Wife has GBM need input about treatments

mtp6061

Hi all, my wife Rose has a GBM diagnosed and removed 9 weeks ago,
has been doing radiation and 120mg temodar daily. SHe is soon going to be completing her radiation and is supposed to stop temodar for a month and then start up again on a 5/23 schedule.

Does anyone out there know about or has done more of a multiple drug approach. I am concerned that temodar alone is only going to buy time before the inevitable ends comes with a recurrence of tumor.

Why don't the doctors realize that a multi-faceted approach may offer more hope for longer survival.

If anyone has any suggestions please get back to me on this.

Thanks

brainman

Hi mtp,

By far, the “best” or “standard” chemo these days is Temodar (Temozolomide). I do not have any personal experience with that drug. My brain cancer is related to GBM but is a Grade III glioma. I did take a “cocktail” of chemotherapies because, at the time, it was all that was available (in 1993). However, I have heard good things about Temodar.

For more information than you need Very Happy

, go to http://www.rxlist.com/cgi/generic2/temoz.htm
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Roxanne Sparks

Hello,
My Mom has been taking Temodar since the first of December. From what I've read and heard, Temodar does only prolong the inevitable. She has been unable to take chemo for 3 weeks now because Temodar is terrible on your blood count. Her platelets and white blood count dropped very low. She had another MRI yesterday and they told us the tumor is stabilized and has not gotten bigger. Hopefully, she will be able to resume chemo in the next week. I spoke with my Mom's neurologist about a clinical trial and he said he would probably not put her through it. He said "you will not find a person out there that has been cured from a GBM". I know that's not the news you were looking for, but it's an unfortunate reality.
I'm lucky enough to spend 24/7 with my Mom, but it's terrible seeing what she's going through on a day to day basis. I wish you the best. Make sure you spend as much time as possible with your loved one.
God Bless,
Roxanne

mtp6061

Roxanne,
Thanks for the msg. I am sorry to hear about your mother.
This GBM thing is a beast. But we are taking a more hopeful
outcome approach. I have been in personal contact with several
people who are long term survivors of GBM so until my wife
stops breathing I am not giving up hope. The thing is to be super-proactive and get as much info and 2nd, 3rd, 4th opinions as possible because after the initial 6 weeks of temodar and radiation there are different views on how to treat GBM's amongst the medical community.
So in my opinion there is always hope, the odds may be tremendously against us but there is hope and having an upbeat positive oncologist who thinks outside the box is helpful as well.

Have you visited Jerrykine.net or http://www.virtualtrials.com/ or MD Anderson medical center, or Duke university.
www.coed4.org/Survivor.htm
http://www.davidmbailey.com/schedule.cfm?gig=794

Don't give up hope....has your mother tried a smaller dose of temodar on a different dosing schedule. Some people have gone to different dosing schedules to avoid the blood count problems.

Thanks,

mtp

Roxanne Sparks

One of the things that will definately make your wife get through this is your positive attitude. I'm always hopeful and miracles do happen. I think I neglected to say that my Mom's tumor was inoperable (brain stem), and she's 64 yrs old. If they can remove part of the tumor, there is always more hope. Always, no matter what a doctor tells you, you have to have more than one opinion. I completely agree with you on that. I wish you and your wife well and it's great that she has a wonderful spouse to check out every option available to her.
God Bless,
Roxanne

mixednuts · New User Joined: 28 Jan 2007 Posts: 9

My mother will begin Temodar/Radiation next Tuesday for 6-7 weeks, then do the 5/28 schedule. I would love to make this a place to discuss possible other options and explore what else is out there. I will take a look at the web sites you posted and explore this issue further with her oncologist. I agree that there must be other options available.

A little background:
Surgery 2 weeks ago, removed all visible parts of main tumor, age is mid 50s, active, currently weaker left side, but expect full recovery, left vision clipped, not expecting recovery.

My current understanding of the 5/28 is to allow time to live life without weakness or pain for some period of time before what doctors consider the inevitable. The always risky side effect of adding more drugs is losing quality of life without extending quantity of life enough to make it worth it.

I'd love to hear what you are thinking about.

hl1098 · New User Joined: 28 Feb 2007 Posts: 4

Hi mtp,

I am a newcomer to this forum. My wife was diagnosed with secondary gbm last November. We finished 6-week copurse of radiation/temodar in January. I also don't feel secure at all on Temodar alone. So I did some research on possible options beyond Temodar. There are quite a few newer agents, which target specific oncogenic pathways and are approved to treat other cancers, being tested in clinical trials for recurrent glioma, such as:

* Avastin (bevacizumab, VEGF antibody)
* Tarceva (erlotinib, EGFR receptor inhibitor).
* Sutent (sunitinib malate, small molecule multitargeted tyrosine kinase inhibitor, made by Pfizer)
* Nexaver (sorafenib, a small molecular inhibitor of RAF kinase, PDGF and VEGF receptor kinase, made by Bayer)
* Gleevec (Imatinib, small molecule tyrosine kinase inhibitor)
* Tykerb (lapatinib, ErbB-2 and EGFR due kinase inhibitor by GSK)
* Pazopanib (GW786034B, a small-molecule VEGF receptor inhibitor also by GSK).
* Vatalanib (PTK787/ZK 222584, tyrosine kinase inhibitor by Narvartis).
* Temsirolimus CCI-779 (mTOR inhibitor by Wyeth).

Thses agents as monotherapy does not bring in much benefit, however, various combinations between a target therapy agent and a chemotherapy have shown encouraging results for glioma, such as the recently published study by Duke on Avastin/CPT-11 combination. These agents are mostly being tested only for patients with recurrent patients. As recurrent patients often have failed Temodar, the combination is usually with other chemotherapy such as CPT-11 or hydroxyurea. A combination of Temodar with these agnets as first-line therapy for patients who are still responsive to Temodar looks very interesting. I wonder if anybody knows any clinical trials or off-label treatments combining such agents to Temodar for newly diagnosed brian tumor patients.

I would appreciate more information on whatever beyond Temodar.

Regards,

Hong

	Cancer Forums Forum Index -> Brain Tumors Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others