Temodar

Temodar manufacturer, Schering Plough has a program called "Commitment to Share" which they will help people in your situation. Go into their Web page to get their 800 #.

Hope this helps.

Hi helen, My mom is 69 and had a glioblastoma removed and is starting a clinical trail of temolozide (sp?)and radiation in Pittsburgh. Do you know if this is another name for temodar? Can you send me information about the experimental drug your husband used and the nutritional information?
Thank you for your letter, it gives me hope! I hope your husband is doing well. Julie

Dear Helen,
Can you send me info. on the diet and the supplements that your husband is taking? I just finished my 12th Temodar cycle for a recurring Glio. I was 39 when it showed symptoms, had surgery but no radio nor chemo. Then it reapeared at age 43.

Hope your husband is still doing well and hope to hear from you soon.

Please send me any info. My father, age 65, just had surgery one week ago. Thank you, sincerely, Sherri Lynn

My mother-in-law was diagnosed with this type of cancer. She going to be treated with Temodar.
My question is whether or not that your husband tumor was operative/inoperatable?
My mother-in-law was not operatable!

My prayers are with you both!

Thank You.

Thank you for your prayers, ours go out to you and your family as well. The tumor was partialy surgicaly removed. there was two tumors at the time of surgery. One was completely removed, the other was partialy removed. Joe underwent radiation and chemo (temodor) until a new lession appeared. We are now seeking other forms of treatment elsewhere, as SK still want to use the Temodar, even though a new tumor appeared while on it.

Dear Helenlee,
I am interested in the nutritionist you had in Utah. Is she expensive? Also, if there is some written info we could use instead of going through a personal nutritionist?

thank you so much!
Love,
Taffeta (Nancy)

hi my husband is 34 yrs young. We are together 16 years and have 2 babies. he was dx with lung cancer in 7/04. Started chemo and wad doing quite well on his way to remission as of 04/05. He was admitted to the hospital for memory deterioration and confusion on 05/05. Apparantley the cancer spread to his spinal fluid with multiple lesions to the brain which had entered the blood brain barrier. They did 2 intra-thecal brain chemos and 15 sessions of radation. To which the spinal fluid was neg. for malignancy. However more tiny enhanced lesions appeared in the brain. Dr. decided to stop all forms of treatment as to not make him worse. Joe was admitted to hospice on 7/4/05. After much looking around Sloan Kettering was willing to review his records. At this point my hubby is not in any pain. He however cannot walk, talk and does not really want to eat. Overall he looks good and sometimes repies with a simple yes or no or nods or blinks his eyes. Drs at SK state we can possible use temodar to buy him some more time and maybe improve his cognitive skills, however, because of his recent spread of cancer, leptomeningeal carcinomatious, they still are recommending hospice and to probably not do this b/c he is comfortable and therefore no need to disrupt his quality of life. Taking the pill can cause internal hemmoraging and increased infection for him. In researsching this cancer, it is RARE and prognosis is usually poor. CAN SOMEONE PLEASE HELP ME WITH ANY INFORMATION / ADVICE AND OPIONS. many thanks
a desperate wife seeking help and advide, jessica

Any chance you can give us contact info for the (Utah?) nutritionist mentioned in various posts? My wife has just finished radiation, and will begin Temodol in next few days. Thanks.

Hi Helen,

I hope this finds you and your husband still doing well. My wife is 33 years old and was diagnosed with a grade 4 glioblastoma three and a half years ago when she was seven months pregnant with our little girl. She had successful surgery, followed by radiation and then three+ years of monthly temodar cycles. She continues to show no sign of recurrence, so for that we have been incredibly blessed. However, I live in fear that this thing will come back, so I try to stay on top of the latest treatment methods.

I was wondering if you could send me more information on the experimental drug (Monoclonal Antibody 45 ) that you were informed of at Hahnemann Hospital in Philadelphia. If you have a contact name and number for an oncologist there, that would be great. I've not heard of this drug before and would like to explore it as a possible future treatment option. Thank you for any help you can give.

Mark