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Carole Storm


NY state

1940 / Class of '05 / Bone lesions, fracture / Chemo, Revlimid+Dex / Updated: 9/07

My mother, Carole, was born in Kane, Pennsylvania in 1940. She grew up in the neighboring city of Johnsonburg where there was a big paper mill. The smell of the mill permeated the town. She worked as an RN most of her life and lived her adult life in Western New York. (I always thought she used far too much hairspray and some of my research has shown that beauticians may have a higher incidence of Multiple Myeloma.)

In the summer of 2005, at 65 years old, she began having severe hip pain and some rib pain. The doctors did not diagnose Multiple Myeloma right away because she has Lambda Light Chain which can only be seen with a 24 hour urine test. At the time of diagnosis her bone marrow biopsy showed 80% cancer cells. A skeletal survey showed multiple lytic lesions in the arms, legs, back, jaw, skull, ribs, hips. The pain in the hip was actually a fractured femur which was pushing the broken leg bone up into the hip joint. She underwent rod placement surgery for the fracture followed by extensive in- patient rehabilitation.

While all this was going on she also started her first cancer chemotherapy treatment which was a clinical study phase IV using Velcade and Doxil. We agreed to this clinical study because it had already been tried in phases I through III and appeard successful. She had very little side effects. She was the only patient out of 5 who was able to complete this treatment due to severe side effects in the other patients. This treatment worked for only a partial remission. The cancer had diminished but was still present. While the cancer counts were low, she then underwent an autologous ( her own blood) stem cell transplant in the summer of 2006. This also worked for only partial remission. The physician asked if we would enter another clinical study which involved one group who would receive the new drug Revlimid directly following the stem cell and another group who would receive a placebo following stem cell. The patient would not know which he was receiving. I realize that this study may benefit society as a whole, but at this point I had to focus on my mother's direct well being and chose not to participate in this placebo study. My thought was that if they though the Revlimid would help her, why not just give it to her? I also knew that this new drug was successful and wanted to keep it in case we needed it later. (Multiple Myeloma builds resistance to each and every drug eventually and most drugs therefore cannot be used more than once.)

It is now the summer of 2007 and the Multiple Myeloma is growing quickly. We had hoped that she might have had a longer remission following the stem cell. I have read that some people have 5 years or more before they need treatment again. She is having hip pain in the same area and is very tired and weak. (Hemoglobin is 9.4, protein in 24 hour urine is 988.) We are now beginning the new drug Lenolidomide (Revlimid) combined with Dexamethasone. This new drug has just been passed by the FDA in the summer of 2006, and has had very positive results with treatment of relapsed MM. I see there are still some late phase clinical study of this new drug in Canada, but all the studies appear to have been completed in the U.S.

We are very private people, but I am submitting this because your stories helped me so much in the beginning with my research for my mother and truly touched my heart. God Bless all of you, and may He give you hope for both this world and the next.

Chris Rustowicz


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