Glioblastoma Stage IV

JCM2468

zz1960 said:

hi to all gbm survivors
just to let you all know I was diagnosed in june 2006 and after back and forth investigating a non aoperable grade 3 oligo something forgot the namr exactly found out that indeed the tumor is operable always good to get a second opinion had the operation sept 2006 biopsy came out the wors i can imagine gbm grade 4 I was 46 at the time I did the standard 6 weeks radiation with low dose temodar ( or as we call it in Canada temodal)
after that went to high dose temodar 5 days on 25 days off , I hated doing that with a passion and dreded every time it came around doing it I had side affects such as dizzyness and weakness. had a couple of siezures as well was put on different anti siezure meds lost my lisence for a year which was so hard because without driving I had a very hard time coping 15 months later I told the oncologist that I could not handle it anymore so he let me take a 3 month break which acually turned into a 1 year break and since my MRI'S were clean the break continued till today ,I do not take any chemo only the antisiezure meds which i am used to by now I still take an MRI every 3 months but still clean no sign of anything returning, so who knows? Maybe i am one of the few lucky ones , I heard that today
many more people are doing well like me. so do not dispair all of you out there with this terrible curse. Be positive and pray to god daily. By the way i have no special diet. I eat just the way I did before which for my own good I should change. but just to prove a point, has nothing to do with it , If your time is up no matter what you do will not help.

GBM Grade 4
Hi,
My father was diagnosed in July this year with Glioblastoma Grade 4 Tumour, He had 100% of it removed and has had no symptoms since and seems 10 years younger, Although he is supposed to be doing Radiation and Chemo soon, He is trying to find as many stories as possible of people that havent done it, as he is not stoked on the idea and really DOES NOT want to do any treatment, He has been doing all the natural possible things, Meditation, Strict Diets etc. and Now is due to start treatment in a week or so, Would you suggest that treatment made it worse, cause thats what he seems to think. As some people say treatment can sometimes turn the cancer more aggresive and just prolong the prognosis? Do you think treatment was making it worse for you?

janellie

4theloveofmysis said:

janellie
Let me first say I am so sorry that you are on this road we are traveling too. My sister too has inoperable GMB 4. It seens like its is forever waiting to treatment to start. As far as the weakness get a hold of the doctor right away. Swelling in the brain can cause this too we started on decadron and the weakness went away the sooner its treated the better. How big is his tumor and where is it? My prayer are with you.

inoperable GBM
Hi, Thank you so much for your reply. IT has been a couple weeks since my posting and so much has happened and unfortunately not much that is good. My dad came home yesterday after a month in the hospital. He walked in and was wheeled out. Since he is inoperable with his tumor deep in the thalamus area and well over 4cm he is no candidate for gamma. He finally starts radiation tomorrow so it will be almost 4 weeks to his admission/diagnosis. He is on decadron and has been since the first day in the hospital but it is shocking to see how quickly he has lost all awareness and most of the use of his left side. His leg and foot are cold, it drags along, he forgets where it is, his arm is flopping around and we have to tell him constantly to try and be aware of them. I would say his Karnofsky performance is about a 40?.....he cannot stand alone, and only use small assistance from a walker with guided assistance from someone else, cannot transfer on his own and has fallen twice since he has come home yesterday. He cannot be left alone and on top of all of this is in complete denial of his situation. A physicians assistant told him he would have 2 to 7 years, and I just do not believe this and haven't found any evidence of someone at his age, inoperable and with such low function of having such survival times.....

We feel we will need hospice in the near future but how do we make such a call when he doesn't even understand what he is dealing with. He thinks he will "have the radiation, shrink this tumor and I will get back to normal, ride my bike, play golf and go hunting...." I cannot imagine decadron or radiation getting him back to normal....do you have any suggestions on how to handle this and doesn't it seem inconceivable that technicians and PA's would be telling him that he has years?????

So confused and frustrated.....if there is anyway to contact me outside of this I would appreciate it....I do not seem to get an email update that there are comments here and desperately need someone in the similar situation to talk with....I am happy for families who are able to have surgery and exhaust all treatment options, but it just seems much more bleak when surgery is taken off the table....thank you and you can reach me at janelliewest@yahoo.com

J

4theloveofmysis

janellie said:

inoperable GBM
Hi, Thank you so much for your reply. IT has been a couple weeks since my posting and so much has happened and unfortunately not much that is good. My dad came home yesterday after a month in the hospital. He walked in and was wheeled out. Since he is inoperable with his tumor deep in the thalamus area and well over 4cm he is no candidate for gamma. He finally starts radiation tomorrow so it will be almost 4 weeks to his admission/diagnosis. He is on decadron and has been since the first day in the hospital but it is shocking to see how quickly he has lost all awareness and most of the use of his left side. His leg and foot are cold, it drags along, he forgets where it is, his arm is flopping around and we have to tell him constantly to try and be aware of them. I would say his Karnofsky performance is about a 40?.....he cannot stand alone, and only use small assistance from a walker with guided assistance from someone else, cannot transfer on his own and has fallen twice since he has come home yesterday. He cannot be left alone and on top of all of this is in complete denial of his situation. A physicians assistant told him he would have 2 to 7 years, and I just do not believe this and haven't found any evidence of someone at his age, inoperable and with such low function of having such survival times.....

