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Myeloma Stories

Elizabeth L. – Hays, Kansas

My husband Scotty and I got our blood tested on a yearly basis, I kept them and compare the results from year to year . I noticed that Scotty’s red-white cells and platelets were all changing and that he would get colds frequently and I wouldn’t and that he would get diarrhea easily if we are out! I questioned our doctors and they said he was in great shape ( he worked out all the time).

I finally insisted that he be sent to an oncologist. I gave her 10 years of Scotty’s blood tests and she said that she believed MGUS started 5 years prior. Bone marrow proved the MM and we went to Little Rock ACRC. Caught it in smoldering stage!

My husbands wonderful attitude kept him going for 12 years and passed June 30, 2013 at 74 years young. Listen to your gut and find a doctor that will listen to you. I am not a nurse but a wife that knew her husband of 49 years and did everything I could to make his life enjoyable.

– Elizabeth

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Myeloma Stories

Karen F. – Olathe, KS

I was diagnosed in May 2013, by a routine blood test run by my primary care physician. She immediately referred me to a hematologist/oncologist. That is when the world started to spin.

My primary care physician thought I had Monoclonal Gammopathy, but after visiting with the oncologist he did not feel that was the case. He immediately ordered a bone marrow biopsy, which confirmed diagnosis. I also have liver problems, no symptoms, all revealed on blood testing. A liver biopsy was ordered, which revealed I have 40{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} Multiple Myeloma involvement.

The oncologist referred me to Mayo Clinic in Rochester MN.. Mayo Clinic was very responsive and got me in immediately. They confirmed the diagnosis of Multiple Myeloma with liver involvement. They gave their recommendations and we returned to Olathe, KS.

I did not to go through treatments away from home when the treatments were going to be the same. We were also referred to Kansas Medical Center Bone Marrow Transplant unit in July of 2013. They confirmed that I was a candidate for a Stem Cell Transplant, but I needed to get the Myeloma under control. We started chemotherapy in July 2013, the first regimen recommended by Mayo Clinic did not get the Myeloma under control.

So in September 2013 I was referred to a Myeloma Specialist at Kansas Medical Center, she recommended that the chemo be changed to Rev-Vel-Dex.  We did 2 regimens of Rev-Vel-Dex and the Transplant team did not want another round of chemo done so December 2013 I went through a Stem Cell Transplant. I am not at my 100th day, so we do not know if the transplant was successful. I know that I felt I was in good health prior to transplant and the transplant really knocked me on my rear. I feel pretty good most of the time, I do not have the stamina that I did before the transplant.

I am in my mid 50’s and still have a job at this point, but that is questionable unless I can get back to work soon. I had no symptoms prior to all of this, I still have no symptoms.

There is talk of another transplant right away, and I do not want to do that, I don’t feel I am in as good a health as I was in December. Luckily, my Oncologist is not a fan of back to back transplants either. She is talking maintenance therapy and see how it goes, but we have to wait for the bone marrow biopsy, in April to see if the first transplant was successful. 

— Karen F.