chemo last week put me back a little bit. The combination of the actual brain tumour, the shock of it and the brain radiation definitely fried my head a bit and I didn't feel quite myself for a couple of weeks but I do feel slightly better now. However, when I did chemo on Thursday, my tumour markers doubled again so not really sure what's going on. Is it too early to expect them to fall post brain treatment, or has the chemo stopped working as well? I am having a body PET CT scan today (without brain) so we can see whats's going on and maybe switch from chemo to an EGFR inhibitor later in the week. Thanks for everyone's supportive messages. It's a difficult time and I am so incredibly grateful for my family and friends.
February 28th 2019
In case I sounded extraordinarily matter of fact in my last post, rest assured the news has now set in and I now feel quite troubled by it. Brain metastasis in bile duct cancer is rare but associated with a poor prognosis: https://www.karger.com/Article/Abstract/479929
however, my prognosis has never been wonderful so I just have to hope that I can buck that trend again. What's hard is that I now feeling like a dealing with a newer, even harsher cancer, as if the last wasn't tricky enough. We are going to have to now focus on the brain a lot more from now on, ensuring treatments pass the blood brain barrier, undergoing more brain MRIs and I am likely to be even more paranoid on the symptom side if I feel any headaches or neurological changes. Currently the headaches are more like minor twinges with a touch of feeling unbalanced, although having been pretty malcoordinated through out my life, my husband says he hasn't noticed:)
Cyberknife in one dose is planned for this brain lesion this afternoon in Hong Kong. Hopefully it should be uneventful as I prefer all brain interventions to be, with side effects limited to headache, dizziness, nausea and hairloss. It's an outpatient procedure after which I will rest at home for a week or so, possibly resuming chemo next week or switching to a targeted oral systemic therapy, such as an EGFR inhibitor. We are currently looking at erlotinib, afatanib and a few others here. In the meantime I have been reviewing all my supplements and repurposed drugs to ensure everything passes the blood brain barrier (see notes here which are a work in progress)
and maximises my upcoming treatments.
I am firing out a lot of emails across the globe to seek opinions and advice, which I am trying to do sofa bound while watching Netflix and chatting to my wonderfully supportive family and riends. I also did a 25 minute walk yesterday and sat in the sun to get some Vitamin D.
Let's remain positive, throw everything at it and try to be a calm as possible! That's today's strategy anyway.... X
February 22nd 2019
Crikey, what a week. It's hard to believe that in the last week I drove the kids the picks to strawberries in Fanling, attended a dinner party, Indian restaurant, school meeting, hiked most days, had 3 of my fabulous school friends to stay, albeit all while nursing a MINOR headache and reaching for the odd paracetamol, yet ended the week, this evening with a frigging brain tumour. How did that happen??!
So, Thursday I went for chemo where I thought it prudent (but not obligatory) to report the said headaches which I reiterate were minor and only going on for about 6 days intermittently. He examined me thoroughly and said I appeared fine while recommending a brain MRI for a piece of mind but that I shouldn't worry. Hmmm, not sure about you but getting your brain tested for cancer is never going to be a worry-free day... Anyway I tried to reassure myself that it could be anything and was probably due to an interaction between my chemo and a natural supplement, or some slighly over enthusiastic chocolate eating (100% cacao mind) or even a new coffee bean I had been trying. My oncologist further reassured me that things were going well otherwise and my tumour markers had really improved, but then a few hours later during chemo, I got the latest tumour marker report showing numbers that had doubled. So had the chemo stopped worked too? Was there something in the brain causing them to rise? Unfortunately chemo doesn't pass through the blood brain barrier so while tumours can shrink everywhere else in the body, they can still grow in the brain.
In true Hong Kong efficiency, one of the reasons for which I am very grateful to be treated here, I was offered a brain MRI today. They first gave me an appointment on Monday in Central but when I complained that I didn't want to wait over the weekend, they told me they could fit me in today if I were willing to drive as far as Jordan. Not Jordan the country mind but Jordan in Tsim Tsa Tsui which added approximately 15 minutes to my journey time! Who would refuse that?! I went at 3.15pm today, left by 4.15 and while I was told I would need to wait 2 days for a written report, I made them promise to ring me today with the verbal report, which my oncologist duly did within 15 minutes of my leaving the scanning centre. Legend.
His first words were, which I will hang onto tonight as I go to sleep "it's small, singular and treatable". There is a 1.8cm lesion on the left side of my brain with some associated swelling. It's the latter which is giving me the headache. I have an appointment tomorrow morning, Saturday, with my oncologist to pick up meds for the swelling, followed by an appointment with the radiation oncologist afterwards. He imagines I will need 3 fractions of FRS radiation of which I know nothing and am about to research.
