Need help! Aunt, muti grioblastoma, brain Tumor
by jollyburg, 1 hour ago
Hello all, I’m hoping someone can help me help my aunt get some info. My aunt who lives in Michigan was just recently diagnosed with stage 4 multi non operable brain cancer, grioblasmoma (sp?). She has four tumors at this time in the parietal lobe. We are all very devastated and as her symptoms seem to be moving rather quickly we are all feeling very overwhelmed with treatment trials and all that is out there. My aunt is a realist and knows her situation but as her biopsy was nearly a week ago and some sort of treatment can begin soon…well it’s just so much, where to go, what would be a good plan and so on. There is so much we don’t know, like (1) why the doctors had her on steroids briefly but are taking her off the steroids shortly after biopsy, won’t it reduce swelling and save some nerve damage to stay on or will it interfere with a future treatment?. (2) How can one get into studies/trials that do not involve placebos and how do we find them? (3) What do you know about the new vaccine or the new FDA approved Novo TTF cap? I have read the Israeli studies on the cap and it seems somewhat promising in preserving brain cells and a sometimes extended life span and shrinking tumors, something to use after the first hit of chemo or radiation (U.S. studies are not informative) and we have read that only forty % of cancer patients have the right makeup for the vaccine, but don’t know how to cut to the chase on this. (4) What new trails are out there? (5) If I am on the wrong site for my numerous questions is there a support forum that can offer us a little of everything mentioned above?
Lastly, we know the scoop on this type of cancer. We do not however, know what we should or shouldn’t be doing. Please help!
Thank you for reading!
You are posting with the patient community, not doctors - so it would probably help to post in the expert area (but he only answers once a week or so).
Glioblastoma is likely the name of the tumor. Since she had the biopsy - can you/she get a copy? If they changed her treatment plan after the biopsy, then something has to be in the report that needs to be known.
1. steroids have a lot of side effects. Yes, it can reduce swelling but they may have found that it was not doing anything so why subject her to the side effects?
2 - www.clinicaltrials(at)gov is where you can find clinical trials. You can search by location, by tumor etc. so you can search.
3. As I am a patient, I don't know about the vaccine. I did have an uncle with this type of tumor. You probably have to look for a trial but she probably has to be in good shape - in some early stage.
4. Read up on the clinical trials site.
5. Your doctor should also be advising your aunt - are you her medical advocate? On her hippa etc so you can get her medical info and talk to her docs?
http://www.medhelp.org/forums/Brain--Pituitary-and-Skull-Base-Tumor-Forum/show/994?camp=msc&personal_page_id=862364 is a good place to post and I see you already posted there.
Your aunt's condition should drive what should and should not be done - and consult her doctor if you have questions.
Thank you so much for the info rumpled and I'm so sorry it took me a few days to get back...its all rather mind blowing. Although her doctor is telling her there is no way her tumors can be operated on she is pursuing this route. The problem she is having at the moment is getting in ...in time with one of the few doctors that have been known to operate on the inoperable. I will continue to support what ever she chooses.
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