Here we are sitting in the Oncology waiting room again at Derriford. Bit of confusion as the computer systems are playing up but I’m booked in and the Discovery is parked securely in the car park.
Had a bit of a run in with a BMW driver who was trying to get out as I was coming in but I told him where to go to get out my way. They have this system of giving out a QR code to get you out but they never seem to work so I understand his frustration but he’d caused a gridlock with cars trying to get in so I think it was up to him to get out the way.
Main item on the agenda today are the results of my bone marrow biopsy last month. Let’s see how it goes. At present we’re 45 minutes late with no sign of moving. Clearly something for the new health secretary, Yvette Cooper, to sort out.
When I finally got to meet my consultant I was told that they were switching over to a new computer system hence confusion was reining in the department. Her message to Ms Cooper was that they'd like one system that worked rather than several that didn't, but I digress.
Anyway, to turn to the bone marrow biopsy results. Unfortunately the results showed that my CLL recovery had relapsed and that my marrow was now only 40% effective. Bummer! The difference this time is that my HB level is standing up but my platelet level is falling. Actually my platelet level was about the same as last time but the trend across the past 8 months has been down.
There is no doubt that the consultants think that the Venetoclax Obinutuzumab treatment should have given me a longer period of remission. Given this lack of efficacy plus the fact I have relapsed they want to look for another course of treatment and the choice this time is for one of the BTK inhibitors.
From what I understand at present my white blood cells (B cells) are over active and the BTK inhibitor will hopefully reduce the B cell activity that is causing my CLL. Of course it's more complicated than that and, as always, when you're jigging around with the immune system, there can be serious side effects, hence I have some reading and research of my own to do before I sign up for the treatment.
 |
My immune system has been jigged about so much
I defy any medical professional to understand what it's doing
AI generated image ©Harveywetdog |
The two treatments I am considering are Zanubrutinib or Acalabrutinib. Both are taken orally at home so hospital visits aren't needed for treatment and you're not hooked up to drips for hours. I believe they are treatments for life, there isn't a course of treatment as such.
Hopefully I'll be back at Derriford next week to sign up and start treatment.
I'd have to say yesterday's trip was fine. Tavistock didn't present any problems coming or going, farm traffic was limited as was the number of tourists getting in the way and slowing us down.
Two further thoughts.
I've often said that I wouldn't have my blood tested at Derriford based on my experience during my first visit which saw me waiting for 90 minutes to see a phlebotomist. Any way it turned out that there is a walk in service for Oncology which I used yesterday and which proved most effective. I also noticed a sign that said since October 2025 phlebotomy services at Derriford are by appointment only. So no more sitting for hours in A&E for me.
Second thought; I got into a discussion about how my drugs might be sent to me in the future. I was thinking they'd send them to my GP's surgery which has a dispensary attached. Oh no, that would be too simple wouldn't it. Turns out that the dispensary at Derriford is run by Boots and that they will only deliver to other Boots branches which will mean a trip to Bude or Barnstaple. I kid you not - sounds like a letter to my MP is required.
As always the car park ticket barrier refused to accept the QR code I had been provided with but after a brief "chat" with the chap on the end of the intercom I was released before I had to nudge the barrier out the way with the Discovery.
 |
Wishful thinking
AI image ©Harveywetdog |
Comments
Post a Comment