He also conjectured that the brain lesion may have led to the big rise in tumour markers, meaning the chemo is not necessarily failing, more that we need to zap the brain mets at the same time since the chemo won't cross the blood brain barrier.
Cholangicarcinoma patients rarely suffer brain metastases so I know little about these or their treatment from my cholangio community, but more from lung and breast cancer patients, where brain mets are more common. I need to do some reading here, to work out how I can help myself with supplements and repurposed drugs, especially ones that cross the blood brain barrier.
Answers on a postcard please!
Anyway, I know it all sounds horrific but after a few days of uncertainty while waiting for this brain MRI & results, to end the week with "it's small, singular and treatable" was almost a bit of a relief and I am so glad to know that there is already a plan in action, starting at 8.30 tomorrow morning. I still feel well, despite the odd head twinge, did a 40 minute hike today and remain positive. Please help me maintain this mood! I need empowerment in this situation, not pity.
Lastly, here is the YouTube link to the video of my presentation in Salt Lake City, which took place 3 weeks today: https://youtu.be/vPxcEXONots
February 11th 2019
And the good news continues... Adding to my buzz from last week's conference in Utah, I did chemo this week and saw my tumour markers continue to fall. You know they are going to be good when the nurse says the lab had to rerun the test, as the result seemed "too good"! The side effects are a little unpredictable however. I thought I was over it on day 2, when suddenly I started shivering for 24 hours. I think that's what they call a neutropenic fever caused by low white blood cells. And my eyebrows and eyelashes are slowly depleting meaning I am looking more and more strange while spending longer and longer in the bathroom each morning to paint myself back to normal! The plan is to continue this chemo until my bone marrow can no longer keep up, and then switch to an EGFR inhibitor, such as gefitinib, as a form of maintenance drug. When will this be? No idea, but possibly in the next few months. There's no guarantee that gefitinib will work but if not, we could try other EGFR inhibitors given my amplification in this gene.
There is another conference coming up in Taiwan next month: APCCA 2019. As you may already have picked up, I LOVE a conference as it's such a great place to learn about any new treatments available, network with doctors to sound out my crazy ideas and generally blitz the illness. This all comes at the expense of leaving my family for a few days, but I strongly believe the contacts I make and information I learn will benefit us all in the longer term, which is why I go. As such as I would strongly urge anyone in my position or with another incurable condition to do the same. This time, I really want to learn as much as possible about any ongoing trials in the Asia Pacific region, since while I have a grasp of what's going on in the US and Europe, geographically it would obviously be more convenient for me to be in APAC, if a suitable trial were to emerge. Trials shouldn't be thought of as "last resort" and you can always revert to FDA approved treatments afterwards, but there are lots of interesting immunotherapy trials ongoing, combining checkpoint inhibitors with other agents and these are the ones I want to learn more about, as I don't possess the right biomarkers (MSI, PD-1 etc) for a likely favourable response to immunotherapy as a sole agent. I learnt about these from Dr Katie Kelley's presentation at the Salt Lake City conference last month where she alluded to several early phase trials in which patients without high MSI had responded to a checkpoint inhibitor combined with one of the following:
1. CPI + CPI (another checkpoint inhibitor
2. CPI + chemo (e.g. GEM/CIS)
3. CPI + GM-CSF
4. CPI + MEK inhibitor (if testing positive for BRAF V600E mutation)
5. PD-L1+ THF 阝bispecific inhibition
So my strategy is to stay on top of these trials and any others, hope for improved survival data from them, and to get on one of them that works for me! Simple really....
February 6th 2019
Apologies for the length of time since the last update. Things are a lot better! Last time I wrote I was in considerable pain from my bone metastases as the Folfirinox chemo had stopped working. I therefore had to cancel my travel plans to the US, as being unable to sit upright for any length of time, travelling long haul would have been out of the question. However, there was a bit of a turnaround as the photo above may convey! I started another chemo, Gemzar and Abraxane, in the first week of January, and within one week, I managed to ditch all painkillers with my tumours markers showing a 50% reduction after just two infusions. It would appear that when things work in cancer treatment, they can work very quickly. That said, some immunotherapy treatments can take months to kick in but do produce more durable responses...
