One patient with glioblastoma still alive nine years later
by Dads1fan on Sat Jun 12, 2010 11:14 PM
I was wondering if anyone on this board has successfully stopped their Avastin infusions and been able to go on to another form of treatment that successfully kept the tumors stable. I have read that once the Avastin is stopped , the tumors will grow and rapidly..Temador did not work for my Dad, as it did a real number on his platelets so I am thinking (worrying really) as to what our next plan of action will be once the Avastin stops working..
Thanks for taking the time to read the post.
by Angel_on_the_Right on Sat Jun 12, 2010 11:30 PM
Has your Dad had surgery or radiation? My sweetheart went through a year of Temodol and was able to withstand it (he was a strong man taking Goji juice at the onset of the tumor back in 2004), but the "monster" returned within 6 weeks of finishing treatment! He has had both surgery and radiation, and they have tried him back on Temodol for two months. If it does not shrink the tumor (the NS is convinced it won't, and the ON wanted to try it), we will have to keep going with naturopathic treatments which we have already started. Aphasia has also set in. Sorry I can't be of more help with the Avastin infusion question. Don't give up; there is always something else to try! I always say this: MIRACLES HAPPEN!
by Dads1fan on Sat Jun 12, 2010 11:36 PM
Thanks for answering. My Father was first diagnosed w/ GBM in 12/08 had the surgery, radiation and chemo and then after 3 months on Temador his platelet count dropped below 100mg and never fully recovered. He was taken off all chemo for a year and then in April 2010 had a recurrence so was put on Avastin straight away. He just had his latest MRI (on Thursday) and the Avastin is working, so I guess you can say I am thinking ahead. He is only on the Avastin without another form of chemo, so I am wondering if it will be as successful for that long, and then of course..what next.
by Angel_on_the_Right on Sat Jun 12, 2010 11:57 PM
Just stay positive, Mary; if it is working thus far, that is a great sign! I have heard good things about this drug. I know they are few and far between, BUT there are people that have survived in remission a long time, Those that I know of have also used some alternative treatments. All the best to you and your family, and please feel free to contact me at any time, even just to "chat" or "vent". It can be, and IS so frustrating, and I don't blame you for worrying. This is your Dad's life!! I think all of the caregivers here are on pins and needles until our loved ones become stable.
by Dads1fan on Sun Jun 13, 2010 01:17 AM
Thanks Brenda, :) all the best of luck to your sweetheart as well.
My Father does take supplements as well, which I think might have helped him be stable for so long without treatment. He takes Vitamin D (cause they found that his level was very low) Boswelia(sp?), Zinc, Shark liver oil, and a couple others.
by Gbm_Wife on Sun Jun 13, 2010 03:13 AM
My Dh has been off avastin since 5/06. He took gleevec after
avastin and hasn't taken anything in 3 years. He only took avastin for 3 months. There is a Dr. in NJ, Dr. Landolfi, who I hear is studying how to get patients off of avastin with more success. I thought I heard he is going to publish a study .
by Dads1fan on Sun Jun 13, 2010 11:21 AM
Gleevac? That is the second time I heard of that drug after Avastin so I'll have to google it. If you don't mind my asking why was he only on Avastin for 3 months? Was it side effects?
by mbg53 on Sun Jun 13, 2010 07:51 PM
we all respond differently, of course. there are treatment options after avastin, unfortunately they're all immunosuppressants like temodar and their clinical efficacy is only 15%,gleevec, for example, rapamun (sp?)I'm currently at a no chemo option place, but I'm continuing avastin infusions for quality of life purposes and I'll take that. Try not to look too far ahead. avastin can work for quite a while
by Angel_on_the_Right on Sun Jun 13, 2010 09:58 PM
One day at a time, and thank you for the information on the supplements. Please keep in touch.
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