Primary Brain Tumor removed, Radiation now, Chemo needed?
Question:
Hi, My name is Jerry, In June after a slight auto accident it was discovered I had a glioblastoma multiforme (GBM) tumor growing on the right side of my brain just above my ear. I had no symptoms. The tumor was 4 cm. surgery was done and 80% was removed. after a couple of weeks in the hospital, I was released and the doctors started working on the protocol for my radiation and cemo treatments. A protocol was made and it was that I would undergo rad. and cemo at the same time. My schedule is for 36 treatments which started 10/1/2001 I go for rad. mon. – Fri., then off for two then Mon. – Fri. etc. at the same time I take a cemo pill the days I go to rad. (same sched) the cemo drug is called TEMODAR, I take 165mg. each day of treatment. This pill is part of a study. As the doctors have told me, this drug gets by the blood brain barrier much better than the introv. type of cemo,with less side effects. – Hide quoted text — Show quoted text – My 74 year old father had a glioblastoma multiforme tumor located above and slightly behind his left ear. It was toward the outer surface, and readily available for surgical removal, which was done nearly six weeks ago, within a week of discovery. The thing was the size of a golf ball, and was undetected by MRI three years earlier. Anyway, he is under beam radiation, total of 32 sessions. Generally there is surgery and/or radiation therapy (sometimes radiotherapy only). Now the medical oncologist says to start chemotherapy Mon,Tue,Wed next week, and continue every six weeks for 36 total sessions, completing around Christmas 2002. Chemotherapy often doesn’t penetrate the blood-brain-barrier….though chemotherapy placed into the brain during surgery (e.g. Gliadel waffers) might be beneficial. Is chemo needed? GBM is very difficult to treat. A question to ask your oncologist….how would the chemotherapy pass the blood-brain-barrier? In the case of metastases from cancers with an origin in other parts of the body (e.g. breast, lung, etc), some mets near the blood brain barrrier secrete a substance that causes new blood vessels to form (called neovascularization) to feed the metastases. These new blood vessels are very leaky ….and compromise the blood brain barrier. GBM is very different from brain metastases…. If so, is this the latest direction in therapy? His mother lived to 94 years, and father died at 82 of bone cancer that metastacized from prostate, so we expect my father to try for 100(!) if he gets through the treatments. THANKS
Response:
Hi, My name is Jerry, My 74 year old father had a glioblastoma multiforme tumor located above and
Hi Jerry, hi Mark, I’m sorry you have to join our little group, but there are some very good people here, we will help however we can. You can certainly get emotional support, just kill-file the loonies, and you will get a lot of advice. Some of the advice is very good, some is bad, you have to learn to tell the difference. In June after a slight auto accedent it was discovered I had a glioblastoma multiforme (GBM) tumor growing on the right side of my brain just above my ear. I slightly behind his left ear. It was toward the outer surface, and readily available for surgical removal, which was done nearly six weeks ago, within
I’m a BT survivor, dx’d (diagnosed) June 1 2001, oligodendroglioma 3, 4.5 cm. on the left, forward of the ear. This is one step earlier than GM. Too deep for surgery. It responded to radiation so I have not had chemo. Just, as you say Jerry, pills every day. Generally there is surgery and/or radiation therapy (sometimes radiotherapy only). time. My schedule is for 36 treatments which started 10/1/2001 I go for rad. mon. – fri, then off for two then mon – fri etc. at the same time I take a cemo pill the days I go to rad. (same sched) the cemo drug is called TEMODAR, I take 165mg.
There is some chemo available for BT (brain tumors) but most drugs either don’t make to the brain at all, or arrive there diluted. There are a lot of interesting drugs like temodar and tamoxifen that are now available to us. Now the medical oncologist says to start chemotherapy Mon,Tue,Wed next week, and continue every six weeks for 36 total sessions, completing around Christmas 2002. Is chemo needed?
Chemo is a very good idea for GBM because there may be metastasis outside the path of the radiation. Another option is Gamma Knife, or whole brain radiation. Even with that, chemo might still be recommended. As of now I have not had any of the normal side-effects. I own my own bussiness and I am back to work. the only thing I have noticed is hair loss, and some fateg but if that is bad as it gets, a hat and alittle rest will get me through that.
I’m working full time and try to get 8 hours sleep during the week. But when the weekend comes, well, today I got up and had some toast with my morning pills, then went back to bed until 2pm. I don’t know if it’s the remnants of the tumor, maybe I’m just making up for all those years I made sure I got at least four hours sleep every night. <GRIN GBM is very different from brain metastases…. If so, is this the latest direction in therapy?