I therefore wrote another email to the Cholangiocarcinoma Foundation, explaining I was in fact well enough to travel and off I went! Unfortunately there were no direct flights to Salt Lake City so I had no choice but to stop off in LA and have supper in Venice Beach with three very old, dear girlfriends:) CARPE DIEM! I then flew onto Salt Lake the following day for the 2019 Annual Cholangiocarcinoma Conference. The conference took place over 4 days during which I attended 36 presentations from the world's experts on bile duct cancer, networked like crazy, made some wonderful friends/contacts and delivered a presentation on my own experiences as well as a new project I have initiated with the Anti Cancer Fund, to develop a basket of repurposed drugs specific to cholangiocarcinoma. I was nervous to my present my potentially contraversial views on repurposed drugs to so many doctors. However, it went better than I could have even imagined and I am still in shock to have received a standing ovation! Sometimes I wonder whether all my research late at night is worth the trouble and this week seemed to validate my efforts for the first time - well I guess if I could get better, that would be the ultimate endorsement! I also felt such an incredible warmth from the audience comprised of doctors, scientists, pharmaceutical companies and patients, and left the conference on a real high, literally buzzing with new ideas and contacts made.
I am now back in Hong Kong and feeling better than I have done in months in terms of energy and nausea. I can totally see why the US has such an obesity problem as I weigh more after my one week stay than I have done in 3 years! I feel fantastic in fact which is fortunate because I have two weeks of half term ahead with the kids! Chemo is tomorrow however which may knock me for a few days I guess. Gemzar and Abraxane as a combination chemo is typically given as an infusion every week for 3 weeks with the fourth week off. It's less toxic than the previous Folfirinox so I don't feel quite so nauseous on the day and the recovery is definitely shorter. And I can't tell you how much more pleasant it is to just sit in the clinic for a 3 hour infusion rather than 8 hours in clinic and 48 hours at home with the 5FU pump that I used to have to endure with Folfirinox. However, the mouth sores seem worse and there are definitely a few days each cycle when it hurts to eat and even talk. These are the days my husband likes to come home from work early:) However, given all the previous treatments I have had, my white blood cells and platelets take longer than average to recover so my oncologist is considering a modified regime where I have the chemo every fortnight; the results seem somewhat similar: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5298402/
My doctors have suggested that if/when my bone marrow is unable to further tolerate the current chemo regime, we switch to an EGFR inhibitor such as gefitinib. Another doctors I met at the conference suggested a sequence of erlotinib then afatinib with another suggesting a return to Folfirinox adding in Cetuximab. One idea I would like to discuss with my oncologist this week is that of intercalating chemo with the inhibitor. I found a case study a 74 year old lady who is 11 years out from her original diagnosis of stage four pancreatic cancer, with the author claiming her success is a result of the "treatment strategy which includes using a weekly metronomic dosing of chemotherapy, synergistic combinations of chemotherapy, switching chemotherapy regimens before disease progression, and using immune therapies. Two other patients treated with a similar strategy, although they were not treated exactly the same, also had survivals of over 5 years". There are also positive results from trials in lung cancer where patients have intercalated chemo with a TKI:
https://www.ncbi.nlm.nih.gov/pubmed/27261103 (Slovenia)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4230556/
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(13)70412-1/fulltext
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5559626/
I also have some ideas from the conference regarding adding a checkpoint inhibitor to my current chemo, which I will outline in my next post. My kids are just waking up and we have day three of half term to conquer...
January 5th 2019
Apologies for the lack of updates recently. Volatility on the health side, Christmas and 3 kids on school holidays have been keeping me very busy. I know I have the tendency to be quite lengthy in these updates, so if you just want to cut to the chase, we had a lovely Christmas with family and friends but since then I have had a significant increase in pain from the pelvic tumours meaning the old chemo is no longer working and we have had to change the regime this week. This has been quite upsetting but I am hoping for an improvement soon! More detail below:
Given the initial reduction in pain from the pelvic tumours, and the November scan showing a substantial improvement compared to August, we decided to continue Folfirinox chemo with a 6th cycle at the beginning of December. However, this was in spite of a rising trend in tumour markers so I was not terribly confident that the good times would last.
Then, as soon as I recovered from cycle 6, I contracted laryngitis from my 3 year old, who nursing a chesty cough herself kept offering me kisses on the lips that frankly I couldn’t refuse. This led to me losing my voice for a week which my husband declared was undoubtedly the best Christmas present he had ever received.
Luckily I recovered from both of the above in time for Christmas which was fortunate as we had 16 guests on 25th. I know it sounds like madness to have insisted on hosting during such a tumultuous time for our family, but being at home with my family is by far my favourite pastime, and I love to cook and entertain so despite the work involved and chaos, I thought it was for the best, as I have done for the last 3 Christmasses post diagnosis. We had a wonderfully busy, noisy and very fun day. In fact we were pretty social all over Christmas; I even managed to go out on New Year's Eve, lest my health get in the way of a Scotsman's Hogmanay!
