Glioblastoma diagnosis - 58 year old male

Mary from NJ

I have seen some forum topics here on Glioblastoma, but am searching for the most recent information available. A family member was recently diagnosed with Glioblastoma (58 year old male), had surgery and has now started on chemo and radiation.  Doctors are expecting he will survive between 18 and 24 months.  Knowing this is a very aggressive form of cancer, I am searching for successful treatments folks have received within the past year or so.

JOinMO

DUKE POLIO VIRUS TRIAL/OPTUNE

Hello Mary!  My friend just started her GBM fight so I'm still in the research phase.  Duke has had really good success with a polio virus trial.  If your family member is eligible, that's where I would recommend.  My friend isn't currently eligible.

Another option is Optune.  Basically the person wears electrode arrays on their head and receives electrode treatment a recommended 18/24 hours/day (minimum).  While the research reports the average increase life expectancy is 3 months, there are people who have been wearing it for years.

I'll be watching this thread to see if anyone else posts promising treatments.

JO

0807

My own experence

Mary, I am sorry to hear about your friend....but there is still hope.  I was 54 years old when I had my turmor (which came out of the blue) removed.   It was said to be GBM stage 4 and I was given 6 to 18 months to live.  It will be 3 years since the surgery the end of this month.  I did go through the radiation (by the way, your friend will need help and patience during this time, I truly thought that part was going to kill me) for 5 days a week for a total of 30 days.  Then I took chem pill called Temdar (sp) for 7 days a month for a year.  I had an MRI every month, now I have them every 4 months and no signs of it coming back.  I think the key is have a great support system and not to mention an awesome surgeon and oncoligist!  I too have heard of the Dukes trial studies.  Again, if you trust your on-coligist talk it over with him/her.  Mine told me that would be our last go to.  I am still praying it's gone and will not come back!  Your friend always needs to keep his faith and HOPE.  He will however be very tired and have to work hard to build up his strength.  I am still far from where I began in strength and longivity. Please tell him to keep the Hope, those are STATS and as my husband said, I am not a STAT.  No one knows what will come tomorrow.  I do however take anxity and anti-deprescion pills .... very small doses, but they do help.  Good Luck to you and your friend.

 

Mary from NJ

JOinMO said:

DUKE POLIO VIRUS TRIAL/OPTUNE

Hello Mary!  My friend just started her GBM fight so I'm still in the research phase.  Duke has had really good success with a polio virus trial.  If your family member is eligible, that's where I would recommend.  My friend isn't currently eligible.

Another option is Optune.  Basically the person wears electrode arrays on their head and receives electrode treatment a recommended 18/24 hours/day (minimum).  While the research reports the average increase life expectancy is 3 months, there are people who have been wearing it for years.

I'll be watching this thread to see if anyone else posts promising treatments.

JO

Thank you for responding!

Hi Jo,

I have been following the polio virus treatment on documentaries.  It is amazing.  I know the first woman who received the treatment was fortunate to extend her life because of the treatment.  Thank God for the brave folks who are willing to participate in trials for the sake of all of all who will be diagnosed in the future! 

Mary

Mary from NJ

0807 said:

My own experence

Mary, I am sorry to hear about your friend....but there is still hope.  I was 54 years old when I had my turmor (which came out of the blue) removed.   It was said to be GBM stage 4 and I was given 6 to 18 months to live.  It will be 3 years since the surgery the end of this month.  I did go through the radiation (by the way, your friend will need help and patience during this time, I truly thought that part was going to kill me) for 5 days a week for a total of 30 days.  Then I took chem pill called Temdar (sp) for 7 days a month for a year.  I had an MRI every month, now I have them every 4 months and no signs of it coming back.  I think the key is have a great support system and not to mention an awesome surgeon and oncoligist!  I too have heard of the Dukes trial studies.  Again, if you trust your on-coligist talk it over with him/her.  Mine told me that would be our last go to.  I am still praying it's gone and will not come back!  Your friend always needs to keep his faith and HOPE.  He will however be very tired and have to work hard to build up his strength.  I am still far from where I began in strength and longivity. Please tell him to keep the Hope, those are STATS and as my husband said, I am not a STAT.  No one knows what will come tomorrow.  I do however take anxity and anti-deprescion pills .... very small doses, but they do help.  Good Luck to you and your friend.

