weekly transfusions going on 4 months

Hi everyone, I'm new to the community. My husband has CLL, just out of a 4 year remission post-FCR. His hemoglobin dropped in January to 8.5, has gone as low as 6.4 (for which he was hospitalized). He got 2 rounds of B+R, which shrunk his nodes right away but hgb remains hovering between 7-8, requiring weekly transfusions. The doctor switched him to ibrutinib which he started 2 weeks ago. He has also received weekly Procrit injections for the last month. Hgb hasn't budged yet. Based on the BMB results, the doctor doesn't believe this is aplasia and all other blood counts are now in the normal range. Labs don't indicate AIHA. We are stumped and frustrated and worried. I am counting on the ibrutinib to work its magic and clear out the bone marrow but I understand it doesn't necessarily happen right away? 

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  • I should add, he's 50 and in otherwise great health. He's still working, still practicing with his band, and even going to cooking school once a week. No side effects at all yet from ibrutinib. We met with a transplant specialist in March, he said transplant is one possible option but to see how we do on ibrutinib and hopefully we won't need to revisit the transplant discussion for a while. His oncologist is not a CLL expert and I'm starting to lose faith in him. We are lucky in that we live in NYC and I know there are a few great experts right here. His insurance so far has covered everything but is a nuisance (needs a referral for EVERY onc appt, which have been weekly since January) so the thought of switching doctors is stressful but we have to do what's best. It's just been an exhausting 4 months after a very smooth 4 years and I'm hoping we can soon get back to "normal."

  • Hopefully the Ibrutinib will get the job done. Best of luck 

  • Thank you, best of luck to you too. 

  • Welcome to the site Cathrun,vwhich also extends to your husband. I am sorry I'm do not know enough to help with your worry but hopefully the ibrutinib over the coming weeks will help to sort things out for you both.

    Enjoy your weekend and best wishes.

    Sue

  • Thank you, Sue. Hope you have a nice weekend too. 

  • Welcome Cathrun- I was in a similar situation.   I started to see improved blood levels at 3-4 weeks and no longer required transfusions.   At 3 months on ibrutinib was at low normal levels - it just got better from there.  I've been taking it for 16 months - and feel great.  My best to you both.

  • Thank you Ikubik, this is very encouraging news. I hope you continue to feel great!

  • Hi Cathrun, I was high risk at diagnosis (at 47) and I live in Philadelphia. My suburban dr. referred me right away to a CLL specialist. While I understand dealing with the insurance is a pain, you are very lucky to live in NYC where there are top drs who probably have access to solutions beyond ibrutinib. I am unmarried and without a primary advocate like you are for your husband, but my friends urged me to find the best doctor I could, which I did. If your very young husband relapsed and is having these issues, it seems like it's time for a CLL specialist. It costs the same co-pay and having seen my local doctor, a CLL specialist and a world known CLL specialist, there is a difference. Just a thought. Hope he feels better.

  • Hi Cathrun ,

    Further to thompsonellen's reply, the difference in life expectancy from seeing a CLL specialist works out around 2 years longer survival, according to a 2011 Mayo Clinic assessment of CLL patients: updates.clltopics.org/3888-...

    With your husband already on Ibrutinib, he may already be on treatment that would be recommended by a CLL specialist for someone in his condition and hopefully his anaemia responds soon.  If not, the cause of your husband's anaemia is likely to be resolved more promptly by a CLL specialist.

    Neil

  • Thank you so much for sharing your experience. We will go forward with looking for a CLL specialist and lucky to have more than one right here in New York. I guess it's been hard for me to admit that we are on a much more challenging path and so we can't just make do anymore with the general hematologist/onc. I see now that he is in a little bit over his head, which has been quite an unnerving realization. Thanks again. Best wishes to you.

  • Just an update, my husband's Hgb jumped from 7.4 to 9 at this week's onc visit (the highest it has been since January). Now he is 2 weeks transfusion-free, and we are feeling much more hopeful about his response to the Ibrutinib. Thanks again to everyone who responded. 

  • That's wonderful! Tell him to keep up the good work!

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