mullt non operable gioblastoma

[jollyburg]

Need help! Aunt, muti grioblastoma, brain Tumor (C/p)
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!

[Daniel M Prevedello, MD]

These are too many questions on a very long subject. I see that you are aware of the difficulties with this tumor.
If you want I can discuss her spedcific case in our tumor board. If you want you can send her information to me, free of charge. That way we can give a more specific opinion in her case.

[Daniel M Prevedello, MD]

I saw that. As I wrote to her. I will be glad to review her films and advise free of charge.
Let me know,

[jollyburg]

First post from my Aunt, who is also on my friends list. She has to write in large cap due to non-movement in one hand.

by karenmyers, 1 hour ago
Tags: glioblastoma, Tumor, treatment, brain, multiple
GOT MY PATHOLOGY REPORT BACK FROM MY BIOPSY.  MY DIAGNOSIS IS GLIOBLASTOMA MULTIFORM, GRADE IV. THESE TUMORS ARE GRADED INSTEAD OF STAGED. GRADE IV BEING THE WORST. THERE ARE SEVERAL. WE THOUGHT FOUR, BUT THE SURGEON SAID YESTERDAY PROBABLY FIVE OR MORE. HE IS ADAMENT THAT THEY ARE INOPERABLE. IT IS A VERY AGGRESSIVE CANCER, AND GROWS AND ATTACHES TO HEALTHY BRAIN CELLS VERY QUICKLY. WITHOUT SURGERY LIFE EXPECTANCY IS NOT VERY LONG, SO WE HAVE DECIDED TO PURSUE THAT AVENUE THUROUGHLY BEFORE ACCEPTING THAT DECISION. I GOT THE NAME OF A NEUROSURGEON AT KARMANOS CANCER CENTER IN DETROIT THAT TENDS TO BE MORE AGGRESSIVE WITH DOING SURGERIES THAT OTHERS DO NOT WANT TO DO. WE ARE ALSO GOING TO GO TO UNIVERSITY OF MICHIGAN FOR TREATMENT OPTIONS. THAT WOULD BE TO PURSUE THE MORE TRADITIONAL TREATMENT OF RADIATION AND CHEMO (BUYS A COUPLE OF MONTHS) YIPPEE.
ANYONE ELSE GOING THROUGH THIS TYPE OF BRAIN CANCER, AND WHAT IS YOUR TREATMENT? EVERYTHING MOVES SLOW. I SHOULD BE IN TREATMENT, AND I DON'T EVEN HAVE A RECOMONDATION YET.

[jollyburg]

Dear Dr Prevedello, I can’t tell you what great timing your reply is. My aunt and the family are beyond frustrated. Over a week ago maybe two she took all her records to the Sparrow hospital in Lansing, they were meant to send every thing to Karmanos in Detroit. An Amy at Sparrow never sent it, Karmanos’s office never called to say they didn’t get it. The reports were meant to go on review with a group this week; they will probably not get it for the following week review. Calling has done no good, apparently everyone is on vacation and aunt was made to feel bothersome. My aunt’s nature is that she wants to fight; she realizes it may only buy her some time but in the meantime she is getting worse. The stress is making it all much worse. My aunt will not have peace until she gets something going and feels that she’s being active in some way in regards to her care. I told her about you and the suggestion she blog you. I will be very very very grateful if you would say hi or ANYTHING as she is getting nowhere and really needs a professional such as yourself to acknowledge her or give her your opinions. You do not have to sugar coat anything she is aware of her situation. She is getting much overwhelming advice from friends but needs a sound plan on what to do or what can be done.
I’m giving her your site address to blog, her name is Karen Mye-s.
I am forever grateful to you! I can’t tell you how grateful I am!