From MDS to Leukemia. What Should I Expect?

By ruth

1 min read

Found out last week my MDS is now leukemia and I will need a bone marrow transplant. Can any one tell me what to expect? I'm scared to death and will need donor marrow.

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Connie Connely Contributor
Hi, Ruth. I was diagnosed with MDS in 2017. I haven't had a transplant, but I read about Nora Ephron having one in her book, Left on Tenth.
Daniel Malito Moderator
<inline-mention username="ruth" user-id="3651766"/> First off, being scared is a totally normal feeling. Cancer is overwhelming and terrifying. Just know you are NOT alone, there are so many of us here who have been through similar things and know what it's like and are pulling for you. I have had bone marrow biopsies and bone marrow extracted (although never transplanted) and I can say that yes, it is a bit painful. Fortunately you can ask if they will give you something for the pain or even put you out in some cases (although not all), which might help. There are certialny some side effects to think about like graft vs host, etc. but in my experience while you can familiarize yourself with the possibilities, it's best not to dwell on them unless you develop one of the complications and then you can deal with it. Stress plays a very big part in cancer treatment and there's no reason to push yours up unnecessarily. That being said, I know how scary it is even to hear the word "cancer," much less, "bone marrow transplant," and "myelodysplastic syndromes." They are long, wordy, terrifying things to hear and you immediately take to Google to look them up and suddenly the firehose of misery, as I call it, is full on streaming into your face. I would recommend not spending too much time online Googling things. Once you have the basic facts it can only go downhill from there. Just know we will be here if you have any questions or just need friendly "faces" to hear you and to chat. Keep us updated as to what's happening and feel free to post any time you need support. You can also visit our Facebook pages if you prefer here: <a href='https://www.facebook.com/BloodCancerDotCom/' target='_blank' rel='noopener noreferrer ugc'>https://www.facebook.com/BloodCancerDotCom/</a> They are active and you can frequently find users to exchange info with. Above all else just know that what you are going through is real, and it is scary, but many of us have done it before and made it through to the other side! Keep on keepin 'on, DPM
1. ruth Member
 <inline-mention username="Daniel Malito" user-id="3641972"/> Ty you for your encouraging words I've had 3 bone marrow biopsy my 4th is may 8th then I find out when my transplant will be 
2. Angie Netterville Moderator & Contributor
 <inline-mention username="ruth" user-id="3651766"/> it sounds like you're already a pro at this, though I'm sure you''d rather not be. I haven't personally needed a transplant, so I can't speak on what to expect. But I do want you to know you are supported. Please keep us posted on how things go with your 4th biopsy and your upcoming transplant. Wishing you the best! Angie (Team Member)
Angie Netterville Moderator & Contributor
I found this forum discussion that might help. <a href='https://blood-cancer.com/forums/bone-marrow-transplant-1' target='_blank'>https://blood-cancer.com/forums/bone-marrow-transplant-1</a>,
Angie Netterville Moderator & Contributor
And I found this article that I'm hoping will help <inline-mention username="ruth" user-id="3651766"/> <a href='https://blood-cancer.com/living/bmt-experience' target='_blank'>https://blood-cancer.com/living/bmt-experience</a>,
1. ruth Member
 <inline-mention username="Angie Netterville" user-id="6781044"/> Ty you for the articles. I just want to get it over with. I'll keep you posted
2. Angie Netterville Moderator & Contributor
 <inline-mention username="ruth" user-id="3651766"/> you are so welcome! I hope you don't have to wait too long after your next biopsy. I can imagine it would be a relief to just get to it and through it. Please reach out any time if you need support. I hope you find the links to be useful. Wishing you the best!!
ruth Member
<inline-mention username="Angie Netterville" user-id="6781044"/> They were helpful ty you for sending them
1. Angie Netterville Moderator & Contributor
 <inline-mention username="ruth" user-id="3651766"/> you're so welcome! @ @

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