Husband dx with RAEB1

[Amy D]

Hi Everyone
I have been following this forum since the first part of July. My husband was diagnosed with Intermediate 1, RAEB 1 in June. He has really declined in the past couple of months. He has been hospitalized with high fevers 3 times, the first being the last day of his first Dacogen cycle. The have done a multitude of tests during each hospital admission and have never been able to find the source of the fevers. He had a port put in the week before his treatment started and at the third hospital say they discovered it might be infected and removed it. They did a culture on it , but found no infection in the port. They then put a pic line in. It was in for about 4 days, clotted and he developed an infection in his arm. We have met with a doctor to discuss a BMT. No sibling match so they are looking for a donor in the registry. We are both so scared. My fear is that if his body is rejecting everything they put in him, how is his body going to do with someone else's bone marrow or stem cells? I hope this makes sense. I am sure you all know this is a terrifying and confusing time for us. We went to the BMT doc last week and he told us his disease has progressed to Intermediate 2. Thank you for your support. There are so many inspiring stories on this forum.

[rose mcmillin]

Hi Amy, Just wanted to text and say "hi". My husband and I have been very forturnate that he has had no fevers. Its all part of the ups and downs of mds. Im sure that you are in panic mode. I recognize and hear it in your words. I just wanted you to know that you are not alone and that this mds family will help you in anyway that we can. No question is too personal or difficult to answer. My husband does seem to have sensitive skin since this all started his is related to low platelets. He has been on Vidaza for some time. Also, don't believe everything that is out there. Much of it was written before we had so many different treatments available. Try, if possible, to stay strong and positive and don't forget to also take care of yourself. Sincerely, Rose

[mausmish]

Hi Amy, Rose said everything so well I can think of little to add except that we do understand the panic--we were there not so long ago ourselves. There are a lot of ups and downs but you are among many empathetic friends here. Karen

[Amy D]

Rose and Karen - Thank you so much for your replies. It means a lot that there are so many caring folks here. I hope I don't sound too crazy! We have lived thru him having lung cancer and 3 heart attacks in the last 10 years. Thought we had it made! This has thrown us, but we are still trying to stay positive and trying to live as normally as possible. Rose, is your husband still able to work? Does the Vidaza keep him from having to get blood tx? Karen, your counts look pretty good!!! I hope for the best of all of us. Again, thanks so much for the support!

[rose mcmillin]

Hi Amy, Hope that you are doing well. Vidaza has kept my husband from having any transfusions so far. He is retired but has low energy and probably would'nt be able to work at this point. That is him though, several others have managed to keep working. The side effects from Vidaza have not been bothersome to him at all. Maybe a little more tired during treatment. Any nausea has been kept under control with meds. We feel blessed in the middle of all of this. I understand your concerns. My husband has not had cancer in the past but has had open heart surgery. It all such scarry business. I hope you feel free to ask any questions that you have. Also, if you feel over-whelmed I am always available to listen. Sincerely, Rose