Mutations

[JoAnn Fontana]

My husband had a bone mattie biopsy on Dec. 13. We seen the Dr.
on December 19. He was diagnosed at that day with MDS EB 1. He had 9% blast then. We do
not go back until January 9 th. All I keep hearing about from others are what mutations they have. The dr. did say it takes awhile to get back but how long? I can’t handle not knowing.

[Joe Catalano]

I was diagnosed with MDS in June 2021. Went to Sloane Kettering and they did a bone marrow biopsy. The doctor said it would take at least 2 to 3 weeks so that I would not be impatient and it did take that long. The specimen of the bone marrow must be examined by several people for several Diagnosesof it. waiting for results is a difficult process but the only thing you can be is patient.

[Amy Clark]

Hi! I am sorry to hear of his dx. My husband’s mutation results took two-ish weeks, but it may be longer for you b/c of the holidays. The hospital/lab will post them to your chart. We saw my husband’s mutations before the doctor called us about them.

If you are not at a center of excellence (COE) for MDS, I would make getting to one a top priority. This organization, The MDS Foundation can assist you in getting in quickly.

In our case the second bone marrow reading at the COR was redone and his blast count went down by 4 points. Reading the bone marrow and counting the blasts is an “art” as well as a science. As our new oncologist at the COE later told us, a blast reading of 8 can be 6 or 10, but not 2.

Hope that helps! Prayers to you!

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