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FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?
Sarcoma | Last Active: Apr 4 11:10am | Replies (24)Comment receiving replies
Thank you so much for this advice. I did have the extra gene work done and it is the 17;22 translocation. I have spoken with my hematologist who is also an oncologist. It was very insightful. We did talk about gleevec. I think that will be my main option. I can't have extensive surgery because I have Factor V Leiden. Extensive radiation would be too debilitating for me as I do have to run this household and property. My husband just recently had cancer surgery and will start radiation in a few weeks. He is 77 and a bit frail, so I will wait until weeks after he finishes his radiation therapy before I start anything for me.
Again, Thank you for the information.
Susan
Replies to "Thank you so much for this advice. I did have the extra gene work done and..."
Hi, I am in a similar situation where the notion of 7 weeks of daily radiation feels like it might be worse than the actual curative effect. I have a chronic condition called ME/CFS and the last time I exerted myself that much, I was left bedbound for 5 years.
When you spoke to your hematologist/onc., how aware were they of your situation, and was it you or them who brought up gleevec?
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Wish you well. Most people do have time to stop and plan without issue.
The other suggestion, is to keep an eye on the Clinical Trials.Gov website, as from time to time new research is undertaken. I have not looked at this site for some time, so I cannot say if there is anything running at present. However, solid tumour research is going on somewhere in the world all the time and options may arise.
Also, the manufacturers of Gleevec also offer programs to some categories of Patient assisting with cost. This may be regionally limited and not available in some countries. Look for Novartis Patient Assistance Foundation.