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pooliepoo's Message Board Messages

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Lots of research coming out on using the oil to treat gbm. search 'run from the cure" and "rick simpsons oil" .. ucsf knows about this.

On Aug 05, 2013 9:32 PM SarahGrey wrote:

Hi Mary... All I can say is... Yup. Exactly... :( Sigh... Thankfully, aside from being ridiculously clingy and close to my husband, I was always a "loner" and MUCH preferred to be alone than to have any company. So, I'm doing ok in that sense... But I miss him so terribly and miss the life we had so much that it hurts to breathe... Like you, I'm just waiting... All the best, Sarah
I'm so sorry Sara . I worry about how my husband will be left alone. We met a couple in our neighborhood and the wife and I both dx gbm .im so sick of the cancer community not being able to have better answers for all us who have come here. This just sucks no way to sugar coat any of it. You are in a lot people's prayers . I'm sending love please keep an eye out for my husband
Wow seems like a stretch on the drs part with so much already going on most dementia/Alzheimer's patients I know benefit very little from aricept
At the six month mark and have reacurrance and am on avastin. Have random headaches itching from the heat here in oregon . I became allergic to temodar and now wonder what options I have to kick this crap in the you know what any thoughts ?
What is the ict and hla mean ? Any thoughts on the 121
You are an inspiration to me. You are in my prayers

opt

I am interested in vaccine trials that include avastin even if you have already started avastin. ....

I know that they are not really out there yet except that Cell Dex rinedopeimut is working on adding this trial very soon. 

For those of us who are not really interested in the chemo run around I am wanting to explore other options.

Unless someone tells me that the chemo is working but most people I run into seem to HATE it.

It is time that more and better trails need to be open than having to wait years to find out by then so many will have not made it.

This is not acceptable to!

Just read your post concerning the trial of avastin and rindopeimot .Hows it going. I'm very curious as I am now trying to evaluate options and rinedopeimut seems promising.
Can I ask how long you were on avastin. I have had three infusions and feel pretty good with only some tiedness due to getting up to early were you able to eliminate steroids that's one thing I'm working on.

I cant get in because of recurrrance but I was wonering if anyone paid oiut of pocket for it and how expensive it was.

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