Health Updates July 2019 onwards
November 15th 2019
Apologies for the delay in writing but I have been going on junks, 40th birthday parties, dinners, hiking, looking after my family, and generally living! I started a new regime almost 2 weeks ago. The new chemo is called Onivyde and is the new nanoparticle of irinotecan, which I have had before, but this one is more effective with fewer side effects including NO HAIR LOSS! Hopefully my hobbit hairstyle can therefore start to evolve into something more presentable. I continue to combine chemo with Avastin and immunotherapy (Tecentriq) and did the first session 12 days ago which went remarkably well in terms of very little nausea, and I even managed a long uphill hike on day 5.
We won't know if the new regime is working for a few weeks, and it's unlikely to cure me even if it does, so I remain on the hunt for medium and long term options, both here and overseas, in the immunotherapy, in particular CAR-T space. Project Survival has been a full time job since diagnosis but never more than now. I am sending emails to doctors, authors of research papers, countless trial coordinators, diagnostics firms and esteemed patients all day long. A lot of trials have either failed to respond or rejected me, which probably should discourage me, but in actual fact makes me even more determined to find the right treatment. I am sure you probably think I am disillusioned and/or in denial! Anyway, whatever it is, it helps me get through the day...
Last week i watched the “Unnatural Selection” on Netflix about gene editing and how they have made beer and frogs glow in the dark by injecting them with the jellyfish’s fluorescent gene. Fascinating, and for $150 I can buy a gene editing starter kit online and begin injecting myself. Tempting. Joking. Kind of. Except the aim would be to cure myself rather than turn luminous, although that could be considered for next Halloween.
October 28th 2019
I am sick of using the word rollercoaster to describe events, but few words adequately depict the highs and low of this journey, with the last fortnight as a prime example. It began with possibly the best email on a Friday evening, that got me so overexcited that there was in fact hope. I didn't sleep a wink that night, like a small child at Christmas. I had had my tumour tissue tested for proteins that could be targeted in different therapies, with one called PSMA standing high like Everest. This is commonly found in prostate cancer, so was I actually a man?? Had they got my gender wrong as well the primary tumour?! In fact, as well as prostate cancer, PSMA is commonly found on tumours presenting themselves at the back of the abdomen, where mine was first found. I was then told that a specialised PET CT scan where they test specifically for this protein across the whole body would tell me if I was eligible for a commonly (but novel) prostate cancer treatment which is highly effective and non-toxic (that's the best combination btw!), available at a Hong Kong hospital. It would be just a 30 minute infusion every 6 weeks for around 9 months, if successful. This news felt like a Eureka moment, as surely there would be something else available in 9 months, or maybe even the cure.... Those next few days felt like a vacation in my mind, with a returned spring in my step and future plans flooding into my head, all while thinking the next scan was more of a formality than a deciding factor. In fact, the scan was negative. I was devastated. While there are other proteins we could target (CD44, GD2), these don't offer any immediate solutions so back to the grindstone it was...
First, however, we managed a long overdue family holiday in Phuket, returning just last night. I ate well, putting on weight, and felt strong enough to engage in most of our activities, with little rest in between. This was a big improvement in energy levels compared to the last few months. My husband continued his role as super Dad tirelessly conjuring up beach and poolside activities to exhaust them.
This morning I was back at the doctor's where I received the results of a regular PET CT scan performed at the same time as the PSMA one. Thank goodness I didn't ring for that result while I was on holiday. He was kind enough to convey the information in a very measured tone, such is his excellent bedside manner, but the report made for ugly reading. The images, even worse, looked less like a mother of three back from her holiday, but more of a dummy used for target practice, simply ridden with bullets. Ughh. Even I am staggered at how well I feel given the reality on paper. If I wasn't feeling so strong, I would be pretty upset, but gratitude can be very constructive on bad days, and today I am thankful for having had a great holiday with my family, feeling healthy, all bodily functions working perfectly and not being in pain.
