Just got Diagnosis, GBM - Holding On.

Rachael18

Hello all,

This past week, my father who is 56 years old was diagnosed with Glioblastoma Multiforme (GBM). He went in on Tuesday and had his brain surgery Wednesday to removed two tumors in the frontal lobe. They were able to get most of one and none of the second because it was inoperable. By the next day, he was up and walking! The doctors say he is as strong as an ox. We have not yet to begin radiation and chemo. We were up at UPMC Hospital in Pittsburgh, PA. Can anyone give me some advice on what is the best treatments to prolong his life?

Thank you,
Rachael

4theloveofmysis

gmb4
Im so sorry to here about your father. They do the standard treatment radiation, and temador, some doctors will add avastin. This is what they offer up. If he starts having weakness on one side of his body ( due to swelling in the brain) they will add decadron.Sending hugs and prayers your way.
Brenda

Hope4MYDAD

Hope
Sorry to hear about your fathers diagnoses. My father is 51 years old and was diagnosed with the same Brain tumor on Dec. 26th 2010 , The doctors gave him 2 years to live at the most. Told us be would be lucky to make it that long. Usually people whom have this cancer live between 6months-15 months. So we've been told. My father had a 5cm brain tumor located in his frontal right lobe. Before this , he was healthy as an ox as well. Never suffered from sickness, always ate properly, never smoked a day in his life , barely ever drank. All he did was work from the time he was a teenager til now.
He showed symptoms of something being wrong when he wasnt able to make converstation or would repeat himself over and over again. Couldnt remember where he left things or what he did. I pushed for him to go to the hospital for nearly 2 weeks before ( on boxing day) he finally agreed to go, which I think honestly he knew something was wrong but wanted to put it off til after christmas. Anyways the he underwent surgery 2 days after being in the hospital the doctors removed everything visible to the eye. He took Temador & did radiation for 6 weeks. Then they had a break of both, then want back to taking chemo pills for 5 days out of the month for 6 months. Throughtout the time he was getting MRI's every 2 months.
Our hearts all dropped when we recieved this news, we were all very devasted. Im 25 years old and I couldnt imagine my life without my father. Im too young and so is he to not be around.......... I stayed home & was his main caregiver for the first few months of chemo/radiation. Just to make sure he was eating right and taking his meds etc. I made sure he ate 3 meals a day, as well as got out and enjoyed the sun and nice weather when we had it. We would go on walks and drives ... We kept ourselves busy, He was a lucky one while taking the chemo, he didnt suffer from any sickness even when they upped the dose. He barely lost any of his hair and never lost any weight, actually he gained a few pounds. which most people will usually lose it. The entire time he was taking Hemp pills -3 times a day, along with vitamin C, and sulfur pills 2-times a day. We went to a naturopathic doctor who suggested he take this combo. They look into the natural drugs rather then the ones full of chemicals.
My dad would have his down days just like everyone else who is suffering from this, there was a time when he said he didnt want to do and go through this anymore.. But I sat there and told him when I was little he wouldnt let me give up (playing sports) without a fight and if I wanted to win , I had to fight harder........ and those exact words are what I told him...if he wants to beat this, then hes gotta fight harder.. He wouldnt let me give up and I sure as hell will not let him either. The doctors told us that if he plans to go home and lay in bed and wait to die, he will.. but if he goes home and tells himself everyday hes gonna beat this , then he will.. they said its a lot of mental convincing. So the best thing to do is stay positive and tell your father hes not to give up , there is hope and there are treatments , and if he can think positive.. positive will happen.. no one ever won a battle without fighting for it.......
My dad is a prime example, hes had MRI'S every 2 months since his diagnoses Dec.2th 2010, and since then hes had clean MRI'S , no sign of regrowth no nothing.. Hes stopped working, but has kept himself busy growing a garden, building a wood shed in our yard, fourwheeling, managing a baseball team, going on vacations... and just enjoying his life, if you didnt know him, you would never know he was sick.. His doctors have been so surprized with how well he is doing, they said whatever hes doing to keep doing it cause its working.... Dec. 26th 2012 will be the 2 years mark they gave him, although they said they would be surprized if he made it that long...........we are only a few months short of his 2 year mark, and I tell ya.. hes a very stubborn and determined man, he said the world isnt ready for him to leave yet..................Just keep your father thinking positive, and be strong for him as he will need it on his down days........
good luck & all the best wishes to you and your family

Rachael18

Hope4MYDAD said:

Hope
Sorry to hear about your fathers diagnoses. My father is 51 years old and was diagnosed with the same Brain tumor on Dec. 26th 2010 , The doctors gave him 2 years to live at the most. Told us be would be lucky to make it that long. Usually people whom have this cancer live between 6months-15 months. So we've been told. My father had a 5cm brain tumor located in his frontal right lobe. Before this , he was healthy as an ox as well. Never suffered from sickness, always ate properly, never smoked a day in his life , barely ever drank. All he did was work from the time he was a teenager til now.
He showed symptoms of something being wrong when he wasnt able to make converstation or would repeat himself over and over again. Couldnt remember where he left things or what he did. I pushed for him to go to the hospital for nearly 2 weeks before ( on boxing day) he finally agreed to go, which I think honestly he knew something was wrong but wanted to put it off til after christmas. Anyways the he underwent surgery 2 days after being in the hospital the doctors removed everything visible to the eye. He took Temador & did radiation for 6 weeks. Then they had a break of both, then want back to taking chemo pills for 5 days out of the month for 6 months. Throughtout the time he was getting MRI's every 2 months.
Our hearts all dropped when we recieved this news, we were all very devasted. Im 25 years old and I couldnt imagine my life without my father. Im too young and so is he to not be around.......... I stayed home & was his main caregiver for the first few months of chemo/radiation. Just to make sure he was eating right and taking his meds etc. I made sure he ate 3 meals a day, as well as got out and enjoyed the sun and nice weather when we had it. We would go on walks and drives ... We kept ourselves busy, He was a lucky one while taking the chemo, he didnt suffer from any sickness even when they upped the dose. He barely lost any of his hair and never lost any weight, actually he gained a few pounds. which most people will usually lose it. The entire time he was taking Hemp pills -3 times a day, along with vitamin C, and sulfur pills 2-times a day. We went to a naturopathic doctor who suggested he take this combo. They look into the natural drugs rather then the ones full of chemicals.
My dad would have his down days just like everyone else who is suffering from this, there was a time when he said he didnt want to do and go through this anymore.. But I sat there and told him when I was little he wouldnt let me give up (playing sports) without a fight and if I wanted to win , I had to fight harder........ and those exact words are what I told him...if he wants to beat this, then hes gotta fight harder.. He wouldnt let me give up and I sure as hell will not let him either. The doctors told us that if he plans to go home and lay in bed and wait to die, he will.. but if he goes home and tells himself everyday hes gonna beat this , then he will.. they said its a lot of mental convincing. So the best thing to do is stay positive and tell your father hes not to give up , there is hope and there are treatments , and if he can think positive.. positive will happen.. no one ever won a battle without fighting for it.......
My dad is a prime example, hes had MRI'S every 2 months since his diagnoses Dec.2th 2010, and since then hes had clean MRI'S , no sign of regrowth no nothing.. Hes stopped working, but has kept himself busy growing a garden, building a wood shed in our yard, fourwheeling, managing a baseball team, going on vacations... and just enjoying his life, if you didnt know him, you would never know he was sick.. His doctors have been so surprized with how well he is doing, they said whatever hes doing to keep doing it cause its working.... Dec. 26th 2012 will be the 2 years mark they gave him, although they said they would be surprized if he made it that long...........we are only a few months short of his 2 year mark, and I tell ya.. hes a very stubborn and determined man, he said the world isnt ready for him to leave yet..................Just keep your father thinking positive, and be strong for him as he will need it on his down days........
good luck & all the best wishes to you and your family

Hope,

I can deeply relate to your story. I'm 24 and I'm getting married in 4 months. Hearing your story so inspires me to help encouraging my father every step. I'm going to go to a faith based counselor this week to try to maintain a more supportive attitude for him. I would love to exchange emails possibly to have some support if you are interested.

Did your father have a difficult time coping with the diagnosis or did he just seem calm? My father is playing very calm and firm at this point.My mother is very emotional and I feel at times it brings him down. It's only been 5 days since the diagnosis, but I want to stay maintaining a strong positive attitude towards beating this as soon as possible. Did you endure these types of struggles with your family?

I would appreciate any advice you could provide.

Blessing to you and your father! Stay strong and let's not be a statistic!

Rachael18

4theloveofmysis said:

gmb4
Im so sorry to here about your father. They do the standard treatment radiation, and temador, some doctors will add avastin. This is what they offer up. If he starts having weakness on one side of his body ( due to swelling in the brain) they will add decadron.Sending hugs and prayers your way.
Brenda

GMB 4
Thank you so much for your thoughts. My father is on that treatment plan now and is currently on decadron for swelling. I'm looking into some clinical trails - have you been looking into it? If so, have you found anyone that looks like they are making progressions towards curing this monster?

