Primary Brain Sarcoma

My Dad has just been dianosed with a primary brain sarcoma which is very rare. The prognosis is grim with a life expectancy of 8-10 months without treatment and 12-14 months with treatment. Does anyone have any experience with this? If so could you please share. Thanks so much!

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I had the same diagnosis 12 months ago. They treated it the same as GBM. Every case is different but in my case I had surgery and the entire growth was removed with follow up standard radiation and Temodal (chemotheray) afterwards. SO far the cancer has not come back and am feeling preety good and leading a mostly normal life. So don't give up. Statistics are just that and every individual has their own response. I'm confident I won't be gone in the next 2 months (ie within the 14 month period) and hope for the best for your Dad

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Thanks so much Morrie3, I pray that you continue to do well. My Dad is refusing Chemo, was it really bad for you and how long did you have it? Where did you go for treatment?

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The chemo was Temodal. No real side effects. Did he have surgery? radiation? I'm from Canada so was treated in Toronto with excellent results so far. I assume you are in the USA. Which state?

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He had surgery on 11/29/2012, there was some residual tumor left on the post op MRI, he is going for a PET scan 12/17/2012 and then will begin radiation 1 hour per day 5 days a week for 6 weeks and 3 days for a total of 33 treatments. He just doesn't want to be sick for the rest of his time here, that is why he decided to forego the chemo. Maybe if I tell him that you had very few side effects he will be willing to discuss it with the sarcoma specialist. I am in Nashville TN, he is going to Vanderbilt University Medical Center. I was diagnosed with HPC a couple years ago and went to MD Anderson, I found that the care is comparable I believe, they later changed my diagnosis to smooth muscle tumor of unknown malignant potential however, he will see the same oncologist that I do because she is a sarcoma specialist.

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Well if the Chemo is Temodal most patients dont react badly to it and I recommend he take it. The Radiation will make him tired but it's the best killer of the tumour.

Good luck to him.

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Thanks Morrie3, looks they have changed the pathology to carcinosarcoma of the brain. I cannot find any information on this. Most the information I see is related to ovarian tumors etc, nothing about the brain. Does anyone have any thought or experience with this?? He is going to start radiation on 01/08. Apparently, this is a glioma w sarcoma like changes. Hopefully, more responsive than a true sarcoma.

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Well I never heard of that one but I'm not a Doctor. I dont know if that is a better diagnosis. what did the doctors say?

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