thanks very much for sharing your experience, and also for getting a conversation going on HCL. Really sorry to hear of your bad luck in being hit by two leukaemias at once – I really hope things start getting better for you.
Here’s my experience of HCL, in case it’s of use to others.
I had a first round of five daily cladribine injections in June 2020. 10 days later, my temperature began rising above 38°. Acting on the advice given at the end of the treatment, I went straight to A&E, was diagnosed with neutropenic fever, and was on antibiotic intravenous drip feed within 30 minutes of arrival. It was all very calm, efficient and reassuring. It was followed by five days in an isolation ward continuing the treatment. After which my neutrophil counts recovered very quickly, and I was soon back to normal.
Six months later my overall blood counts were also back to normal, except lymphocytes, at 600 - a consequence, as I understand it, of the cladribine, not the HCL. On the HCL, a bone marrow biopsy showed a residue of 10 – 20% left. So, that meant a second round of treatment in June 2021, this time five days of cladribine, + 8 weekly treatments with rituximab. It went very well, minimal discomfort. No neutropenic fever.
The most recent bone marrow biopsy shows residual HCL down to less than 3%, so no further treatment recommended. But lymphocytes below 600. A T-cell subset analysis shows CD4 count of 180 and CD8 count of 120.
I’ve been very fortunate with the HCL. But my lymphocyte count has remained low throughout the period, so I take regular doses of antibiotics and antivirals. The consultant has not been able to give any clear indication of how long recovery of lymphocyte levels will take, or indeed whether they will recover. And it seems there is no action that can be taken to aid recovery.
This of course leaves the question of covid. My partner and I remain in “lockdown”, as there seems to be no clear information on how far the current vaccines provide protection for people with my form of immunosuppression.
Finally, a quick word of thanks to Blood Cancer UK, who are doing so much for our community.