Low Hemoglobin

[Davidcara]

Wondering if anyone runs a low hemoglobin level ( without bleeding or low iron ) while on ibrutinib or other BTKs ? I have been running 11.7 and 11.8

Thanks

[lankisterguy Volunteer]

Hi Davidcara,-

I have had low Hg & Hct multiple times in my CLL journey. The really low points were just before starting treatment in 2010 (10.3) , 2012 (10.9) and 2016 (11.3). I took Idelalisb 2012 to early 2015 and Ibrutinib in late 2015, but did not see low Hg or Hct on those treatments. I've had minor dips since 2016 (12.1 & 12.4) those were during Venetoclax treatment.

-

Len

[CADreamer]

I have been taking Acalabrutinib for 1 year and my Hemoglobin went from a low of 10.8 to a high of 14.1 in 5 months. However, Hemoglobin dropped to 12.3 five months later. My theory is this happened due to COVID Vaccine which I received 1st dose 3 weeks before blood test. Very interested to see next result which is scheduled for August. I feel great with no side effects but a bit concerned about Hemoglobin. Can you tell us how long you have been taking Ibrutinib?

[AussieNeil Administrator in reply to CADreamer]

May I suggest you get your iron stores, B12 and folate checked before making assumptions? An internal bleed could also be responsible. My red blood cells got to their best count in 15 years during treatment, but my haemoglobin recovery stalled until it was found I needed an iron infusion.

[2016miniman]

Hi...I have a hard maintaining above 9.3 while getting treated by any of the CLL Treatment Drugs. My anemia that results from this situation is a constant battle to get past some days. Good luck!

[janvog]

My Hgb was usually about 12+. But in May it sank to 11.6 . They prescribed Folivane PlusCap. One per day. Now a month later it had gone up to 14.6. I was told to stop the Folivane until they get results of a special test. I am now waiting for the message how to continue. I have not noticed any bleeding in the urine or fecal bleeding. I am on Imbruvica since almost 3 years and doing well otherwise. My only chronic CLL issue is allergic rhinitis.