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Confused about MDS ?

Tagged: MDS

This topic has 5 replies, 4 voices, and was last updated 6 years, 2 months ago by emily59.

Viewing 6 posts - 1 through 6 (of 6 total)

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February 4, 2018 at 3:11 pm #35711

haider ali
Participant

hi
I hope all of you will be healthy and happy, May God bless you
I am Ali, I am a bit confused about MDS.My father got a bone marrow biopsy done and it concluded that there was suggestion of Myelodysplastic syndrome and we were told to get his cytogenetics done to find out the deletion
upon doing so and receiving the results, it revealed that there was no deletion in 5q,7q and other genes too
It only revealed megaloblastic anaemia
I am now confused that what are we supposed to do next?
can anybody help out?

February 6, 2018 at 9:45 am #35719

mdsfound
Moderator

Thank you for your sharing information regarding your father’s health. I know this is a difficult situation for you and I would recommend that you take your father to one of our Centers of Excellence in MDS for a second opinion. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this information helps. If we can be of any further assistance, please do not hesitate us at patientliaison@mds-foundation.org.

February 6, 2018 at 10:50 am #35723

emily59
Participant

I have MDS-2 with no chromosomal abnormalities. I’m recently diagnosed and being seen at one of the Centers for Excellence. Good luck to you and your father.

February 6, 2018 at 10:54 am #35724

haider ali
Participant

Thanks emily for your concern
Can you tell me a bit more about what to expect and what management are you taking regarding this ?

February 6, 2018 at 8:35 pm #35728

Rich
Participant

I’m in the same boat..I posted earlier in the week and I can’t find answers.

February 7, 2018 at 8:34 am #35737

emily59
Participant

Haider – You need to look at the link posted by the moderator which shows US states and international locations that specialize in MDS. Ask your local doctor for a referral to the nearest one. Local doctor SHOULD get you an appointment and send your slides and all related info. You will go to appointment at the great hospital. They will look over the date and tell you a good treatment plan. I’m not medical so I don’t know if you (or your dad…I can’t recall) would be in a “wait and watch” category, or might need some form of chemo, or what. That’s the doctors are for. Good luck.
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