grade 4 glioblastoma
i am told my cancer is treatable but uncurable about to begin 4-6 weeks radiation and chemo
i gues my question is is how worse or dibilitating is this likely to make me
i have already lost use of right arm and leg slowly coming back
but i really dont want to trade what i have left foe a very slim chance at recovory
id rath er enjoy what i have left tahan have brain damage be tired and lazy loss of memory
as it isnow i hope to be walking soon and i eat well and im alert and aware
i cant see how even 1 moreyear of life would be worth the trade in my quality of life
any experiences to share as to what i can expect post 4-6 weeks rad and chemo
gary
Comments
-
gbm 4
Im sorry to hear of your cancer, glad to hear that you were able to have it removed. We were not that lucky... Radiation and chemo is the only way to slow this beast down. With out it the thing grows like wild fire. Was the loss of your arm and leg from the surgery or the swelling in your brain?
They told us six months to a year down the line that there maybe some forgetfulness. Like when you go to the store and you forget something you went after, then step that up...
Radiation and chemo can make you tired. Rest and eat well. You get a break from the chemo for a month when the radiation is over.Then most do the 28 days off 5 days on. In those days you will be more tired.
Hope all goes well for you. I hope you have good support from your family.And call your doctor anytime you think anything isnt just right.0 -
loss of arm4theloveofmysis said:gbm 4
Im sorry to hear of your cancer, glad to hear that you were able to have it removed. We were not that lucky... Radiation and chemo is the only way to slow this beast down. With out it the thing grows like wild fire. Was the loss of your arm and leg from the surgery or the swelling in your brain?
They told us six months to a year down the line that there maybe some forgetfulness. Like when you go to the store and you forget something you went after, then step that up...
Radiation and chemo can make you tired. Rest and eat well. You get a break from the chemo for a month when the radiation is over.Then most do the 28 days off 5 days on. In those days you will be more tired.
Hope all goes well for you. I hope you have good support from your family.And call your doctor anytime you think anything isnt just right.
loss of arm and leg due to swelling post
surgery
i have great support and getting honest anawers from doctors
i will know more later today having first mri since surgery 10 days ago to prep fpr radiation
i will see how fast the beast is growing
thanks for your info0 -
the growth ratedeepwater55 said:loss of arm
loss of arm and leg due to swelling post
surgery
i have great support and getting honest anawers from doctors
i will know more later today having first mri since surgery 10 days ago to prep fpr radiation
i will see how fast the beast is growing
thanks for your info
Unfortunately most of the time GBM will grow very quickly without radiation and chemo. Some people on this website were not able to get a surgery or start radiation and lost their love one in 30 days. The life expectancy for GBM (and the the timeline you were quoting) is usually given if you undergo rad and chemo. You already had surgery. This is great great news.
Radiation will cause some fatigue and some cognition impairment. The chemo Temodar is a pill form given during radiation at a low dose; a month off chemo and then 5 days every 28 days of a higher dose.
Avastin is also usally given for GBM. It is a IV chemo that stops the growth of the tumor.
And then most importantly: There is a generic vaccine now for GBM.
That is right a VACCINE!!!
It attacks the growth factor VIII. It is given at many locations, including Duke. If I had a GBM I would move mountains to make sure I get the vaccines. ( I put a "s" to vaccines because there are actually multiple one; the easiest to get is the one targeting the growth factor VIII; but if you are reading this and you have a GBM that has not been operated on yet, then do yourself and your family a favor: go to a center that specialized in creating a vaccine from your own tumor cells, example University of San Francisco, UCLA, University of Miami).
A GBM is not a death sentence. There is no cure now but there will be one. More than 1000 clinical trial were registered in the world regarding gene therapy and vaccine therapy.
The steroid should help you with your deficits; rehabilitation should help you further.
Come back again on this website. And tell us you decided to do.
J.0 -
Similar story...
