Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by drowen on Thu Aug 14, 2014 11:50 PM

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My 45 yr old son have GMR IV in 2005 surgery in New Orleans,radiation plus tem then avastin plus isomertropase inhibitor in ms Anderson Houston. Cancer free nine years! Younger people are doing better. good luck we'll all be praying

RE: RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by Pokie123 on Sat Aug 16, 2014 08:38 PM

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I'm so sorry to hear about your daughter and the diagnosis.  Please stay hopeful and strong.  Our daughter had recently turned 21 in May of 2012 when she was diagnosed with gbm IV and had surgery followed by proton radiation and Temodar.  She also qualified for the DC-Vax clinical trial, which she has been on for about 2 years now.  We have been truly blessed by God that she was able to continue her college studies and live a fairly normal life throughout the past 27 months.  I hope and pray that your sweet daughter will get through her treatments well.  There are people on this site that are living healthy, happy lives 10, 15 and 20 years after diagnosis.  It is one of the things that keeps me hopeful and positive when I start to feel beat down by the statistics.  God bless your daughter and your family!

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by ehite on Mon Aug 18, 2014 01:59 PM

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I would be interested in talking to survivors and to see what their side effects are. I'm 48 and a 12 year survivor. I have time loss, weakness, change of personality.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by SecManTx on Mon Aug 18, 2014 05:29 PM

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On Aug 18, 2014 1:59 PM ehite wrote:

I would be interested in talking to survivors and to see what their side effects are. I'm 48 and a 12 year survivor. I have time loss, weakness, change of personality.

my wife has been a survivor for two years, however teh entire time she has had weakness, and sense her right side is numb - not too much control. a while after getting back home after a couple of weeks to rehab, she fell and broke her hip on teh numb side. sense then she has not progressed very much at all - but she does pt and ot exercises every day for two hours...

 

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by marefanning on Sun Aug 24, 2014 03:45 PM

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Thank you so much for all your posts.  My brother was just diagnosed and came through his surgery beautifully.  He is a tough determined guy and the toughest parts of this fight are the statistics and the reactions from others.  People battling this horrible disease need hope and encouragement.  

Best of luck and keep on ... keeping on!

Marianne

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by donnaruth on Thu Sep 04, 2014 10:30 PM

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On October 24, I will be a seven year survivor.  Surgery, radiation, temodar, now avastin every 12 weeks. (Started Avastin at two weeks intervals, then 3, then 4, 6, 8, 10 and now 12.)  Doc doesn't want to stop the avastin.  She looks at it as a preventative.   Truly I don't think she knows what to do with me!!  Her nurse "accidentally" told me I was her longest survivor.  I have scans every 12 weeks.  I have no idea why I am still here and others are not.  I'll be 55 next month.  The only problem I have is I am TIRED all the time.  Don't know if it is residuals from radiation or the avastin.  I can't complain at all.  Don't give up.  Some of us are still here.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by donnaruth on Thu Sep 04, 2014 10:32 PM

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On October 24, I will be a seven year survivor.  Surgery, radiation, temodar, now avastin every 12 weeks. (Started Avastin at two weeks intervals, then 3, then 4, 6, 8, 10 and now 12.)  Doc doesn't want to stop the avastin.  She looks at it as a preventative.   Truly I don't think she knows what to do with me!!  Her nurse "accidentally" told me I was her longest survivor.  I have scans every 12 weeks.  I have no idea why I am still here and others are not.  I'll be 55 next month.  The only problem I have is I am TIRED all the time.  Don't know if it is residuals from radiation or the avastin.  I can't complain at all.  Don't give up.  Some of us are still here.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by CatsintheCradle on Thu Sep 04, 2014 10:41 PM

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I have read this thread with interest. Recently, I have come across a number of people with GBM stage IV who have survived two or more years. What is notable is that (at least based on these emails) you all have retained your cognitive abilities. My husband was diagnosed with a Grade III AA/Grade IV (more likely IV), with a 14 month prognosis. BUt it is so hard to figure out the options because as my husband himself has told me, his brain is only operating at about 50 percent. Right now, he cannot even work his smartphone or use his computer though he's a software engineer who's been using computers for 30 years. TV overstimulates him, reading is difficult so he sits around the house and sleeps. Would surgery and treatment improve this? No one can tell me. 

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by ehite on Fri Sep 05, 2014 02:43 PM

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On Sep 04, 2014 10:41 PM CatsintheCradle wrote:

I have read this thread with interest. Recently, I have come across a number of people with GBM stage IV who have survived two or more years. What is notable is that (at least based on these emails) you all have retained your cognitive abilities. My husband was diagnosed with a Grade III AA/Grade IV (more likely IV), with a 14 month prognosis. BUt it is so hard to figure out the options because as my husband himself has told me, his brain is only operating at about 50 percent. Right now, he cannot even work his smartphone or use his computer though he's a software engineer who's been using computers for 30 years. TV overstimulates him, reading is difficult so he sits around the house and sleeps. Would surgery and treatment improve this? No one can tell me. 

My daughter Paula is the one who had 3 surgeries for her grade4. She does not email because she messes up her computer all the time. I thought we could find someone she could communicate with so she won't be so depressed. She will be on antidepressants and seizure meds lifetime. Originally they gave her 3 years of life. Her first surgery was August 6, 2002. Her motor skills are affected but she also had a massive stroke. She mostly watches TV, reads and sleeps but she would love to have a boyfriend and live a normal life (not going to happen). She's divorced now and lives with us her parents. She cannot cook. She has a real time problem. Turns on water forgets to turn off. Would burn house down. She has improved over the years where she can stay by herself for short periods of time with microwave food. Takes 2 hrs to take a bath or more. Dr's don't know what else they can do. She can't get a job since she can't concentrate and stay with it. She was a court reporter until the tumor. I wish there was something I could tell you that would help but it has been 12 years and holding. Please email us with questions.ehite 2@verizon.net

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by ehite on Fri Sep 05, 2014 03:04 PM

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On Sep 04, 2014 10:30 PM donnaruth wrote:

On October 24, I will be a seven year survivor.  Surgery, radiation, temodar, now avastin every 12 weeks. (Started Avastin at two weeks intervals, then 3, then 4, 6, 8, 10 and now 12.)  Doc doesn't want to stop the avastin.  She looks at it as a preventative.   Truly I don't think she knows what to do with me!!  Her nurse "accidentally" told me I was her longest survivor.  I have scans every 12 weeks.  I have no idea why I am still here and others are not.  I'll be 55 next month.  The only problem I have is I am TIRED all the time.  Don't know if it is residuals from radiation or the avastin.  I can't complain at all.  Don't give up.  Some of us are still here.

Paula 48. (My daughter) She is on antidepressant and Seizure meds I'm told for the rest of her life. Paula is tired all the time and sleeps a lot.

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