Birthdays and IRBs
Six years ago today I had my stem cells re-infused two days after high dose melphlan chemotherapy was administered to me. This high dose treatment which destroyed my immune system was suppose to get rid of my myeloma too. Well things didn't turn out as we all hoped they would. One hundred days post transplant my cancer markers were exactly the same as they were pre-transplant. I achieved STABLE disease I was not in remission.
I was devastated. I thought I failed or did something wrong. Others who had transplants around the same time I had mine were being congratulated on achieving CR's (complete remissions). No one said anything to me. The silence was scary. I thought this meant the end of the road for me. My induction therapy stopped working after four cycles and the gold standard stem cell transplant failed to put me in remission of any type. My box of chocolates (what my myeloma doc calls my treatment options) was beginning to get picked over.
Luckily the next treatment protocol worked for me. In time we discovered I was a slow responder, My cancer count inched down, plateaued and then inched down again. It took me 3 1/2 years to reach my maximum response of a VGPR (very good partial remission). Most patients achieve maximum response after eight -three week cycles. During this time I learned stable is good, to be patient and most importantly everyone's myeloma is different. I learned that I can not compare myself to anyone else. We respond differently to the same treatment protocols and have different side-effects. We are unique,
It's now six years post transplant and I still have a lot of chocolates in that box. Some of those chocolates have been there since the beginning, but thanks to clinical research 4 new chocolates have been added to my box which is pretty sweet!
Today I celebrated my re-birthday in the same hospital I received my stem cell transplant. I wasn't in the hospital as a patient today, but as a non-scientific member of an IRB (Institutional Review Board) I brought cupcakes to the meeting and we celebrated my new life.
I was devastated. I thought I failed or did something wrong. Others who had transplants around the same time I had mine were being congratulated on achieving CR's (complete remissions). No one said anything to me. The silence was scary. I thought this meant the end of the road for me. My induction therapy stopped working after four cycles and the gold standard stem cell transplant failed to put me in remission of any type. My box of chocolates (what my myeloma doc calls my treatment options) was beginning to get picked over.
Luckily the next treatment protocol worked for me. In time we discovered I was a slow responder, My cancer count inched down, plateaued and then inched down again. It took me 3 1/2 years to reach my maximum response of a VGPR (very good partial remission). Most patients achieve maximum response after eight -three week cycles. During this time I learned stable is good, to be patient and most importantly everyone's myeloma is different. I learned that I can not compare myself to anyone else. We respond differently to the same treatment protocols and have different side-effects. We are unique,
It's now six years post transplant and I still have a lot of chocolates in that box. Some of those chocolates have been there since the beginning, but thanks to clinical research 4 new chocolates have been added to my box which is pretty sweet!
Today I celebrated my re-birthday in the same hospital I received my stem cell transplant. I wasn't in the hospital as a patient today, but as a non-scientific member of an IRB (Institutional Review Board) I brought cupcakes to the meeting and we celebrated my new life.
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