Looking For Glioblastoma Multiforme Stage 4 Survivors (Brain Cancer)

I would like to hear from anyone that has survived or been part of a family that had the above cancer.

Thank you

My wife was diagnosed with this ailment Sept last, has had two operations for tumor removal since and has recently completed 30 radiation sessions and two chemo sessions. We are waiting for the third temodar treatment once she passes the blood count tests. There is a book out, Surviving Terminal Cancer by Ben Williams. It’s a paperback, sells for under $20 and offers good details about this type of tumor with much research.

Andrew W.

Andrew,
Thank you so much for getting back with me. My husband was just diagnosed on 12-4-02. I am taking it by what you said your wife's is also stage 4. My husband has had one surgery, is now taking radiation. He is unable to take chemo-because he has a kidney transplant. I am definitely going to go out and by the book you suggested.

When my husband was given this diagnosis- the doctors told him the normal life expectancy is 1 year- but usually not over 2 years. Did you get the same type of results?

How is your wife feeling now? Since she has had 2 tumor removal's - how fast did they grow back? What is a temodar treatment? Is that chemo?

Hope to hear from you soon.

Karen

My husband, Ross, was diagnosed with glioblastoma multiforme stage IV and given three months to live on 11/11/02 (his 58th birthday), underwent surgery (craniotomy- total gross resection) on Tuesday 11/12/02 and was home from the hospital on Saturday 11/16/02. Went back to work on Monday, 11/18/02.

He is started chemotherapy (Temador for 42 days) and radiation (34 treatments) on 12-04-02 and is tolerating all treatments very well so far. He has not been sick from the chemo nor has the radiation treatments taken a great toll on his body as of yet. All weekly blood work tests are great. He doesn't appear sick at all. He has really been amazing. He has yet to miss a day of work except for the days he spent in the hospital for surgery. He has kept up with his normal routine from day one. Up early (5am), breakfast and medication and then off the work around 6am. Work days last till 3pm, at which time he leaves and goes to radiation treatment at 3:30pm. His attitude is outstanding and physically is seems strong and fighting. His last chemo is 01-14-03 and last radiation is 01-24-03. New MRI scheduled for 02/19/03.

Thanks for your letter about your husband. I am so glad he is doing good. Unfortunately my husband did not have good health prior to this cancer. He has had a kidney transplant plus 2 heart attacks, diabetes, and high blood pressure. So he is not doing well.

If your situtation changes or you have more to tell me about your husband please write back.

thank you

Just thought I would check in and see how your wife is doing now. I hope better. My husband is not doing too well - but his spirit is good.

Please let me know about your wife.

Thank You
Karen

Thanks for your interest. I think I mentioned my wife is a diabetic and is currently on lots of medication. We kept an appointment at Duke Medical Center on 1-9 and met with an oncologist. A psychologist also tested her. She did not do well with the testing. The interview with the oncologist was helpful because she went there very tired and spent much time sleeping day and night. They had taken her off a steroid medication in mid Dec. and upon seeing her decided to resume that medication. They had the benefit of an MRI comparison using earlier Oct. films with one done in the middle of radiation about Dec. 15. They claimed they thought the tumor had stabilized from new growth, were not real sure, but decided the medication would help giving relief to inflammation thus allowing her to get back an appetite, also possible better progress with writing loss, puzzle solving, visual benefit, more positive walking (she was being interviewed in a wheel chair and had insisted on that help from where the car was parked). They suggested a respite from further chemo treatment and ordered blood counts once a week for 3 months and a metabolic comprehensive blood test once a month. They did indicate they were going to switch her from temodar chemo treatment to a process called ccnu. The reason given was to keep any tumor growth from developing immunity to the chemo treatment. The ccnu has not started as yet. Also, her platelet count dropped to 25000 a few days before going to Duke which required infusion of an outside supply. The latter also had something to do with the Duke decision to hold off on further chemo treatment. Thus, we are waiting to hear if they will resume the chemo. In the meantime my hunch is that Maggie is slipping away more and more. We had an MRI done on Thursday 1-16 and we are waiting to hear from Duke what their analysis is. I wish I could be more helpful. Andrew W.

I have heard from Duke regarding MRI done on Thursday 1-16. They indicate there has been recession of the tumor and they intend to continue the temodar chemo treatment which will likely occur in next few days. They also state there is evidence of inflamation. They are apparantly reviewing the steroid medication in effect with the idea of increasing the strength. Andrew W.

Just letting you know that my husband lost his battle with brain cancer on May 13th - he gave a good fight, but was unable to withstand the tumor.

How is your wife doing?

Karen

Dear Karen: My sympathies to you. Maggie is still alive but is considered to be terminally ill. She is in a nursing home and has been since early March. The nursing home with my approval has asked Hospice to help. She has lost much ability to speak but still does recognize some who visit but has trouble recalling how to pronounce the name. She is eating well but needs to be fed. The nursing home and hospice have approved giving her pain medicine. However, I believe she wants to talk and gets frustrated not being able to do so. Because of the same she creates some disturbance which the nursing staff calls "moans" but which I think are much less moans and more simple frustration. The pain medicine puts her to sleep. It’s hard to know how much time she may have. One thing is certain, it is a terrible ailment. Reading over some of the answers you received I believe it was a Judy who said survival is possible by certain supplements and a change in diet. I wonder if she has any statistics on the survival rate by doing the same. Thanks for your interest and again do hope you are managing as well as possible. I am sure it is difficult. Please feel free to contact me. Andrew W.