Recent MDS Diagnosis

[Harold P]

My husband was recently diagnosed with MDS. We found out today from an MDS specialist at the Mayo Clinic in Rochester, MN that he has RARS, INT-1, however it is considered secondary so he is high risk due to the karotype monosomy 7 from chemo he received in 7/98 for Non Hodkin's Lymphoma. The MDS specialist is recommending a mini transplant. The doctor scheduled an appt with a bone marrow doctor & the bone marrow team next month to see if they think he is a good candidate. My husband will be 61 in May. Has anyone been diagnosed with abnormal chromose 5 & 7 secondary due to cheomo treatments? If so, please tell me what your treatment is & if you have had a transplant? Very scared about this bone marrow disease & transplant. Thanks.

Sandy

[Ruth Cuadra]

Hi, Sandy.

Welcome to Marrowforums. I hope you've had a chance to read some of the posts in the MDS and Transplants forums. As far as your husband's diagnosis, I think it is not unusual for abnormalities of chromosome 5 or 7 to show up in someone with secondary MDS following chemo for another cancer. Has his doctor talked about the possibility of trying a drug like Revlimid before proceeding to transplant? In clinical trials, Revlimid was found to be very effective in controlling MDS in patients with 5q- syndrome.

I had a transplant years ago for MDS/RA and you can read my story on this site. Keep in mind that my experience is almost 9 years old and newer technologies and drugs have improved the transplant process for many, many patients. Outcomes are better than they used to be and, particularly with mini-transplants, the process is not so hard on the patient and recoveries are quicker.

Let us know what questions you have. There are lots of folks here who can help.

Regards,
Ruth Cuadra

[Harold P]

The MDS doctor from Mayo Clinic in Rochester has recommended my husband start on Vidaza or Decitabine. We see the oncologist/hematologist here in Des Moines, IA on Tuesday, 5/8/08. She will get my husband started on one of the two drug therapies the Mayo doctor recommended.

If anyone out there has been diagnosed with a secondary MDS diagnosis I would certainly like to hear how things are going for you. Any information you could provide would be greatly appreciated.

Sincerely,
Sandy & Pete Peterson