[newfintexas]

Hi Lyle- Welcome to the forum. Please feel free to ask any questions. This is one place I found honest answers. My advice is find out anything and everything about your MDS. Everyone is different. My hubby was diagnosed June 29, 2012. Once he had the initial bone marrow biopsy they put him on Dicidobene (oh, I know I spelt that wrong haha), his only symptom at the time was shortness of breath. His hemoglobin was 4.2 - yup they couldn't believe he drove himself to his doctor, rushed him through emergency right away - and the rest is as they say, history.

He is 58, had a bone marrow transplant with a 10/10 match Nov 14, 2012 when the chemo treatments were not working for him. He was very lucky with very little if any, gvhd - although in hindsight we wish he had had perhaps a little more to show there was a fight going on in the marrow, but as it was we had a great 9 months, had just gotten the ok to finally head out of town for a vacation and on the day we were leaving - had everything packed to go - we got the call - to come to see his bmt doctor right away - he had a relapse (Aug 2013) and his blasts were much higher 21% which puts him in the AML category. He has been on Vidaza since and back to the multiple transfusions but is also fighting with DLI.

His donor gave so many extra stem cells that the doctor has been giving him transfusions, more each time, every two months with the last dose being the same size as a full transplant without the chemo etc that goes with the transplant. We have a biopsy coming up next week to see how things look, but from what we have seen so far, there has not been any change really since Aug so we are hoping something is going on we haven't been able to see. If no marked change, we may be looking at a second bone marrow transplant.

Ask your doctor to write down what your diagnosis is, I say that because there are things going on with your chromosomes, blast counts etc that is all so new and so easy to confuse and forget. Then get a print of all your test results as they occur, keep a diary of your treatments etc so you have it all to look back on or go back to if needed.

It's a huge stressful piece of news to get but know that we are here and like I said feel free to ask any questions you might have ok? There are many of us here that have either been where you are, or are caring for someone who is.

Don't hesitate to reach out....we all need that from time to time for sure.

Take care of you...
Laura