My sister-in-law is 56 was just diagnosed with two tumors - GBM grade 4. One tumor was partially resected, the other is midbrain and inoperable. She is on Temodar and undergoing week 5 of radiation. So far, she has done well. Some weakness on her right side due to the surgery but that is returning. Her main issue is fatigue from the drugs she is taking and from the radiation. Everyone had a different reaction to chemo and radiation. Her symptoms have been fairly mild so far. She is eating well, walking better and can do some things around the house. I'm hopeful that after radiation, she will begin to tire less and have more energy.
This is a wonderful site to share and receive support. Please come back.0 -
GBM is not a death sentence
Gary,
Julie is right. There are hopes out there for GBM, in fact for all brian tumor patients. With all those promising vaccine/gene trials going on, I truly believe some breakthrough is coming soon.
My husband has been dx with GBM for more than 5 months. He had very minimum side effect from all (surgery, radiation, chemo): hair loss, appetite change, taste change, constipation, fatigue, most are improving once the treatment is over. Fatigue is there since he is still on Temodar, but it is manageable.
I echo Julia' suggestions too on taking vaccines. One way to do it is through trials. Here are the link for CDX-110 (the generic one):
http://clinicaltrials.gov/ct2/results?term=cdx-110
For newly dx GBM, it is in phase 3. But you need to act fast because they won't allow any other treatment done other than surgery and radiation.
You can also try to contact Celldex for compassionate use. Not sure how that works out, hopefully it is easier than moving a montain :-)
good luck!
- Jane0 -
the growth rateI_Promise said:the growth rate
Unfortunately most of the time GBM will grow very quickly without radiation and chemo. Some people on this website were not able to get a surgery or start radiation and lost their love one in 30 days. The life expectancy for GBM (and the the timeline you were quoting) is usually given if you undergo rad and chemo. You already had surgery. This is great great news.
Radiation will cause some fatigue and some cognition impairment. The chemo Temodar is a pill form given during radiation at a low dose; a month off chemo and then 5 days every 28 days of a higher dose.
Avastin is also usally given for GBM. It is a IV chemo that stops the growth of the tumor.
And then most importantly: There is a generic vaccine now for GBM.
That is right a VACCINE!!!
It attacks the growth factor VIII. It is given at many locations, including Duke. If I had a GBM I would move mountains to make sure I get the vaccines. ( I put a "s" to vaccines because there are actually multiple one; the easiest to get is the one targeting the growth factor VIII; but if you are reading this and you have a GBM that has not been operated on yet, then do yourself and your family a favor: go to a center that specialized in creating a vaccine from your own tumor cells, example University of San Francisco, UCLA, University of Miami).
A GBM is not a death sentence. There is no cure now but there will be one. More than 1000 clinical trial were registered in the world regarding gene therapy and vaccine therapy.
The steroid should help you with your deficits; rehabilitation should help you further.
Come back again on this website. And tell us you decided to do.
J.
got mri results this morning from last night
2 weeks post op and no noticable growth
wii begin induction phase of rad and chemo early next week
…and the beat goes on…….0 -
great to hear, because mostmighty6 said:GBM is not a death sentence
Gary,
Julie is right. There are hopes out there for GBM, in fact for all brian tumor patients. With all those promising vaccine/gene trials going on, I truly believe some breakthrough is coming soon.
My husband has been dx with GBM for more than 5 months. He had very minimum side effect from all (surgery, radiation, chemo): hair loss, appetite change, taste change, constipation, fatigue, most are improving once the treatment is over. Fatigue is there since he is still on Temodar, but it is manageable.
I echo Julia' suggestions too on taking vaccines. One way to do it is through trials. Here are the link for CDX-110 (the generic one):
http://clinicaltrials.gov/ct2/results?term=cdx-110
For newly dx GBM, it is in phase 3. But you need to act fast because they won't allow any other treatment done other than surgery and radiation.
You can also try to contact Celldex for compassionate use. Not sure how that works out, hopefully it is easier than moving a montain :-)
good luck!
