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a friendly ear

heller31
Posts: 2
Joined: Feb 2004

On July 30 my 34 year old mother was diagnosed with GBM IV. She underwent emergency surgery, chemotherapy, and radiation. Last week we were informed that not only has her cancer come back, but it is larger and intangled within the brainstem leaving us with very little options. I guess I decided to come on today to salvage any hope because we are desperate at this point.

I am nearly 20 and never thought that something like this could happen to me. Life has changed dramatically since the summer. I transfered to a school closer to home so I can live with her and my older sister deffered a year from NYU Dental so we could be home with my mother and help take care of our younger brother since my dad has to go to work. If anyone needs to talk, I am always willing to listen. I understand how no one can relate to you and sometimes just talking does help. Please don't hesitate to reply.

TAremote's picture
TAremote
Posts: 57
Joined: Nov 2003

Hi Heller:
I read your post, and wanted you to know that there are people out there on your corner.
I'm a 53 yr old male with stage 4 GBM. I was diagnosed on July 7th. Under went surgery Aug 21st, where they removedabout 80% of the tumor and also inserted the glio wafers (like chemo wafers) next to the remaining tumor. My tumor is located on the occipitial lobe which is your vision. on Sept 12 I started both radiation and chemo (temadar), Since then I havecompleted 4 rounds of chemo. And on jan 2,2004, the MRI didn't show any new growth of hte tumor. I do have problems with my vision, short term memory, and cognitive thinking problems. I know that hearing how I'm doing doesn't really do much good for you. But, there is lady in my church that had a GBM onher brain stem. Hers was inoperabale due to the location. She went through Chemo, radiation, and I think the Gamma knife (not sure about the gamma knife) and now they say her tumor is gone. That was a couple of years ago. I know there are many trials out there, that might be of benefit to your Mom, I would ask your Onocologist what trials she might qualify for. I would think she is a prime candidate. Please let me know how you are doing. Being a caregiver I think is harder than being the person with the cancer.
Within this website is a chat room. They is lots of support and many caring people in the chat room. Please come in and join us.. You will get a great sense of relief.

God Bless
Tom

MarcoV's picture
MarcoV
Posts: 6
Joined: Feb 2004

Hi Heller31, I am a 33 yr old woman married to a wonderful 36yr old man diagnosed 21 months ago with a stage IV brain stem glioma. In June 02' they operated and removed 40%. It is in the base of the brain stem (medulla) He was given only a 3-6 month life expectancy. They treated him immediately following the surgery with high dose radiation for 6 weeks and then chemo for the next 12 months(Temodar). He blew all the doctor's expectations away. Unfortunately, an MRI on Sept 26 showed the tumor was no longer dormant and they started him on a new regimen of chemo. Harder this time and he is now experiencing neuropathy from it. It pains me everyday to watch him go through all of this. But the way I look at it is that he's still here fighting, when all the doctors had said he had no chance. Our next MRI is the end of Feb. We decided that if it shows the tumor is still active, we would stop all treatments, but if the tumor is dormant once again, we will keep going. I have a lot of hope, even though I'm weary from all of this. It has been the most difficult 2 yrs of my life. I never thought our lives could be so turned upside down. One minute, we were happily married trying to have a baby, saving for a house and the next thing we know we're in some hospital bed being told his dizziness and vomiting is not a bad virus but a brain tumor. I know what you and your family must be going through. You can reach out anytime. I know sometimes I want to give up and just have a normal life again, then I remember that we're in good company, and not going through this alone. So many people are affected by this awful disease. All we can do is be there for each other and help one another cope. Be well, and take care

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