← Return to Mayo Clinic Connect brings together 2 women with leukemia, 46 years apart
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Mayo Clinic Connect brings together 2 women with leukemia, 46 years apart Jun 30 11:19am | By Nicole Ferrara (@nicoleferrara)Comment receiving replies
Replies to "My husband was just diagnosed with Mylodesplasia and has as yet to undergo his first blood..."
will be praying for your husband you and family.
Hi @kathy115 I just wanted to pop in this morning to see how your husband and you, are doing. Has he required a blood transfusion yet? Have you learned any more from his hematologist/oncologist?
Hi @kathy115 I’m so sorry for the delay in responding to you! I was on the road this weekend and away from my computer.
Let me help you and your husband out with his new diagnosis. I know from experience something out of the blue like this clips you off at the knees and you want to know everything you can about the situation. I’m with you, knowledge is power. But there’s also a danger in looking too far ahead and worrying about what ifs. Your husband is at the very beginning of his journey myelodysplastic syndrome. There are several subtypes of this disorder which will dictate the treatment he’ll need.
I want to get you started with some informational reading from our Mayo Website. It explains a bit more of the disease, diagnosis and treatment. With your research you may have already come across this: https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
In our Connect forum there are some active discussions regarding MDS. I’ve posted a couple of them here for you. The conversations are listed in chronological order with the oldest first. There is a box in the discussion heading where you can reverse the order to newest to oldest.
I have 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
https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
This is also a very good source of information with a little video from Dr Al-Kali, a specialist at Mayo in MDS. https://connect.mayoclinic.org/blog/hematology/newsfeed-post/myelodysplastic-syndromes-treatment-past-present-and-goals-for-the-future/
Regarding the potential for a bone marrow transplant: To find out if your husband’s kids are possible donors it’s a simple initial test of a mouth swab to see if they match.
https://bethematch.org/
Be The Match foundation has kits available but your husband hasn’t been tested for DNA for a transplant so I’m not sure the protocol for matching at this point. He can ask his hematologist. However, if he’ll require a transplant, all of that will be decided at the time. It’s fairly quickly discerned if his children will be potential donors or not.
Thank you for your positive thoughts on the story about Sky and myself. It’s been quite a journey for both of us, but it shows you that there is always hope! I want to help you find that too. ☺️
Do you have any specific questions for me?