- Jane
great to hear, because most people think of GBM as a death sentence. My dad who is 57 was just recently diagnosed with GBM grade 4. It hit him suddenly with confusion and headaches. He has started radiation 5 days a week for a period of 5 weeks. He is also on Temodar and Steroids at home. So far he is doing ok, just really tired and sleeps alot. This is so scary for us all seeing him sick, he never has been sick before this. The doctors can't operate because it goes all across his brain with satellite lesions. I've had my dad for 35 years and I am not ready to give him up to cancer! My husband fought cancer 5 years ago with leukemia. It is a rough battle. I just hope my dad does well with this.0 -
GBM
I was diagnosed last February with a grade 4 glioblastoma. I was deteriorating very much until I was prescribed Low dose naltrexone. I am now very functional despite radiaton and chemo and the neurosurgery which removed 2.3 cm of a 5.5 tumor. Go to lowdosenaltrexone.org I can't begin to describe my improvement on this inexpensive prescription medication.0 -
Gary,
You don't state your age, but age is a large factor in survival. Generally, elderly people have less survival time than younger people although I believe this is partially due to the fact that they generally have other health issues as well that compound their problems.
Standard radiation such as you are having starts out with small doses which get larger over the course of your therapy. If you were in generally good health prior to your craniotomy expect to have few problems with radiation, at least for the first couple of weeks. As the therapy continues and the radiation doses get larger you can expect fatigue to be the largest side effect. The temodar provided with radiation is low dosage and most people have few issues with it. If nausea becomes an issue there are some really good meds to control it.
Expect to start losing your hair about 3-4 weeks into the radiation therapy. If you have a full head of hair now, you likely won't lose everything and it's common to have a patch or two left depending where the treatment is located. The good news is that you can expect your hair to start coming back about four months after treatment and it's as soft as baby hair. My wife had a patch of hair on her head that didn't come out after radiation and the difference in texture between that remaining hair that had gone through decades of salon treatment, and the new baby-soft hair she got when her hair in other places grew back, was simply unbelievable.
With the exception of fatigue, you should do ok and your quality of life is not likely to be severely affected by the radiation/chemo treatment. Hopefully physical therapy will bring you your arm and leg back in good time. My wife came out of her operation with problems in her left arm and hand, but PT got them back. She did not work during radiation therapy but went back to work less than two weeks after the radiation was complete.
Go to www.gbminfo.com and click on "Statistics -> Patient Progress" to see how other people in numerous age groups are doing with their GBM journeys. My wife was diagnosed in March 2011 and had 90% or better of her tumor resected. We're 10 months out and she's currently doing well, still working full-time, driving again, and functioning at about 90% compared to prior to her diagnosis. Her biggest issue continues to be fatigue, primarily due to Keppra (we believe).
Best of luck. Keep your hope alive!0 -
grade 4 glioblastoma
I am now a 57 year old male.I'm glad to hear you had surgery.My doctor said surgery has got to be the first option. I had surgery for GBM4 on 1 /13/2009 to remove what they could of a 7.5c.m. tumor. I went through the standard 6 weeks of radiation and have been on Temadar ever since that time.I also had Glio wafers at the time of surgery.I am doing very well with little side affects.Maybe the biggest problem being fatigue and minor memory issues.Yes even after 3 years. I am now retired but able to do most things I did before, like mow the lawn and home maintenance just not as much of it at once.
I am still on Temadar and have MRIs every 3 months. All of My MRIs have been good meaning no new growth.My blood counts have also remained good throughout this time on Temadar
Like most everybody else I was told it was inoperable by several doctors in Toledo and at the U of M. Then by the grace of God (3 1/2 weeks later) I ran into Dr.Healy in Toledo Ohio who did the surgery. One bit of advice DON'T GIVE UP HOPE !!!!!!! God does miracles. I am living proof!0 -
Grade 4
My Husband has this same tumor~In October 2011 he was given 7-14 days to live. He took 6 wks of radation in 10 days and recovered the use of his right sidllinge. He is showing signs of being progressivly more tired everyday. He was told the same thing about the odds of rcovey with surgery. The docs did not reccommend surgery as his tumore crossed midline, has taken all of left side of the brain and alot of right side, and ha formed a new one in the frontal area. He decided to not do anything else, but he anti-sesure and another med for swelling and it has helped. It is a hard decion to make, I wish you luck and prayes0 -
grade 4 glioblastomajon4156 said:Gary,
You don't state your age, but age is a large factor in survival. Generally, elderly people have less survival time than younger people although I believe this is partially due to the fact that they generally have other health issues as well that compound their problems.
