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.