Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

Hi! My mom was diagnosed with Glioblastoma Multiforme Stage 4 in May 2008. She had craniatomy in June 2, this year and was advised by the doctor to undergo radiation and chemotheraphy. Doctor said mom would survive for six months utmost without any treatments, one year with radiation, and two years with chemotheraphy. The family decided not to go through the treatments per request of my mom.

 In the first four weeks after her surgery she was okay, could talk and walk, and eat whatever she likes.

Five - six weeks after, her legs became smaller and could hardly walk without assistance. Seven weeks after operation she was bedridden and could hardly eat.  We still continued her steroids and other medicines, but she continued becoming weak.

 On her 8th week after surgery, mom was on her worst condition. So weak.. it was too hard for the family to witness her sufferings.

 Finally, she gave-up. Mom died two months after her surgery without any treatments. She died just end of this August. 

But don't lose hope, miracles still do happen. Just keep on believing. Give your father the best love he deserves.

God bless! 

Hello, I was so glad to find this thread. My Mom was diagnosed with what they thought was a mengioma in late Jan of 08. Surgery was preformed to remove the tumor from her left frontal lobe in on March 11 of this year. She underwent the typical 6 weeks of radiation and temador. Then after a 30 day break began a higher dose of Tremador. After the 2nd dose her CT scan showed growth. (she has a pacemaker so MRI's are not possible). She was refered to a neuro surgeon who told us the tumor was not inoperable. It has spread to the right frontal lobe and is compressing the vessical which feeds the brain stem on the left side. She is scheduled to begin treatment with avastin and CP11 on 10/08/08. I am concerened about the bleeds assoicated with these medications and her ability to tolerate the medication.

Her mental status is begining to degrade, she has memory loss and confusion. I find hope within the words on this thread where there was little hope before. Please continue to post survivor stories here. It is inspiring to know THIS CAN BE BEATEN.

My mother is fighter and left the hopstial less than 3 days after surgery. Surgery on 3/11 and home pm 3/13. We were amazed at her ability to bounce back after such a serious surgery. The Tremador and radiation therapy was a disappointment. The original tumor was tennis ball sized and the new one is bigger than a softball.

Thank you all for your inspiraiton and hope at a time when we can really use it.  

THANK YOU SO MUCH. It feels so good to have words of hope. We go for the Avastin and CT11 on 10/7 (port) 10/8 I will keep you posted. Keep me posted on your wife's progress. My mother has become very argumentative and quite mean. I hope this helps?????? She is yelling at me on the phone right now. I hope the mood swings get better. She is worried her body will not accept the medication. I understand her fears and am doing my best to help her. She just seems to get angry no matter what I say or do. It is very difficult. Thank you for your support.

Kim

Hi,

I am writing this message with a deetp heart to reach out to see if some one is there with a similar experience.

My mother was diagonosed with Gliobalstoma Mutiforme on May 15 2008. She has a butterfly like tumor spread across the top of the brain crossing the brain. This is NOT an operable condition per the doctors as there is huge risk for paralysis.

Immediatly we started radition treatment, it is a whole brain radiation together with Chemo therapy. This was done for almost 40 + days. She was okay before the radiation + chemo but after 4-5 weeks after radiation + Chemo she is not able to take any food and she has lost speech. Now we are giving her food through N G tube ( tube through nose ). Her condition is not deteriorating , but improving slightly. She is now able to recognoize family members and give a nod or a blink for yes or no. Her left side of the body is also kind of numb. Her right side she can move.

The doctors are telling this is beacuse if the brain swelling ( edema ) due to the treatment. The swelling is pressing her brain nerves and causing this.  They are giving her steriods and that is causing her blood sugar to increase. So we are giving insluin. In the meanwhile we did and MRI and due to swelling could not see if the tumor has come back. We did a blood test and it showed that the tumors have not come back. The doctors are telling it will take may be 3-4 Months for her to recover. But to what extent? We do not know.......

Any body there if they could share their experience it would be  nice....

Regards,

Hope_for_mom

Sad to hear your story.  My wife, wrote about above - had a butterfly glio in front of her brain and we were told that it was inoperabl, that it would destroy her personality, leave her vegetative, kill her, etc.  We didn't accept that answer and finally found Duke and Dr. Friedman (Allan) and he took a look and said he could operate and we went there and he did and it worked.  Local hospitals and doctors simply don't have the expertise that places like Duke does.

 Bob

hi, I was wondering how you were doing my son was diagnosed in 2007 same stage. Operated on 3 times, chemo/radiation and now is still on temdor. He seems to be doing ok right now I hope that you are doing better.

Linda  

My husband was diagnoised with this cancer he is stage 1V and taking temodar he is getting along fine, little swelling the tumor is not moving but it is not shrinking either we are just taking one day at a time....

sharon

This is a reply to last two posts from Linda and Sharon.  After surgery, radiation and temodar which have been the standard protocol, the new drug being used is Avastin and it seems to have a positive effect.  But I think long term efficacy is not yet known.  We researched and found Duke University Hospital in N. Carolina and it is my sense that not all hospitals and doctors are equal in this battle.  Duke is a leader.  We are approaching a year to first discovery which was a seizure/collapse.  Surgery was in December and she is holding her own at moment.  Where tumor is located in brain is major issue in terms of effects on personality.  Suggest spend lot of time on the internet and use search engines to read what is going on.  Being hopeful is necessary, but this is a devastating disease.  Write if you want more information

 Bob

Looking for nutritional, supplement and cancer resistant food information as learned about in "Anti-Cancer A New Way of Life" by David Servan Schreiber and "Foods to Fight Cancer" by Richard Beliveau and Denis Gingras. Also looking for what anti-tumor nutrients cross the blood-brain barrier concerning GBM. 

 Has anyone not gone the chemo/radiation route?