So here I am 3 weeks after my cladribine subcutaneous chemo finished. Am having weekly blood tests, had a phone chat with my haematologist this morning who is happy the way my platelets and neutrophiles are recovering - plats up to 138 and neuts 0.6, both doubled from a week ago.
The main problem is I'm anaemic, haemoglobin down to 90, if it keeps falling I'd need a 2nd transfusion, but the doc reckons it will start to rise naturally soon. Anyway, that's why I get breathless if I over-exert myself, not that I'm exerting myself much lately, just a few country walks of a mile or two - great on the flat, but struggle on even slight hills.
Of course I need to be careful for at least the next couple of months - no shops, no crowds, no gardening, wash my hands regularly and watch out for any signs of fever like a raised temperature.
Cheers, Frank
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frankmok
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Sorry to hear that you’re having to have treatment again. I had chemo for HCL in 2009 and 2011, and your posts (on a different site) were so helpful to me at the time, and I’m really grateful for that. There was always a touch of humour in your comments, and that was most welcome at a time when I was feeling so anxious. I hope you find the support you need for yourself now, and I wish you all the best!
Good hearing from you - was it so long ago you had treatment for HCL, wow. I hope you're keeping well now, I feel like I've been to Hell and Back the last 3 months - well, maybe I'm half way back now! - once I suddenly developed sepsis and also hyponatraemia (which I'd never heard of) which necessitated two separate weeks in hospital. It was dire being in a ward, impossible to relax, how the nurses put up with really awkward noisy patients I don't know - eventually the docs decided I needed isolation so had a few days in a side room on my own which was much better.
Good actually seeing my new leukaemia consultant in the flesh as opposed to telephone consultations - he gave me a bone marrow biopsy (my 5th apparently) but this one seemed by far the worst. Anyway, after that it was a fortnight at home recovering slowly from sepsis etc, then the 5 day cladribine subcutaneous jabs - and a blood transfusion (which was quite relaxing).
Where am I now? Week 4 after chemo, managing a few trips out, a one or two mile walk - and heck even had a visit to my hairdresser's this morning, first haircut since I visited her last December, so I don't look like a sheepdog anymore, or maybe I mean a woolly sheep?
Hi Frank, thanks for your update. Perhaps you are being very tough on yourself as you and your body seem to have been through a lot emotionally, physically and practically and I think we take a lot longer to replenish our batteries, than to drain them. Take care of yourself and have a few treats as well as the fresh air and a gentle stroll on the flat. Please keep posting.
Thanks for your message and advice - yes, I'm trying to be patient, not overdoing it, managing the odd short walk, and being well looked after by my daughters, though having a few days on my own in the last few weeks so they can get back on track with their own lives.
Hi Frank thanks for sharing. Great to read you are through and out the other side and your blood counts are rallying. Take it steady yes avoid the hills for the moment. The treatment hits hard and it can take time to mend, 3 weeks after the last dose you are just past your lowest.. If you have to have a further infusion of HB it will give you more energy. Downside I found was the time needed to sit in a chair for these . Had similar issues when on Fludarabine a similar purine analogue, needed transfusions for a while after but soon rallied.
I'm tempted to try doing more and more but mostly resisting the temptation and hopefully being sensible.
One thing that has surprised me is back in 2003 when I had the 4-hour cladribine drip once a week for 6 weeks, my blood levels shot up rapidly, by week 2 they were all in the normal range - haemoglobin, platelets, white cell count and neutrophiles. Yes, I keep a list of all my blood tests!
This time, on the 5-day subcutaneous cladribine jabs, they are a lot slower to recover and my haemoglobin has been declining though my consultant expects it to start rising soon,
Of course, this time I'm 72 not 55, and was recovering from sepsis and hyponatraemia when my chemo started a month ago.
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