Wonder-drug Pembrolizumab nearly killed me

Chapter 23 - a downhill adventure

As I said in Chapter 22, I have been feeling increasingly breathless. Once we got to Snowdonia, this trend continued. I also developed a heavy-feeling sluggish stomach, feeling a bit like constipation. And I had increasing difficulty sleeping. (And for many weeks I had had a phlegmy cough.) By the time these symptoms were really hitting me, it was the Easter weekend, so pretty much everything medical was closed - though a phone-call to the Arthur Rank hospice in Cambridge was helpful. With their encouragement, we phoned the out-of-hours GP, flagging up the medicines recommended by Arthur Rank to help with the stomach and the and sleeplessness. The GP came late on Sunday afternoon, and wrote prescriptions for the medicines. He was nice. But no pharmacies were open at this point, so "twas on the Monday morning..."

On the Sunday night my stomach-intransigence had upped a notch, with my first vomiting for many years taking place after I tried to eat half a dinner.

"twas on the Monday morning..."? Even then, Monday was still a bank holiday, and after lots of trying nearby pharmacies in Porthmadog and phone calling and internet searching we eventually found out that the nearest open pharmacy was in Abersoch, nearly one hour's drive away. Luckily at this point I was still capable of a restful two-hour drive, so that is what I did. None of the medicines addressed the breathlessness, however, and this continued to get worse.

On the Tuesday morning I went to the local GP in person (she gave me antibiotics in case the lung problem was an infection), and I was able to phone the Marsden and describe my symptoms. They said I should come in to their hospital and be examined and have a CT scan. I asked if I could instead go to Bangor hospital, a one-hour drive away &emdash; I had read that Bangor was an excellent research hospital for cancer, so I thought they might be able to do everything for me that the Marsden could at this stage. The Marsden phoned Bangor and it was agreed that that is what I would do. (I came to regret this.) At this point it was looking like I might be too weak to drive myself. My lovely mother has come to help out with our holiday, and she drove me to Bangor at about noon. I hoped that with clear instructions from the Marsden, I'd be able to be properly examined and treated the same day.

Let's start with some positives: the staff of the Bangor hospital were lovely, and the food was great. But when I arrived at the exact assessment unit and ward I'd been told to report to, initially I was met by blank faces, and I think often I was treated as a random visiting patient with shortness of breath, rather than a patient with specific instructions and specific hypotheses.

I made very clear when giving my symptoms and history that I was on an experimental trial of Pembrolizumab and Ramucirumab, and that a known side effect risk involved effects on the lungs. I didn't have the google result at my fingertips right then, but I subsequently confirmed that a simple Google search for "side effects of Pembrolizumab" instantly mentions "inflammation of the lung", and the official website for the drug shows four "Serious Side Effects" of which the first listed is "Lung problems (pneumonitis)" with subheadings "Shortness of breath; Chest pain; New or worse cough".

In spite of this and in spite of instructions from the Marsden to give me a CT scan (and a couple of other simpler tests), the Bangor hospital's decision was to do just one thing at a time, and very slowly. The first thing they did was not a CT scan - it was judged too unlikely that I had a pulmonary clot to be worth doing a CT scan. The decision was to give me a chest X-ray. This took until very late afternoon to happen, by which time the consultant had left, so I was to hear the x-ray result from someone else, and stay in overnight, and hear a plan the following day. The x-ray result was duly reported to me: "you have got alveolitis". And that was that. Treatment? Nope. Manana. (Checking a few lines down on the "Serious Side Effects" webpage, the treatment advice is: Getting medical treatment right away may help keep these problems from becoming more serious. ... Your doctor may treat you with corticosteroid or hormone replacement medicines.) My mother drove off home to the holiday house past the beautiful sunset snowy mountains of Snowdonia.

Thus began one of the most uncomfortable nights of my life. Hospital beds are made for hygiene, which means plastic sheets, which create for me a roasting sauna of boggy sweatiness. So after a few minutes on my back I have to turn to my side. Then my other side. All the while my head and neck having similar misery with the sweaty pillow. I tried switching head for tail on the bed. I tried elevating the head of the bed. I went for walks. I went to the loo to let the bed cool down. And all the time a cannula niggling away in my right arm. Awful. Eventually I asked a nurse if I might take one of my tramadol pills that a GP had given me. That sent me to sleep in the sauna bog for a few hours.

