The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

myeloma and mds

manti
manti CSN Member Posts: 1
edited March 2014 in Multiple Myeloma #1
Hi. My husband is a myeloma patient, diagnosed in July 2000. He had a year of heavy chemo (his doctor at the time thought he would not be eligible for a stem cell transplant because he had kidney failure due to the myeloma. However, he went to UAMS and they did a tandem transplant in 2003.
After 14 months, he is now relapsed and is in stage IIIB. They started him on a very aggressive treatment Velcade, Dexamethasone and Thalidomide.
But after just 1 cycle, his oncologist here in Maine has decided it's too hard on his body. His platelets plummeted to 6 and he was requiring blood and platelet transfusions. The MDS is the other issue--causing his counts to be very low.
Does anyone have any suggestions? We are transferring to Dana Farber in Boston and are hoping the docs there may have some ideas. I have a listening ear, if anyone wants to talk.
Like Care

Comments

  • ggold
    ggold CSN Member Posts: 3
    #2
    A recent study at Moffit in Tampa has good hope for your husband. Dr. List is leading a study with a drug called rivlamid. or sounds like it. I have been diagnosed with myelofibrosis, a relative to your husbands disease and right now I am not being treated but being watched. I suggest making some contact to Moffit. It is a test/clinical trial, but maybe there is some way he can get on it. The results so far have been stunning. Good Luck and God Bless.
    Like Care

Discussion Boards