Suppressed bone marrow after FCR

Hello,

I would appreciate Community opinions on the following case.

Diagnosed with CLL in May 2010, I had 6 cycles of FCR between September 2012 and February 2013.

Since then my Hgb has required supplementing with blood transfusions every 3 weeks (so I have had 40+ transfusions of 2 or 3 units).

Iron overload from the transfusions is being fairly well treated with chelation (Exjade), but there are side effects.

There is not enough evidence from the latest bone marrow biopsy to support an MDS diagnosis.

At 74, I feel well and keep fit (running/weight training).

The hospital has been wonderful with the treatments, and regard this as an unusual (perhaps exceptional) case. The consensus medical opinion seems to be to continue the transfusion/chelation treatment.

Has anyone had experience of this length of bone marrow suppression after FCR? Is there any alternative treatment?

3 Replies

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  • I'm glad to hear that you are feeling well and are keeping fit during what must be a very anxious time for you. One of the attendees of yesterday's Australian Leukaemia Foundation CLL support teleforum is in a similar situation to you, with bone marrow that has not recovered after FCR treatment last year. Like you, the medical team for this CLL patient are hoping for an eventual recovery and maintaining support via regular blood transfusions and G-CSF injections as needed. So it is rare but not unknown. Sad to say, but this is one of the more extreme reasons that 'watch and wait' can be preferable to early treatment.

    Sorry, I can't help you with statistics on how rare this is or whether there is any alternative treatment. The only thing that I can helpfully add is that all of us should show deep appreciation for those in our wider community that regularly volunteer a donation of their blood. That hour or so of their time several times a year is keeping those of us dependent on their generosity alive, with the hope that eventually we'll be no longer be dependent on their kindness to total strangers.

    Neil

  • Thank you very much for your response, Neil.

    I can't complain - since the transfusions allow me to maintain a very active lifestyle. And I agree wholeheartedly with your comments about the debt owed to volunteer blood donors.

    The doctors seem to suggest that it is the Fludarabine in FCR that causes the bone marrow damage. They initially expected the bone marrow to recover within a couple of months. But it is now 28 months since the end of chemo with no sign of recovery.

    If someone could find a way to reduce the iron content in blood transfusions, the iron overload problem could be solved.

  • I am unfortunately in the same boat after only 2 cycles of FCR nearly 6 month ago. I am off the Ibrutinib for 6 weeks now due to severe neutropenia. I am having G-csF injections and steroids to stimulate my bone marrow- very frustrating and unpredictable living.... Where is it going? 😒

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