Anybody With Gbm Treated With Just Radiation?

Hi all, Anybody out there treated with radiation only for GBM IV? My Dad was on both the Radiation and Temodar for one week when his platelets fell to 18,000. That was last week, and his oncologist suspended the chemo indefinitely. Also, how far along in the radiation do they know if it is working? They also have him on 16 mg. of decadron daily- which is wreaking havoc on his body..... Thanks, Lisa d/o Rudy, dx 8/23/06 GBM IV (age 74)

The most exciting development in the treatment of GBMIVs is a relatively new regimen called cpt11/avastin. it is still only available in clinical trials. ask your oncologist where your dad can go for this. radiation alone will shrink it temporarily but it will just grow back. usually they do surgery to remove as much of the GBM as they can. why are they not doing this? there will be a lot of swelling in the brain from the radiation. if the tumor is removed first, there is room for the swelling (where the tumor was). i think you need to get a second opinion from someplace that knows GBMs well. MD Anderson (tx), Sloan-Kettering (ny), Johns Hopkins(md). If they say your neuro-oncologist's plan seems reasonable then you know you are on track. if they say they have something far far better, that is great. sloan, m anderson.. they have web pages you can find with google with the patient appointment line phone numbers to call and they will make an appointment right away. i bet texas, new york, and maryland have nice weather this time of year. take a jacket. so to recap: get a second opinion. get cpt11/avastin started. get surgery if it is possible (surgery before the radiation seems to be better than after). what does everyone else think?

Amnia, Thanks for your quick response. My Dad's scans were sent to Memorial- Sloan Kettering for dx confirmation, and his Dr. has consulted with them in regards to his treatment. They said his tumors are inoperable because of the locations in the temporal and parietal lobes. He was pretty messed up after the brain biopsy- loss of coordination and control of the right side of his body with almost total impairment of the the right hand. So after dx, when they said he was not a candidate for surgery, it was a relief to him that he would not have have to go through that. We're also not sure if it was the biopsy that did this or tumor growth..... I will ask his oncologist about the avastin/ cpt 11 next week when we go back. Right now, they're concerned about the platelet level. I know his oncologist had to talk his radiologist into letting him get his treatments this week because after transfusion, his platelets fell below 60,000 which is close to the level where the radiolgist will not give him treatments. His next transfusion is scheduled for Monday. I look back to July before all the steroids and the treatment and wonder about his quality of life. He was still going out into the world... church, work,etc. and now everything has changed, and I don't know if it is the GBM or the treatment that is doing this to him.....

Hi I am so sorry to hear of yet another person with this terrible cancer. My husband was diagonosed 4/17/06 and had surgery the following day. He started chemo Temodar and radiation about 4 weeks later, he was only on chemo for approx 3 weeks total in which time he was in and out of the hospital with low platelets and white counts, the last time he went in his white count was down to .06 and his platelets were less than 5,000, he was considered netrophenic and had to be in a private room with everyone wearing gloves and had to have his food specially prepared as he had absolutely no resistance to any type of infection, he was on 4 types of antibiotics intraveniously and was given platelets and shots ( I can't remember the name) to up his white count. They released him 2 weeks later with a barely passable count. Needless to say he almost died and had to be taken off the chemo. He did finish his radiation and I looked in search of alternative means. My primary doctor told me about Fred Eichorn @www.ncrf.org and his product cellect. We went on his program, which is eating only fresh foods, nothing with preservatives, fresh fruits, veggies and meat from the butcher, and fish from a fish market. His drinks contain a certain mix of vitamins which are supposed to keep your PH level high enough to not allow cancer cells to grow. He was supposed to go back on temodar after his radiation stopped, 5 days a month for 18 months, at double to rate he was on before!! We were both terrified of what could happen at that dosage after the reaction to 140 mg. So we have been on Fred's program for almost 2 months. He has had great success with many types of cancer, and we know that gbm is a tough one to fight but we felt that at least this option would give him a better quality of life, and so far it has. His first MRI after radiation and while on Fred's program for almost 3 weeks showed no growth in the bed where the tumor was and the small piece of tumor that was left in there was gone...we have another MRI in mid october and that will tell us if this program is working. I pray everynite that it is, but if not at least he is doing great right now. He is back to driving and looks great. His only problem since the surgery is a very slight forgetfullness and a problem getting the correct words from his brain to his mouth but it is not terrible and if that is the worse that happens we will live with it. Sorry this was so long but I wanted and needed to put this out there. I hope it helps you and I also hope that maybe someone else out there can give me some positive stories of gbm survival. Thanks to all and God Bless...Nicks's wife.

Hi Geri - Thank you for sharing your husband's story. I am hoping, your next MRI will bring you more good news!! Can you please share what is the exact vitamin mix your husband is taking everyday? I looked up information on cellect on the website and looks like there are several products they offer. Thank you so much and stay strong!

The cellect my husband takes is the powder form maxi blend with the cod liver oil pills. He takes 4 doses a day, with each dose you take 4 cod liver oil pills. They come in flavors and he mixes his with milk, can also be mixed with water. If you try it good luck and it would be wise to contact Fred Eichorn, his email and Phone 3's are on his site, www.ncrf.org. Good Luck and God Bless........we all need that.

Decadron is a short term answer to a long term problem.The longer you are on it the more damage it does to internal organs.There are natural alternatives to decadron you can find with a little research.

Hi, You noted that decadron has the potential to damage internal organs. My mother (77)was diagnosed with GBM 4 (is there any other level besides 4? I don't think so) in March has been on decadron ever since. She is not taking huge doses like some but I was just wondering what the affects are? Right now she is on weekly platelet transfusions, lost count many weeks ago and blood transfusions every other week it seems. We were told by her Dr. that some patients can become transfusion dependent so we think this is where she is at right now. She could not finish her last 10 days of chemo but did finish the radiation treatments. Her quality of life has diminished. Her vision is bad, she has lost the use of her left hand/arm, and basically cannot do much of anything. She still can carry on a conversation although at times gets confused. We were told by a nurse that it is possible that her heart is weakened so that is why I am asking about the decadron damage to internal organs??? I am just curious. We were told her age is against her even though she was in excellent health before her diagnosis. I have come to the conclusion that this is a waiting game, wait for the next awful sympton of this awful disease to show up. MA

Young people can tolerate decadron better than old people can.Doctors usually give it because it reduces swelling and prevents headaches.The truth is it is just as bad for patients as it is for athletes who use steroids because it eventu- ally causes organ damage which will cause fluid to build up in her chest.This is what happened to my daughter.

After my husband had his surgery they put him on decadron, and about a month later he started having fevers which no one could figure out where they came from. He was in a and out of the er and hospital because his fevers went well over 102. Finally they realized he was having a reaction to the decadron and took him off, they put him on something else and I am sorry but right now I can't think of the name, I think it started with a W. He was on that for awlhile and then I asked if he could come off since he never had any seizures. They slowly took him off and now in that respect he is doing much better. So If you are having problems with decadron, and you need it because of seizures ask for something else, if there are no seizures or never were see if you can get off it totally. God Bless..Nick's wife