And the morning came. And I waited to be seen by a doctor. When one finally turned up (another doctor, not the previous day's consultant, nor the previous day's "you have alveolitis" chap), I reminded him about the "alveolitis" statement which seemed to agree with the hypothesis that "the Pem is being bad for me", thus explaining what was going on with the breathless, and pointing to a treatment? No no, he said, you very probably have NOT got alveolitis. What? I asked if he had talked to the Marsden. He did so, and decided that he would implement the Marsden's plan, which was to give me a CT scan.

My lovely sister Janet, who is a GP, phoned up the ward and spoke to the doctor too. He said "David is going to have a CT scan - oh, no, the CT scan unit have refused to give it to him; I will have to talk to them." This other bit of the hospital, presumably having heard that the purpose of the CT scan was to resolve whether I had a pulmonary clot, judged that it was not a clinically valid test to do. My doctor had a fight with them and got their agreement. "There will be a CT scan." I asked every hour or so when it would be. "They will call you" was the answer from the nurses. I was given a second larger cannula in my left arm in preparation.

Again at about 4 or 5pm, I asked "when will it be?" - and the answer was "probably tomorrow, dear". Why had no progress been made, all day, on either diagnosis or treatment? Normally the ward had two consultants, but this day there happened to be just one, so it had not been possible for yesterday's admissions to be seen by the consultant. All such patients were expected to just sit and stew and wait another day and night. So I never heard why the diagnosis of the night before had been retracted.

By this point my sister Janet had arrived and I discussed with her what I understood to be going on with the breathlessness.

There were four possibilities I was aware of:

1. I might have a chest infection; and this was already being treated by antibiotics.
2. I might have a pulmonary embolism; but this was unlikely, and anyway was already being treated by the daily Fragmin injections.
3. I might have alveolitis or pneumonitis, caused by the experimental treatment - and this would be treated with steroids.
4. Or it might just be that the normal progression of my cancer was somehow making me very breathless - I didn't understand a mechanism for this, but my oncologist in Cambridge had said that it was possible to go downhill fast.

Looking at this list, the first two were already treated, and the last seemed untreatable, and all that was left at number 3 in the list is the idea that I should perhaps get onto some steroids. (At this point, I had reminded myself of the Side Effects instructions, thanks to my mobile phone's web browser.)

I asked to see a doctor. I was told after an hour's wait or so that it wasn't possible to see a doctor (because of the second consultant being off as mentioned above) but I could talk to the senior nurse.

I ran through these hypotheses and potential treatments and requested (a) to be given steroids as advised by the Pembrolizumab website; and (b) to be discharged from the hospital immediately. The nurse was very kind and agreed, and I ate the steroids she gave me at 6pm, and Janet drove me off past the snowy mountains and into the sunset of Snowdonia.

By this point, my breathlessness was extreme - I was panting like a dog, at least sixty breaths per minute, and feeling very run down. Sitting in the car seat was uncomfortable. If number 4 was the correct hypothesis then it felt like perhaps I just had a few days left to live, and I felt really angry that I had lost a whole precious 24 hours in Bangor hospital not being diagnosed coherently, and not being treated.

But the staff were lovely and the hot food was absolutely excellent! Got to keep things balanced.

This whole time, my stomach problems had continued, with poos emerging only very rarely, with me having very little appetite, and with my phlegm-coughing attempts occasionally leading to violent and noisy retching when my body attempted to throw up, as an alternative to getting the phlegm out.

When I got home I had a cup of soup and took a sleeping pill and a tramadol and went to bed. Our plan was to get me to Cambridge so I could be seen by my familiar doctors somehow the following day.

Remarkably, the following morning I was transformed. Clearly the steroids were the right call and had had an effect. I was still coughing and still lacking appetite, and still at risk of vomiting, but I was much less breathless. I could walk around slowly. We decided to drive in convoy with Janet to Cambridge. We packed up I was confident that I could drive our car half way to Cambridge, and we made tentative plans to drop our car half way and continue in Janet's car if necessary. But once we were under way, I reckoned I could drive all the way, and that is what we did. I was very uncomfortable for the last hour, but we were urged on by friendly emails and phonically from the Cambridge hospital, saying that a bed was ready for me in the Oncology area's Assessment Unit, as long as I got there before 6pm.

