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Recurrent GBM

nevergiveup12
Posts: 3
Joined: Jan 2012

My mom age 52 (51 at diagnosis) was diagnosed with this horrible tumor. It was located in the frontal portion of the brain on the right side near the ear area. She had a crainiotomy on April 2, 2011 and they removed all of the tumor and some surrounding tissue. She began in May on Temador and Radiation (targeted), She was only on the chemo for about 3 weeks until she had horrible blood numbers and severe allergic reaction almost that was causing itching and causing her to bruise very easily (due to low platelet count). Her first MRI 3 months after surgery came back clear with a slight suspicion area, then she was ordered to have another MRI in September because her numbers were still very low (sometimes they associate it with progression)that one also came back clear. then on November 28,2011 Her mri came back and the tumor was back it is now located on the top of the right brain and is about 6cm long and 3cm wide. They have put her on avastin and basically told her if the avastin does not work they is not much more they can do. While I am worried I feel in my heart she will be ok. She lost her husband (my dad) 3 years ago at age 52 to a brain anyeurisim. So it has been a rough couple of years. We are trying to stay positive and hope for the best I am getting married in July and pray to god she will be in attendance! She does talk positivly and I love that she talks about seeing my children and also next christmas. I would like to know if anyone on this board can direct me to any one who can help her better any alternative medicines?!?!

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Hi,

I am so sorry about your mom. With a GBM recurrence she would be eligible to many clinical trials, including vaccine therapy. If the second tumor is operable, go to a center where they would create a vaccine from her tumor cells.There is a lot more than avastin.

Example of alternative medicine: no refined sugar; melatonin, anti-oxidant like berries, green tea, cumin, japanese mushroom extract, DCA.

Hope it helps.

J.

nevergiveup12
Posts: 3
Joined: Jan 2012

Thank you so much! This information will definatly be helpful. Have you seen better or heard of better success rates with this clincal trial and the tumor cells? That would be awsome to have a vaccine where I would hope it will help! Thank you again.

jon4156
Posts: 7
Joined: Jan 2012

As has been mentioned, go to clinicaltrials.gov for information on research studies that might be available to your mother. Note that many trials have specific qualifications that must be met to participate. Get her karnofsky score from her doctor since that is almost always used to qualify a patient for a research trial. You'll also have to know all the treatments she has had since some of them may also disqualify her for a trial. Also understand that you'll likely have to travel to where ever the facility is located that is performing the trial. It is unlikely that your mothers NO will get involved with a clinical trial that his institution is not a part of.

Avastin is generally considered the last effort in standard care for recurrent GBM. Some people have good success with it, some don't usually due to side-effects. For those who tolerate the chemical, some amount of tumor control (many times shrinkage) is more often the rule than the exception.

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