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Father in Ireland with GBM

Mairechime
Posts: 2
Joined: Oct 2010

Hello There:

My Dad (who lives in Ireland) had surgery for GBM on Sept. 24, 2010 & just started a 2-week course of radiotherapy. As he is 66 years old & had complications after surgery, his doctors decided that he was too weak for chemotherapy. After the radiotherapy he'll go to a convalescent home. I just wish there was something else we could do besides watch him get a little stronger & then see the tumor come back.

I'm very aware of what a horrible diagnosis glioblastoma multiforme is. I have been doing all kinds of research online etc. to find out if there is any hope for a cure for my Dad. I wanted to ask you all what your opinion or experience is of any of the following alternative cures: www.gemm-therapy.com, B17, apricot seeds, grape cure etc.

Is there anybody out there who survived GBM by just having radiotherapy?

Any suggestions/opinions etc. would be welcomed. My email is: mairechime@gmail.com

I wish you all the very best.

Thank you,

~ Maire

robertJDeLuca
Posts: 1
Joined: Oct 2010

Marie...I just had this surgery on oct 7 2010. My only thought Is if he is not at a center that specializes in this sort of thing..it might be good to get him to such a place in the uk or the eu if at all possible. It sounds like you have done much research etc. Easy to say.would also want to know specifically what they mean by too weak for chemotherapy etc. Having said this my greatest regards and empathy for your concern as we are confronted with this disease. Best. Bob

Beckymarie
Posts: 358
Joined: Aug 2009

My husband had a glioblastoma and lived for 15 mos. which the doctors felt was a success considering the stage, size, location of his tumor. He got very good results with Avastin which initially shrunk his tumor by 50%. I've also read that there is a clinical trial involving a vaccine which is made from the tumor itself. Sounds like there has been some positive results with this vaccine. My thoughts are with you and your family.

summerjones
Posts: 3
Joined: Oct 2010

The vaccine protocol that my wife is getting is in clinical trial at UCSF (San Francisco). It is a heat shock protein process at time of surgery, tumor is removed and converted to a vaccine and depending on how many vaccines can be harvested, are administered weekly to monthly. Head of program is Andrew Parsa, MD. at UCSF.

smb96
Posts: 4
Joined: Nov 2010

I am sorry to hear about your dad, unfortunately I am in a similar boat. My mother was diagnosed recently and had surgery to remove the tumor last month (Oct. 13th). She is now on a chemo/radiation plan for 6 weeks, taking Temodar. I have tried to focus on the positive and hopeful stories, and not do too much online research...although it is hard to refrain from, I must admit. Much information out there in cyberspace is outdated, out of context, or frankly just untrue, and every person is different so it is really hard to use online information as a guide.

I agree that you should try to find a center that specializes in this tumor. After my mom's first phase, she will be sent to see Dr. Fine at the National Institute of Health (in the U.S.) as they have the latest and greatest treatments and trials available. I know you are an ocean away but perhaps a call to Dr. Fine's office in the States could help open the doors to similar resources in the EU. I am sure they must have information and resources for international trials, centers, and studies.

Most of all, stay strong and determined. And, remember - none of us are guaranteed tomorrow regardless of weather or not we have a deadly disease...so cherish each and every day you have with your father, and your family and friends.

Stacy

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