Hi, I am a 50 yr old white male. I was diagnosed with MDS Unclassified w del #7 in June 2007. I was told I may only live 6 to 15 months. It wasn’t until 2009 that I started having many troubles with the biggest being bone pain. Then a drop in all my counts. They wanted to do Chemo but I said no. Then in 2013 I got worse yet and again told I needed to do something or I would die. As I was so weak and could barely walk I agreed to do some chemo. This I tried for 3 months and had several hospital stays blood transfusions and was it total pain. I told the oncologist I was done with the chemo. At which time they assigned hospice to care for me. They prescribed meds to keep me out of pain and each week I got better. Now I am on Hospice pulimaltive care. and they comment each visit of their surprise of my survival.
Recently I went to the emergency room as I felt very sick and my lungs were burning I knew I had pneumonia. They did find some and they also said all my counts had dropped very low. WBC 1.2 HMG 7.9 PLT 59 which is actually my normal other than the hemaglobin being below 12. So we had a Bone Marrow Biopsy which showed a Trisomy #8 in addition to the already #7 del. I didn’t take the transfusion they offered as I wanted to see how long it would take my body to recover on its own. It has been about 3 weeks and I am still a little down but not as bad.
But my post is two fold. #1 is there anyone else with this meaning Deletion #7 and Trisomy #8?
and #2 despite what the statistics say you can survive I have thus far for 9 yrs. I did only do the chemo short time and I do credit my choice to stop it as being the reason I have survived so long. But I was wanting some input from others and does others have the severe bone pain as I with the weather playing the on off switch?? Feel free to text me. 419-552-1043 My name is Clark
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