GBM Cancer Stage 4

barbn said:

Alternative medicine
Dellamarie
I would appreciate any info you would provide to us. I'm not sure we would be able to travel to Germany though, but maybe the good lord will find a way for us if that is what were decide.
thank you so much
it is so good to talk with other people going to through the same thing.

DellaMarie said:

Alternative Medicine
Your husband's positive/optimistic frame of mind is a characteristic of longterm survivors. My husband, who was diagnosed with a GBM stage 4 in January of 2011, had the "Gold Standard" for treating GBM as did your husband. My husband's current treatment plan combines alternative and traditional drugs/medications. I was lucky enough to come across Ben Williams' book, Surviving Terminal Cancer. He is a 16 year survivor of GBM stage 4. You can find his story on www.virtualtrials.com along with a November 2011 update of new alternative treatments since his book came out in 2007. His approach to eradicating the cancer made the most sense to me which is what he calls a "cancer cocktail" meaning many different agents used together at the same time, some of which can/may act synergistically to attack the cancer cells. This is the way AIDS is treated today, not with just one drug but combinations of drugs which have a better chance of eliminating/controlling the disease. We also consulted with Ralph Moss, who researches and investigates the latest and newest cancer treatment that are worthy of considering and you can find him at www.cancerdecisions.com My husband also traveled to a clinic in Germany that was visited by Dr. Moss and reviewed by him in his Moss Report on Brain Cancer. At the clinic, my husband's blood was drawn so that a vaccine could be made using his own white blood cells, it's called a Dendritic Cell Vaccine. The vaccine is injected monthly to help his immune system recognize the tumor cells as invaders and go after them. Dr. Nesselhut is the name of the doctor running the clinic called the Institute for Tumor therapy. All the alternative treatments involve little or no risk, and they don't bring with them the same toxicities and side effect profiles that the standard of care treatments often come with. I will email more detailed info to your personal email address after I view you on www.caringbridge.com I would like to help you any way I can and hope that you can benefit from what I have learned over the past year. I like to have not only Plan A but a Plan B and even a Plan C as GBM is notorious for returning and being resistant to treatment. You aren't alone in this fight, many of us are here to help you and your husband win his battle, the two of you are in my thoughts-
All my best,
DellaMarie

alutiiqmom said:

interested in your treatment info
Hi:

My 18 year old daughter has anaplastic astrocytoma. We are doing the standard treatment: surgery, radiation and now chemo. This is a nasty illness. I am very curious about the cocktail you mention as well as all of the other stuff. Sounds promising. Could you please email me at: edna@camai.com and let me know any useful information. Thank you very much. God Bless.

Edna

barbn said:

My husband had his MRI today, unfortunately we didn't get the news we were hoping to hear. The tumor isn't showing where he had surgery, but they see two small spots in different places. How depressing. We were so optimistic. I asked the Dr. if the MRI could be deceiving yet, cause he said he could be slightly fuzzy to see everything. He felt the spots were SOMETHNG and didn't feel he should keep him on Temodor any longer to try something more aggressive than hoping it is nothing. So he will be starting Avastin on Tuesday.
I feel so deflated. I don't know where to go from here. We could go for trials but we are not ready for that.
Jess will be getting Avastin once every 2 weeks. Another MRI in 8 weeks.
We want and will stay optimistic and with prayers and the grace of God this drug might help.
Has anyone out there had avastin? We need to hear advice on this drug??/

connsteele said:

Sorry for the cryptic
Sorry for the cryptic abbreviations. I know how overwhelmed you feel with all of this. After two cancer diagnoses for my son and prostate cancer for my husband (who is doing well, he was diagnosed in 2003 and in remission), I still get overwhelmed with all the information and terms.

As for clinical trials, I don't know what it takes to get into one. For some reason, our son's doc hasn't mentioned any for him (he goes to the James Cancer Center at Ohio State University). I know there are certain criteria that a patient has to meet in order to be enrolled. I'm wondering if because our son is diabetic, and has had two different types of brain cancer, that it disqualifies him from most.

I don't think it would hurt to contact Mayo and talk to someone about your siutation...that his starting Avastin would prevent him from any clinical trials.

Our son's Neuro-oncologist said he is keeping Avastin "in his back pocket" for when his current chemo regimen (CCNU and procarbazine) stops working. He is due for an MRI on Feb. 20, so I guess we'll know then. He's completed just one 6-week cycle of this CCNU/procarbazine, after being on Temodar for 5 months, which didn't work: a new tumor showed up on the scan.

This is certainly a rough road we are all on. I'm glad there are people on this list who I can talk to, who know what I'm going through. Please keep in touch and let us all know what you plan on doing.

Love and prayers,
Connie
mother of David, age 34
first brain cancer: medulloblastoma, dx April 1985,
second brain cancer: anaplastic astrocytoma (AA3), dx April 2011