However, the week before Christmas also saw a few aches returning to the pelvic area which escalated from no painkillers at the start of the month to my pre chemo regime by the end of the month, a delicate balance of NSAIDs and opiates which after much fine tuning enabled me to attain the perfect balance in the summer of being completely pain free and (slightly) high whilst being fully in control, able to drive and operate day to day life with the usual gusto. However this time that cocktail wasn’t so effective. I had difficulty relieving the pain and there was no high, more like unexpected eyelid droops (snoozes) even when old friends were visiting from overseas (sorry!) This all happened in the week after Christmas when, annoyingly for me but understandably for them, the 2 oncologists with whom I mainly consult, were on holiday. It was a miserable few days as aside from being in pain, it was a clear confirmation that the chemo had definitely stopped working. This is so disappointing as it was the same chemo that took me into remission in 2016 and allowed me many months of being cancer free and a break from treatments. I was so hoping for that again, for a small respite while my body heals and medicine advances sufficiently to find the cure or at least a more sustainable treatment that could turn it into a chronic condition. I am tired physically and mentally from this daily grind of dealing with with cancer, from the endless trips to depressing doctors, being poked with needles and explaining to my 2 year old why I have yet another “owie”, from constantly reading research on my computer then frantically minimising windows on my desktop before my kids start reading them and getting alarmed, and from endlessly trawling through FB threads for details of supplements and treatments I may have overlooked. Anyway, rant over. Back on the horse, and keep bloody going because as soon as my kids get home from school I know why I need and want to keep going!
Conceding defeat to Folfirinox chemo, we have therefore switched to Gemzar and Abraxane. This is a weekly 1.5 hour infusion with a break every 3 weeks. Side effects are hair loss (it’s all gone anyway), nausea and tiredness but nothing quite as bad as the previous toxic Folfirinox which makes everything seem like a walk in the park. It’s also so nice to go to the clinic for just a few hours rather than the usual 8 and come home with nothing attached to me as the previous regime saw me carrying around the last drug 5FU in portable IV for 2 days. Currently it’s Saturday, day 3 and definitely a duvet day but hopefully stronger tomorrow to take the kids out for dimsum.
We also plan to add in an EGFR inhibitor in the coming week as I will explain. I had my original tumour tissue at diagnosis tested for genetic mutations, a must for anyone with cholangiocarcinoma (and many other cancers I am sure) as in time it may be that cancers are categorised by their mutations rather that the primary site (lung, breast etc) to which we are accustomed. Knowing these mutations opens up the door to different immunotherapy and targeted treatments and The Cholangiocarcinoma Foundation has produced a very patient friendly video about why mutations matter, useful to anyone newly diagnosed or unfamiliar with the benefits of molecular testing: https://cholangiocarcinoma.org/mutationsmatter/patients-portal/
I have been wanting to retest my mutations since diagnosis but have had no accessible tumour tissue since then (not a bad thing!). However the emergence of the liquid biopsy, a simple blood draw to detect mutations, has meant we can retest in a far easier way, although it’s certainly no cheaper judging from the $40K(HKD) bill! A few companies do this with the most recognised being Foundation Medicine and Guardant 360. I was advised to choose the latter by the Royal
Marsden since the two organisations have just begun an academic collaboration. The test takes 10 working days and I received the results this week. They confirm the high degree of amplification in EGFR and the mutation in TP53, both detected at diagnosis, and also throw up some new amplifications in PIK3CA, MYC and CCNE1.
The most obvious idea at this point it to add an EGFR inhibitor to my protocol so we are currently researching which one; Cetuximab, Afatinib and Gefitinib seem to look most promising. A few more phone calls and bits of reading to do and we should have a decision by next week. We can maybe attack different mutations and amplifications further down the line and also retest to see if the mutations change again. Just hoping that the chemo works for now to relieve my pain and slow down the growth so I can get back to enjoying my life and stop worrying about all of the above!
My diet has definitely slipped in the last year or so, possibly as nausea is so frequent that in order to maintain weight I need to eat what I can stomach and presently that’s builder’s tea and beans on toast! In terms of repurposed drugs, Disulfiram (Antabuse) remains my main area of focus. There are so many compelling research pieces on this drug and I will add a few to my page on repurposed drugs very soon: http://www.mangomenus.com/repurposed-drugs-for-cancer
My slight deterioration means however that I have had to cancel my US travel plans later this month where I was invited to speak at the Cholangiocarcinoma Foundation’s annual conference. I am beyond gutted about this but hope to join the Asian leg of the conference in Taiwan this spring and am even more determined to get the US one in 2020!
Thank you for all your support, messages, visits, letters, WhatsApps, phone calls and so forth - every single one lifts me and keeps me going.
In the meantime let me wish you a very happy and healthy New Year xx
