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@kally38

Hello, I've been dealing with Low-risk MDS for over 5 years, and at almost 70, feel I'm not able to manage a donor given BMT. I'm being treated at Yale with Azacitidine after 2 years of clinical trial duo chemo pill started to fail. Before that in the beginning it was just blood transfusions, I've had a lot. I'm praying something is on the horizon to help prolong my life, at 69 almost 70 it seems young and I have 2 children just married and a new granddaughter. My biggest problem is no support system, I'm divorced and live alone. Thank you, Kerry

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Replies to "Hello, I've been dealing with Low-risk MDS for over 5 years, and at almost 70, feel..."

Hi @kally38 and welcome to Connect. You’re right, 70 is still young! I just turned 70 and no way do I feel it’s time to throw in the towel. I had a successful stem cell transplant when I was 65. It is a second chance at life and I’m having a blast! Life is a blast as long as we don’t find them in our blood, right? Bad leukemia joke! 😉

There are patients well into their 70s who have successful BMTs. I’ve mentored 2 patients in the past few years (for my local cancer center) who were 75 at the time and breezed through it. They’re still going strong! Many others have been in their late 60s, early 70s. You’re right, it is a challenge on its own and not having a support system further complicates the process. Having a caregiver is a prerequisite for the transplant process.

Another member in our forum is facing a similar situation right now. She needs a SCT but doesn’t have a dedicated caregiver. So she working this out through several friends and relatives to rotate caregiving duties. I wonder if that might be an option for you to consider?

I found some conversations in the forum of other members with MDS that may be helpful for you.

~I’ve been diagnosed and under treatment for MDS
https://connect.mayoclinic.org/discussion/i-have-been-diagnosed-and-under-treatment-for-mds-whag-are-the/

~MDS Treatments other than bone marrow transplant
https://connect.mayoclinic.org/discussion/mds-treatment-options-other-than-bone-marrow-transplant/

https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/

You mentioned the Azacitidine is no longer working. Has your hematologist oncologist suggested a new treatment option?

Thank you, it's nice to hear a success story, I've heard so many difficult ones. My fear is holding me back and my lack of a support system. I just don't have anyone past the first week. I can't be a candidate without one in place. I'll speak with the social worker to see if there are people available that I can afford, but I don't have a lot of hope for that.