Time to bring you up to date with my latest bout of Chronic Lymphocytic Leukaemia, which it turns out might not be Chronic Lymphocytic Leukaemia.
The last time we spoke was February when I explained that things appeared to have settled down a little. I had another consultation in March where we agreed to continue to monitor my blood test results. The main cause for concern appears to be my platelets, the level of which is gradually decreasing which is not a good thing. Ignoring the units, a normal level is generally 150 to 450, I started the year at 100 and am now down to 80. Apparently below 50 is considered medically low and below 20 is severe. As I understand it your platelets are important because in the event of an injury they stop bleeding and promote healing.
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| Patience is a NHS patient virtue |
Roll forward to May and I had my blood tested at Barnstaple (via my GP surgery) ready for my consultation in Plymouth a week later. Now you should be aware that Barnstaple NHS and Plymouth NHS exist in entirely different universes, have difficulty sharing results and certainly don't seem to understand each other. We are promised that they will be aligned via NHS My Care later in the year so fingers crossed patients don't miss out as a result.
Anyway I get the impression my consultant isn't really happy with my blood being tested at Barnstaple, because, as far as I could make out, they didn't trust the results, and planned to send me off for another blood test on the day. I'm afraid I dug my heels in and said no, I simply couldn't afford to leave the dogs alone for another hour and a half while the phlebotomists got their act together. My argument was that even if the absolute numbers were slightly different between test centres, the trend downward was obvious and indisputable.
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| AI platelets doing their job |
Slight aside here on Ferratin levels. Your ferratin level tells you how much iron you have stored in your blood and mine had been high due to the number of blood transfusions I had during my first round of treatment. According to my latest round of tests this is starting to creep up again - reason as yet unknown.
Back to platelets. There appears to be three schools of thought. The first is that my marrow is saturated with CLL such that platelet production is impeded but not haemoglobin production. (Red blood cells and platelets are produced from different stem cell lineages in the bone marrow. Sometimes, the CLL can infiltrate the marrow and displace the cells responsible for platelet production (megakaryocytes) before significantly impacting the cells that make haemoglobin.)
Alternatively, even if the bone marrow can physically produce platelets, CLL can cause the spleen to enlarge (splenomegaly). An enlarged spleen often traps and destroys healthy platelets, lowering your counts while haemoglobin levels remain normal. The last letter from my consultant to my GP states "there was no palpable liver or spleen" so I think we're ruling that out at present.
The third school of thought is my immune system might be selectively attacking my platelets (a condition called Immune Thrombocytopenia or ITP). In this scenario, platelet levels drop due to destruction, but bone marrow and haemoglobin can remain largely unaffected. This is where the conspiracy theorists step in and blame it all on the Covid-19 vaccination. I don't know, I only know the PRCA wasn't normal and there's been a lot of jigging around with my immune system in the last six years.
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| How AI imagines a bone marrow biopsy to look like |
While the "treat the symptoms" me might jump straight to ITP, unfortunately my consultant thinks we should carry out a bone marrow biopsy first, see the results and then decide on a course of treatment. This is probably sensible, except for the fact that the bone marrow biopsy, which involves skewering your marrow out with a glorified cheese trier (I kid you not), is excruciatingly painful. (The Derriford Information Leaflet tells me reassuringly that "bone marrow biopsies are not usually as uncomfortable as people expect them to be...... but cannot be guaranteed to be pain-free"!)
The biopsy, and yet another blood test to check the ferratin level at Derriford, is booked in for June - I'll keep you posted.
Luckily I've got Bicton Arena International Horse Trials to keep me occupied before then.
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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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