In my town we have a group called cancer connection that will pair cancer patients with people who will help. Ask her Doctor's office if they can recommend something like this. If she has been determined to be terminal there are some great hospice programs that will keep her comfortable, we looked into that for my father. She should be on medicare without issue with the diagnosis of cancer, this will not require the age limit. Make sure you have her covered as disabled (social security) and you should be able to go far from there. There are also day time care programs in many places that should be available to you, (tell her its her new job?).Best of luck, its a hard road you are on but it will get easier, Tracy
My Goodwill
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GoingGray started following
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GoingGray asked a questionBrain and Spinal Cord Tumors in Adults
Has anyone had any experience with BKM120 and/or LDE225?
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cancervivor
almost 6 years agoI don't know anything about it myself, I had no clinicals but here is some info from trials.gov
http://clinicaltrials.gov/ct2/show/NCT01339052http://clinicaltrials.gov/ct2/results?term=lde+225&Search=Search
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chiefdixie
almost 5 years agoMy wife is just starting the program - did your mother get into the trials?
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sgallax
over 4 years agoMy wife has entered the phase III trial with LDE225 in Oct 2013. See http://clinicaltrials.gov/show/NCT01708174
We don't have at the moment any evidence of its activity. We can only say that it is well tolerated: the only side effects we are observing are mild constipation and mild fatigue.
Good luck.
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GoingGray started following
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GoingGray posted an update
Mom's being referred to Moffitt Cancer Center in Tampa due to tumor regrowth. Our physician here told her there is an experimental procedure being done for Glioblastoma that includes a type of plastic pellet which contains chemotherapy that is implanted into the tumor. Has anyone heard of something like this? I don't see anything on the Moffitt website. I didn't catch the name of the procedure but I am waiting on a call back from the doc and when I get more information I will post.
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GoingGray shared an experience
Oh No (Cancer is back/Recurred ): Mom had an MRI last week and we went in for the results today. Her tumor is growing back, and our cancer center cannot do anything more for her. She is being referred to Moffitt Cancer Center in Tampa.
