need your help to learn about Clonal Hematopoiesis.

[sunsetssr]

Greetings.Diagnosis with CLL/ Lymphoma in 2013, Was on Watchful Wait for almost 10 years, then started treatment with BTKI/Brukinsa for 9 months and had to stop the treatment due to the side effects, 3 months ago. Had a monthly blood tests in last 3 month while on Watchful Wait. By reviewing all the lab works this morning ,the Haemotologist mentioned that she has suspecious, i have Clonal Hematopoiesis. due to low blood counts. She wants to continue with Watchful wait and monthly bloodwork to see if this become more active. This is not a good news, may be I'm heading toward Stem Cell therapy if BTKI is not working. Wondering if anybody have a similar experience to share with me. Any guidance and advise is appreciated.Thanks

[AussieNeil Administrator]

Are you able to to share which blood counts are low or any further information? We don't have any previous posts on Clonal Hematopoiesis.

Neil

[sunsetssr in reply to AussieNeil]

Morning Neil. This is my the blood results on April4th WBC=3.2,lymphocutes=43%. Hg=12.4 Abs.Lymphocytes=1.4,platelets=62.LDH=172, My WBC, HG were much better last year before treatment but they decreased, and with 3 month breal they are not coming back.Thanks for your help

[sunsetssr in reply to AussieNeil]

I forgot to mention ANC=1.5 with normal range 1.6-7 and RDW/Red Distribution With=14.9 with normal range=12-14%. Thanks again

[AussieNeil Administrator in reply to sunsetssr]

It would help to know your lymphocyte, platelet, haemoglobin and neutrophil counts before you began treatment, as those results are rather puzzling after only 9 months on Brukinsa after nearly 10 years on watch and wait. Your lymphocyte count is very good, showing that the Brukinsa has apparently worked surprisingly well (assuming you had a reasonable CLL tumour load when you started treatment), but your platelets and neutrophils should indeed be higher. You need to be careful to reduce your risk of infection as you are bordering on stage 2 neutropenia. Your platelets aren't concerningly low, but I can appreciate why your specialist has decided "to continue with Watchful wait and monthly blood work". Please provide us with an update when you have your next blood test. Meanwhile, enjoy your treatment holiday.

Neil

[sunsetssr in reply to AussieNeil]

Thanks for your good feedback. Unfortunately I was not able to enjoy my treatment holiday. Got flu/cold for 2 weeks, and sinusitis, asthma and conjuctivitis(pink eye from G.Kids) which has continued in last 6 weeks. No antibiotic or antiviral or antihystamine has help till now. 7 visits already for the red eyes and will see a new docotor this afternoon to find a dignosis/treatment for the issue. You are right the infection risk with low WBC is a big issue. I'm on IGG self infusion/CUVITRU on a weekly basis but it appead it cannot hepl me with lack of IGA protection. Thanks for the reassurance about 9 month treatment with Brukinsa. Unfortunately high blod pressure and horrible skin rashes forced my doctor to discntinue the treatment. Hope the non-covalent BTKI in future can be a solution for some of the patients with bad side effects on second generation of BTKI.My next blood work is in May with extra test orders like vitamins, cooper and a few others. I defenetly write again to benefit from your s and the group wisdom. Thanks again.