Hope4MYDAD

Rachael18 said:

Hope,

I can deeply relate to your story. I'm 24 and I'm getting married in 4 months. Hearing your story so inspires me to help encouraging my father every step. I'm going to go to a faith based counselor this week to try to maintain a more supportive attitude for him. I would love to exchange emails possibly to have some support if you are interested.

Did your father have a difficult time coping with the diagnosis or did he just seem calm? My father is playing very calm and firm at this point.My mother is very emotional and I feel at times it brings him down. It's only been 5 days since the diagnosis, but I want to stay maintaining a strong positive attitude towards beating this as soon as possible. Did you endure these types of struggles with your family?

I would appreciate any advice you could provide.

Blessing to you and your father! Stay strong and let's not be a statistic!

Hi ,
I would love to exchange emails. Its always good to have someone to talk to about this kind of stuff. Exspecially when we are going through the same thing. No one honestly knows what its like until it happens to them.

At first my dad put on his "tough guy" attitude and acted as if nothing was bothering him. But I know him like the back of my hand, and it was a "state" of shock he was going through which very well could be what your father is going through as well. He did this for the first couple of weeks. Then eventually he did break down, emotionally & mentally he finally faced the reality of it all. He had his days when he would cry , or would just be "off" as I would call it. Its just that hes always been the " strongest" mentally, emotionally etc out of our family besides myself... so for him to break down ,and show emotion was hard for him to do. Ive only ever seen him cry maybe 3 times in my entire life.
My mother like yours, was a mess & was a mess for about the whole first year of this happening. Its only now that shes finally " ok" with it all. Cause I have told her , it is what it is, we cant do anything to change it.. whatever will take place , will take place all we can do is pray. which eventually she kept telling herself this, and now she seems to be " coping"...
When my dad was realeased from the hospital only 2 days after his major surgery, I stayed home for the first year with him & my mom went back to work ( only because she needed something to keep her mind offa things) which in one sense it did help, but she works at a bank so she had a lot of people coming in and asking her how things were, which was kinda hard at first.. but that will all pass by. There will be stages of sadness and depression that you may all experience. I didnt go and see a Therapist, but I was too the point of considering it.
You need to totally just take yourself out of the situation somedays, and not let it take over your own life, yes you want to be there for your dad, and be as strong as you can be for him.. and spend time with him as much as you can.... which is fine, but one main thing is to not let this cancer consume you... You need to have days for you, and do things for you.. Believe me Im only speaking from my own experience, I was to the point of mental breakdown, then I said I needed a break... I took off for a couple days, let my mind cool a bit..had some me time, collected my thoughts and emotions, then back home I went... and til this very day, I do the same thing every so often. ( I live with my parents , moved home to help out)

You bascially just need to be as strong as you can for your dad, he will feel your strenght.. make sure he gets out and gets fresh air & sun. I found on the rainy days and cold days.. my dad didnt have much motivation... so its important to get him out as much as possible, to keep his motivation going , plus the sun realeases stuff into your body to help maintain a healthy body. So Its good all around.

Have you guys considered going to see a naturopathic doctor? my dad sees his regularly. Suggests that he takes more natural rememdies , rather then chemical filled pills. Has your dad started chemo ? radiation? if so how is he doing? is the chemo pill form or IV? what has the doctors said about his next steps? have they given him a time lenght for life? Is he having surgery to remove the tumor? is his primary brain cancer or is it located somewheres else and spread to his brain?


the email I use is donzie18@hotmail.com , feel free to write me on there and we can talk , I say a prayer for your dad when I say one for mine every night.

Hope4MYDAD

Hope4MYDAD said:

Hi ,
I would love to exchange emails. Its always good to have someone to talk to about this kind of stuff. Exspecially when we are going through the same thing. No one honestly knows what its like until it happens to them.