Every case is different. Get opinions from more than one doctor. For me, I hope radiation only was the best therapy, that’s where I chose to stop unless there is some sign that more is needed. So far, so good! I wish you both, and Mark’s father, a long and healthy life. — Oisin "Curly++" Curtin SURVIVOR http://pages.infinit.net/curlypp/
Response:
Thanks for your support. I realize that 74 is not ‘young’, but his parents and their siblings mostly made mid-90’s, so… Sounds like an advanced study group is in order, for TEMODAR, or TAMOXOFIN, or ??? I’ll try to get that question to his team of doctors. What is clear is that GBM is not something to take lightly, and even though the young surgeon said "got it all", that means nothing to Oncologists, who look for 1 deviant cell as a detriment. Let’s keep positive, trial and see if GBM and lesser tumors can be eradicated!
– Hide quoted text — Show quoted text – Hi, My name is Jerry, My 74 year old father had a glioblastoma multiforme tumor located above and Hi Jerry, hi Mark, I’m sorry you have to join our little group, but there are some very good people here, we will help however we can. You can certainly get emotional support, just kill-file the loonies, and you will get a lot of advice. Some of the advice is very good, some is bad, you have to learn to tell the difference. In June after a slight auto accedent it was discovered I had a glioblastoma multiforme (GBM) tumor growing on the right side of my brain just above my ear. I slightly behind his left ear. It was toward the outer surface, and readily available for surgical removal, which was done nearly six weeks ago, within I’m a BT survivor, dx’d (diagnosed) June 1 2001, oligodendroglioma 3, 4.5 cm. on the left, forward of the ear. This is one step earlier than GM. Too deep for surgery. It responded to radiation so I have not had chemo. Just, as you say Jerry, pills every day. Generally there is surgery and/or radiation therapy (sometimes radiotherapy only). time. My schedule is for 36 treatments which started 10/1/2001 I go for rad. mon. – fri, then off for two then mon – fri etc. at the same time I take a cemo pill the days I go to rad. (same sched) the cemo drug is called TEMODAR, I take 165mg. There is some chemo available for BT (brain tumors) but most drugs either don’t make to the brain at all, or arrive there diluted. There are a lot of interesting drugs like temodar and tamoxifen that are now available to us. Now the medical oncologist says to start chemotherapy Mon,Tue,Wed next week, and continue every six weeks for 36 total sessions, completing around Christmas 2002. Is chemo needed? Chemo is a very good idea for GBM because there may be metastasis outside the path of the radiation. Another option is Gamma Knife, or whole brain radiation. Even with that, chemo might still be recommended. As of now I have not had any of the normal side-effects. I own my own bussiness and I am back to work. the only thing I have noticed is hair loss, and some fateg but if that is bad as it gets, a hat and alittle rest will get me through that. I’m working full time and try to get 8 hours sleep during the week. But when the weekend comes, well, today I got up and had some toast with my morning pills, then went back to bed until 2pm. I don’t know if it’s the remnants of the tumor, maybe I’m just making up for all those years I made sure I got at least four hours sleep every night. <GRIN GBM is very different from brain metastases…. If so, is this the latest direction in therapy? Every case is different. Get opinions from more than one doctor. For me, I hope radiation only was the best therapy, that’s where I chose to stop unless there is some sign that more is needed. So far, so good! I wish you both, and Mark’s father, a long and healthy life. — Oisin "Curly++" Curtin SURVIVOR http://pages.infinit.net/curlypp/
Response:
Hi, My name is Jerry, In June after a slight auto accedent it was discovered I had a glioblastoma multiforme (GBM) tumor growing on the right side of my brain just above my ear. I had no symtems. The tumor was 4 cm. surgery was done and 80% was removed. after a couple of weeks in the hospistal, I was releised and the doctors started working on the protocall for my radiation and cemo treatments. A protocall was made and it was that I would undergo rad. and cemo at the same time. My schedule is for 36 treatments which started 10/1/2001 I go for rad. mon. – fri, then off for two then mon – fri etc. at the same time I take a cemo pill the days I go to rad. (same sched) the cemo drug is called TEMODAR, I take 165mg. each day of treatment. This pill is part of a study. As the doctors have told me, this drug gets by the blood brain barrier much better than the introv. type of cemo,with less side-effects. As of now I have not had any of the normal side-effects. I own my own bussiness and I am back to work. the only thing I have noticed is hair loss, and some fateg but if that is bad as it gets, a hat and alittle rest will get me through that. My treatments are due to end by 11/15/01. Along with the rad and cemo I take some other drugs for sesours, swelling, inflamation, etc. everyday. In all seems to be going well and being back to work has had a very positive effect on how I am dealing with all of this, by the way I am 47 years old. I wish you Good luck with your father, I hope all gos well. Jerry Hunter, – Hide quoted text — Show quoted text – My 74 year old father had a glioblastoma multiforme tumor located above and slightly behind his left ear. It was toward the outer surface, and readily available for surgical removal, which was done nearly six weeks ago, within a week of discovery. The thing was the size of a golf ball, and was undetected by MRI three years earlier. Anyway, he is under beam radiation, total of 32 sessions. Generally there is surgery and/or radiation therapy (sometimes radiotherapy only). Now the medical oncologist says to start chemotherapy Mon,Tue,Wed next week, and continue every six weeks for 36 total sessions, completing around Christmas 2002. Chemotherapy often doesn’t penetrate the blood-brain-barrier….though chemotherapy placed into the brain during surgery (e.g. Gliadel waffers) might be beneficial. Is chemo needed? GBM is very difficult to treat. A question to ask your oncologist….how would the chemotherapy pass the blood-brain-barrier? In the case of metastases from cancers with an origin in other parts of the body (e.g. breast, lung, etc), some mets near the blood brain barrrier secrete a substance that causes new blood vessels to form (called neovascularization) to feed the metastases. These new blood vessels are very leaky ….and compromise the blood brain barrier. GBM is very different from brain metastases…. If so, is this the latest direction in therapy? His mother lived to 94 years, and father died at 82 of bone cancer that metastacized from prostate, so we expect my father to try for 100(!) if he gets through the treatments. THANKS
Response:
My 74 year old father had a glioblastoma multiforme tumor located above and slightly behind his left ear. It was toward the outer surface, and readily available for surgical removal, which was done nearly six weeks ago, within a week of discovery. The thing was the size of a golf ball, and was undetected by MRI three years earlier. Anyway, he is under beam radiation, total of 32 sessions.