I got there before 6pm, and two lovely doctors assessed me and discussed hypotheses, further tests, and potential treatments. They took blood, and the plan was to do a CT scan, but that would be the next day. I could stay overnight or return home, as long as I got in touch the instant there was any worsening of my state. My state had got a lot worse again - the small dose of steroids given my 24 hours before in Bangor had worn off, and I was panting again - albeit with 100% blood oxygen saturation. I received a fresh dose of steroids, double the size, and went home.

My sleep was somewhat troubled by the snuggling of a Torrin in my bed (his snuggling involves a lot of foot work), but bright and early I was up and off to Addenbrookes for my 9am appointment with the CT scan.

And (after a couple of hours' wait) the CT scan showed (as expected) no blood clots in the lungs; and it did show possible evidence of "adverse drug reaction". I also requested an x-ray of my hip, to see whether I had bone disease on the go in there. The result of that x-ray was negative. Indeed the steroids or the tramadol seem to have slightly reduced my hip tenderness.

I collected my prescription of millions of steroid pills for the next few weeks, and went home.

The steroids make me wild and obnoxious but I am very happy to have a bit of a reduction in breathlessness.

My back is still bothering me, I'm still coughing, and I still have not poo'd for a long time. And sometimes I just want to lie down and groan. But then the steroids kick in and I feel able to be human for a few minutes at a time, and to write blog posts.

Here you are.

Snowdonia here we come!

Chapter 22 - an impatient patient
The daily injections of heparin are a pain, literally. Sometimes it makes me cry. My deep vein thrombosis is getting better slowly. Walking is still painful, and driving is not completely comfortable, but we are going to go on holiday tomorrow. Below is the view that awaits us.

I'm feeling quite tired most of the time, and get breathless after small amounts of exercise. I cough a lot at night, which strains my back and rib muscles. I do sometimes wonder whether I've now started a final downward curve.

Further developments, March 2016

Chapter 21 - another visit to London

In my last blog post I said it looked like I might need to leave the experimental (monoclonal ab) trial, because of my deep-vein thrombosis. However, on Thursday evening, the Marsden team phoned me and said that they would like me to come to London after all, with a view to giving me the Ramucirumab treatment one day late, on Friday 18 March.

So, I lined up a taxi and asked my kind travel companion Edmund if he could help me with wheelchairs and so forth for the day. British Rail did a very good job of laying on wheelchairs in Cambridge and London. We got to the Marsden before noon on Friday. After a wait, we got a wheelchair and got to the medical day unit. Then after another wait, my blood samples were taken. Then I met a doctor who had seen my blood results from Cambridge (from Wednesday) in which a very high concentration of "ALP" was a concern. She thought it was likely that given both the ALP measurements and my DVT, it was unlikely that they would give me treatment after all. Then there was a very long and sometimes uncomfortable wait for the Friday blood results to come through. It turned out that my bloods had been lost in the hospital's pneumatic delivery system. Finally at about 4pm, the blood results arrived, and the high ALP levels were confirmed, and we were sent back, at rush hour, to Cambridge.

What a pointless day it turned out to be! I would much rather have stayed in bed. And the information about the ALP measurements was already available on Wednesday.

The one benefit from the outing is that the ALP issue is now getting attention. What does it mean? ALP can mean either bone disease or liver obstruction. There are no other indicators of liver malfunction, so liver is unlikely. So the lead hypothesis, which may be investigated in 3 weeks' time, is that there is something going on in a bone somewhere.

The thrombosis is still hurting quite a lot if I try to walk. Hopefully we will be able to go on holiday soon anyway.

A trial and a tribulation

Chapter 18 – visits 6 and 7 to London – a trial starts...

On Monday 7th March, I went to the Cambridge hospital to see my big chief oncologist. I told him that it looked like I was being accepted into the Marsden trial. I mentioned that my left arm had been giving me bouts of pain, perhaps because of the oxaliplatin treatment I had 6 months ago, and asked if I could be prescribed Amitriptyline, which my sister recommended. This was agreed. Then I ran off to do some teaching at the University - a mock select committee hearing, where the students played the role of a government department and various lobbyists, and I played the role of chair of the select committee. That was fun.

On Tuesday 8th March, Ramesh and I picked up my Amitriptyline prescription then took the train to London. At the Marsden I provided a urine sample and signed some final consent forms with one of the doctors in charge of the trial.

On Wednesday 9th March I gave my final lecture on Information Theory in Cambridge.

Then on Thursday 10th March we went down to London again for a 3pm appointment to start the Ramucirumab and Pembrolizumab treatment. There was quite a long wait, because the hospital was short staffed. The treatment got going at about 5pm.

