[tjones]

Re: Is maintenance Revlimid the right thing right now?

by tjones on Wed Jun 12, 2013 3:44 pm

Our daughter was diagnosed with multiple myeloma in January 2012 also at the age of 32. She was given 4 rounds of Velcade & 40mg Dex. We were told she was in Complete remission then. She was to have stem cell transplant in June 2012 but Velcade gave her an irregular heartbeat so she had to wait till August after heart problem was straightened out. She was in the hospital for 17 days after an auto transplant. 3 months after transplant we were again told she was in complete remission. She gets Zometa once a month for 2 years for her bones. At this time she is on & off Revilmid maintenance. Her blood counts keep going low . When she was diagnosed she was told she was going to need 2 back to back transplants but she has responded so well they don't feel that is necessary. I question the need for Revilmid now & wish they would let her body heal. Save the Revilmid for when she needs it but I do understand what they are saying about maintenance. She goes to Thomas Jefferson University in Philadelphia, Pa. During diagnoses, chemo & transplant they have been wonderful. We love her doctor. It is hard to know what the right choice is but I think treatment has to be individualized. Good luck.

[terryl1]

Re: Is maintenance Revlimid the right thing right now?

by terryl1 on Wed Jun 12, 2013 4:03 pm

Hi Chris, I hope it all works out for you. I think it is wise of you to seek a second opinion at Dana Farber. It is world reknowned and has an actual myeloma institute. When it comes to this disease, to hell with borders. You got to do what you got to do. I am sure you would not be the first Canadian to be seen there and, perhaps, the consultation may not be too prohibitive.

I am treated at the NIH near Washington, DC. People from all over the US and world are treated there in cutting edge clinical trials for a variety of disorders. I met a Canadian woman there who travels monthly to the Clinical Center at the NIH for her treatments which apparently don't exist outside of that building. She had a rare cancer and was doing well. Others actually get short term leases for apartments near the NIH for the duration of their clinical trials. Good luck.

[JBarnes]

Re: Is maintenance Revlimid the right thing right now?

by JBarnes on Wed Jun 12, 2013 4:19 pm

Hate to hear about young people getting this ill. Bad enough that us in our 50's get it but to have someone in their 30's seems tragic. Statistics say that maintenance Revlimid will keep you in remission longer. I too question the need for maintenance but my docs encouraged me to do it for one year. They assured me that being on maintenance will not impact the ability for Revlimid to be used as a therapy when the eventual relapse occurs. Jerry.

[lys2012]

Re: Is maintenance Revlimid the right thing right now?

by lys2012 on Thu Jun 13, 2013 1:50 pm

tjones wrote:
> Our daughter was diagnosed with multiple myeloma in January 2012 also at
> the age of 32. She was given 4 rounds of Velcade & 40mg Dex. We were
> told she was in Complete remission then. She was to have stem cell
> transplant in June 2012 but Velcade gave her an irregular heartbeat so she
> had to wait till August after heart problem was straightened out. She was
> in the hospital for 17 days after an auto transplant. 3 months after
> transplant we were again told she was in complete remission. She gets
> Zometa once a month for 2 years for her bones.... We
> love her doctor. It is hard to know what the right choice is but I think
> treatment has to be individualized. Good luck.

I hope your daughter continues to have a good response and no multiple myeloma!

Aside from the Heart Issue (insert Kidney instead :/) this sound like it is written about me! I did Velcade and 40mg Dex for 5 rounds, the a round of Cyclopphosphomide. three years ago today I was in the hospital for my Auto SCT. I completed two years of bone builder Pamidronate.

I am now 35 still in CR and not on maintenence. I have some issues related to my treatment (chemo menopause, and a thyroid issue) but for the most part I feel good, and am living life comparable to most of my friend of the same age

I feel being younger does help your immune system learn to fight off cancer cells again. and with less other serious health issues, we can recover from the toxic treatments

[Dr. Jason Valent]

Re: Is maintenance Revlimid the right thing right now?

by Dr. Jason Valent on Thu Jun 13, 2013 2:38 pm

Seems to be that you are getting your best response from Revlimid. It could be continued as a single agent or combined with dexamethasone to try and deepen the response you have further. There will be more side effects with the addition of dexamethasone though. In this setting, I generally use the Revlimid indefinitely until disease progression.