To Kenneth in VA.

[plantcollector]

Do not feel that all is lost with the diagnois of MDS. Some people live a long time with this condition. Others go for years and not have any treatment at all. I did. However, I became transfusion dependent in 2009 after being first diagnosed in 2001. That’s a lot of good years between those dates. No doctor can tell you what your future is with this condition. There’s no reason why you won’t be one of the lucky ones. Since your response with Revlimid has been good so far, I consider that a very good sign. Keep up the fight and enjoy your life each day – especially the children. Keep posting about the Revlimid. I will be interested to hear how you progress on that. After being on it for a year I am finally giving up. Unfortunately, not all 5q- patients respond. Best wishes to you and your family. Sylvia

[katydid]

I am transfusion dependent already and only was diagnosed in May this year – I think it is really just a matter of how early they diagnose it – I have probably had it for years but didn’t know til my Hb count was so low I could barely walk

Cathie

[lindajo]

Kenneth, I was diagnosed on my 30th birthday. Today I made it to 19 years of survival. I am honestly healthier at 49 than I was at 30. I was transfusion dependent the first two years but they have been infrequent since then.

Get on a healthy diet and don’t forget to treat other health conditions. I still needed sinus surgery, a hysterectomy and an appendenctomy. In order to keep my MDS under control, I had to aggressively treat other health problems

Procrit did not work for me. B-12 shots every two weeks have really helped. What helped the most was watching my diet and making lifesytle choices to eliminate stress. Don’t ever think that you cannot make positive choices that will help you fight the MDS. Eat right, sleep enough and eliminate toxic habits and if necessary toxic people in your life. You do have power to fight the monster yourself. Stay positive.

[Kenneth_In_Va]

I wonder if anyone else has seen this?

Why Your DNA Isn’t Your Destiny, published in the January 18, 2010 issue of Time Magazine.

It’s a good awareness article on Epigenome work. And it mention MDS and the work being done with drugs like Dacogen and Vidaza to turn-on dormant genes like the tumor-surpressant ones targeted recently in attempts to change what signals our DNA send and applies to any blood based cancer.

[Author]

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