This photo shows the tiny bag of Pembrolizumab – I think this much drug costs about 10,000 pounds.

The only noticeable side-effect of the treatment was that my blood pressure went up a bit.

After being observed for an hour, we were free to return to Cambridge.

Chapter 19 – other ailments

I've had a phlegmy cough for such a long time now, I have lost track of when it started. I started taking antibiotics for the cough about Saturday 5th March. I had a few scintillating scotomas as well in February and early March. Not painful. And I've had a perpetual roaming pain that has wandered around my body: what was at first for a few weeks a spasm in my upper back migrated down and became a severe right rib pain for a week; then it seemed to travel into my left hip, which became superficially tender so that I limped for a few days.

Then we had a delightful three-day collection of meetings: a one-day research-group reunion, and a two-day symposium on "Information Theory, Inference, and Energy" (photo below by jamiegundry.com).

On Tuesday 15th, during the symposium, my hip pain again switched sides and took up residence in my right calf. It felt a lot like a cramp.

On Wednesday morning, given that walking felt quite difficult, I decided that I should ask the medics to check out my calf pain in case it was a deep vein thrombosis (i.e., a clot in a vein in my leg). I phoned the hospital at 8am, and they asked me to see my GP and, if appropriate, get referred back to the hospital. I called the Marsden to let them know what was going on. The GP saw me at 11.20, and reckoned there was a modest chance that I did have a DVT, so he gave me a letter and I cycled to A+E at the hospital. (Walking was difficult but cycling slowly was fine.) We met the Addenbrookes Thrombosis team, who were absolutely wonderful, and at about 1.30pm I was ultrasounded and it turned out that I did have a small DVT.

So, all of a sudden, I'm a different sort of patient, and new medicine is required.

The lovely nurse took my blood samples, I had a talk to the consultant, and then we waited for the results to come back.

The recommended treatment for deep vein thrombosis for a cancer patient is Dalteparin (aka Fragmin, a heparin), which is injected daily.

The nurse showed us how to do the injection. It really hurt!

Then we went home. As I went to bed, we received a phonecall from an out of hours doctor at the hospital who had seen my latest blood results: my "d-dimer" levels were very high, which indicated a thrombosis was likely; he was reassured that I had already been given treatment. How interesting that they can measure these sorts of things from a bit of blood!

A big thank you to our lovely friends who looked after our children repeatedly this day and over the last few weeks!

Chapter 20 – the trial ends?

Today, Thursday 17th March, I had been due to travel down to London for my second Ramucirumab infusion. But the Marsden said that under the experimental protocol, my thrombosis means I can't have Ramucirumab any more. So perhaps my experimental treatment is over. We wait to hear.

I'm staying at home, unable to walk today, but hoping that within a couple of days I'll be on my feet again. Our plan is to go to Wales for a holiday where we hope to enjoy views like this:

Dasher version 5.0 released!

I'm thrilled that a new development team for Dasher is now being led by Ada Majorek, who works for Google in California. Ada has just released Dasher version 5.0, and it is available from https://github.com/ipomoena/dasher/releases.

Version 5.0 has many improvements to practical usability, improving the way that Dasher can interface to real world tasks, such as switching between writing on the computer and having a quick conversation.

I'll update the original Dasher website shortly so that it has pointers to the new release too.

Thank you, Ada, and team!!

After five visits to London hospitals...

Chapter 17 - mulling the lottery of clinical trials
On my first visit to the Marsden hospital near South Kensington, I met a couple of young doctors who explained the trials for which I might be eligible. They didn't exactly line up with what I said in my last blog, and the set on offer actually changed during the day, because doctor 2 added another option to the mix, which doctor 1 hadn't known about; and that extra option is the one I have actually signed up for. After seeing doctors 1 and 2, I met big chief doctor 3, and asked him what he would do in my shoes, and he said he would join the trial that I am now joining. I'll talk about the other option later because it involved some interesting ethical questions, but let's tell you about this recommended trial. It is a trial of two monoclonal antibodies, given together, on days 1 and 8 of a 21-day cycle. The two antibodies are Ramucirumab, which may inhibit blood vessel formation, and thereby sometimes (perhaps in 1 in 5 cases) slows tumour growth; and Pembrolizumab, which may switch on the body's immune response to the cancer (but perhaps only in 1 in 20 or 1 in 10 cases). The data for these two drugs for stomach cancer is quite limited, so all claims of efficacy seem quite uncertain, but the sales pitch from the research doctors was that Ramucirumab is "just as good as the standard second-line treatment" (namely the cytotoxin Paclitaxel, which has a helpful effect in about 1 in 5 cases, which in my view is not great); and that Pembrolizumab offers the chance of remission, albeit an unknown chance, and probably quite small. ("Pem", by the way, is an Anti-PD1, which is a type of monoclonal antibody I had been told by other friends was promising, and I should look out for.)

