Chronic lymphocytic leukaemia (CLL) Pure Red Cell Aplasia (PRCA) - one man's journey (Part 16) - no sign of disease returning!

Hopefully this will be the final chapter in my CLL/PRCA story; now where was I..........

In part 15 I explained how I was running down my Ciclosporin dose and making sure that it didn't have an adverse effect on my haemoglobin (HB) level. I've more or less reached the state with the NHS that I'm not a priority for them and they tend to forget about me - fair enough, I'm sure there are people who are in a lot worse condition than me who need their attention. I've also adopted a "no news is good news approach".

What this meant was that after I'd moved to 1x25mg tablet a day, with the plan to move to 1x25mg tablet every other day, when no consultation was forthcoming at the start of November I moved myself onto this lower dose on the basis that if they weren't happy they'd tell me (I had had a blood test the week before and I did email my Nurse Specialist to tell her of my intention).

Goodbye old friend
Note the pharmacist's self checking

Luckily I had a surfeit of medication for another six weeks at the lower rate and so I carried on regardless. I have said before that I would hate to have been ill and having to deal with the NHS but as long as you've got your wits about you and know where you want to be then you can generally muddle through. I don't like to criticise the NHS, because after all they probably saved my life, but I've found that they've got all the right intentions but the organisational ability of a frog (why a frog, I don't know it just rolled off the keyboard).

During this time I went privately and had a hernia fixed in my stomach which had been troubling me since 2021 but which I'd put off having treated due to Covid being around and me being immunosuppressed with the CLL. That's all done now so I will be good for lugging the new camera and tripod around next season.

Getting the chain harrow stuck
How I caused my hernia
©Harveywetdog

Finally in December I got the call up for another haematology consultation at relatively short notice and thanks to Newent Doctors' Practice for squeezing me in for a blood test. The results of the consultation couldn't have been better with the consultant saying the magic words "no signs of the disease returning" and telling me to stop the Ciclosporin. I think he thought he was going to tell me to go onto 1x25mg tablet every other day but I told him I was already there so he said well stop then.

I am still taking Exjade to get my Iron levels down from all the transfusions I had during treatment (thanks to all blood donors, that definitely saved my life) but even that is nearly there so I'm expecting to stop taking that medication in February and that will be that. As part of the consultation we discussed the idea of venesection, basically blood letting to remove the iron from the body via my  blood and then letting the body replace it without the iron. As the consultant suggested I was already getting down to an acceptable iron level I decided not to go with the venesection option - what will they be suggesting next, leeches?

The new tripod and camera

Update December 2024

Ultimately I did go in for two cycles of venesection in May and June 2024 and yes, it was almost an armful.

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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 recently recovered from blood cancer but refuses to be a victim

All views are his own but might be influenced by the medication he's had to take