Standard radiation such as you are having starts out with small doses which get larger over the course of your therapy. If you were in generally good health prior to your craniotomy expect to have few problems with radiation, at least for the first couple of weeks. As the therapy continues and the radiation doses get larger you can expect fatigue to be the largest side effect. The temodar provided with radiation is low dosage and most people have few issues with it. If nausea becomes an issue there are some really good meds to control it.
Expect to start losing your hair about 3-4 weeks into the radiation therapy. If you have a full head of hair now, you likely won't lose everything and it's common to have a patch or two left depending where the treatment is located. The good news is that you can expect your hair to start coming back about four months after treatment and it's as soft as baby hair. My wife had a patch of hair on her head that didn't come out after radiation and the difference in texture between that remaining hair that had gone through decades of salon treatment, and the new baby-soft hair she got when her hair in other places grew back, was simply unbelievable.
With the exception of fatigue, you should do ok and your quality of life is not likely to be severely affected by the radiation/chemo treatment. Hopefully physical therapy will bring you your arm and leg back in good time. My wife came out of her operation with problems in her left arm and hand, but PT got them back. She did not work during radiation therapy but went back to work less than two weeks after the radiation was complete.
Go to www.gbminfo.com and click on "Statistics -> Patient Progress" to see how other people in numerous age groups are doing with their GBM journeys. My wife was diagnosed in March 2011 and had 90% or better of her tumor resected. We're 10 months out and she's currently doing well, still working full-time, driving again, and functioning at about 90% compared to prior to her diagnosis. Her biggest issue continues to be fatigue, primarily due to Keppra (we believe).
Best of luck. Keep your hope alive!
jon:
thanks for the information.you have answered a lot of the questions i had
i am 56 years old and am or was(lol) in excellent physical shape
in fact 3 days before my surgery i was working on an off shore drilling rig of the coast of west africa
being a regular visitor to the rig gym as well as 12hour work days i needed to be fit to perform my job
so hopefully this will help with my recovery
i have begun walking again with a cane,and upper arm strength is returning but no use of had now 3 weeks post op
today was my first day of chemo and radiation
other than some nausea after lunch i still was able to do my 2 hours of physio
so..so far so good ….the journey continues
thanks again for your post
Gary0 -
e DON'T GIVE UP HOPERLR said:grade 4 glioblastoma
I am now a 57 year old male.I'm glad to hear you had surgery.My doctor said surgery has got to be the first option. I had surgery for GBM4 on 1 /13/2009 to remove what they could of a 7.5c.m. tumor. I went through the standard 6 weeks of radiation and have been on Temadar ever since that time.I also had Glio wafers at the time of surgery.I am doing very well with little side affects.Maybe the biggest problem being fatigue and minor memory issues.Yes even after 3 years. I am now retired but able to do most things I did before, like mow the lawn and home maintenance just not as much of it at once.
I am still on Temadar and have MRIs every 3 months. All of My MRIs have been good meaning no new growth.My blood counts have also remained good throughout this time on Temadar
Like most everybody else I was told it was inoperable by several doctors in Toledo and at the U of M. Then by the grace of God (3 1/2 weeks later) I ran into Dr.Healy in Toledo Ohio who did the surgery. One bit of advice DON'T GIVE UP HOPE !!!!!!! God does miracles. I am living proof!
RLR
thats truly great news
i had my diagnoses and surgery done herein bangkok thailand and there was never a question from the doctors here that surgery would be performed
again congratulations on your health
and giving up is something s something i DONT do.
i have remained positive and upbeat and intend to remain so
thanks for your encouragment
all the best to you
Gary0 -
chemo and radiation
Hi, Gary.
