Please Help.....

My husband, Steve, is 44 years old. He has been diagnosed with glioblastoma, grade 4. The tumor (removed on April 7) was located in his parietal lobe. There are certain times now, that he speaks words that are non-recognizable. Has anyone else experienced anything like this? I feel so alone. Please, can someone respond to me.

Thank you.

Alison

Although my husband was not able to undergo surgery for his tumor in the brain stem, I have definitely heard from others that these kinds of things can happen after surgery. What I would suggest to you is to look on the internet and find out exactly what things that region of the brain controls. For instance, my husbands tumor is in the pons and medulla and these areas control vision, hearing, and mobility. If his tumor were to grow he could lose use of those functions.

I know the entire situation must be devastating and overwhelming for you. My husband is 33 and we have a 2 year old. It's tough, and I understand what you are going through. All I can say is believe that good things can and will happen, be his strongest advocate by learning all you can about his disease, never, NEVER stop researching treatment options (don't listen to and settle for the statistics), and see the blessing in each day that you are given together.

Take care,

Mary
w/o Steve,33
AAIII brain stem
dx 12/05
tx chemo/rads

I am so sorry about your husband's diagnosis. My husband was diagnosed with a grade IV gbm on May 25, 2005. The tumor was located in the left parietal lobe. He had the tumor resected, then radiation followed by temodar. His speech was effected but is much better and continued to get better after surgery. My husband chose to get treatment at U.C.S.F. and is being treated with Tarceva/Temodar. His tumor has continued to shrink. This disease is a monster and for the caregiver a huge burden. I am soooo very sorry. My thoughts are with you. If I can be of any help to you at all please let me know.

John's wife,
Bobbie.
dx 5/25/05

My husband also was operated on for glio4, parietal lobe. We had the Visiting Nurse, speech therapist and physical therapist. The speech therapist worked with for almost 8 weeks, three times a week. His words did come back and he was able to read the paper and large print books. She had him doing cross word puzzles and Suddexo (sp) puzzles. If your neurosurgeon didn't order up that at home service, please check it out. We live in MA and have very good BC/BS plan which covers things like that, but the doctors have to order it.
These are scary times and when people ask how I'm doing, my eyes well with tears..and on a good day I make it to noon without tears.

The six weeks of radiation and chemo went smoothly; the Temador is well tolerated. The radiation caused some tiredness. Good luck

My mom has had GBM4 for three years and has undergone 4 surgeries. She has bad balance, bad shorterm memory, her vision from the center of her eyesall the way to the right is gone so she can't see from center to her right side, she cant have a normal conversation b/c she forgets words and terminology. This is all side effects from the cancer and opperations. It is very hard and I know how you feel, only this is my mom not my husband. I am so sorry you have to feel the pain I feel everyday watching your loved one with this awful disease. I will keep you in my prayers as I do all the people I meet with cancer.

Katie

im the same ive watched my mom battle for nine months eye sight...short term and all of it. but its amazing she still remembers her friend and keeps fighting for her son....me, and her husband. my dad doesnt think she feels pain and always denies it..it kills me because i want her to die peacefully without pain but i know she doesnt want to show any at the end of her life...i can barely stand to be there next to my mom when my dad wont give her anything for her pain...especially when i see it in her eyes....n.

Hello Bobbie,

How is your husband doing now? My father has the same thing. He is on Temodar now. He is only 54 and we all know that is far too young. Can you share some your experiences with me?

Lori