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Non-surgical GBM grade 4

Posts: 7
Joined: Nov 2010

My 64 year old mom was diagnosed on 9-25-2010 with 2 Glio’s. She is just starting a clinical trial with Duke.
The clinical trial is to see the effects of Avastin, in combination with CPT-11 and Temodar, prior to radiation. I don’t see too much discussion about non-surgical tumors. . which worries me. Duke has received a lot of pres with Dr. Henry Friedman and his vaccine.. which is doing wonders for folks who’s tumors can be removed. My mom was not able to participate in his work. however her doctor, Dr. Annick DesJardin’s is very hopeful.. but offers no prognosis. Apparently I should not expect one… because they just don’t know. This bugs me to death on my “down days” but in all seriousness. ... who really knows. UGH!!
So I will let you know what the MRI looks like. .. but my mantra as well as Duke’s is that there is hope. .. There is always hope.

Posts: 358
Joined: Aug 2009

I will be very interested in hearing about your mom's treatment. My husband had a non-operable GBM. I felt the radiation was very hard on him and often wondered if he would have benefited more from avastin early on in his treatment and held the radiation. I wish you and your mom the best of luck in your battle against this cancer.

KMPonder's picture
Posts: 102
Joined: Dec 2009

Do let us know how it goes. My husband has three inoperable AAs. (Those are just a stage under the GBM.) He has been treated at Duke since October 2009. His PET from 10/22 was cold - no evidence of tumors. He's now off Temodar, but we have a new issue with his vision. They are not sure if it's a new tumor, doubtful since the PET was cold, or radiation necrosis. Scary! He just had his first Avastin treatment a week ago, and he just finished five days of steroid infusion therapy. The vision is the same. If we see no results from either, he may do HBOT. His neuro ophthalmologist here in ATL in conjunction with Duke decided on this course of treatment, since they cannot biopsy the optic chiasm where the "new enhancement" is. HBOT apparently is risky to stimulate malignant tumor growth, but I know my husband wants to have his sight restored in full if at all possible.

He's feeling great otherwise, so this is a disheartening turn of events after thinking we were off the chemo and that he had responded so well to the treatment. This is his second round of brain tumors in 23 years, and he had whole brain/spine radiation in 1987. They are thinking his radiation in 2009 caused this, but the radiation oncologist at Duke, whom we absolutely loved, advises he radiated nowhere near the optic chiasm. Glad to not know/think about all the potential harm that can come when you are just trying to do the best to rid tumors and survive.

It's a tough journey, but I will do all that I can physically and emotionally to make sure hubby has all the possibilities for a cure.

My husband's first mixed-germ cell tumor on the hypothalmus in 1986/7 was inoperable as well. He had 22 years of healthy living. It was early radiation in 1987 that induced the three tumors he was diagnosed with in 2009. We felt more focal radiation along with Temodar was his best chance to survive, and so we did more radiation. Now this. (Insert scream here.) :/ Keeping hope alive...always.

Posts: 7
Joined: Nov 2010

The duke study my mom is involved in has a 4 month treatment cycle of Avastin, Temador and CPT -11 before radiation.

The largest of her two tumors shrunk 50% and the smaller one shrunk30% after the first 28 day cycle. She is just finishing her 4th cycle, and then will begin radiation.

I think the hardest part is knowing that these freakin tumors will re-grow. . and we will be doing this all over again!

How long was your husband in treatment for?

Posts: 2
Joined: Nov 2010

My husband diagnosed Sept 9 with GBM IV . . . inoperable. 6 wks radiation and temodar . . . 1st MRI showing addition "something" - probably another tumor but original one is same . . . next step if "something" turns into ring enhanced turmor is Avastin - will find out on Dec 17. I like your mantra - there is always hope . . . my husband is 60 and so thankful for the 27 years we have had together - I hope for more and will take every day with him I can -

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