Generally there is surgery and/or radiation therapy (sometimes radiotherapy only). Now the medical oncologist says to start chemotherapy Mon,Tue,Wed next week, and continue every six weeks for 36 total sessions, completing around Christmas 2002.
Chemotherapy often doesn’t penetrate the blood-brain-barrier….though chemotherapy placed into the brain during surgery (e.g. Gliadel waffers) might be beneficial. Is chemo needed?
GBM is very difficult to treat. A question to ask your oncologist….how would the chemotherapy pass the blood-brain-barrier? In the case of metastases from cancers with an origin in other parts of the body (e.g. breast, lung, etc), some mets near the blood brain barrrier secrete a substance that causes new blood vessels to form (called neovascularization) to feed the metastases. These new blood vessels are very leaky ….and compromise the blood brain barrier. GBM is very different from brain metastases…. – Hide quoted text — Show quoted text -If so, is this the latest direction in therapy? His mother lived to 94 years, and father died at 82 of bone cancer that metastacized from prostate, so we expect my father to try for 100(!) if he gets through the treatments. THANKS
Response:
My 74 year old father had a glioblastoma multiforme tumor located above and slightly behind his left ear. It was toward the outer surface, and readily available for surgical removal, which was done nearly six weeks ago, within a week of discovery. The thing was the size of a golf ball, and was undetected by MRI three years earlier. Anyway, he is under beam radiation, total of 32 sessions. Now the medical oncologist says to start chemotherapy Mon,Tue,Wed next week, and continue every six weeks for 36 total sessions, completing around Christmas 2002. Is chemo needed? If so, is this the latest direction in therapy? His mother lived to 94 years, and father died at 82 of bone cancer that metastacized from prostate, so we expect my father to try for 100(!) if he gets through the treatments. THANKS
Response:
The treatment your father is receiving seems similar to that of my wife. Based on my inquiries of our oncologists and my own research on the net, what you described sounds like SOP. I have found information concerning the latest research. It sounds very promising for the future of treatment for the disease. If what I have I read is correct, much of it is 6 – 18 months away from being tried on human patients. Glivec (also called "Gleevec") has demonstrated an effectiveness on the order of 80% or better when used to treat a certain type of leukemia. It is now being considered for (if not tested on) brain cancer patients. My wife and I have been most encouraged by a genetic "retooling" of polio virus that directs its attact on a genetic component in the tumor that is key to its growth. I suggest you look up the Duke Unversity Cancer Center on this one. (Sorry, our computer crased the other day, and I have lost many of our links.) In addition, I suggest that you follow the link below for a good overview on brain cancer treatment. We have found the Virtual Trials site as a whole very helpful. http://www.virtualtrials.com/williams.cfm On a personal note: Mark, I know what you are going through, and my prayers are with you. –pls
– Hide quoted text — Show quoted text – My 74 year old father had a glioblastoma multiforme tumor located above and slightly behind his left ear. It was toward the outer surface, and readily available for surgical removal, which was done nearly six weeks ago, within a week of discovery. The thing was the size of a golf ball, and was undetected by MRI three years earlier. Anyway, he is under beam radiation, total of 32 sessions. Now the medical oncologist says to start chemotherapy Mon,Tue,Wed next week, and continue every six weeks for 36 total sessions, completing around Christmas 2002. Is chemo needed? If so, is this the latest direction in therapy? His mother lived to 94 years, and father died at 82 of bone cancer that metastacized from prostate, so we expect my father to try for 100(!) if he gets through the treatments. THANKS