After a lot of emails, discussions and deliberations, we have made some decisions. I will start a new chemo along with immunotherapy and Avastin at the end of the week. It's the new nanoparticle of Irinotecan called Onivyde, which we will combine with 5FU. I have had the old version and 5Fu before (in Folfirinox) but 5FU is the least likely of the Folfirinox components to cause resistance plus the new nanoparticle should be more effective. I have made a short term action plan to complement my new regime, emphasising on potentiating the immunotherapy:
- buy creatine from iherb - not because I have started bodybuilding but given this new research showing it powers T cells:
According to an immunotherapy specialist MD "there seem to be two reasonable dosing options; one is a 20 g a day loading dose for seven days, then 5 grams a day. Or just going with 5 grams a day without a loading dose."
- consider the 'flu shot with a chaser of Viagra (could be interesting!):
- consider other vaccines such as rotavirus:
-and Dukoral (cholera vaccine shown to reduce mortality in population study of patients with colorectal cancer):
- look into fecal implants, yes that's right, pay someone to putting someone's healthy shit into my unhealthy gut:
Trying to find somewhere with a good reputation nearby. I don't want just anyone's shit.
- consider Maraviroc (HIV drug ) to boost immune system response:
In addition, I have some light autumn reading on its way from Amazon: “The Immunotherapy Revolution: The Best New Hope For Saving Cancer Patients' Lives” written by Dr Jason Williams of whose immunotherapy Facebook group I am a fan, and also "Curable: How an Unlikely Group of Radical Innovators is Trying to Transform our Health Care System " by Travis Christofferson, who wrote the famous (in my world anyway!) "Tripping over the Truth".
We are also continue to research chemosensitivity testing clinics whereby my tumour tissue can be grown into a organoid and have drugs tested on it, and CAR-T therapies in trials and other settings. I think there is still hope, but maintaining it is hellishly hard work. X
October 11th 2019
Just had my weekly check up having done immunotherapy last week. We still don’t want to resume the old toxic chemo, and my doctor had previously told me, sadly, that I had run out of chemo drugs to try. However... there is a new one! Oh the excitement! It’s an enhanced version (nanoparticle) of one I have had already (irinotecan) and it’s approved in pancreatic cancer which is similar to mine. We start this in 2 weeks and he doesn't even want to see me before then. What a long break!!! We could even go on holiday!
We had one lot of test results (Foundation One) come back yesterday with a very disappointing/lack of data so no new ideas there sadly. There are more test results to come back however which could reveal something.
At least there is a short term plan and I remain off all painkillers. The opiate comedown has just about ended too so I am less Rottweiler and more human.
October 4th 2019
Went to the doctor yesterday. It was 2.5 weeks since any treatment partly because I needed a longer recovery time due to gastro issues. 35+ cycles of chemo over 3 and a bit years may be taking its toll on me. Who knew?l! The delay was mainly however because my oncologist went to an oncology conference (ESMO) in Barcelona. I was hoping he would come back full of new ideas. Alas not...
After my longish recovery I managed to have a decent week of taking the kids to school & activities plus we even managed to go on a junk and out one evening for dinner! It’s the little things...
We have decided not to resume chemo for now given the above but he gave me a dose of immunotherapy (Tecentriq) and Avastin yesterday. Few side effects but better today.
The good news is that post radiation, my tumour markers have halved which is probably evident from the fact I am walking again and even managed to hike uphill this morning! I am also off all painkillers about which I am delighted but there is a comedown associated with that which I can’t say hasn’t been emotional(!). The worst side effects have been being awake at 1am (insomnia) and crying (emotional) into my bowl of M&S crisps (cravings) while watching Love Island USA (no medical excuse for the latter). I am feeling a bit better now though.
We are still awaiting test results from Foundation Medicine in the US and a few other places. Hopefully these will give us new drug ideas. Failing that I may have another biopsy and send that live tissue to SEngine in Seattle to create a human organoid on which to test drugs. We haven’t quite sorted out the (somewhat tricky) logistics for that yet as the tissue needs to be alive on arrival, within 48 hours of the biopsy. We are dealing with HK Customs and Fedex Healthcare.
