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?
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Maldenite
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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.
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 have a similar problem to the one you describe, though not as long standing. As your post if now two years old I've added my own. But if you are still online I would like to know how you are doing.
I've included a copy of my post under the title of 'Bone marrow still not producing red cells'
in reply to
Hello again,
After four rounds of anti-body therapy nearly everything is coming into normal range but my bone marrow still is not producing erythrocytes. I still need blood transfusions to maintain haemoglobin levels. I have had these for seven months now and I have iron overload.
Has anyone had experience of Exjade/iron chelation?
I'm going to have another bone marrow biopsy to discover why erythrocytes are not being produced. Does anyone have any idea of what the possible causes could be?
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? 😒
I have a similar problem to the one you describe, though not as long standing. As your post if now two years old I've added my own. But if you are still online I would like to know how you are doing.
I've included a copy of my post under the title of 'Bone marrow still not producing red cells' again,
After four rounds of anti-body therapy nearly everything is coming into normal range but my bone marrow still is not producing erythrocytes. I still need blood transfusions to maintain haemoglobin levels. I have had these for seven months now and I have iron overload.
Has anyone had experience of Exjade/iron chelation?
I'm going to have another bone marrow biopsy to discover why erythrocytes are not being produced. Does anyone have any idea of what the possible causes could be?
I asked for a 2nd opinion regarding my suppressed marrow and was prescribed weekly NeoRecormon 30,000 IU injections (i.e. EPO) from November 2015. These have transformed the frequency of transfusions from every 3 weeks to every 7-8 weeks. But I was warned the EPO effect might not last beyond 2 years.
I still have very high iron levels as measured by ferritin (around 1000).
I found Exjade effective for iron chelation but it caused severe heartburn.
I was switched to Ferroprex (Deferiprone) which is less effective than Exjade but has slightly less side effects.
Happily I am still running. I am sure that physical fitness is a key factor in keeping the CLL away.
I hope this answers some of your questions, but please come back if you need further information.
Thank you so much for your reply because I am trying to understand where my treatment is going.
I'm delighted to hear that, having had treatment in 2012/3, you are still running at the age of 76 (?). Your story gives me hope.
I am 70. I did a lot of yoga, walking and cycling until I was recommended for treatment seven months ago, but now I tire quickly. I keep active with housework and short walks.
I wrongly assumed that nearly every person with CLL needed frequent blood transfusions, but this is often not the case. Consequently, I can't always find information. So if you have time, here are a few questions:
I did have a few EPO injections to stimulate the white blood cells which had driven too low by the antibody therapy. They and the neutrophils are slowly recovering (but I'm about to have another bout of Rituxamab next week and I'm not sure that this is a good idea).
Question 1! Was EPO to stimulate the white blood cells?
Question 2! Are you producing some oxygen carrying red blood cells, erythrocytes)?
At the moment I show little or no signs (after 3/4 months of treatment) of producing reticulocytes or erythrocytes. Unless this changes I will need weekly blood transfusions until whenever........
Thank you for your comments on Exjade. Yesterday my ferritin level was around 2,400 and with the two units of erythrocyte concentrate transfusion it is probably now close to 3000. I'm collecting my Exjade tonight!
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