As I explained last week, having been advised that I was to start my second line (2L) treatment for my relapsed CLL with one of the modern BTK inhibitor drugs, either Acalabrutinib and Zanubrutinib, I carried out some research over the weekend and plumped for Zanubrutinib. As with all drugs there are risks, but I decided that Zanubrutinib was for me based on the information the hospital gave me and the output of an AI based analysis of the pros and cons from Google.
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Heading to Plymouth again
AI Image - ©Harveywetdog |
This meant another trip to Derriford to sign the consent form. As I also explained last week Derriford are currently introducing a new IT system, known modestly as Epic, consequently I was warned that there may be some delays on the day due to teething problems with the new system.
The appointment started about 25 minutes late, which wasn't too bad, and was recorded on the consultants laptop which meant the record was available the next day and, all being well, a follow up blood test should have been arranged with my GP and my drugs ordered and delivered to a nearby Boots pharmacy.
Obviously the term "nearby" has to be taken with a pinch of salt when one is talking about Devon's roads, traffic and tourists. Every where seems twice as far away as it need be and you have to be prepared for lots of 20mph behind tractors, caravans and sight seers. I'll see how it works and if there is any way I can get the drugs delivered to my GP.
As we know any plan does not survive first contact with the enemy and in my case it was when I suggested to my GP's surgery that Derriford had sent them a computer based instruction to carry out a blood test in three weeks time. That was a definite "computer says no" moment. Add to that the fact that my Epic "Past Visit Details" suggest that my drugs still haven't been prescribed then I'm not confident when I'll get them currently.
"As I always say, I wouldn't want to be ill and having to deal with the NHS"
Slight update on Saturday morning, three days after my consultation. My 'phone binged this morning to say that Boots had received my prescription and that they will notify me when it's out for delivery to Barnstaple. It advises that this is usually within 72 hours - so in other words it will takes Derriford nearly a week to get their drugs to me, something which generally took Gloucester a few hours. My past visit details still don't provide any information about the drugs, so it appears they are working outside the system.
I had expected to pick the drugs up at Derriford and start treatment this week but it appears I have to wait at least another week. I'll give another update once I start treatment.
Update 6th August (Thursday)
Well the good news is that I've taken my first day's worth of drugs and I feel okay; let's hope they've started working. I've to avoid Seville Oranges so no more marmalade I'm afraid.
The update from the hospital on the blood test is that I've been sent a community blood test letter which I should be able to present to my GP. I've also been told that with the introduction of the new computer based system Derriford hospital will no longer be issuing paper based blood test forms so we've got to make the system work somehow.
Obtaining the drugs was interesting; I had assumed when the consultant said "Barnstaple" she'd meant Barnstaple hospital. No that would be too easy wouldn't it; as would have been sending the drugs to the Boots on the Roundswell business park on the outskirts of Barnstaple. No the drugs are sent into the centre of Barnstaple, with pedestrian access only, involving a tour of the maze that is driving through this overcrowded seaside town, and of course a stop in an overpriced car park.
So lots of work to do to get these arrangements working more smoothly. In the meantime my daily dose is
- Zanubrutinib - 4 tablets per day
- Cotrimoxazole - to treat infections - 1 tablet per day
- Aciclovir - anti viral - 1 tablet twice per day
- and 1 tablet per day of Allopurinol for 14 days to prevent too much uric acid build up
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Under way with Zanubrutinib (Brukinsa)
©Harveywetdog |
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©Harveywetdog/Author - David Robinson CEng FIET
David spent approaching 50 years in Her Majesty's Electricity Supply Industry before retiring
He was part of the highly successful design team on the Sizewell B Nuclear Power Station Project before spending 25 years producing safety cases to keep our aging AGR fleet generating for the good of the nation
He is responsible for the Harveywetdog YouTube Channel which he maintains as an outlet for his creative talents
David has twice experienced blood cancer treatment but absolutely refuses to be a victim
All views are of course his own but might be influenced by the medication he's had to take
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