Hemoglobin

[shvantz]

4 months on imbruvica ...not making rb cells or hemoglobin. ..on epo's now.....terrible fatigue. ...any suggestions. ..thanks my friends

[bkoffman CLL CURE Hero]

I assume your ALC and nodes have responded to the ibrutinib and your other counts are good. If so, sounds like you need a bone marrow biopsy to see if you have MDS or a second cancer causing the low red blood cell counts. Sadly those are not uncommon in CLL. If your other counts are not good, and your nodes are not shrinking, you make be resistant, but that is rare in the absence of high risk genomics and almost unheard of in the treatment naive. You need a diagnosis as to why this is happening as much as you need EPO. Brian bkoffman.blogspot.com

[fish61]

On ibrutinib 12 months now and just figured out the fatigue is from arthritis (mild) which limits my exercise and causes my fatigue that combined with the fact that I have never been 76 before was the answer to my terrible fatigue,,,, accepting those facts and moderate exercise daily have helped.. it has not stopped the fatigue but has helped some 50%. Hope this helps. A short nap a day helps.

Also in my 3rd month my hemoglobin was 8.6 and it required 2 transfusions as I was not making red blood cells.

When I told a retired Cardiologist friend of mine , he said "Thats rediculuous ": Take 325 mg of Iron , 500 mg of Vitamin C and a product called Folbic (maybe Fobic) that contains folic acid , vit B6 and B12....needless to say my hemo went from 8.6 to 13.8 in 2 months....my RBC .is still 3.8 this also helped the fatigue.

Then my friend (cardiologist ) went on to say he only studied the heart and knew very little else, when confronted with a problem he discussed it with MD"S in other fields...oncologists are so busy with side effects of various cancer forms that once they find a solution like transfusions they stop looking .

Hope this helps . fish61

[ThreeWs]

Hi Shvantz,

So sorry to hear you are not doing well. Imbruvica usually works quite fast to make patients feel good as was the case with me and other Lab-Rats in the Phase I Clinical Trial I enrolled in in 2011.

You are hopefully in the hands of a Competent CLL Oncologist?? If not please consult with one, ASAP. Your marrow may be damaged and this needs to be assessed. Do not give up and do consider a 2nd opinion by a CLL specialist if at all possible.

WWW

[PaulaS Volunteer]

Hi Shvantz,

How are you now? Did your red blood cells and haemoglobin levels improve eventually after having Epo injections?

I have been on Imbruvica for several months but my RBC remains low and haemoglobin is not picking up. Epo injections have been suggested by my doctor but he said they had a lot of side effects so it might not be worth it...

I am tired of being so tired though, and am now thinking I might take the injections. I found your post when I did a search for Epo and would be very interested to hear how you got on.

Best wishes,

Paula