Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Low Risk MDS &Sickle Cell Anemia

This topic has 4 replies, 3 voices, and was last updated 6 months, 2 weeks ago by Termara Campbell.

Viewing 5 posts - 1 through 5 (of 5 total)

Author

Posts
October 15, 2023 at 5:44 pm #65977

Termara Campbell
Participant

Hello.I was diagnosed with MDS 6 years ago and a 2 years I found out that I have sickle cell anemia. Every 6 months or so I have to go get iron IVs done. My question is, what’s the survival rate for people like me that doesn’t qualify for the bone marrow transplant? I have two young boys and I would like to be around for at least another 10 years so that I can see them reach 18 and 17 years old.

October 16, 2023 at 11:18 am #65980

grifty50
Participant

Hello Termara:
I was diagnosed with low risk MDS in 2014. I had BMT in 2018. I was 61 at transplant and Penn Medicine normally does not give people my age transplants because it’s too hard to get through but my Dr saw and thought I could get through it. Since you are young i don’t know why your not a candidate for BMT. I would definitely ask your Dr WHY???? GOOD lUCK
GRIFTY

October 16, 2023 at 12:44 pm #65981

Ashley Moncrief
Moderator

Hi Termara,

Thanks so much for writing in. So sorry to hear you are going through so much. We are happy to help in any way we can. I can’t give exact numbers on life expectancy because it is different for every person and depends on a number of things including your risk level, your mutations, blood counts, etc. I would definitely talk to your doctor about why you do not qualify for a transplant and survival numbers. We can help with getting you set up for a second opinion if you are interested. Hang in there!

Ashley

October 16, 2023 at 4:43 pm #65984

Termara Campbell
Participant

Hello 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.

October 16, 2023 at 4:50 pm #65985

Termara Campbell
Participant

Hello 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 😒.
Author

Posts