Looking for gliosarcoma survivors

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Looking for gliosarcoma survivors

by angeluv13043 on Sat Dec 27, 2014 05:38 AM

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Hello. My husband was dx with stage 4  gliosarcoma, (a rare form of the glios) in October 2014 and underwent surgery on November 14th. He has been in rehab for 6 weeks and due to come home January 6th.He was given a 6-12 month life expectancy and told it will definately come back with a vengence, and that chemo and radiation may give him an extra 6 months. If anyone is surviving this monster, I would love to hear from you.

RE: Looking for gliosarcoma survivors

by kat54 on Thu Jan 01, 2015 04:27 PM

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Angeluv,

I am sorry for your husband's diagnosis.  I just want to encourage you not to get too focused on statistics and prognosis.  Jan. 1993 I was told 6-9 months diagnosis with GBMIV.  In May 1995 my family was told not to expect me to live through the weekend.  My diagnosis was confirmed by Johns Hopkins, MD Anderson, Dana Farber and Brighem & Women's in Boston. 

Only God knows when we will go home.  I did radiation and stereotactic radiosurgery and had surgery in 1993 followed by second surgery in 1995.  no chemo because back then it could not cross the brain blood barrier.

click on my name to read my full story  and profile.  Concentrate on positive thinking, lots of prayer and living each day to the fullest.  Expect extreme fatigue.  The brain has been traumatized.

Prayers your husband will find successful treatment and for the strength you both will need to fight this terrible battle. kathleen

RE: Looking for gliosarcoma survivors

by angeluv13043 on Thu Jan 01, 2015 04:54 PM

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On Jan 01, 2015 4:27 PM kat54 wrote:

Angeluv,

I am sorry for your husband's diagnosis.  I just want to encourage you not to get too focused on statistics and prognosis.  Jan. 1993 I was told 6-9 months diagnosis with GBMIV.  In May 1995 my family was told not to expect me to live through the weekend.  My diagnosis was confirmed by Johns Hopkins, MD Anderson, Dana Farber and Brighem & Women's in Boston. 

Only God knows when we will go home.  I did radiation and stereotactic radiosurgery and had surgery in 1993 followed by second surgery in 1995.  no chemo because back then it could not cross the brain blood barrier.

click on my name to read my full story  and profile.  Concentrate on positive thinking, lots of prayer and living each day to the fullest.  Expect extreme fatigue.  The brain has been traumatized.

Prayers your husband will find successful treatment and for the strength you both will need to fight this terrible battle. kathleen

Kathleen, Oh THANK YOU for responding, and a Happy New year to you! You are the first long term survivor to respond to me. I had begun to believe they are sadly no longer with us. Tomorrow, I bring him home from rehab center where he has been regaining some strength and we begin our journey toward surviving. No MRI since November 16, two days after his surgery where it showed clear with only a few blood clots remaining. I am so hoping this BEAST has not started to come back already.

I can hardly wait to take my Kindle tablet to his room today and read him your posts. Hope is so important to survival.I am looking forward to staying in touch with you during our journey for continued encouragement. Did you do any supplements or any diets that you believe were especially effective? God bless you!

Vivian

RE: Looking for gliosarcoma survivors

by katbaran on Sat Jan 10, 2015 04:09 PM

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My husband started out with GBMIV, had his first surgery and all was well for about 9 months. He had some seizures in that 9th month and had 2 new tumors that together, were about the same size as the first one had been and in the same place. After the surgery, we were told the pathology of the tumors had changed to Gliosarcoma. That was in early March of '14. He did a drug trial, and went downhill from there. He passed in late August of '14 from a pulmonary embolism. I was talking to another woman on here who's husband had Gliosarcoma and he did not last even as long as my husband.

Gliosarcoma is ugly and fast. I hope the best for you both. Statistics are just that. Not everyone follows the same time line. Youth also seems to effect how well one does with it. I hope to read that he does well and lives much longer than projected.

Kathy

RE: Looking for gliosarcoma survivors

by rbernacki on Sat Jan 10, 2015 04:48 PM

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Hello - Sorry you and your husband are going through this - it's horrible to have doctors tell you these numbers.  July 2011 they gave me 11mos.  Well still here, they don't know - I hope you have looked into Wilson 2007 great guidline from a long term survivor!  You can fight this, Ketogenic diet a big help to starve the cancer cells!!

Put your Hope in God!  God Bless.

RE: Looking for gliosarcoma survivors

by angeluv13043 on Tue Jan 13, 2015 04:22 AM

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On Jan 10, 2015 4:48 PM rbernacki wrote:

Hello - Sorry you and your husband are going through this - it's horrible to have doctors tell you these numbers.  July 2011 they gave me 11mos.  Well still here, they don't know - I hope you have looked into Wilson 2007 great guidline from a long term survivor!  You can fight this, Ketogenic diet a big help to starve the cancer cells!!

Put your Hope in God!  God Bless.

Hello..this is so encouraging about your survival . How is your energy level and physicals ability ? My hubby came home from rehab on last Tuesday, able to walk to and from bathroom with his cane for three days and suddenly had pain in left foot and couldn't walk. To ER Saturday night. I feared the "beast" was already coming back but a CT scan showed the area clear. He was admitted for tests and they suspect a mini stroke. They started him on Heparin.What frightens me is that the horrible trauma to his body as a whole from the surgery at his age that if the tumor doesn't come back and kill him, another sudden physical problem may.

RE: Looking for gliosarcoma survivors

by Patiwalton on Wed Jan 14, 2015 04:15 AM

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I'm so sorry about your husbands diagnosis. My husband was diagnosed with Gliosarcoma in April 2014. We were told he had 12 to 14 months. I must have been in denial because I really believed we could beat this monster. He lived for 5 months and passed away in September. This disease is horrible but there is a survivor that have been in contact with. Her name is Suanne Zankowski from Canada. I wrote her while my husband was alive and she has had gliosarcoma for a few years. Unfortunately, I only heard back from her a few weeks ago. The good thing is that she is still alive. You can google her name and write her. I hope your husband survives this. Best to you, Pati

RE: Looking for gliosarcoma survivors

by Miles22 on Tue Feb 27, 2018 06:01 PM

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I was diagnosed on Feb 8th last year and had surgery on Feb 9th of stage 4 gliosarcoma. I was given 3 months but I needed more time to see my youngest sons graduation and enjoy more days with my wife and family. I bought into the Ketogenic diet to eliminate sugar and carbs to need feed cancer cells.

I found a naturopath who added two mushroom pills known as Turkey Tail and Lions Mane as well as omega 3, tumeric, and Boswella (spelling?). After 6 weeks of radiation and daily chemo I followed with 5 months of more chemo until it was taking away to much from the quality of my life so I stopped.

I do wear the novacure optune device daily that sends electromagnetic through my brain to stop cancer cells ability to split.

Another path I have followed is to lift and run everyday to stay in top physical shape.

The last thing I have to say about fighting cancer is be up for the challenge and fight with everything you have available and belief that you can win the battle with a positive outlook. I had a news article done about my belief

http://www.kdrv.com/content/news/One-Year-After-Brain-Cancer

Love life and fight cancer

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