My 28 year old son (26 at time of diagnosis) had surgery with 100% resection of visible tumor. After he recovered from surgery, he did 6 weeks of chemo (Temodar) and radiation. Radiation was no picnic, but I would never say that it messed up the quality of his life--certainly not enough to skip doing it. I believe that the radiation added time to his life. Unfortunately he is battling a recurrence now, but I still am very glad that he did radiation, and if we were to do it all over, I'd still want him to do radiation.
The biggest problem from the radiation was the extreme fatigue. Everyone is different and has different responses and side effects, but for David, being so tired all the time was the worst part. He also lost his hair, but it grew back. He tolerated the Temodar pretty well....some stomach aches and "chemo brain"---some sort term memory loss and attention deficit, but that went away after he finished radiation. It took him a few months to recover...he finished the treatments in July, and he felt well enough to go to Disneyland for five days with our whole family in December. We ran all over the place and he did amazingly well. He went back to college and work in September. My son doesn't have any side effects from the radiation that we are aware of.
I'm no doctor, and I don't know how you will respond to radiation and chemo, but I think it would definitely be worth it to add a year or more to your life. You mentioned that you were in good shape...that will be in your favor and should help you tolerate and recover from the radiation and chemo a little easier.
I'm so sorry that you are faced with these decisions. I will be thinking about you and praying for strength and healing for you. Please keep us updated on this website. I care about everyone who is battling brain cancer or who is caring for a loved one who is battling, and it helps to know how others are doing.
Love and blessings to you,
Cindy in Salem, OR0 -
Grade 4 Glio
MY HUSBAND HAS A GRD 4 GLIO. HE WAS DIAGNOSED OCT 13TH 2011~AT MD ANDERSENS IN TEXAS~tHIS WAS A OPINION~HIS IS INOPERABLE - IT CROSSED MIDLINE TO THE OTHER SIDE WHILE WE WERE THERE. HE HAD 6 WKS OF RADIATION IN 10 DAYS TO BUY HIM SOME TIME. HE REGEAINED THE USE OF HIS RIGHT SIDE, BUT WALKS WITH CAUTION. HAS VERY LITTLE BALANCE SO WE WATCH HIM CLOSLY. I SEE SMALL CHANGES TO THE NEGATIVE~AND HE SLEEPS MORE THAN HE DID A MONTH AGO.I AM HIS CAREGIVER SO IT HAS WORN ME OUTA BIT,BUT HIS COMFORT IS IMPORTANT. THE DOCTOR COULDN'T TAKE ANY OF THE TUMOR.0 -
chemo and radiationcindysuetoyou said:chemo and radiation
Hi, Gary.
My 28 year old son (26 at time of diagnosis) had surgery with 100% resection of visible tumor. After he recovered from surgery, he did 6 weeks of chemo (Temodar) and radiation. Radiation was no picnic, but I would never say that it messed up the quality of his life--certainly not enough to skip doing it. I believe that the radiation added time to his life. Unfortunately he is battling a recurrence now, but I still am very glad that he did radiation, and if we were to do it all over, I'd still want him to do radiation.
The biggest problem from the radiation was the extreme fatigue. Everyone is different and has different responses and side effects, but for David, being so tired all the time was the worst part. He also lost his hair, but it grew back. He tolerated the Temodar pretty well....some stomach aches and "chemo brain"---some sort term memory loss and attention deficit, but that went away after he finished radiation. It took him a few months to recover...he finished the treatments in July, and he felt well enough to go to Disneyland for five days with our whole family in December. We ran all over the place and he did amazingly well. He went back to college and work in September. My son doesn't have any side effects from the radiation that we are aware of.
I'm no doctor, and I don't know how you will respond to radiation and chemo, but I think it would definitely be worth it to add a year or more to your life. You mentioned that you were in good shape...that will be in your favor and should help you tolerate and recover from the radiation and chemo a little easier.
I'm so sorry that you are faced with these decisions. I will be thinking about you and praying for strength and healing for you. Please keep us updated on this website. I care about everyone who is battling brain cancer or who is caring for a loved one who is battling, and it helps to know how others are doing.