At first my dad put on his "tough guy" attitude and acted as if nothing was bothering him. But I know him like the back of my hand, and it was a "state" of shock he was going through which very well could be what your father is going through as well. He did this for the first couple of weeks. Then eventually he did break down, emotionally & mentally he finally faced the reality of it all. He had his days when he would cry , or would just be "off" as I would call it. Its just that hes always been the " strongest" mentally, emotionally etc out of our family besides myself... so for him to break down ,and show emotion was hard for him to do. Ive only ever seen him cry maybe 3 times in my entire life.
My mother like yours, was a mess & was a mess for about the whole first year of this happening. Its only now that shes finally " ok" with it all. Cause I have told her , it is what it is, we cant do anything to change it.. whatever will take place , will take place all we can do is pray. which eventually she kept telling herself this, and now she seems to be " coping"...
When my dad was realeased from the hospital only 2 days after his major surgery, I stayed home for the first year with him & my mom went back to work ( only because she needed something to keep her mind offa things) which in one sense it did help, but she works at a bank so she had a lot of people coming in and asking her how things were, which was kinda hard at first.. but that will all pass by. There will be stages of sadness and depression that you may all experience. I didnt go and see a Therapist, but I was too the point of considering it.
You need to totally just take yourself out of the situation somedays, and not let it take over your own life, yes you want to be there for your dad, and be as strong as you can be for him.. and spend time with him as much as you can.... which is fine, but one main thing is to not let this cancer consume you... You need to have days for you, and do things for you.. Believe me Im only speaking from my own experience, I was to the point of mental breakdown, then I said I needed a break... I took off for a couple days, let my mind cool a bit..had some me time, collected my thoughts and emotions, then back home I went... and til this very day, I do the same thing every so often. ( I live with my parents , moved home to help out)

You bascially just need to be as strong as you can for your dad, he will feel your strenght.. make sure he gets out and gets fresh air & sun. I found on the rainy days and cold days.. my dad didnt have much motivation... so its important to get him out as much as possible, to keep his motivation going , plus the sun realeases stuff into your body to help maintain a healthy body. So Its good all around.

Have you guys considered going to see a naturopathic doctor? my dad sees his regularly. Suggests that he takes more natural rememdies , rather then chemical filled pills. Has your dad started chemo ? radiation? if so how is he doing? is the chemo pill form or IV? what has the doctors said about his next steps? have they given him a time lenght for life? Is he having surgery to remove the tumor? is his primary brain cancer or is it located somewheres else and spread to his brain?


the email I use is donzie18@hotmail.com , feel free to write me on there and we can talk , I say a prayer for your dad when I say one for mine every night.

I see that you stated he had surgery and was only able to remove some of 1 tumor and none of the other?

Beckymarie

Advances in treating GBM
There is an article in the Sunday Boston Globe (June 10 p. A11) about new therapies that are being developed to treat GBM. The article refers to two California-based biotech companies: ImmunoCellular Therapeutics Ltd and Tocagen, Inc. that are creating drugs to fight this form of cancer. It is a very informative article. My husband lost his battle with this cancer two years ago. Although it breaks my heart that there was so little hope for him, I am very happy that there are some gains being made.

labales

My husband was diagnosed
My husband was diagnosed August 28, 2011 with GBM and died 23 days later of a brain hemorrhage. He was treated with Avastin 2 days before he died. He was 61. Those 23 days were precious to me, as I knew I was losing him. The GBM was throughout both sides of the brain and throughout the ventricles. It was inoperable. New therapies are being developed all the time, and some very smart people have dedicated their life to fighting this disease.
Glioblastoma broke my heart, I hate it. Good Luck

peppergirl2314

GBM
Rachael,
I am sorry to hear of your father's cancer. This is a very aggressive cancer as you probably know. My husband was 56 when they diagnosed his in Dec 2010. His was stage 4 glioblastoma and they removed a plum size tumor from his right frontal lobe. Seems the posts I read about brain cancer is that so many are found on the right frontal lobe. Just wondering if there is any significance to it. Anyway, my husband under went full head radiation and temador while taking radiation but unfortunately the doctors some how dropped the ball in getting that to him immediately starting with radiation-so he missed the first three weeks of temador. My advice based on experience is that you make sure the doctors are listening to you and not just using their position of medical ranking to intimidate or brush you off. The normal routine seems to be first to remove the tumor, full head radiation and temador for six weeks then a maintaince dose of temador after that. There is a man who has survived this exact cancer since 2004. www.jerrykline.com He lives in Dallas and he has been aggressive in his own treatments and has MRI's every 6 weeks to keep on top of any potential new growth since it can grow so quickly. Avastin is another drug they use to keep the cancer from finding a blood supply that it needs to grow. Our doctors didn't encourage MRI's every 6 weeks after radiation because they said you wouldn't get a good read due to inflammation from the radiation BUT you need to insist! There are chemo companies that will give you their products just need to ask for assistance from your pharmacy or the oncologist. Unfortunately my husband was given the typical 14 to 16 month survival and he passed away in Dec 2011. He had sepsis (MRSA) and I feel he did not recieve the proper treatment for that which hastened his death. However you do not need to feel your dad can not survive this because many have!!! Do not be surprised if your dad's personality seems to change, this is common with this kind of cancer. I don't know if you are a believer, but I know that the only way I got through this was with my Lord and Savior's strength, I could not have done it without God.
Diann