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Reply To: My weird and odd diagnosis (sorry if long!!)

GCS Project Home Forum Share Your Story My weird and odd diagnosis (sorry if long!!) Reply To: My weird and odd diagnosis (sorry if long!!)


Dear Kathy,
Just read your story and don’t apologize… it’s not too long!! I’m sorry to hear that you’re going through this!
I’m wondering if your brain lesion came back as carcinoma sarcoma?
I do not know but carbo/taxol may be a treatment for both cancers. I do know that it is protocol for GCS. If you read on to our stories, you may see that ifosomide has been more successful for some of us who did not respond to the carboplatin.
My suggestion to you is to make sure you have an oncologist who has experience with the GCS.
And I also recommend that you discuss having a scan after 3 months… not 6… to see if the carbo/taxol is working for you.
I do know that if the chemo works for you, it will work thought the body and hold back the cancer everywhere.
This cancer is indeed, rare, so there is not a huge amount of people on this site but I check in every week and will be glad to hear more from you.
How are you holding up on the present chemo?
Linda denne