Medical Update

December 29, 2019

This is a purely medical update because my emotions have been all over the place in the last few weeks and I can't be bothered going in to that in this post.

Mid-November I saw an new oncologist who was recommended by one of my other doctors. He looked at me and declared almost immediately that he thought a mistake may have been made based on the fact that I walked into the room looking as healthy as the next person on the street, and because my previous scans (from July) might have been jumped the gun in suggesting treatment wasn't working. He thought there was a possibility that the disease wasn't progressing as previously suggested and that some of the treatment would be working i.e. the mitotane. Another scan was arranged and I had a week of trying to dampen my optimism in case he was wrong. I failed spectacularly in that and it turned out he was wrong and the tumour had grown, as previously expected. No new sites but considerable growth around the surgical bed next to the liver - it's pushing around 6cm x 4cm already. There had also been smaller growth in the lungs, with a couple of mets at about 2-3cm. All my doctors said that if it was them, they would start a treatment sooner rather than later, so that if the chemo was to keep disease stable it would keep me in the good condition I'm in now rather than in a potentially worse condition if it progresses and causes me issues in the next few months. So I decided to bite the bullet and ditch my plans on living December to excess.

As my mitotane level is stubbornly staying up above 10mg/l (nowhere near the 2mg/l I need for the Phase 2 trial in Germany so that's currently on hold) the treatment suggested for the time being is GemCap chemo which I previously ruled out in the summer when I was fed up with poisoning myself and it not being seen as effective in the long term. It's a 21 day cycle - Gemcitabine intravenously on days 1 and 8, and taking Capecitabine twice a day in pill form pill. I was told it was a relatively gentle treatment, not even comparable to the chemo I was on before, and that the main effects would be low RBC (anemia = fatigue) and WBC (risk of infection), and then potentially things like a rash on my hands and feet. However, after I had signed the next 9 weeks of my life away to try this treatment my onco said he should check a level of an enzyme in my blood called DPD which is essentially to breaking down the capecitabine. Its only low in about 5-10% of people but for the unlucky few it can cause extra problems like huge GI issues that resemble dysentery, a much more comprehensive and debilitating rash, WBC levels that resemble someone with HIV, the potential for issues that could lead to a heart attack, kidney/liver failure and generally feelings shit all around.

As I'm sure you have already guessed seeing as I'm writing about it, I'm in that unwanted exclusive group with the DPD deficiency. My dose was reduced to 80% of the norm and the pharmacist gave me an extended talk about the potential horrorshow of the 'gentle' treatment. It ended with me being told to that there was nothing to do really except stay on my guard in case I get any symptoms, particularly in the first few weeks, in which case to get myself to a hospital ASAP. This didn't fill me with too much confidence and removed the feeling of this being low risk chemo and made me feel a lot less positive about its potential side effects. However, I'm over 2 weeks into the treatment now and I don't seem to be getting any of the bad stuff so although I'm not completely out of the woods, hopefully the largest redwoods are behind me.

So far, so gentle. My old friend, fatigue, has returned, but it is not debilitating like last time where walking to the kitchen was sometimes the biggest achievement in the day, and my brain is slightly slower but I'm able to cope follow a book or conversation without too many issues. My blood results came back an absolute shitshow after the first week of treatment, as expected, but at least they show my organs are healthy. The only other noticeable side effect I've had is itching which was so bad at the beginning that I couldn't sleep, but a strong antihistamine they have prescribed seems to do a job of controlling that. But as I'm on constant guard for side effects I'm being very sensible with drinking and not having more than a couple, so between that and the fatigue it was a quiet Christmas period. Under the surface, I think I'm still feeling the impact of coming off the sertraline and temazepam which is impacting my energy but has mainly been messing with my emotions. I will touch on that in the next post which I'll try and put together early next year.

On the surface, at least, I'm in good health. I am at a normal weight, I'm exercising, and the addition of a bit of weight, muscle and hair has me looking almost like my old self. The exception being very blonde chemo curls, but I'm never going to be insulted if someone compares me to Justin Timberlake, even if people mean the Nsync version with the weird afro and highlights.

P.S Thanks for everyone for a great November and birthday month. It was great to see people both at the Blues Kitchen and especially or the tree planting event on the Saturday where there was a great turnout for a day of miserable weather. It was pretty low key in terms of how much we actually contributed, but thousands of trees were planted so I feel we deserved to spend the rest of the afternoon in the pub.