No diagnosis for Bone Marrow Failure and other conditions too

[Alicia44]

I posted last year after my husband was diagnosed with MDS in April 07. My post was regarding remission or misdiagnosis. From April to October 07 he had bi weekly blood transfusions and then in October his RBC started coming up and he remained well and needing no transfusions until a month ago (first of August). In total he has had 6 BMBs and no definite diagnosis. The initial diagnosis of MDS 5q- done in Dallas was changed to Lymphoma (at MD Anderson) but a repeat BMB said no it was MDS but not 5q-. Given no specific type but changed to high grade. Subsequent BMB was inconclusive, next one said low grade MDS and the one he just rec'd last week didn't give the doc a clue. Through all this he has never had any treatment because they were going to try something last year when his counts returned to normal. The oncologist said that she sees no dysplasia, no blast, no sign of Lymphoma but she is clueless as to what is wrong other than hypercellular bone marrow and has no idea how to treat it. He is now having a 2 units tranfused every week. Last year was 2 units bi weekly. The oncologist can't explain why his Hemoglobin returned to normal for 9 months with no treatment. Has anyone heard of or experienced this? He is 56 and has other health problems including diabetes, Hep C and Cirrhosis of the liver due to the HEP C. He has had the HepC since serving in the military over 30 years ago. His liver though 90% cirrhosis is doing ok at this time. The doc attribute this to the fact that he doesn't drink and has always been reluctant to take any meds that affect the liver. In 2005 he took Interferon for 6 months to try and cure the HepC and had to take Procrit then because low Hemo is a side effect of the two meds he was on to try and cure the HepC . The doc says there is no connection to the bone marrow failure ?????

Right now his Hemglobin goes down to around 7 between transfusions. His platelet count is not normal but not horrible either.. around 100,000. His WBC count is low.. I think the last one was 2.1. 18 months and 6 BMBs later we really don't know anymore than we knew in April of 07 when all of this started out of the blue.

Any advice or information is very much appreciated.

[Birgitta-A]

Hi Alicia,
As far as I understand anemia is unfortunately common among patients that are treated for Hepatitis C with Interferon alfa and Ribavirin. There are many articles about this complication at the site for medical info called PubMed. Here is one abstract:
http://www.unboundmedicine.com/medli..._optimization_

Perhaps your husband has got some kind of suppression of the bone marrow as an adverse reaction to the drugs and not MDS. When his low counts has improved once he will hopefully recover again !
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload 4 days with transfusions, Neupogen 2 injections/week for white blood cells

[triumphe64]

Hep C and Procrit can cause Pure Red Cell Aplasia.

I don't know how BMBs are evaluated. All I know is they suspected me of having MDS. When the first two BMBs were considered "bad samples", the third was sent to the local medical school where PRCA was diagnosed. I have since had two more.

PRCA is "not very common". My new hematologist at the medical school has been in practice for about thirty years and tells me she has only had about a dozen cases. There are other unusual conditions. My point here is that you should go to the best doctor possible for a diagnosis. If you would tell us where you live, someone may send you in the right direction.

[Alicia44]

I am happy to tell you where we live.. not far from you actually. We are in Corsicana. My husband has never seen a hematologist just an oncologist at Dallas Oncology Consultants and MD Anderson. I would love to have the information for the hematologist that you are seeing. We had decided that we were going to try another route.. hematolgist or bone marrow specialist.
Thanks for your help!

[Robi1Knobi]

I live in Austin, after moving from Houston 3 years ago. I had many BMB's by MD Anderson docs in 6 years, but noone diagnosed me until I went to see a transplant doc in Dallas. After that, I wanted a 2nd opinion of someone who knew what they were talking about, so went to the NIH (where they study bone marrow disease) to see Dr. Neal Young. I have mild aplastic anemia. I also have a genetic mutation. My father died from liver cirrhosis and hepatitis when he was 45 and Dr. Young thinks there might be a genetic link, since my grandfather died from hepatitis and cirrhosis as well. If you can afford it, maybe you should go to the NIH too. Each of my BMB's here cost $1300 out of pocket, so airfare to the NIH will be cheaper, and they'll give him sedation, plus they know what they are doing. Good luck to you, I hope you find some answers soon, Linda