Responding to ATG!
 

Hello,

I hope this information can help someone else out there.

I was diagnosed with AA/MDS-RCMD and received ATG/Cyclosporine/Prednisone in December of 2008. I have now been transfusion free for 6 weeks!

From what I've read and learned from my doctors, ATG can be an effective treatment for "younger" patients with hypo-MDS, MDS-RA, and MDS-RCMD who's condition appears to be immune-mediated. A couple of my doctors think my response will be short-lived (6-12 months). However, I've read an article that showed much more durable responses in the above sub-types of MDS - I think because of the overlap between this disease and Aplastic Anemia.

As a disclaimer, my doctors have had a very difficult time diagnosing my disease. I've had 5 expert opinions: 1-AA, 1-uncertain, and 3-MDS-RCMD. So, I may be a morph of the two diseases. Maybe that is why I am responding so well to the ATG. I also have sub-clinical PNH, which I've heard is good predictor for response to ATG.

Anyway, ATG may be another treatment option to discuss with your doctor if you fall into this sub-type of MDS.

Yeah!!
 

Good news!! Keep up the good work! You probably read that my transplant has been scheduled..April 10th. The testing begins for me Monday! Take care, Vera

Hi, I am the wife of a MDS patient. He was dx 3 yrs ago and they had a very difficult time dx him. He had many up to six chromsome fractures and was blood and platelet dependent. He was being evaluated for a bone marrow transplant 2/06 and during the evaluationt he MD put him on cyclosporin. His chromosomes returned to normal and he was been good until just recently. His platelets are dropping a little and they did a BM bx just last week. We are anxiously awaiting the results. He was 59 at dx. He never had blasts. I happy for you the ATG is working and just wonder if it would work for him, since the cyclosporin works alone for 3 years. Was the infusion dreadful. I have heard a lot of horror stories. Just wonder. Arlene

Hi Arlene,

I know everyone is different, but for me the ATG wasn't bad at all. I had a very high fever and chills on the first night and one day of serum sickness the day after the ATG ended (fever, abdominal pain, swelling, vomiting, diarrhea). I would get headaches during the actual infusion, but that was it. The worse part was not knowing how bad it was going to get. I must say that I felt stronger almost immediately after receiving the first dose of ATG (excluding that first night), and every subsequent day that I got it. It definitely turned a switch in me. I just hope it stays switched, as the longevity of remission can be a lot shorter for MDS than for AA.

That is encouraging that Cyclosporine alone is working for your husband. I hope the platelet drop is only temporary.