EPO Drug for CLL

I now see a lot of news about athletes using EPO drug to enhance performance.

Question is why is this not used to overcome symptoms of CLL, such as fatigue, shortness of breath, confusion, and dizziness.

[cllady01 Former Volunteer]

You might be interested in reading the side effects and dangers of EPO:

my.clevelandclinic.org/heal...

[Cllcanada Top Poster CURE Hero]

This was looked at in 2002 in CLL, didn't generate much excitement.

Get your B12 levels checked... they can effect red blood cells, etc

~chris 🇨🇦

[Hidden in reply to Cllcanada]

Didn't have Imbruvica in 2002. Maybe worth a second look?

For some living with symptoms that makes holding down a FT job extremely difficult, seems like EPO could really pay off.

[Cllcanada Top Poster CURE Hero in reply to Hidden]

Check your B12... I have monthly injections that makes a positive difference in my fatigue levels...

Perhaps you need a Coombs DAT test? You may have an autoimmune situation, AIHA is certainly seen in CLL.

en.m.wikipedia.org/wiki/Coo...

~chris 🇨🇦

[PaulaS Volunteer]

Hi SunnyDowntown,

After I started on ibutinib, my red blood cell count decreased and I became more anaemic (with the usual symptoms of breathlessness and fatigue).

After a few months, my haematologist suggested that I could have a short course of EPO injections to try and boost the production of red cells. However, he said it would be better if they increased by themselves, due to the various risks and side effects of EPO. cllady01 has given the link to an article that explains these risks very well. I decided to hold off on the EPO, and after a few more months my red blood count slowly began to improve. Now, 18 months later, It's almost within normal range.

EPO was only suggested to me because it would've been short term, with the hope that the good affects of Ibrutinib would soon kick in. (Which later they did). For people still on watch and wait, I think the risks of EPO longterm would probably weigh out any benefits.

Do check your Vit B12 and have a Coombs test, as Cllcanada has suggested. If these are OK, then maybe it's time to have the discussion with your doctors re starting treatment for your CLL.

Paula

[AussieNeil Partner Administrator]

Further to the good answers from CLLady, Chris and Paula, bear in mind that few of us fit within the typical athlete age profile or fitness and they don't have CLL infiltrated bone marrows. Taking EPO is just going to force the remaining functional bone marrow to work harder and hide one of the recognised symptoms that indicate treatment is required (haemoglobin dropping below 10 or 100 depending on your lab).

Neil

[MsLockYourPosts Passed Volunteer]

Rules for prescribing EPO were changed several years ago for those with CLL because of the dangers, and are very strict in the US.

[Big_Dee]

Hello SunnyDowntown

I suspect because your kidneys are already telling your bone morrow to produce red blood cells, but it is having trouble doing the job.