Forum Replies Created
-
AuthorPosts
-
Termara Campbell
ParticipantThank you! I just asked to join the Fight MDS Low Risk group.
ParticipantHi Ashley,
Thank you so much. I’m looking forward to hearing from you soon!
ParticipantHello Ashley,
Thank you for reaching out to me. I will definitely ask her exactly why I can’t have the BMT done besides me being low risk and if she could tell me my expectancy at the moment. I tried talking to my Oncologist I had in Tennessee but he wouldn’t tell me anything. So when we moved here to Kentucky and I started going to her my oncologist I asked her about the BMT and she no I didn’t qualify and the expert she knows in Nashville can’t help me either 😒.ParticipantHello Griffy 50,
Thank you so much for responding to post. I’m happy to hear that your doctor decided to let you go through with the BMT. What she told me was that I don’t qualify because, I’m low risk. But I also think maybe my heart condition could play a role in it as well. I will most definitely talk to her when I go back in December. And yes I’m most definitely interested in getting a second opinion. If there’s someone close to where I live.ParticipantHello. I was diagnosed with low risk MDS in 2016 at the age of 36, but I had issues with my iron levels a few years prior. I was getting shots to help boost my hemoglobin but they didn’t help very much so my old oncologist stopped it. My new oncologist now has me taking 2500mg of B12, B Complex and I’ve been having nausea problems for a month so I’m on a bland diet. I was told by new oncologist that I’m not eligible for the BMT because, I’m Lowe risk but after reading this forum I see that’s not the case. How will I know if my MDS is progressing? I’m bruising for no reason but she tells me it’s iron related and the only testing I’ve had since the prognosis is blood work and my iron IVs every 6 months. And like everyone else I read a little about it a few years ago but nothing I read was really good so I quit reading. Any suggestions, thoughts or advice are more than welcomed and appreciated. Thank you all and God bless!
ParticipantHello. I was diagnosed with low risk MDS 6 years ago. I have also learned that I have sickle cell trait anemia and that I’m n ot eligible for a bone marrow transplant. The only thing that I know about MDS is what I have read online. I would be very grateful for any assistance that I can get.
-
AuthorPosts
