Second biopsy confirmed MDS

[carrieridge]

Hello everyone - I posted a few weeks ago regarding my husband (51 yrs old). who is a lymphoma survivor with a long history of treatment, including an auto-sct in 2008 (no radiation though). Has been on revelimid and rituxin for almost a year and a half for DLBCL - removed him because of low platlet count (all other counts were low too, but not terribly so) His platlets were 16. Anyway they gave him a transfusion and he's been holding pretty steady at 26 to 31 for the past 3 months (he's been off all treatment during that time) did a bm biopsy, but failed to get "spictules", showed no lymphoma, but he had gained a chromosome, number 8. Went to specialist (Dr. Paquette), who said didn't think he had treatment related MDS and that treatment doesn't cause Trisomy 8 - left feeling confused. Dr. Paquette preformed the second biopsy himself and my husband was ultimately diagnosed with MDS/RCMD. Treatment is an allogenic transplant using his brother who thankfully is a 10/10 match. We have started the pre-stuff, i.e. pulmonary function test, etc. His IGG numbers are really low, so he needs IVIG also. He's had a low grade fever since Sunday, 100.4. He did have a lung infection 2 weeks ago and took zpac. Not sure what's going on if I should contact his oncologist or what?

anyway I was wondering if there's anyone on the board that has treatment related MDS? and if it's the same as denovo or harder to treat?

thanks for any insight you all may have.

Carrie, wife to Mike (51)

[Neil Cuadra]

Carrie & Mike,

You're in great hands with Dr. Paquette. He's seen it all, knows how to weigh all the factors, and is always up on the latest research.

My wife's MDS was de novo. Although the statistics show that secondary MDS patients have poorer outcomes, on average, individual patients of either type may respond well to treatment or be cured with transplants.

Having a sibling match is certainly a huge plus for Mike.

The details of the pre-transplant and post-transplant regimens depend on your current health condition more than on your medical history. Research has produced major and minor improvements in transplant care every year, which has reduced the time spent in the hospital and increased recovery and success rates, and that should give you confidence too.