Gliosarcoma - Please Comment with your experiences

JessicaLynnAyala said:

Gliosarcoma
My dad, only 39, has just been diagnosed with this type of cancer aswell (stage IV)...It doesnt look good. But like your dad, he is just so full of life...and I am just holding on to whatever positive side there is. Please please keep me up to date about your dad. Thank you for sharing your story. Its is comforting to know im not in this alone. Ill be praying.

Jessica

CraigB said:

Gliosarcoma
Hi Jessica. I was diagnosed with gliosarcoma about 1 month ago. I had surgery at that time to remove a lot of the tumour, and will go in to have cyberknife treatment next week, probably. How is your dad going? I haven't heard a lot of psitive news about this particular type of brain cancer.

My beloved 70 year old husband was diagnosed with a brain tumor on his right frontal lobe in October 2014 from an MRI. The neuro surgeon said he was 99% sure it was benign but needed to come out asap because of the beginning of mobility loss on his left side, similar to a stroke victim. With those odds, we agreed for him to have the very invasive crainiotomy. After 6 hours in surgery the surgeon came to talk to me and broke the news of it not being as he had expected, and that it had come out in pieces and he had to work with a microscope, but had gotten it all. He had a second MRI two days after surgery while in ICU and it showed all gone. my husband's recovery was very slow in rehab. possibly largely due to his advanced age, but was beginning to walk to bathroom slowly with a cane and could raise himself from a sitting position very slowly. Until the surgery my husband was very active and still working and had never spent the night in a hospital in his life. He only got a physical check up every 6 months or so and his bp and blood work was amazing for his age. It seems this surgery has robbed him of all his strength. Last week we went for his staple removal and the surgeon told him the lab results had come back from Mayo clinic and is gliosarcoma grade 4 , similar to glioblastoma, and treated the same way with no cure and no hope of survival. He said this cancer is very aggressive and it WILL come back and when it does it will be with a vengence! He pronounced a death sentence of about 6 months, and with treatment maybe a year. That night, my husband could not even sit up alone and was verbaly unresponsive to me, almost like his hope and life was gone. I could not lift him onto bedside commode and resorted to depends. Finally, I placed him in a nursing rehab facility yesterday, in hope that they can work with him to help him in regaining some fighting strength. My heart is breaking. We are devout believers and there are so many people praying for him, but this doctor took away his last thread of hope with his tough prouncement. We have a 5 year old grandaughter that we have raised from an infant and his worst fear was leaving us. We are still considering the chemo radiation treatments to buy the additional 6 months. We have been since the diagnosis trying to follow a whole food diet, no dairy or beef, flaxseed oil (the budwig diet) but at this point, I am desperate to find anyone at all who has survived this monster for longer than a year with any quality of life that I can share with him to give him some thread of hope for longer than a year. Anyone...PLEASE!

manwithnoname said:

here

http://csn.cancer.org/node/275033

2014-12-16 Thanks for the info. Encouraging! It seems the problem with doctors is their hesitancy to listen to new ideas. It is almost as if they enjoy their spirit of doom and pronouncement of no hope. I will present this info. to the doctors and beg them to consider it. After all, what is there to lose?

goodgirl13043 said:

gliosarcoma brain tumor

My beloved 70 year old husband was diagnosed with a brain tumor on his right frontal lobe in October 2014 from an MRI. The neuro surgeon said he was 99% sure it was benign but needed to come out asap because of the beginning of mobility loss on his left side, similar to a stroke victim. With those odds, we agreed for him to have the very invasive crainiotomy. After 6 hours in surgery the surgeon came to talk to me and broke the news of it not being as he had expected, and that it had come out in pieces and he had to work with a microscope, but had gotten it all. He had a second MRI two days after surgery while in ICU and it showed all gone. my husband's recovery was very slow in rehab. possibly largely due to his advanced age, but was beginning to walk to bathroom slowly with a cane and could raise himself from a sitting position very slowly. Until the surgery my husband was very active and still working and had never spent the night in a hospital in his life. He only got a physical check up every 6 months or so and his bp and blood work was amazing for his age. It seems this surgery has robbed him of all his strength. Last week we went for his staple removal and the surgeon told him the lab results had come back from Mayo clinic and is gliosarcoma grade 4 , similar to glioblastoma, and treated the same way with no cure and no hope of survival. He said this cancer is very aggressive and it WILL come back and when it does it will be with a vengence! He pronounced a death sentence of about 6 months, and with treatment maybe a year. That night, my husband could not even sit up alone and was verbaly unresponsive to me, almost like his hope and life was gone. I could not lift him onto bedside commode and resorted to depends. Finally, I placed him in a nursing rehab facility yesterday, in hope that they can work with him to help him in regaining some fighting strength. My heart is breaking. We are devout believers and there are so many people praying for him, but this doctor took away his last thread of hope with his tough prouncement. We have a 5 year old grandaughter that we have raised from an infant and his worst fear was leaving us. We are still considering the chemo radiation treatments to buy the additional 6 months. We have been since the diagnosis trying to follow a whole food diet, no dairy or beef, flaxseed oil (the budwig diet) but at this point, I am desperate to find anyone at all who has survived this monster for longer than a year with any quality of life that I can share with him to give him some thread of hope for longer than a year. Anyone...PLEASE!

Hi ,

My daddy is having a same problem. Can you please tell me about the treatment which you have done or did you get any imporvement of the given treatment.

Willapa said:

GLIOSARCOMA - I'M STILL HERE

Hello,

I've just joined CSN today and this is my 1st comment.  This July will be 6 years since my diagnosis of Gliosarcoma stage 4, grade 4.  There is a lot we could talk about if you are interested.  Brian

My husband was diagnosed with Gliosarcoma stage IV last July at the age of 43.  He subsequently had a craniotomy and approximately 60% of the tumor was dissected.  He was discharge within 24 hours of the surgery and suffered a brain bleed / stroke 10 days later.  Another craniotomy was preformed to repair the bleed.  He was given 2 weeks to 2 months to live.  This all sounds awful as I am sure you have experienced the same if not similar diagnostic outcomes.  However, it is almost a year later and he is doing really well.  There are no ill effects from the surgeries or stroke.  There have been other hurdles he has met (dvt, renal / kidney failure) but he has met them all with courage and hope and managed to clear them all.  He does combine prescribed medicinal marijuana with his chemotherapy treatment and I believe that has been very relevant in both his state of mind and physical wellbeing.  I love hearing stories of other fighters / survivors of Gliosarcoma and their advocates.  It is important to stay strong and connected.

Willapa said:

GLIOSARCOMA - I'M STILL HERE

Hello,

I've just joined CSN today and this is my 1st comment.  This July will be 6 years since my diagnosis of Gliosarcoma stage 4, grade 4.  There is a lot we could talk about if you are interested.  Brian

Hi Brian,

My wife is fighting gliosarcoma and about to begin taking the chemo pill in conjunction with radiation.  I'm reading all I can about proton vs. photon radiation treatments and seeking advice from anyone who has fought this rare brain cancer.  I hope this note finds you winning the battle.  

Willapa said:

GLIOSARCOMA - I'M STILL HERE

Hello,

I've just joined CSN today and this is my 1st comment.  This July will be 6 years since my diagnosis of Gliosarcoma stage 4, grade 4.  There is a lot we could talk about if you are interested.  Brian

Hi Brian - 

How are you doing now? 

My dad (66) has just been diagnosed with GSM and we haven't yet come out of the shock and scrnabling to know what's out there that helps. Could you / anyone out there post your experiences of survivorship please? 

Thanks

Arpitha

As of July 4th, I've survived 10 years. Life is good , although there have been many changes physically. There is hope !