I am wary of the natural cognitive bias of researchers towards optimism about their research targets. So my gut feeling for asking to join this study was not strong. What made the opportunity more awkward was the "buy immediately while stocks last" pressure: the "Ram+Pem" trial was available internationally, right now, and open to only 6 patients. So if there was any delay, I might not get in!

Tilting me towards joining the trial was the fact that the other trial on offer at the Marsden was a trial that would offer me only "Pem" (not "Ram"), and even then, it would offer only a 50% chance of getting "Pem", thanks to randomisation. In the other branch, the treatment would be the standard second-line cytotoxin, Paclitaxel. So if I didn't get on with joining the Ram+Pem trial, I would definitely be stuck with my only option being a trial that was rated by the experts at least to be inferior to Ram+Pem.

Tilting me in the other direction, against the trial, was the certainty that joining the trial will guzzle up time and energy and will massively constrain my diary, making travel and holidays near-impossible, all in what may prove to be my final six months of life. The trial would involve coming to the hospital roughly twice every week, once for tests, and once for treatment. (Was there any way that some of the tests could simply be done in Cambridge? No, they said.)

I think it is quite comparable to a choice between buying 10,000 lottery tickets per week (so as to get a 1 in 140 chance of winning a jackpot, after a couple of years); or not buying those tickets.

When I discussed this choice with Ramesh, our feeling was that if I was obliged, most weeks, to travel to London on two separate days per week (which is what the doctors indicated would be required) then that would be too much cost. But if the cost were one day-trip to London per week for the rest of my life, then maybe that would be a price worth paying. We made clear to the doctors and the research nurse that we would really really like to not have to travel to London twice in a week.

And we figured, "if we don't like it, we can always withdraw from the trial".

So we decided to sign me up.

And guess what? Ethical rules forbid you from signing up on the same day. So I had to travel home on the train to Cambridge. Then get back on the damn train to London first thing the next morning. And meet the helpful doctor number 1 again. And sign the consent form. Then take the train back to Cambridge. Helpful doctor number 1 did say one nice thing: she said that they had reviewed the timings and they thought that actually it would be possible for me to make just one visit to London per week for the trial. The next step would be for the research nurse to organise for me to be screened, which would involve more trips to London, for a lot of tests. I begged for these screening tests to be combined to minimise my number of trips.

Here endeth the second visit to a London hospital

I was rather disappointed that, even though I'm sure my request for combined tests had been heard and understood, what happened next was a string of single appointments. The first call was about my CT scan. [Because the Marsden's trial required a CT scan even fresher than the very recent one made in Cambridge.] I accepted the appointment, but phoned the research nurse to say, erm, is this CT scan visit going to be combined with anything else? Then I received a letter telling me to come to London for an echocardiogram on another date. I phoned the research nurse again, and she shuffled both appointments and got them to be on a single day, albeit at two hospitals in London separated by more than 1 hour's travel.

Visit number three
As I said, the hospital in Cambridge isn't eligible to carry out tests for the Marsden; but St Anthony's hospital - a private hospital in the outer spiral arm of the galaxy, is. So on Friday 26th February I took the train to London, then a Thameslink train to Sutton, then a bus with a confusing 'next stop' display, which caused me to de-bus one mile early, after which I walked the last mile. The private hospital was very plush. I got echo-cardiogrammed, and the scientist confirmed that I had a heart and that she had no objection to me joining the trial.

Visit number four
A long public-transport journey later, I was at the Marsden for the CT scan. That went smoothly, indeed I was in and out early. And so, back home, to wait for more joined up tests.

The next phonecall I received was from the clinical assessment unit who wanted to schedule my biopsy. The appointment was bang in the middle of my teaching in Cambridge. I asked if the biopsy people could talk to the research people about tweaking the date; the answer was no, this was the only slot that fitted with the required research schedule. So I cancelled and rearranged my teaching, and got on the train to London. An overnight stay was required because they wanted me to show up at 8.30am. As I was getting ready to leave on Tuesday evening, Torrin clung to my leg. I think he was playing, rather than really wanting me "not to go", but the thought of a crying Torrin clinging to my leg and not letting me go stuck with me for the next 24 hours.

