Temodar

Hi Mark, Your message made my day! I was diagnosed with gbm stage 4 multiforme July 13, 2005. I was very blessed, tumor frontal right side size of a quarter, had surgery immediately started temodor, have 3 radiation treatments left and have had no problems. Did your wife go right into remission following the radiatiion treatments. I am happy that your family is doing well. I also did not have any deficits. I am 53 and was planning on retiring next year, so I will go back to work shortly. Please reply with any information after you read this. Thanks, Sandy hope all is well! I have not been tired and my appetite has been fine.

I would suggest that you contact the drug company that makes Temador. It may be that there is help thru them if you do not have insurance. Good luck to you. Keep the faith.
Yvonne

i am quoting from the pamphlet that our doctor just gave us about temodar...for patients with financial needs beyond insurance provisions, Schering Corporations has also developed Scherings Commitment to Care™ program. This service can help eligible patients find aternative sources of reimbursement and my be contacted by calling 1-800-521-7157

hope this helps =)

Edward were you taking temodar every day or was it the 5 days on 23 days offscheme

Dear Helen Lee,
Following surgery (2 weeks today) for what I thought was a cyst on the right hand side of my brain, I was diagnozed with gbl. I am 60 years of age, healthy, with no prior medical problems.
Like everyone out there, this diagnosis has changed my life completely.
I start radiation and chemo (pill) week after next. So glad to hear that your husband is doing so well. I would be interested in info on the nutritional aspect that you mentioned.
Thank you for your help. God bless you, I will keep your husband and your family as well as everyone else out there going through, what I like to think is a bump in the road, in my daily prayers.
esinnc

Hi Sandy, Like Steve's message on his wife, it was encouraging to read your message. Following surgery two weeks ago I was diagnosed (Oct 31),with GBM stage 4. I will start a combination of radiation and temodor in the next week or so. Everything is so scary but when I read about others that have been down this pathway, survived treatments and continue on with their lives it is encouraging. When I was first diagnosed, of course I went straight to the internet and a lot of what I read was very discouraging and depressing. I have decided that I will only focus on the positive and, as a researcher I know that stats are just that. I am determined that along with so many others I am going to be a survivor.
I am 60 years of age and have been healthy all my life. I too woul be interested in the nutrition aspect of this treatment
God bless you, I will keep you and everyone else on this message board in my prayers.
Eileen

Hi Eileen, Sorry I took so long to write back. The whole process is so scary and overwhelming,but I have pretty much returned to my life before this diagnosis. The only problem I have had is my right eye gets a little swollen I think from the temedor. I have not lost anything through the surgery or treatments. I am a counselor in a school and I do go to work most days of the week. Stay in touch and take care! Sandy

Mark,
what an inspiration your wife is to me and I am sure everyone else on this message board! I will never feel sorry for myself again after reading what you and your family have been through. I have just been diagnosed with GBM IV and start my treatments tomorrow (radiation & temodor).
Gob bless you and your family and everyone else going down this pathway....WE ARE SURVIVORS!
EileeninNC

Eileen,

I will pray for you as you head into radiation treatments. Keep your head up and know that the journey is not impossible. It might be difficult at times, but stay positive and stay strong.

Best wishes and God Bless.

Mark

Dear Helenlee,
Your story really inspired me. My father was diagnosed with giloblastoma multiforme IV on Oct. 11,2005. He had surgery and they removed the large part of the tumor in the ocipital lobe At Hoag Hospital in Newport Beach Ca. He did have tenacils which we are treating.(They were on vacation at the time of his seizues)

We have since air lifted him back to the Phoenix area. He is also 76 and had never really been sick in his life. He takes Temodar 180 mg every day and radiation for 10 min. 5 days a week. He has lost some eye sight and his short term memory is not great.( he does not remember where he lives.) He is in a rehab center as after the perfect surgery he got a very high fever of 104.8 and we were very scared of septic so he is not walking by himself as of yet due to blood clots. It has just been one thing after another.

Sorry that I am rambling. Could you please give me more information on the nutritionist in Utah and also the monoclonal antibody 45. No doctor has mentioned that. They have mentioned the gamma knife and immunotherpy after his 6 weeks of radiation.
I just want my parents to enjoy their Golden Years and this Cancer is a nightmare. He is very tired and itches all the time.( i think this could be from the Temodar but we all want him to have the treatment.)
Only 3 more weeks...
Thank you again for sharing your story I am so happy for you and your husband.
Have a blessed Thanksgiving.
JoDee