[susanhahn]

Newbie - Susan from Arizona

by susanhahn on Tue May 29, 2012 12:36 pm

Hi everyone,
I just moved to Arizona in March from the Portland, Oregon area. My husband and I spent the past 6 years on an island in the Caribbean off the coast of Panama, near the Costa Rican border. It was a wonderful time and a great lifestyle, but my husband developed bladder cancer and I picked up some kind of bacterial infection from the water (don't know if it was our filtered water or sea water from unknowingtly snorkeling in a polluted area). The infection was weakening to the where I knew I needed to be hospitalized, so we came back to the states where we could get good medical care. After finding and curing the infection, my doctor suspected multiple myeloma and I had a bone marrow biopsy which confirmed it. He started me on Velcade and Dex and I completed the cycle and moved to Arizona where we could get WARM and also be treated at the Mayo Clinic. My husbands bladder cancer was treated and had not spread. Tumors were removed twice and he's now on a 3 month protocol at Mayo and doing great. In April I was told that I was in complete remission, and I'm scheduled for a stem cell transplant in June. My biggest challenge right now is to gain back some of the weight I lost as a result of the bacterial infection, and of course to get through the SCT. I'm an optimistic person and I have a good attitude that I can DO this. I'm happy to be participating in this group and hope the group can be a source of support as well.

[Ron Harvot]

Re: Newbie - Susan from Arizona

by Ron Harvot on Tue May 29, 2012 1:24 pm

Hi Susan,

I am so glad to hear that your husband is doing well and that you are in complete remission.

Since you are in complete remission on Velcade and Dex the question I would ask is why is STC needed now? There are choices. I for one have been in a CR state for 3 years without a stem Cell transplant. I am on RVD but at reduced doses and intervals from my original protocol. There are others like me, some on RVD some on just RD or VD or other combinations. One question I would ask is whether after the stem cell transplant you will have to be on maintenance therapy and if so what would you take and for how long? You have options. Stem cell transplants are not always the best solution and the carry risks. Don't be afraid to ask and challenge. With the novel agents STC is not as automatic as it once was and can be put off until first relapse. With the new novel agents in combination a less risky alternative is available, leaving STC as a fall back. I for one have never missed work, am an avid bicyclist and other than some minor side effects have a good quality of life, not been limited in any meaningful way.
Ron

[terryl1]

Re: Newbie - Susan from Arizona

by terryl1 on Tue May 29, 2012 2:51 pm

Hi Ron, I was intrigued by your post vis-a-vis SCT's. I just started a clinical trial at the NIH for newly diagnosed utilizing carfilzomib, rev. and dex.---CRd. Kevin J., the Beacon columnist is in a similar trial in Michigan. I am one cycle in and I hope I can achieve CR. I intend on having my cells harvested for the future to be safe, but have no plans for a SCT. My NIH doctor is not a big propoenet of them and believes the CRd protocol may hold back the myeloma for years. It sounds like you have good QOL. Did you harvest your stem cells in case? The thing with myeloma that gets me is the different philosophies regarding SCT's. I have read many of Berenson's opinions and they make sense. By the same token, proponets of SCT's make sense too, I guess. It is such an individual disease that it is scary making these choices. Terry

[Nancy Shamanna]

Re: Newbie - Susan from Arizona

by Nancy Shamanna on Tue May 29, 2012 5:19 pm

Hi Susan, I think you will learn a lot and enjoy reading the Beacon. There are so many topics discussed in this field and people's 'journeys' to read about too! Even though I am done with treatments, at least for now, since last year, and am also fortunate enough to have been in a CR for two years, I still like to read this online newsmagazine! Having myeloma scarred me somewhat emotionally I guess and I am still getting over it! But in the meanwhile feel that this is good online support, and a very educational journal also. One can keep up with the current medical progress here.
Best wishes for wherever your treatment takes you...it certainly doesn't hurt to ask questions and try to determine what will work the best. Sorry to hear that both you and your husband have had cancer in the last few years. That must be a lot of worry for you both, but you sound like an optimistic person who will do well!