So just plodding on really and hoping for some good ideas to come from the recent testing. Still a touch weak and weary but eating normally again and always up for a hike, coffee or meal while prioritising my family, naturally. X
September 26th 2019
I have now been walking totally normally, limp and pain-free, for over a fortnight. The radiation worked wonders and I am extremely relieved. However, the recovery from chemo has been so tough on the gut with nausea, diarrhoea and resulting weight loss, that both I and my doctor agree that I may no longer be able to tolerate this regimen. We will review my options next week. In the meantime, to fatten me up, my husband has filled the fridge with my favourite M&S foods. Custard for breakfast followed by pork pies for lunch was yesterday's menu, although I am well aware that I need to concentrate on on improving my gut bacteria that has been clearly depleted by 35 cycles of chemo over three years, so am trying to drink kefir, eat sourdough and shovel in pre-biotics (inulin sprinkled in smoothies etc) where possible.
We are also awaiting test results from Foundation Medicine and a few other places while we research the next step (what's new?!). Some ideas include SBRT to the liver, pulsing (taking concentrated but spread out) doses of afatanib for improved brain penetration, CAR T trials, creating a live organoid from my tissue on which to test FDA approved drugs at SEngine, and finding a drug to target a mutation that we haven't found/tried before.
More importantly however, after 8 days of being glued to the sofa and exhausting every TV network, I am back to being a mum today with school runs, football and ballet, and I could not be happier about it. Even the prospect of being capable of taking my daughter to get a veruca removed fills me with joy (although perhaps not her!).
Written Sept 16th (posted Sept 26th)
Gosh I am so embarrassed by the last update I wrote! What a cringeworthy cliché-full monstrosity! Ugh! Blame it on the painkillers. I feel more sane now, just...
It’s been 2 weeks since I left hospital, complete with a Zimmer walking frame which my kids have also used as a climbing frame, goalpost and place to do push ups. Whatever it takes to have them next to me... I have barely left the sofa or frequented any establishments without a medical focus. It has been grim. Then I was turned down for chemo last week as despite robust blood counts, I arrived panting at the clinic as the usual 5 minute stroll from the carpark seemed more like an endurance test when using a walking frame. I was quite disappointed at the time to be rejected but pleased that at least he administered the Avastin and immunotherapy drug, Tecentriq. He also gave me three days of IV fluids and nutrition to build me up. At the end of one day my accompanying girlfriend asked if I was hungry, pointing out I hadn’t eaten a thing all day. I explained that in fact I was just polishing off the petits fours, albeit via a tube... My tumour markers went up a bit which is never pleasing but only a fraction, so we willl await next week’s numbers to see if it’s a blip or a trend.
On a happier note, I started radiation to my pelvis with little hope that I would ever walk again without pain or analgesia. However, I watched the progress unveil quite remarkably in just a matter of days. On Tuesday, after just three treatments, I turned a corner and reduced my painkillers. Then Wednesday, rather than clonking that Zimmer frame with every step and a gasp, I started pushing it on its wheels. Thursday I simply forgot about using it in the house and this weekend I walked unaided to my neighbour’s for cup of tea! Just hope it lasts as it’s not a long term solution...
As well as physical debilitation, I have been wiped out mentally from all the painkillers. I am so grateful therefore for my girlfriends taking my life out of my hands and organising a rota amongst themselves of who was taking me to appointments. It was such a blurry, hazy few weeks and I can’t thank you enough for allowing it to run so smoothly, and maintaining the laughs along the way.
Last week I saw a liver specialist in HK about ablating my singular liver tumour. I had this procedure, a radiofrequency ablation, at the Royal Marsden in London over 2 years ago and have had no disease in the liver since, hence my desire to repeat. This time, unfortunately, the positioning of the tumour next to the kidney and rib cage deem it too dangerous to try. Luckily my radiation oncologist, the one who enabled me to walk this week, said he could try cyberknife instead. This is otherwise known as SBRT (stereotactic body radiation therapy) and we will look into it next week once I have recovered from last week’s radiation! I suggested this today to my main oncologist but he explained that while he understood my desire to beat down each problem area of the body in quick succession, I am not as strong as I once was and I need time in between treatments to repair and restore. Surely one weekend is enough?!
We are also awaiting test results from Foundation One, where we sent my tissue for molecular testing. We were looking into SEngine, a Seattle based company who make living organoids from human cancer tissue on which to test drug sensitivities. However, I need to be clear of chemo and other drugs for 3 weeks minimum before extracting tissue, and right now it wouldn’t be a safe for me to go that long without treatment.
