MDS U with del #7 and Trisomy #8

[Jeffrey T Clark]

Hello, My name is Jeff, My MDS is stated in the Header. I was wondering if any one else has this? My bone marrow is completely shutting down as all my counts are around 15 to 25% of the normal low counts. I have horrible bone pain and is totally sensitive to the weather change. I did the chemo for a few months but was in the hospital more than out so I stopped. for several months I was ok. Only recently did I start having difficulties again aside from the pain that just wont go away. They wanted me to get a bone marrow transplant however the survival rate is low for people with a complete failure so I opted out on that as well. Does any one have any input or direction?
You can find me on face book Jeff T. Clark or email me jtclark218@gmail.com or even text 419-552-1043
Thanks Jeff

[Anonymous]

Dear Jeff, Thank you for your post. I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment.

Bone pain is a symptom that many patients experience with MDS. This can be due to lack of oxygen to the muscles, an immune component to MDS much like arthritis.

Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/.

I hope this information helps.

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