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Relapse Treatment Questions

by BethW on Wed Jan 23, 2013 9:27 am

My husband, 49, was diagnosed in March of 2008 and was treated with Revlimid for 17 months. He had a complete response but relapsed after 3 months. He was placed back on Revlimid but did not respond so Velcade was added and we began the process for an autologous stem cell transplant. After just one round of Velcade he was suffering from severe neuropathy and with the transplant scheduled, all treatments were discontinued. He completed tandem transplants in November of 2011 and we were elated to be told he had had a complete response and would not need any maintenance therapy! At his one-year check-up with the transplant team, there was mild concern about the results of his bone marrow biopsy and we pushed up his appointment with his local oncologist. His bloodwork revealed that he was in fact relapsing and a maintenance dosage of Revlimid was prescribed. After one month of treatment, the proteins had doubled. He is scheduled to begin carfilzomib on Friday and his oncologist is encouraging us to begin the process for an allogeneic transplant.
Has anyone else been down this road? I know I haven't given specific numbers, but he has always been considered high-risk and I'm wondering if the benefits from an allo transplant are worth the considerable risks? We were certain we would get a longer remission from the auto transplants that took six months to completely recover from, although I know there are no guarantees. With Revlimid not working and Velcade off the table, are there enough options left without transplant? Should we give the carfilzomib a chance to work before making any decisions? We don't want to wait until he's too ill to have the transplant, but how do you know what's right? :?: :?:

BethW

Re: Relapse Treatment Questions

by Dr. Jason Valent on Wed Jan 23, 2013 7:40 pm

As a bit of a disclaimer, the allogeneic transplant for myeloma is still considered experimental. I would agree with starting carfilzomib and would consider addition of an alkylating agent with it (I use weekly cytoxan 500 mg either IV or oral), especially since I don't think he has had an alkylating agent before.

As a young man who presumably is in good health, I would explore the possibility of a clinical trial using allogenic transplant. That is the best chance for a somewhat durable remission. The statistics would say there is about a 20% chance of the remission. I think you already know the transplant-related risks but if not I can elaborate.

Dr. Jason Valent
Name: Jason Valent, M.D.
Beacon Medical Advisor

Re: Relapse Treatment Questions

by LibbyC on Wed Jan 23, 2013 7:55 pm

Hi Beth,

My mini allo with modified chemotherapy was the best thing that I have done in my fight with multiple myeloma. Without it my prognosis was 18 mths (chemorefractory multiple myeloma that just kept growing - my auto was a waste of time), that was in March 2011. I do have chronic GVH disease but there is no sign of the myeloma. I will be on immunosuppressors for a long time (I think for the rest of my life) and still need to be very careful. But I am here to kiss my children goodnight (my youngest turned 10 recently) and that is what reall matters to me.

I now say that I dont really have cancer anymore (although technically I probably do) I have an autoimmune disease - its just that it is somebody elses!

Good luck
Libby

LibbyC
Name: LibbyC
Who do you know with myeloma?: myself
When were you/they diagnosed?: 2009
Age at diagnosis: 43

Re: Relapse Treatment Questions

by BethW on Thu Jan 24, 2013 3:26 pm

Dr. Valent,
Thank you for your response. We will certainly look into your recommendation. We should see his nurse tomorrow when he begins treatment with carfilzomib. I am curious as to why I have never heard of this type of medication. How do you know when you are getting the best care?

We have an appointment with the BMT clinic at the Massey Cancer Center February 6th to begin the discussion of an allo transplant.

Beth

BethW

Re: Relapse Treatment Questions

by BethW on Thu Jan 24, 2013 3:31 pm

Libby,

Thanks for the input! It's very helpful to hear your experiences. We have some concerns about timing. Our oldest son is getting married in July and Bryan started a new job in August. His disability insurance doesn't kick in for a year. I wish we didn't have to think about financial issues, but we do!

Of course, we will proceed with whatever is best for his long term survival!

Thanks, Beth

BethW


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