Visit number five
Before going to London, I made sure that the Cambridge research gang were aware that I was having a biopsy and that they were given the chance to request some tissue to go to them too. (You might recall that my voluntary gastroscopy-biopsy for Cambridge had failed to yield any satisfactory tissue.) I turned up at the Marsden on time. I was processed steadily by lovely staff (Alex and Greg in particular): cannula in; blood samples taken; answer a checklist; move into a cubicle; change into gown; get wheeled upstairs (by a skilled porter, navigating absurdly narrow corridors); answer a checklist; stare at the wall for 20 minutes; meet the Consultant; sign the consent form; get wheeled into a cold room full of toys; wait there just long enough for my left arm (which has been aching a lot recently) to really start aching. Then the consultant carefully looked with ultrasound in my neck at the target lymph node - I didn't tell you, did I, that the biopsy this time was to be from a lymph node that is enlarged and is therefore "hopefully" cancerous. Its size is still small though - only 9mm by 18mm. And the consultant told me that his bolt gun (I can't remember the correct term) has a throw of 20-25mm! So he was very likely to be chomping adjacent tissue as well as lymph node. Then in came the research nurse to collect the samples, and she told him what size was required, and he shot me slowly four times in the neck - the second impact really gave me a jolt [he said it must have hit a nerve]. Then another long wait in the cold room, then the reverse trolley ride, then a two hour wait accompanied by radio 4 and regular heart check-ups, then I was free to go. Except just before going I thought it was a good idea to phone the research nurse and ask what their plans were and was there anything else I could do for them today?

The research nurse seemed surprised that I hadn't heard: I am due to have visits six and seven on Tuesday and Thursday of next week!

The story goes on. This is way more travelling to London than I hoped, and I am disappointed about the poor communication, but I won't complain at this point. If all goes to plan this next-Thursday visit number 7 will be the start of my experimental Ram+Pem treatment.

Once that is under our belt, I will try to enforce the "only one visit per week" rule.

In other news
As I said, my left arm has been aching a lot (typically for 20 minutes at a time). Also I have been having a perpetual feeling of numbness in my left fingers, especially the tips, and much of the time a similar feeling in my left toes. After talking to my oncologist, I think these are all just long-lasting neuropathies caused by the first cycle of EOX chemotherapy back in August.
At the same time, I have been having awful back trouble. After I helped Torrin learn to ride his bike without stabilisers, I picked up a screaming Eriska, and developed a back spasm that has lasted three weeks now, cunningly moving around the back whenever my masseuse or my physio managed to cure the spasm where it was.
And the last three weeks have been dominated not only by the bad back but also by a non-stop coughy cold.

I'm sorry this feels not a very entertaining chapter.
Let me wrap up with some movie reviews and with the clinical trial anecdote I promised earlier.
The other trial I was offered at the Marsden was a randomised open-label comparison of "Pem" with the standard second line treatment, Paclitaxel, which I could already receive in Cambridge if I wanted it; but if I were in the trial I would be obliged to travel to London every week to have the whatever it was - Pem or Paclitaxel - even if it was in fact Paclitaxel. This felt a silly thing to do - if I got randomised onto the Paclitaxel branch, what would be the point, from my selfish point of view, in travelling to London every week for a treatment I could have got with my lovely Cambridge people? I left this thought unspoken, but one of the staff in London actually voiced exactly this thought for me and said that I would be entitled to leave the study at any point and it would be quite understandable if I were to quit after the randomisation if I were randomised onto the Paclitaxel branch.
I thought it was nice of the staff-member to say this. But would it be ethical to behave in that way? [Statisticians, wanting the trial to be valid, would be horrified at the idea of a patient choosing to leave the trial after the randomisation.] Fortunately I have not had to make this decision, as it looks like I am fully enrolled in a no-randomisation trial.