We feel we will need hospice in the near future but how do we make such a call when he doesn't even understand what he is dealing with. He thinks he will "have the radiation, shrink this tumor and I will get back to normal, ride my bike, play golf and go hunting...." I cannot imagine decadron or radiation getting him back to normal....do you have any suggestions on how to handle this and doesn't it seem inconceivable that technicians and PA's would be telling him that he has years?????

So confused and frustrated.....if there is anyway to contact me outside of this I would appreciate it....I do not seem to get an email update that there are comments here and desperately need someone in the similar situation to talk with....I am happy for families who are able to have surgery and exhaust all treatment options, but it just seems much more bleak when surgery is taken off the table....thank you and you can reach me at janelliewest@yahoo.com

J

Janellie
Im so sorry, I really do know how you feel. My heart goes out to you. I am having a very hard time of it too we are 7 months into this and it has been so hard we just dont seem to be getting any break with this.I dont understand why the PA said that with GBM did he misunderstand? I know at the beginning the doctor told my sister it was treatable and people live for years. My sister said ok and we went home. She took it as we can cure it and everything was going to be ok. I was crying and telling her I cant lose my sister and she said Im going to do everthing to beat this. She didnt hear what she didnt want to hear. A week later the same doctor put out that damn 15 month time limit. My sister was shocked.
7th months later the doctor says today he wants to revisit the idea of surgery. My Dad says you think its going to cure it now. I just didnt know what to say.Dont get me wrong I do have hope I will always pray for a miracle and keep fighting this fight with my sister as long as she wants to. She is my best friend and I cant even think about life without her. Wow that is so hard to even write...
I will pray for you and your Dad. Why did he stay so long in the hospital? Why did they admit him? Once radiation and chemo starts there is a little feeling of relief. They are doing something the waiting is hard.
Take care

connsteele

janellie said:

inoperable GBM
Hi, Thank you so much for your reply. IT has been a couple weeks since my posting and so much has happened and unfortunately not much that is good. My dad came home yesterday after a month in the hospital. He walked in and was wheeled out. Since he is inoperable with his tumor deep in the thalamus area and well over 4cm he is no candidate for gamma. He finally starts radiation tomorrow so it will be almost 4 weeks to his admission/diagnosis. He is on decadron and has been since the first day in the hospital but it is shocking to see how quickly he has lost all awareness and most of the use of his left side. His leg and foot are cold, it drags along, he forgets where it is, his arm is flopping around and we have to tell him constantly to try and be aware of them. I would say his Karnofsky performance is about a 40?.....he cannot stand alone, and only use small assistance from a walker with guided assistance from someone else, cannot transfer on his own and has fallen twice since he has come home yesterday. He cannot be left alone and on top of all of this is in complete denial of his situation. A physicians assistant told him he would have 2 to 7 years, and I just do not believe this and haven't found any evidence of someone at his age, inoperable and with such low function of having such survival times.....

We feel we will need hospice in the near future but how do we make such a call when he doesn't even understand what he is dealing with. He thinks he will "have the radiation, shrink this tumor and I will get back to normal, ride my bike, play golf and go hunting...." I cannot imagine decadron or radiation getting him back to normal....do you have any suggestions on how to handle this and doesn't it seem inconceivable that technicians and PA's would be telling him that he has years?????

So confused and frustrated.....if there is anyway to contact me outside of this I would appreciate it....I do not seem to get an email update that there are comments here and desperately need someone in the similar situation to talk with....I am happy for families who are able to have surgery and exhaust all treatment options, but it just seems much more bleak when surgery is taken off the table....thank you and you can reach me at janelliewest@yahoo.com

J

Timeframes
First, I am so sorry you are going through this with your dad. I know how hard it is. We are caretaking our 34 year old son for AA3/GBM, dx 4-13-11. After his surgery to debulk the biggest of the multiple tumors (rest our inoperable as they have multiple infiltrative "fingers"), he was better. Even worked for a few half days. But once we started radiation, he went downhill real fast. The radiation doc did say that during treatment, symptoms would get worse before they got better. How true. It was really hard on him. Got to where he couldn't walk or do anything on his own, including bathroom, dressing, and sometimes even feeding himself. Now, we are about 8 weeks post radiation and he is doing much better, but still not to the level he was before radiation. At one point during radiation, he was on 24 mg of decadron, which was awful. Thank goodness, he is now off that evil drug. At the time of dx he was living alone in the DC area, but after ending radiation, we had to move him back home with us in Ohio as he can't live alone. As I said, he is doing better. Now, he uses a walker/cane to get around in the house, and a wheelchair for longer outings at stores, etc. His speech has improved as well, but still some fine motor deficits and vision problems.

