Responding to ATG!

[Hopeful]

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.

[Vera W]

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

[Arlene]

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

[Hopeful]

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.