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Gliosarcoma - Please Comment with your experiences

HollieRene
Posts: 3
Joined: Mar 2010

Hello to everyone! On February 19, 2010, my dad was diagnosed with Gliosarcoma. At first the doctors said it was Glioblastoma, but now they are saying it is Gliosarcoma. He had a crainomoty on March 24th. Most of the tumor was removed, and 8 wafers were placed in the cavity where the tumor was. He was to begin his radiation and chemo on March 18th, but he had a horrible stomach virus, nothing to do with his surgery or anything...it is just going around. He began his chemo and radiation yesterday, March 22, 2010 and all went well. My dad is only 57 years old and so full of life. He never really showed any symptoms of having brain cancer. The ONLY sign he showed was confusion. Three weeks before he was admitted to the hospital he was "confused" for about 3 hours in one day. He could not remember the events of the day, but he thought he was just exhausted from working so much. Then, on the 19th of February, this confusion hit again and his co-workers called and asked me to come to his work. I did and he seemed just fine, he just said once again, he was tired and wanted to go home and go to bed. Thank God one of his other co-workers came to his house and insisted that he go to the hospital because she thought he was having a stroke..that is when this all began. So far, with everything he has been through, he has done excellent. We were told he would be in ICU for 5 to 7 days, he was in ICU for maybe 20 hours. We were told he would be on a venilator for possibly 14 days, he was never on a venilator. We were told his staples could/would come out in 2 weeks, they were out in 5 days and his scar has healed nicely. Even the doctors seemed impressed at how fast and how well his surgery site had healed and also at how soon they were able to remove his staples. Our family is keeping all hope and all faith that things will keep going as they have been. I would just like some support with all of this from someone who has experienced it. This is all so new and so shocking to everyone of us. Please help. Any advice, stories or whatever, is welcome. Thank you so much for reading. Hollie

HollieRene
Posts: 3
Joined: Mar 2010

craniotomy - I spelled it wrong :o(

JessicaLynnAyala
Posts: 1
Joined: Oct 2010

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
Posts: 2
Joined: Sep 2012

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.

goodgirl13043
Posts: 6
Joined: Dec 2014

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
Posts: 404
Joined: Jun 2012
goodgirl13043
Posts: 6
Joined: Dec 2014

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?

Ashok Kumar
Posts: 1
Joined: Mar 2018

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.

CraigB
Posts: 2
Joined: Sep 2012

Hi Hollie. 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?

amron
Posts: 15
Joined: Feb 2012

Hi, my name is Thelma Villamor. My mom was diagnosed last January 2012. Just like your dad she was confused and weak. Most of the days she was sleeping, but you always hope for the best. You tried holding on even though deep inside your scared. She wasn't just a mother to me, she's my bestfriend. My life revolves around her. She was on medication, and was about to start chemo and radiation. May 11, 2012, just one day after my daughters 11th b-day we found her unconscious, she was admitted that same day. evrsince it was like she's in a coma. Watching her slowly pass away was the most hardest thing for me. I developed depression and anxiety. June 4, 2012, i lost my mom. Just writing this and thinking all those days in the hospital is triggering my panic attacks. I feel so lost and empty. I don't know how to let go, i love her so much.

Im so sorry for telling you my story, i will pray for your dad. When someone in your family was dianosed with cancer, evrything in your life changes. Everytime i hear someone is fighting this horrible desease, it feels like you're connected to them. You feel what they feel. I wish and pray that your dad gets better, keep fighting don't ever lose hope.

thelma villamor
canada

JCee
Posts: 4
Joined: Mar 2017

Anyone out there?

Willapa
Posts: 2
Joined: May 2018

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

Dragonfly007
Posts: 1
Joined: May 2018

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
Posts: 2
Joined: May 2018

That's fantastic news Dragonfly, I was 40 yrs old in 2012 and had my first craniotomy a complete resection, I think it helps to be younger.  6 weeks of combined chemo and radiation was enough for me and opted for alternative medicine and lifestyle change.  That bought me another 5 years and had my 2nd craniotomy in 2017 and found it much more difficult than the first.  I also used medical marijuana during chemo and it helped smooth the way, so to speak.  Except for my 2 seizures preceeding each surgery I have been symptom free, other than some side effects of anxiety and sleeplessness, which have been manageable  I believe your comments of courage and hope are the most important, i.e. whatever treatment you decide to go with have absolute faith in.  We are out here surviving.  Wishing you and yours the best.

 

texhammer
Posts: 2
Joined: Jun 2018

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.  

 

Lmm5341
Posts: 1
Joined: Oct 2018

Hi Brian, 

My dad was diagnosed in December with a gliosarcoma grade 4. He had surgery and had the whole mass removed. He did radiation and chemo for 5 weeks and the Temodar  for 5 days every 28 days. He has been feeling great until recently. In August his tumor did come back so we have started iv chemo as well. Over this past weekend he had confusion and memory losts so we called the doctor and they put him on steroids, first time ever, he has regained most his memory and confusion almost gone. I would love to talk to you more about your experience and what you did to help live for so many years. 

 

Lauren 

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