Movie time!
We have been enjoying some more movies, although we have, among the good ones, chosen a couple of films so awful that we actually stopped watching them, which is not something we often do.
Here are the good ones:

Heist (Gene Hackman) is a film I have seen before but I had forgotten almost all of it. It was a good film. Perhaps an implausible final relationship twist at the end, but lots of nice content along the way. I love heist films.	☆☆☆
The Martian - very well made, and a nice film about science. The one bit I couldn't believe was (in the final act) that Matt Damon would be able to steer his specially-pierced jet-suit without setting himself spinning; and then I couldn't imagine how he could have used his jet to cancel the spin, without producing another unwanted spin.	☆☆☆☆
A nice realistic film was Enough Said, which in spite of being set in Los Angeles was quite watchable. Most of the main characters are female, and the director was female too.	☆☆☆

The uncertainty continues

Chapter 16 – more CT scans, more data

Life is full of uncertainties. For example: Is this the worst cycle-lane pinch-point in Cambridge?

Does anyone in the University of Cambridge administration actually care about this awful junction design? Will our campaign for a safer Huntingdon Road succeed in getting an improved route for cyclists? When will my tumours cause actual trouble?
Data trickle in. We have heard that the University has now (about 3 and a half months after we suggested it) started talking to the land owners about the possibility of buying a thin strip of land to enable the pavement to be widened into a shared-use pavement and off-road cycle path, as indicated in the diagram below.

And I had a CT scan 8 days ago and saw the big chief oncologist today, and he said that the CT scan shows that three lymph nodes in my chest have got significantly bigger (they are all about 10mm wide). He reckons that this probably means the lymph nodes are cancerous, which may not matter too much, because they have room to grow into; but he reckons that there are probably similar secondary tumours elsewhere, and the fact that the lymph nodes have grown in size so soon after I stopped chemotherapy is bad news. Somewhere else, something is probably progressing. When I asked for more information about what 'progress' leads to, he mentioned "six months"; I think this was a worst-case scenario life expectancy.
He thinks I should be offered new treatments. He mentioned two standard treatments using taxanes which are yew tree extracts. One is called docetaxel, and one is paclitaxel. Alternatively I could get experimental treatments. He's going to refer me to the Marsden hospital, where they have trials of (a) a STAT3 inhibitor, which is hoped to interfere with cancer stem cells, and (b) Pembrolizumab, a checkpoint inhibitor. They are all rather unpronounceable and difficult to spell.
I'm disappointed to be back into the chemotherapy system so quickly – I was hoping for a good six months' break or so. And maybe to avoid life being just non-stop chemo, maybe I'll reserve some time for holiday and fun.
Anyway, I'm looking forward to meeting doctors in London; it'll be nice to get more opinions about what should be done with me.

One unexpected finding is that the CT scans show that I have two inferior vena cavas, where most people have only 1.
Other news: Torrin has learned to ride a pedal bike. Eriska has learned how to put duplo pieces together. We've all had upset stomachs and colds, and I'm currently languishing uselessly at home with a frozen-up back, which, frustratingly, is so sensitive that I can't get on and off a bike.
Movies!
We have continued our movie-watching spree, and have seen a few more goodies...

We really enjoyed The Big Short, although it is possible that the equally good documentary Inside Job gives more insight into the explanation of who was to blame (e.g. Goldman-Sachs) and who ended up making loads of money (Goldman-Sachs), thanks to their undeserved bail-out, and who still makes loads of money.	☆☆☆☆☆
We bought the Full Monty style Pride on DVD, about an alliance between gay rights campaigners in London and miners in Wales. This felt a bit predictable in places (especially when Imelda Staunton and her gaggle all overnighted in a gay couple's house, magazines, toys, cackle cackle, ha-ha), but the true-story aspects were striking and memorable.	☆☆☆
Back in the cinema, we thought Trumbo was a fantastic film. A lovely portrayal of blacklisted hollywood during the McCarthy era, doing a good job of portraying different responses to the horrible situation; I especially liked the big argument between Trumbo (the writer) and the big actor who didn't take a stand like Trumbo. And the Goodman Director character was brilliant.	☆☆☆☆☆
When we turn to Netflix, we often struggle to find anything that we want to watch. Perhaps it's just that Netflix has a really bad user interface. I don't know. Anyway, while scraping the bottom of the Netflix barrel, we stumbled on Cowboys and Aliens, which opens as a really well made Western film, then turns into a "what would happen if the flying saucers arrived during the gold rush?" film, with an implausible balance in the fight being achieved by ensuring that the aliens' weapons always fire just a bit behind the fleeing humans, not at them.	☆☆☆
Finally, we watched, again, the lovely Angel's Share.	☆☆☆☆☆