 

Thank you for responding!

Thank you for responding!  Your story is very positive!  Since I first posted my message, my cousin has started radiation and chemo treatments at Johns Hopkins in Baltimore.  His ability to see is getting worse.  Doctors are doing their best to keep what remains (of the tumor after surgery) from growing as much as possible.  Cheers to you for reaching a wonderful milestone of 3 years since your surgery!  Having a cancer diagnosis is a daily reminder to live life to the fullest and reminds us that the petty crap in life does not matter.  Best wishes to you! - Mary

Debi15339

0807 said:

My own experence

Mary, I am sorry to hear about your friend....but there is still hope.  I was 54 years old when I had my turmor (which came out of the blue) removed.   It was said to be GBM stage 4 and I was given 6 to 18 months to live.  It will be 3 years since the surgery the end of this month.  I did go through the radiation (by the way, your friend will need help and patience during this time, I truly thought that part was going to kill me) for 5 days a week for a total of 30 days.  Then I took chem pill called Temdar (sp) for 7 days a month for a year.  I had an MRI every month, now I have them every 4 months and no signs of it coming back.  I think the key is have a great support system and not to mention an awesome surgeon and oncoligist!  I too have heard of the Dukes trial studies.  Again, if you trust your on-coligist talk it over with him/her.  Mine told me that would be our last go to.  I am still praying it's gone and will not come back!  Your friend always needs to keep his faith and HOPE.  He will however be very tired and have to work hard to build up his strength.  I am still far from where I began in strength and longivity. Please tell him to keep the Hope, those are STATS and as my husband said, I am not a STAT.  No one knows what will come tomorrow.  I do however take anxity and anti-deprescion pills .... very small doses, but they do help.  Good Luck to you and your friend.

 

Glioblastoma

hi, I was just,reading your story to joinmo.  after a week of losing ability to use my r,hand and then arm, an MRI was done and on 11/28/16, an MRI showed a tumor about the size of a small orange, 1 week later it was respected with th surgeon saying. He got 99% of it.  2 weeks later, we found that it was glioblastoma grade 4.  I then had 42 treatments of radiation and am taking the termz.  For 5 days and then off for 3 weeks, with MRI every 2 months.  I will be doing that for 6 months with 2 months to go.  I am very tired now with no energy, but the last MRI showed a tiny dot of cancer.  i don't know what happens in oct. when I have completed this.  I am a 58 yr. old female, raising her 4 year old.  I have heard about the duke trials, but my dr.says we are not ready for that yet.  I am just interested In hearing where you are on this journey.  This has been one of the worst nightmares of my life, yet the good Lord has taken extremely good care of me and I have little to no pain, just a total change of lifestyle and loss of use of my right side of which I am regaining use of.  Thanks and prayers for all who walk this road!

Mary from NJ

Debi15339 said:

Glioblastoma

hi, I was just,reading your story to joinmo.  after a week of losing ability to use my r,hand and then arm, an MRI was done and on 11/28/16, an MRI showed a tumor about the size of a small orange, 1 week later it was respected with th surgeon saying. He got 99% of it.  2 weeks later, we found that it was glioblastoma grade 4.  I then had 42 treatments of radiation and am taking the termz.  For 5 days and then off for 3 weeks, with MRI every 2 months.  I will be doing that for 6 months with 2 months to go.  I am very tired now with no energy, but the last MRI showed a tiny dot of cancer.  i don't know what happens in oct. when I have completed this.  I am a 58 yr. old female, raising her 4 year old.  I have heard about the duke trials, but my dr.says we are not ready for that yet.  I am just interested In hearing where you are on this journey.  This has been one of the worst nightmares of my life, yet the good Lord has taken extremely good care of me and I have little to no pain, just a total change of lifestyle and loss of use of my right side of which I am regaining use of.  Thanks and prayers for all who walk this road!

Hi Debi - I apologize for not

Hi Debi - I apologize for not seeing your message sooner.  It is close to 3 years since your post.  My family member survived about 18 months after diagnosis.  I hope you are doing well and that your energy level has increased!  -Mary