Today I did chemo and he gave me an extra shot of Avastin. Immunotherapy takes places every 3 weeks. He also started a 3 day course (3 hours a day) of IV fluids and nutrition implying I need to work on my nutrition?! WTF? Has he seen what I eat? I even felt like a fraud last week for fitting in lamb rack and potato dauphinoise between treatments. In my opinion, this judgement is barely purely on my dropping a few kilos, so so just need to eat more and be patient.
He seems quite keen for CAR-T to be the next step, as long as we can identify a legitimate target and by that he means one that has at least been in tested in one similar cancer to mine, like pancreatic, and is showing more than a handful of patient responses. We continue to research this, in China mainly.
I could drivel on forever but need to sleep and get better from today’s chemo. X
September 1st 2019
Where do I start...
Just as I was over the extreme nausea from last week’s chemo, pleased with myself for making Jamie’s 7th birthday party and planning a few pleasurable non-medical days out before the next chemo/immuno regime, the pain in my pelvis got so bad on Thursday evening that I was unable to walk or sit up, despite taking a lot of opiates. I whatsapped my oncologist (bet he regrets the day he gave me that number...) who suggested he admit me to hospital the following morning for pain control while bringing forward the PET CT scan. Given the huge increase in pain, I was fully expecting to see progression in the bone, which there was, but I was reasonably relaxed on the rest given the 4 consecutive falls in my tumour markers. What I certainly didn't anticipate was a new tumour in the liver, for the first time in 2.5 years, and new tumour tissue in the abdominal wall. The lung disease remains minimal/stable and the lymphs just a little more active. It wasn’t a good result.
And we hadn’t even scanned the brain yet! That was the bit I was really worried about and took place this morning. In fact, the brain looks good! There were 24 mets in June, but now 6, and they are now all under 0.9cm. I am beyond relieved that the brain does not require treatment at present. The experience I had in June was quite scarring.
I also had a biopsy this morning of the abdominal wall which will be checked for malignancy first, before performing more genomic and possibly CAR-T testing. We may also consider using some tissue to create an organoid with SEngine on which to test drug efficacy.
My doctor’s bedside manner has always been magnificent and he didn’t disappoint while delivering the recent news. He arrived with a short term plan in hand, and when I broke down in tears, he stroked me, told me not to cry, and said we needed to “work together” to “to get me better”. It was one of the most hopeful things anyone has ever said to me in the last three years. Medically qualified doctors do not give false hope for legal reasons and neither of us has our head in the clouds but I felt that not only did I have a medically brilliant doctor on my side, but that after our long journey together he was also willing to go the extra mile in researching ideas beyond his conventional remit.
This is the short term plan: I will remain in hospital until I can walk more comfortably. I saw a physio this morning who gave me a lesson I expected to receive in 40 years‘ time. How to use a Zimmer frame. My 3 year old daughter told me while waiting for it to arrive “I am sorry Mummy but I cannot promise I will not laugh when I see it”.
And this week I will begin radiation treatment to my right hip to reduce the pain and allow me to walk more comfortably.
However, while I have just written a series of events above suggesting my cancer has progressed somewhat, my tumour markers tested on Friday showed a 50% drop in the last fortnight! This is most incongruous with the above and THE best news to wake up to, as my doctor did his 7am rounds. And it may mean that we continue the current systemic treatment. We will see. There are lots of upcoming tests and results to analyse first.
Emotionally, it has obviously been difficult but being showered with new information daily is remarkably easier to handle than lying there in pain while wondering why. I have been also been too busy perhaps to get upset. I have to compartmentalise all the sadness at the back of mind and concentrate on making sure I am sending the right email to the right person in order to give myself the very best shot at sailing these unchartered waters. Thank you all for being such loyal and supportive friends, as always. We remain indebted to your kindness. xxxx
August 27th 2019
Thank you all so much for all your lovely whatsapp, email and phone messages and sorry I haven’t replied. I did chemo last week and am pleased to report that my tumour markers fell again fractionally (a fall is a fall!). However, I had such a horrendous week afterwards and barely looked at my phone. Normally I spend a few days on the sofa but this time I couldn’t even leave my bed for 3 days. And I was so nauseous that I didn’t eat or drink during this time with the exception of a couple of glasses of ginger beer. I therefore spent a couple of days back at the clinic having fluids IV and I was fed through a tube for the first time. At first I was quite reluctant as I had this hideous image of mashed up carrot and peas going down a tube in front of me, but in fact it was a white opaque liquid that didn’t look too offensive. There were definitely a few low points, such as vomiting in my friend's car. SO sorry! Anyway, my goal for the week (no pun intended) was to make my son's football birthday party on the Saturday. This looked highly unlikely even the day before as despite being given fluids and nutrition IV, I then vomited as I left the clinic... However, thankfully I turned a corner overnight and made it to the party, although I wasn't in goal as my husband had hoped:) And despite spending 2 days being fed by a tube, the day after I managed to wolf down a steak sandwich!