Love and blessings to you,
Cindy in Salem, OR
cindy;
thank you very much for the information
i decided to go ahead with the induction phase of treatment and have had 3days of chemo and 2 of radiation
with 40 more treatments to go
i will see what change there is in the remaining cancer and make further decisions at that time
agin thanks so much for your kind words of support
gary0 -
Don't give upoma2649 said:Grade 4 Glio
MY HUSBAND HAS A GRD 4 GLIO. HE WAS DIAGNOSED OCT 13TH 2011~AT MD ANDERSENS IN TEXAS~tHIS WAS A OPINION~HIS IS INOPERABLE - IT CROSSED MIDLINE TO THE OTHER SIDE WHILE WE WERE THERE. HE HAD 6 WKS OF RADIATION IN 10 DAYS TO BUY HIM SOME TIME. HE REGEAINED THE USE OF HIS RIGHT SIDE, BUT WALKS WITH CAUTION. HAS VERY LITTLE BALANCE SO WE WATCH HIM CLOSLY. I SEE SMALL CHANGES TO THE NEGATIVE~AND HE SLEEPS MORE THAN HE DID A MONTH AGO.I AM HIS CAREGIVER SO IT HAS WORN ME OUTA BIT,BUT HIS COMFORT IS IMPORTANT. THE DOCTOR COULDN'T TAKE ANY OF THE TUMOR.
My bro was dx with GBM dec 2010, overseas where there was no treatment available. We flew him to Bangkok where 100% of the tumor was resected. He also received radiation, chemo just Like the US protocol and is currently taking Temodar 28/5 cycle for a year. He had minimal sideeffects from chemo especially constipation and overcame that w/ senna and dulcolax. He is enjoying his life and making everyday special.
Fight if u can and don't give up. God is in charge afterall.
For Hope0 -
Don't give upoma2649 said:Grade 4 Glio
MY HUSBAND HAS A GRD 4 GLIO. HE WAS DIAGNOSED OCT 13TH 2011~AT MD ANDERSENS IN TEXAS~tHIS WAS A OPINION~HIS IS INOPERABLE - IT CROSSED MIDLINE TO THE OTHER SIDE WHILE WE WERE THERE. HE HAD 6 WKS OF RADIATION IN 10 DAYS TO BUY HIM SOME TIME. HE REGEAINED THE USE OF HIS RIGHT SIDE, BUT WALKS WITH CAUTION. HAS VERY LITTLE BALANCE SO WE WATCH HIM CLOSLY. I SEE SMALL CHANGES TO THE NEGATIVE~AND HE SLEEPS MORE THAN HE DID A MONTH AGO.I AM HIS CAREGIVER SO IT HAS WORN ME OUTA BIT,BUT HIS COMFORT IS IMPORTANT. THE DOCTOR COULDN'T TAKE ANY OF THE TUMOR.
My bro was dx with GBM dec 2010, overseas where there was no treatment available. We flew him to Bangkok where 100% of the tumor was resected. He also received radiation, chemo just Like the US protocol and is currently taking Temodar 28/5 cycle for a year. He had minimal sideeffects from chemo especially constipation and overcame that w/ senna and dulcolax. He is enjoying his life and making everyday special.
Fight if u can and don't give up. God is in charge afterall.
For Hope0 -
Don't give upForHope said:Don't give up
My bro was dx with GBM dec 2010, overseas where there was no treatment available. We flew him to Bangkok where 100% of the tumor was resected. He also received radiation, chemo just Like the US protocol and is currently taking Temodar 28/5 cycle for a year. He had minimal sideeffects from chemo especially constipation and overcame that w/ senna and dulcolax. He is enjoying his life and making everyday special.
Fight if u can and don't give up. God is in charge afterall.
For Hope
did he go to the Bumrungrad in Bangkok
thats where i am .its a terrific hospital
i was working offshore in ivory coast west africa.flow from rig to local hospital where ct showed the tumour. and flew here
within 24hours of arrival i had mri ,ct scan ,and surgery with near total removal of tumour
now at day 8 of chemo and radiation,with 30 more to go..
regaining my strength ,up walking ..and most important keeping my spirits high and a smile on my face
i hate to disagree but I am in charge
Gary0
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