Imbruvica and low Hemoglobin

[Kmegood]

I started on Imbruvica April 13. After some weeks needed blood transfusion 3 bags to improve my hemoglobin which was at 66. Then I felt pretty good for some weeks and lately past few days don’t feel right . Kind of unsteady after a light activity . Today had my follow up and my hematologist said I need to have a transfusion which will be tomorrow because my hemoglobin is at 79 and after the first transfusions went to 89 and doctor was happy then but in a month it dropped again . My other counts are very good compared to starting on Imbruvica. Even my neutrophils are in normal range now and white blood cells getting down to near normal also . So the problem is the hemoglobin .

Anyone out there having this problem ?

[PlanetaryKim]

Hi Kmegood. make sure your specialist checks you for possible Auto-Immune Hemolytic Anemia (AIHA). They can check with blood tests for that. That can sometimes develop in CLL patients. It's not fun having all those blood transfusions. I was there too (but in my case it was due to CLL progression, not AIHA).

Good luck to you!

[Kmegood in reply to PlanetaryKim]

Thanks for replying so quick . I will see my hematologist again in a month after the transfusion in the morning. I had lots of blood tests the past 2 months and nothing mentioned about this other than being anemic

[PlanetaryKim in reply to Kmegood]

The Coombs DAT test is a specific test that would only be run if they are looking for AIHA. So they may not have run that one yet. Good luck to you!

[Kmegood in reply to PlanetaryKim]

Thanks and I’ll make note of this on my next follow up

[Ginajetta]

I started imbruvica september 2018. Hemoglobin went to 6.5 i did NOT have any blood transfusions but received two iron IVs and an epogen shot. It took about 5 months to get up to 11 and its around 13.7... WBC still coming down slowly from 696,000. Now 214,000. Not sure if helpful but the iV iron brought up to 8 plus pretty quickly.

[Kmegood in reply to Ginajetta]

Thanks for your reply . I think you are not in Canada so the way they measure your counts are different so I really don’t understand your counts . Sorry. To me when you posted your hemoglobin was 6.5 sound to to me almost no hemoglobin when mine are 79 so your counts are measured differently than where I live .

[Miller1960 in reply to Kmegood]

Just move decimal to the right.

[Kmegood in reply to Ginajetta]

I’m happy to hear that you are doing better and your WBC went down . Good luck

[Alex15alex]

Hi

Can I tell you my story with Anaemia.

I had been a couple of years on watch and wait when I became weak and fell over,

at hospital my hg was 67. I has 3 transfusions to restore it however it dropped again in a couple of weeks, I continued to receive 2 or 3 transfusions a week for nearly a year.

It turned out I had Pure Red Cell Anaemia which a very rare condition. Once this was established a course of Cyclosporin solved the problem. I then went on to have FCR in the Flair Programme which I could not tolerate (after 2 rounds) and was then put on Ibrutinib which I have been taking for 2 years now without incident.

Hope this was of interest

Alex.

[Kmegood in reply to Alex15alex]

Hi Alex

Your story is very interesting. When I have my next follow up I will discuss about this with my hematologist. I'm having another transfusion this morning. I had 3 bags of transfusions over 2 days last month when my HG was at 66 around 4 weeks ago. My HG now is 79 was 89 after the last transfusions .

[Alex15alex in reply to Kmegood]

Hi

It is all coming back to me. I became so accustomed to it I could predict my hg level with quite a degree of accuracy.

The one week my level was ok I told the doctor I don't feel

that I need a transfusion today, prior to giving the sample.

It was an interesting time and it is quite obvious you need a

good hg level to be able to walk about.

Be interesting to find out what is causing your anaemia when the

doctors get to the bottom of it as I am sure they will.

Alex

[Kmegood in reply to Alex15alex]

Hi Alex . So far I know my bone marrow not making enough red blood . All my other counts are good . So I had 2 bags of transfusion yesterday and will see how it goes .

[cajunjeff]

As others have written, the first thought that comes to mind for me when I read about hemoglobin that low is hemolytic anemia (AIHA). I can’t imagine your doctors would not hav e tested for that by now. I do recall we another poster with the same issue where his doctor did not look for AIHA so it’s worth asking.

The Coombs test is the one for AIHA, but elevated bilirubin and falling hemoglobin are hallmarks of AIHA. Even without a bilirubin test , just yellowing of skin and eyes can be a clue.

Hemolytic anemia and ibrutinib are strange bedfellows. I am led to believe ibrutinib is helping my hemolytic anemia stay under control, but there is also evidence ibrutinib may trigger hemolytic anemia. Here is a link to an article you might wish to discuss with your doctor if hemolytic anemia is suspected:

ashpublications.org/blood/a...

[Kmegood in reply to cajunjeff]

Thanks for your reply . I will certainly ask my hematologist on my next appointment about this .

[PaulaS Volunteer]

Hi Kmegood,

Soon after starting Ibrutinib, my Hemoglobin dropped from 90 something to 80 something, and I felt terrible. (Sorry I forget the exact figures). I wasn't given a blood transfusion but would've done if it had gone much lower.

Very slowly over the next few months, it started to pick up again.

It seems that merely starting on Ibrutinib can cause drops in Hgb for some people.

As others have said above, there are other reasons for low hemoglobin so it's good to ask your doctors to check out all possible causes.

I hope you feel better after the transfusion tomorrow.

Wishing you well,

Paula

[Kmegood in reply to PaulaS]

Thank you for your reply. I’m having the 2 bags of transfusion now . I am sure I will be good after this . But the question is for how long. The Ibrutinib/Imbruvica is doing a good job but my hemoglobin is the issue now .

[DelrayDave]

When I started on ibrutinib my hemoglobin went down to where I was tranfused twice. Then it stabilized and finally recovered. I am on it now over 5 years with no further hemoglobin problems.

Good luck.

[Kmegood in reply to DelrayDave]

Thank you for telling me this . So there is hope but you are on Ibrutinib for so long . Over 5 years you said . I have no idea how long for me. I only started on it almost 2 months ago .

[Miller1960]

After a year on Ibrutinib my hemoglobin has been in good range for about two months.

Stayed at 90 almost a full year.

My platelets are the thing that's troublesome. They've been at 70 for almost a year but have recently creep up just over a 100.

I'm on 140mg of daily imbrutinib. I'm happy with my progress....slow and steady.

Good luck with your blood transfusion.

[Kmegood in reply to Miller1960]

Hi. My transfusion went well . 2 bags in just over 5 hours . I hope it lasts longer than the transfusions last month . Be well and I hope the Ibrutinib works well for you .