The pain has also been worse and worse but I am just taking more painkillers and my doctor remains relaxed while my markers are falling. We will do one more round of chemo and immunotherapy then do some scans (whole body and brain). I have to admit that given the pain I am in, I am not hopeful!
This week I plan to live as normally as possible. I absolutely revel in being able to participate in what many label "the daily grind". Taking my kids to school, brushing their hair, putting them to bed and just generally being there as a mother for them is what brings me the greatest joy. And while they are at school, I will be mainly poolside getting some UV rays and having a gentle swim.
A huge, huge thank you for all your support. This week more than ever, I just don’t know what I would have done without my friends helping me to and fro appts and just generally being there at some of my most undignified moments. I am so so grateful for you all and love you so much!
August 15th 2019
Again, apologies for not posting here for a while. I have not been too well - a slightly unpleasant combination of pain and vomiting.
Since I last wrote, I have been speaking to a few oncologists about the possibility of adding in an immunotherapy drug to my current protocol: chemo and Avastin. This is not dissimilar to the IMpower 500 trial in lung cancer where Tecentriq (a new immunotherapy drug) was administered with chemo (albeit different drugs to mine) and Avastin. This showed positive results from patients including those who were EGFR mutant, and where I also have an alteration. This last part is important because historically EGFR mutant lung cancer patients have not responded to immunotherapy, but in this combination with chemo and Avastin, results have been better. I have now completed 2 cycles of this triplet and it's too early to tell if it's working. My tumour markers have fallen but the pain in my pelvis persists. As well as opiates and NSAIDs, I am now taking Lyrica which can assist with nerve related pain, and it seems to be having some effect, although it's sometimes hard to stay awake...
Since the last chemo cycle 11 days ago, I vomited for 8 days, which is far more than usual, so that has somewhat tampered with my usual activities! Anyway, some IV fluids at the clinic and a strong anti sickness injection last Monday turned things around, and I managed to gain 2kg in 2 days of the 5kg lost. Every cloud... It means I now fit back into a ridiculous bikini I bought last summer while watching too much Love Island. Thanks to my girlfriends who came with me to various doctor appointments, dutifully carrying the sick bowl everywhere we went. And apologies for not responding to emails and messages recently. I sincerely appreciate every single one, but have often been too nauseous to whatsapp, as hard as that may be to believe!
As I have mentioned before, I am a big fan of repurposed pharmaceutical drugs as believe that if more funding went into their research, cancer patients might live longer lives while reducing the huge burden on national health services. The COC in the UK and US have already created a protocol of 4 drugs which when taken together has extended survival in patients, used alongside conventional treatments. These are metformin (diabetes), atorvastatin (to lower cholesterol), doxycycline (antibiotic) and mebendezole (anti-helminthic/dewormer). However, since no size fits all in cancer, the Anti Cancer Fund has developed a specific basket of drugs for glioblastoma multiforme, one of the most aggressive brain cancers. Knowing this and the fact that the ACF likes to support under funded and researched cancers such as cholangio, I proposed to them last year (quite selfishly!) that they develop a basket specific to cholangiocarcinoma. I was thrilled to find out that my idea was accepted by their Board last January and the initial research was performed by their medical team in the following few months. I have written a blog post on this for the Cholangiocarcinoma Foundation where you can find out how the ACF can specifically help cholangiocarcinoma patients select the right repurposed drugs for them:
Otherwise, I am frantically researching what to do next if/when the current regime fails. CAR-T therapy is on the cards. There are a few trials for this in the US, for none of which I appear eligible, but one could pursue this privately in China. The next step is to test my original tumour tissue for various proteins which could be targeted. Thankfully, to distract me from all of the above, I am planning my son's 7th birthday and trying to maintain as much normalcy as possible at home.
