Fludarabine: rare side effect of destroying ability for red blood cell production in myself. But also unwell with fevers.

[Jotame]

I've had a really difficult result from my bone marrow biopsy today.

Four months ago I posted the effect of human Parvovirus on myself - in an immune-compromised person this virus can have the effect of inhibiting production of blood cells in bone marrow. Regular packed red cell transfusions have kept me going in this these months. With no improvement in this time a bone marrow biopsy now indicates that the loss of rbc production has most likely been caused by FCR (in particular Fludarabine). I completed 4 cycles in June 2018 with a good result. I understand the loss of rbc production is irreversible and I am faced with monthly transfusions for the rest of my life.

The only sign of hope here is that the regular intermittent fevers (around 2 each week for the first 5 weeks and more since) and sense of feeling very unwell at times may indicate that a virus is at work. At this point in time there don't appear to be any further tests which could be helpful. There were no positives to tests for Parvovirus, but I understand it can be difficult to test in an immune-compromised person.

The shock of this diagnosis is nearly equivalent to my initial CLL diagnosis 3 years ago.

[WinJ3]

Hi Jotame, Sorry to hear about your difficult side effects from the Fludarabine. I hope and pray for better days ahead 🙏🏽🙏🏽🙏🏽

Win

[virdieblue]

I can't imagine your journey. We have for a breakthrough by researchers.

Keep in touch

Virginia

[Jotame in reply to virdieblue]

Thank you Virginia. Can you expand on "We have for a breakthrough by researchers"? I'm not sure of your meaning.

Jo

[virdieblue in reply to Jotame]

Sorry for the mistake. It should have read we need.

[PlanetaryKim]

So sorry for what you're going through, Jotame. If there is a virus at work that is compounding your problems, I certainly hope it can be identified and treated to at least relieve you of that burden. Thinking of you!

kim

[Jm954 Administrator]

This is difficult news to hear and I'm sorry you're now facing this complication.

Lots of patients with haematological have regular blood transfusions and do well. However, with regular transfusions there is the risk of iron overload and it's important that you talk to your Dr about iron chelation if they haven't mentioned it. They will be monitoring your ferritin level which will tell them when chelation needs to start.

A bit about chelation here:

irondisorders.org/chelation...

karger.com/Article/FullText...

All the best

Jackie

[Jotame]

thanks all and thanks for the tips, Jackie. I will look into it

[Mystic75]

Jotame - I am so sorry you have to deal with this and I can only imagine how distressing it must be. It is at times like this that I am especially grateful for people like Jackie who are knowledgeable enough to offer you some direction.

Please keep us updated and in the meantime, please know you are in my thoughts and prayers.

Big hug,

D.

[Jotame in reply to Mystic75]

Thank you D. All the best to you too.

[Mystic75]

💕