Afraid my partner has mds.
 

Hello all,

I have read many of the stories here and I'm so glad I found this web site. I fear my partner of 23 years has MDS. I've just recently learned what MDS is by the unfortunate death of a retired co-worker. I hadn't even heard of this condition until news of my retired co-worker and oddly enough my partner at the same time received "low" blood counts from his hematologist/oncologist. It's too coincidental that I was "given" this information about mds the way I did, but I digress. Anyway, my partner's blood counts are low, he has fatigue, he has frequent mouth sores, his arms at the shoulder hurt, and he bruises easily. His hemo/oncologist doctor is still in the lab phase, but I know deep down my partner has MDS. I'm scared. I thought we would be together forever as two old men. I don't know what to expect. Will his health slowly deteriorate or will he be gone in a year like my retire co-worker who was diagnosed in April 2008 and just passed away yesterday. Are there foods I can give him? Greens? Liver? I guess I'm mostly scared and I don't know how long he will live or what type of death he faces? I'm sorry if that sounds so frank but I can't help thinking of those things.

Thank you so much for any information and just for being here.
- George

Hi George. Most people have never heard of MDS, but since know about MDS from your co-worker it's not a surprise that you thought of MDS when your partner started having these symptoms. You are right to be concerned over the symptoms. They could indicate aplastic anemia or MDS, but also other causes.

A proper diagnosis is critical and it sounds like his hematologist is working on just that. A bone marrow biopsy (has he had one yet?) can confirm the diagnosis of a bone marrow failure disease and in most cases can distinguish aplastic anemia from MDS.

If, as you fear, he has MDS, the prognosis isn't necessarily a quick decline. Every case is different, but MDS treatments from supportive care to chemotherapy to bone marrow and stem cell transplants are constantly improving, extending lives, preventing the transformation of MDS to leukemia, and maintaining quality of life for years. It's smart to be well-informed about both the good and bad possibilities, but try not to jump to conclusions or let pessimism overtake optimism.

Whatever the diagnosis, make sure he's treated by doctors who are experienced with the disease. For rare diseases like AA and MDS, it's critical.

Please keep us informed as you get more information, and we'll try to help you and your partner.

georges, haven't heard anything from you in awhile. Hope that your partner is doing well. May God be with you and bless you.
ann