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Originally Posted by majorindy
Anyone been diagnosed with these two gene mutations. If yes, how long ago and your present status. My present diagnosis is MDS Low Risk but everything I read about these two mutations point to a much shorter survival time. Seems puzzling to me that they say get a blood test every three months when it appears things could change quickly.
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Hi Marjoindy,
The field of genomics is so new and rapidly changing that I don't think conclusions can be made about any specific mutation yet. It is my understanding that having a mutation doesn't mean that you will necessarily get a specific disease. It just means that you are statistically more likely to, should that gene become activated. Barb is good case in point. I am watching one of the AAMDSIF on-line courses and the treatment of care for someone in the low risk group, even with gene mutations, is to monitor counts every 1-6 months. If you would like things monitored more frequently for your own piece of mind, I am sure your doctors would honor your request. It seems like a very reasonable request to me!
Good luck, and I hope things stay stable!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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