Posting for a friend who started ibrutinib very recently. This is her first treatment.
"After two weeks on ibrutinib, my hemoglobin level is 7.6 so I need a transfusion. It wasn’t something I was expecting. Just wondering if you had a similar experience on ibrutinib or have needed a transfusion at any time."
I've been around the block a few times including ibrutinib, but have never had anemia issues. I appreciate all responses and will pass them along.
Thank you!
Geoff
Hi. I was anaemic before I started Ibrutinib, I think my haematologist started me on it to try and boost my haemoglobin but didn’t and I ended up collapsing in the bathroom and sustaining a compression fracture to my spine that was a year ago, I stopped taking it for a month while I recovered somewhat and I am still on it and my last 2 bloods have been perfect. So just be careful if you feel light-headed, you don’t want to collapse.
June
Hi Geoff,
Anaemia can be a side effect of starting ibrutinib.
My haemoglobin dropped into the 80s a few weeks after starting ibrutinib. (It had been in the 90s just before). It wasn't considered low enough to give me a blood transfusion, but I felt pretty rotten... It was several months before it started to rise again, and then only slowly. A year later it's still only in the 100s.
Wishing all the best to your friend,
Paula
Thanks for that Paula. My Hb is lower 80's and this could be part of reason I feel so awful.
Eagle5327
Geoff, I hope your friend soon feels better.
Sue
Sorry you feel so awful, Sue but I'm not surprised, when your Hb is lower 80s. Have they suggested you have a blood transfusion?
It would be interesting to know how doctors decide when transfusions are necessary. What criteria do they use? I don't think it's just the Hb levels, though if the Hb goes below eight I would've thought a transfusion would always be given (as happened with the friend of Eagle5327 .
Best wishes,
Paula
Hi Paula
That blood test was taken in a & e
when getting my heart checked.
I spoke to my support nurse and she said it takes more than one reading. See specialist end November, also at present seeing gp regularly who is aware of everything. I can always request to get an earlier appointment for consultant.
Thanks for asking. I will ask your question and get a reply and let you know.
Regards
Sue
I would worry about AIHA (hemolytic anemia) with hemoglobin that low, particularly if the drop in hemoglobin was steep and sudden. There are reports of ibrutinib triggering AIHA. The remedy would be to suspend ibrutinib and restart after a transfusion plus steroids.
Hemoglobin that low is quite serious and I think your friend needs to be asking these questions of her doctor for sure to see why her hemoglobin dropped.
I don't know if it is AIHA, but here is an article explaining the link between AIHA ad ibrutinib. Good luck to your friend. I had AIHA with low hemoglobin like that and its an awful feeling. Ibrutinib actually helped my AIHA recover and its back in normal range now, over 14.
Hi Geoff: I had a similar experience but it was with BR. My hemoglobin began falling quickly this spring and that was the trigger for starting my treatment. Before I started treatment the doctor said I needed a blood transfusion. I felt fine at the time but eventually I became very fatigued as my hemoglobin declined. After my first round of BR my Hemoglobin kept falling and I needed 3 more blood transfusions. The doctor explained treatment attacks good cells as well as CLL cells thus it is not uncommon to see falling hemoglobin levels at first. I assume the same may be true for Ibrutinib? My hemoglobin bottomed out st 5.3. It rebounded to 13.9 this month after my 6th and final round of BR. Please tell you friend to stay positive. Things will turn around.
Hi! My doctor started me on Ibrutinib last December because my hemoglobin steadily declined. The week after, it hit even lower, 8.0, while my white count skyrocketed - pretty scary! From then on though, it got slowly better and I was just below of the lower edge of the normal spectrum four months ago. My hematologist was surprised how fast mine recovered and says it is more common that it takes time to recover. Hopefully that is the case with your friend and they will feel better soon! Heike
Hi, Everyone!
Thank you all so much for your thoughtful, informative, and helpful replies. I have forwarded each of them to my friend who found them helpful.
She is feeling better after a transfusion and will soon have another. She has an appointment in about ten days with Dr Bruce Cheson, one of the top CLL experts in the U.S. I certain that she will get exactly the advice and treatment that she needs.
Thanks again!
Geoff
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