Upon getting his medical records for the transfer to Ohio, it was a surprise reading over his records. When he was so bad during the radiation, the docs apparently were considering taking him off treatment and bringing in hospice. They never mentioned that to us. At no time, even at the initial dx, did they ever give us a timeline as to how much time he had. Did you bring up the question or did your son's doc offer that on his/her own?

At some level, I'd like a timeframe, but on another, I don't. It is what it is, and we have to play the hand we're dealt.

Please take care of yourselves as well. I know how stressful it is as a caretaker. Caretaker fatigue is real.

janellie

4theloveofmysis said:

Janellie
Im so sorry, I really do know how you feel. My heart goes out to you. I am having a very hard time of it too we are 7 months into this and it has been so hard we just dont seem to be getting any break with this.I dont understand why the PA said that with GBM did he misunderstand? I know at the beginning the doctor told my sister it was treatable and people live for years. My sister said ok and we went home. She took it as we can cure it and everything was going to be ok. I was crying and telling her I cant lose my sister and she said Im going to do everthing to beat this. She didnt hear what she didnt want to hear. A week later the same doctor put out that damn 15 month time limit. My sister was shocked.
7th months later the doctor says today he wants to revisit the idea of surgery. My Dad says you think its going to cure it now. I just didnt know what to say.Dont get me wrong I do have hope I will always pray for a miracle and keep fighting this fight with my sister as long as she wants to. She is my best friend and I cant even think about life without her. Wow that is so hard to even write...
I will pray for you and your Dad. Why did he stay so long in the hospital? Why did they admit him? Once radiation and chemo starts there is a little feeling of relief. They are doing something the waiting is hard.
Take care

4theloveofmysis,
I'm curious if your sister had surgery? I thought she didn't but this site is difficult to navigate so I cannot seem to find your story and comments in one general area....after seven months how is her condition? Does she seem stable, mobile and alert?....My dad is very alert and his mind is good but physically he is so weak. The reason they kept him in the hospital so long is that he literally couldn't stand up after 8 days in there. He walked in but after the biopsy and a couple days in bed he rapidly lost the use of his left side and even just a few weeks more his left leg is very limp and he has to focus very much to move his hand and move his leg....I just do not understand how that will come back. No one has told us 15 months or really even the 8. I just know that my best friends mother had the same tumor size almost same location, inoperable and she did the same treatment my dad is and she was gone in 7 months....in addition to that she was physically better she was taking walks during her early days of radiation and getting out and staying mobile.

Last night was a bad night for him and he fell, had a terrible potty accident and is just really struggling to stand and transfer from chair to couch, chair to bed, chair to toilet. I cannot envision where he will be when radiation makes him weaker and decadron increases....how will he stand then? How will I get him to radiation?....This is just mind numbing....I will say though, that when I am with him I feel like the CEO of a new company, I'm all business, very focused, doing the work, making the calls and telling him things he needs to do even if he doesn't want to hear it.

J

thebrother

madisonmuzz said:

so sorry
Hi Beckymarie. I totally understand the rollercoaster feeling you and your children are facing. My husband was diagnosed with a GBM Grave IV December 27, 2010. He is doing really well right now with the Avastin Chemotherapy. Up until we started the Avastin it has been a huge rollercoaster of emotions. To make matters worse, my dad passed away in February unexpectedly of a Pulmonary Embolism. Talk about a rush of emotions!

I am so sorry to hear he is gone now. How are you doing? How about your children? I am so dreading the day when the oncologist tells us there is nothing else they can do. I know that day will come, but I am praying it is not for a while. I have an acquaintance in North Carolina whom has been my life line. He is going through a GBM Grade IV but he is 5 1/2 years out from surgery. Doing well. I continue to pray this will be my husbnad.

Please know there are many people who share your pain and roller coaster of emotions. Please know if you need to talk I am here for you. Just contact me. email address is jls2@roadrunner.com.

God bless.
Leslie

any support would make a difference
Hi, my brother in law was just diagnosed with an inoperable GM tumor and my sister and I are preparing ourselves. I read your post and it seemed the most hopeful story of the few I have read. Where are you now with things and what can you offer a family member as they enter the beginning of this particular journey.