Thanks for all your support as always X
July 21st 2019
Sorry for the delay in posting this. Too many duvet days to mention where I can't quite make it to my desktop to upload!
2 weeks ago, we returned from a fun, harmonious and loving family holiday in Vietnam. Hopefully that was all my family’s perception of it!? My husband and mother were, as usual, incredibly energetic with the kids, for which I am exceedingly grateful, forever assuring they were kept active and entertained. Meanwhile our children were the perfect tonic, constantly bringing me frangipane from the surrounding trees, long my favourite flower since our first trip together to Asia (Indonesia) pre-kids. 90% of the time I honestly felt like a normal mother on holiday, just possibly more sedentary than usual (!), and we had such a lovely time playing games with the kids (Uno Flip was a highlight), swimming with outsized inflatables and generally enjoying their company. Most people's idea of a good holiday is good weather and fine food, and while we were very lucky to have all the above, the parts that made it my perfect holiday may surprise you. First, I shared a bed with my 6 year old a few nights who wet the bed on two occassions (probably unsettled in a new place etc). Having to shower him and sort out the bedding at 2am, or moreover, being able to do that made me feel like a real Mummy for once, rather than a patient/onlooker at home, as well as sharing the huge hotel bath with ALL of my 3 children while I washed their hair one by one. I had been far too weak to help out at bathtime at home for a a few weeks.
However the trip wasn’t without its health hiccups. Being pushed out of Danang airport in a wheelchair by my six year old (who thankfully seemed to quite enjoy it) wasn’t my finest moment, such was my weakness post 12 days of steroids and their accompanying sleep deprivation. Then day 2 gave rise to extreme pain in the pelvic area which luckily didn’t persist, although my right leg ached for the rest of the trip. What an old woman I have become! Anyway the latter was all managed extremely well with a smorgasbord of painkillers so didn’t interfere with my enjoyment, however a numb top lip for 30 minutes on the last day did terrify me. My oncologist said to be grateful it didn’t persist could be possibly nerve/brain related if it recurs, which it hasn't.
The morning after we flew home, I did my second round of chemo (Gemzar and Oxaliplatin) with Avastin, with tumour markers falling 20% since the first round. This was a relief given all the weird symptoms on holiday, although I was hoping for more given I had just had 24 brain tumours irradiated on top of the chemo.
The week after chemo I felt slightly more thumped by the chemo than usual. My white blood count wasn’t enormous when I did it, has since been further battered by chemo, and might account for my fatigue, occasional chills and inability for scratches to heal. 5 days were spent on the sofa with a lot of lethargy, apathy and admittedly a fair amount of pessimism, as I am just so fearful that this regime won't work, and then what? The fear is also not helped by the fact I am definitely feeling more pain from my bone mets, which isn't a good sign of a treatment working.
During the last few weeks, I have spoken with various other oncologists to sound out some ideas, namely adding in an immunotherapy drug and another repurposed drug, tetrathiomolybdate (TM). I certainly don't always discuss my repurposed drug ideas with an oncologist (!) but I need help with the some monitoring on this one. The drug works by chelating copper from your body, on which tumours depend, and is largely side effect free, but for this to be effective I need to have my ceruloplasmin levels monitored and kept in an optimal range, the level of protein in the blood that binds to copper. I tested mine last week and found my copper levels to be high, so I may benefit from adding TM to my regime. Now to source it...
This paper details the phase II results of 10 of 15 stage 4 patients who are cancer-free after 6.9 years while taking TM.
This article discusses the relationship between copper and cancer:
Until I can source it, I have read it to be beneficial to up my zinc dose, which can also help chelate copper from the body.
Also, the combination of zinc with disulfiram (Antabuse given to alcoholics) may also be helpful.
On ceruloplasmin levels as a prognostic indicator in bile duct cancer:
Re immunotherapy we are considering adding another drug to my regime which we will know more about this week, and if it happens, I will be all over another repurposed drug, Maraviroc (the HIV drug) known to give one's immune system one serious kick up the ass.
Back to the doctor tomorrow for the current chemo regime with Avastin. Life goes on. X