Anemia While on Ibrutinib

[Davidcara]

Wondering if anyone has had anemia while on ibrutinib? Not from bleeding caused by ibrutinib. But just drug related anemia, or disease related anemia without bleeding. Thanks.

[annmcgowan]

Hi do you mean low iron or ferritin?Ann

[Davidcara in reply to annmcgowan]

No, I mean low hemoglobin

[Davidcara in reply to annmcgowan]

My hemoglobin has been dropping over the last few months. MD thinks it is not from bleeding, not AHIA, will see labs again in few weeks, probably with iron levels at that time.

[AussieNeil Partner Administrator in reply to Davidcara]

It would help if you shared more information about your red blood cell test results. What has been happening with your RBC, RDW, HCT/PCV, MCH, MCHC, in the year that you've been on Ibrutinib? I had a similar experience to Len/ lankisterguy with respect to low iron stores causing anaemia. Six months after starting treatment, my RBC was the healthiest it had been in 15 years, but my haemoglobin remained stubbornly low. Questioning my clinical trial doctor about this anomalous behaviour resulted in an iron studies blood test identifying low iron stores, resulting in an iron infusion. That eventually boosted my haemoglobin to the best it's been in 15 years. The CLL induced anaemia had been hiding another problem.

Neil

[Davidcara in reply to AussieNeil]

Thanks Neil, it’s probably premature to “ worry “ about this. I’ll wait to I get all my labs back.

[annmcgowan in reply to Davidcara]

Hi having read on since my first response I think you are wise to wait until you get more blood tests in before worrying.Let us know the outcome.Good luck

Ann

[lankisterguy Volunteer]

Way back in 2011 when I was being evaluated for a clinical trial, and had severe fatigue, a blood test showed iron levels and ferritin below normal. Supplementation with ferrous sulfate for nearly one year just barely moved the results, never reaching the low normals. The docs did a colonoscopy and endoscopy looking for where I was "losing" iron. Never found any possible causes. -

While I was getting my 2nd Rituxan infusion at the start of the trial, my CLL expert doctor had a "bag" of iron added, and my levels immediately zoomed to the high normal. We have monitored it 2-3 times per year, and I usually supplement daily to stay in range. Whether I was taking Idelalisib, Ibrutinib or Venetoclax had not effect on my iron readings. -

Len

[Davidcara in reply to lankisterguy]

We will see what happens with my labs. Before starting ibrutinib, I have had about 10 iron infusions while looking for bleeding, which was eventually found in my small intestine.

[morepork]

I've been on Ibrutinib since late 2016 and although I have bleeding patches under the skin my Hb has always jogged along in the lower normal range, which I find interesting given my bone marrow biopsy in 2014 in which there was 90% infiltration of CLL cells in the marrow.

[janvog]

I have been on IMBRUVICA since over two years for CLL. My CBC since then has been "near normal", but Hgb was generally "low" 12.1 (normal 14.0=18.0) . But the May test Hgb was down to 11.6. The doctor's question: "Have you noticed any blood in your urine or feces ?" NO, I have not noticed blood. I was prescribed FOLIVANE - PLUS CAP: One daily cap of iron and b +. If this does not work, iron injections may be the next step. I am 87 and colonoscopy and other procedures are not sanctioned by NIH. Otherwise my CMP and physical condition are good. I guess at 87 the addition of "iron" may become necessary.