HER2 Support Group Forums - View Single Post - Leukemia risk for breast cancer survivors small but not trivial

madubois63 · 10-10-2007, 07:27 AM

So why is it that I can't win the freaking lottery??????????

For some time now, I have been reading your posts about low platelets, growth shots and wanting to continue certain treatment plans long after you should stop. I cringe. I also don't answer everything for fear of scaring people, but I guess that's what I have to do. I have friends that don't want to stop taking anti-hormonal drugs even after the recommended 5 year treatment plan. I am not saying any of these things are bad. They saved my life and yet they almost killed me too. When is too much too much??? Cold Spring Harbor Labs (on Long Island) is working on a "DNA biopsy" that will be able to tell if you will need surgery, radiation or chemo for your specific cancer. It will be a great thing when ready, but...I personally asked one of the scientists working on the program (at the BC Victory Day at Mather Memorial Hospital 2 weeks ago) if the "biopsy" will be able to tell HOW MUCH treatment to give. This seemed to blow her mind. These scientists never thought of this question before?? In front of 1,000 people, she admitted she did not have an answer for me. I hope I changed the future. I hope she went back to her lab and is now brainstorming a solution. The chemo's that were chosen for me worked, but we just didn't know when to stop because my situation was different than anyone else's. That one more treatment literally knocked me off my feet (even though I was sitting). I crashed/passed out and needed immediate med's to get things under control. It was a double dose of carbo and taxotere. I'll never forget it, and I know that is what screwed up my DNA. My counts bottomed out, the bruises started and so did the nose bleeds. I am one of the rare people to get leukemia because of BC treatments, but the number is growing. I am also one of the very few people that survive the "cure" for secondary AML brought on by chemo. I posted a lot through it all, but I did not tell you all the really bad stuff. I do not recommend having to do what I did. I don't want anyone else to have to do it. I really don't know how I did it physically or emotionally. When I first relapsed in 2004, I inquired about a bone marrow transplant. I did not qualify. I contacted other countries. Somehow, I knew then it would be my cure, but I was shot down. I did the plan offered and continued to research a lot. I even asked my onc if I could get leukemia from all this stuff. I was told that it was so rare, I shouldn't even think about it....Now, it is all I can think about. What is my point?? Please consider every thing you do. Yes, I needed to do the surgeries, the radiation, the shots, and the chemo to survive but it only made my fight longer, harder and brought me into a different cancer world. Stay informed, stay one step ahead of this crappy disease...

Love, Maryann

10-10-2007, 07:27 AM	#2
madubois63 Senior Member Join Date: Feb 2005 Location: LI, NY Posts: 660	So why is it that I can't win the freaking lottery?????????? For some time now, I have been reading your posts about low platelets, growth shots and wanting to continue certain treatment plans long after you should stop. I cringe. I also don't answer everything for fear of scaring people, but I guess that's what I have to do. I have friends that don't want to stop taking anti-hormonal drugs even after the recommended 5 year treatment plan. I am not saying any of these things are bad. They saved my life and yet they almost killed me too. When is too much too much??? Cold Spring Harbor Labs (on Long Island) is working on a "DNA biopsy" that will be able to tell if you will need surgery, radiation or chemo for your specific cancer. It will be a great thing when ready, but...I personally asked one of the scientists working on the program (at the BC Victory Day at Mather Memorial Hospital 2 weeks ago) if the "biopsy" will be able to tell HOW MUCH treatment to give. This seemed to blow her mind. These scientists never thought of this question before?? In front of 1,000 people, she admitted she did not have an answer for me. I hope I changed the future. I hope she went back to her lab and is now brainstorming a solution. The chemo's that were chosen for me worked, but we just didn't know when to stop because my situation was different than anyone else's. That one more treatment literally knocked me off my feet (even though I was sitting). I crashed/passed out and needed immediate med's to get things under control. It was a double dose of carbo and taxotere. I'll never forget it, and I know that is what screwed up my DNA. My counts bottomed out, the bruises started and so did the nose bleeds. I am one of the rare people to get leukemia because of BC treatments, but the number is growing. I am also one of the very few people that survive the "cure" for secondary AML brought on by chemo. I posted a lot through it all, but I did not tell you all the really bad stuff. I do not recommend having to do what I did. I don't want anyone else to have to do it. I really don't know how I did it physically or emotionally. When I first relapsed in 2004, I inquired about a bone marrow transplant. I did not qualify. I contacted other countries. Somehow, I knew then it would be my cure, but I was shot down. I did the plan offered and continued to research a lot. I even asked my onc if I could get leukemia from all this stuff. I was told that it was so rare, I shouldn't even think about it....Now, it is all I can think about. What is my point?? Please consider every thing you do. Yes, I needed to do the surgeries, the radiation, the shots, and the chemo to survive but it only made my fight longer, harder and brought me into a different cancer world. Stay informed, stay one step ahead of this crappy disease... Love, Maryann