In part 9 I talked about my red blood count not picking up in response to my treatment and the need for a further bone marrow test. We now get the chance to discuss how November went and how the results of my marrow test where we have some good news and some bad news.
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Back at the hospital
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I was hoping this would be a positive blog; we finished October looking forward to various vaccinations and a second bone marrow test and I was confident the latter would demonstrate improvement, even if it was taking its time. I was under no illusion that I’d let myself get into a poor condition before I’d gone to the doctor and consequently couldn’t expect that recovery would be immediate. (We don’t talk about cure with cancer).
The marrow test itself was more painful than last time. Painful in as much I felt it this time whereas last time it was more of a sensation of someone tapping into my hip bone. I took the fact that it felt more painful to mean that my marrow is in fact in a healthier condition and when I looked at the sample that the nurse had extracted from my body it certainly looked healthier; a nice red piece of marrow while my memory of last time was that it was off white. You could believe that there weren’t any red cells present as the consultant had said himself; initially my marrow was "packed" with CLL.
I had to wait a few weeks for the results and in the meantime I continued with weekly transfusions. The first week I only had one bag as my haemoglobin level was quite reasonable however after one week I found it had dropped off at quite an alarming rate. I then moved onto having two bags for a couple of weeks and what I noticed throughout the second half of November was that the rate of drop-off actually started to decrease; I took that as a positive sign that my marrow was recovering.
Consultation this month was actually a case of good news and bad news. The good news was that whereas my marrow had been “packed” wither cancer, the CLL now only accounted for 30% of the content of my marrow. Unfortunately, and this is the bad news, there were no signs that my marrow was producing any red blood cells, a condition known as pure red cell aplasia (PRCA).
PRCA is described as a rare condition with no obvious cause but nevertheless treatable. The consultant wasn’t sure if it was the CLL that had caused the problem and, as a change of treatment may be required, is consulting with the necessary experts elsewhere within the NHS. He made it clear that weekly transfusions would need to continue and is now concerned that my iron levels have to be carefully managed as a consequence. All in all a bit of a bummer and as I got this news at the same time as I was being messed about with my dressage videoing (reported elsewhere) you can appreciate I wasn’t having a good week.
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They feed me well
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So what next? What are the positives? Happily I still feel well and while I realise it is the transfusions keeping me going (to all donors - thank you very much) I still seem to see people in a lot worse state than me on the unit. My nurse specialist told me the 30% figure is good news and is looking to see if I can receive my iron treatment in tablet form rather than via subcutaneous infusion (12 hours a day 3 days a week). The tablets are more expensive but there is a shortage of drug pumps at present for the infusion treatment. There are risks from the treatment and there are risks from having too much iron in your body so this all needs careful consideration and management.
Initially I had thought that my body needed more iron and so I'd put myself on a course of Guinness. I'm going to have to rein back on this now given the news.
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For medicinal purposes only
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Of course this is all going on in a time of COVID. I still can’t help thinking that my body was coping until I had my first jab in February 2021 and I can’t help thinking that my HB took a tumble in early November when I had my third primary and flu jabs. These, together with my CLL treatment, are very clever drugs targeting different aspects of the immune system. We cannot be sure that they will all work sympathetically together in all circumstances. While I understand that testing has been carried out we mustn't forget that the Grenfell Tower cladding had been tested as well.
I wonder if it is time to stop all the drugs for a period and let things settle down and let my body rebaseline itself. I can perfectly understand why a young healthy person would choose not to have the vaccine if they can avoid it. It's all about balancing risks and as yet we do not know what the long term effects of the vaccine will be.
That's basically where we are. But I'm keeping positive - I don't really have any other choice. Hopefully my new camera will turn up at some point and another thing that has kept me amused has been The Beatles "Get Back" videos on YouTube. I'm assuming it will become available on iTunes or as a DVD Box Set in the future and then I'll really be able to immerse myself in some serious nostalgia.
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All I need now is the camera?
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Until I hear more news all I can do is thank everyone for your support this year and wish you a Merry Christmas.
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My guardians
©Harveywetdog |
PS As you'll note from above I’ve now had my third primary COVID vaccination and my flu vaccination so thanks to my Doctors’ practice in Newent for arranging this.
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