Stage 4 thalamic glioblastoma

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Stage 4 thalamic glioblastoma

by Chrissyb33 on Wed Apr 18, 2018 01:47 AM

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Hello! My 37 year old husband was diagnosed with a stage 4 thalamic glioblastoma a few weeks ago. He underwent a stereotactic biopsy and developed a subdural hematoma 12 hours later. They removed a skull flap and he is now off the ventilator. He began to improve, smiling and following some commands but he didn’t talk yet. The last few days his mental status has declined and the surgeon is thinking it might be related to the bone flap. Looking to replace it this week. Our original goal was radiation and chemo but we need to get through this first obstacle. Does anyone have any suggestions or similar stories? Anything would help. I’m at a loss but trying to stay positive! Chrissy

RE: Stage 4 thalamic glioblastoma

by ksavage523 on Thu Apr 19, 2018 05:22 PM

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Chrissy, 

What hospital are you at? I had aGrade III Oligodendrogliomas in 2010 when I was 32 years old. 95% was removed by surgery and I went through 6 weeks of radiation and 2 years of Chemo. To this day I am still cancer free.  It is in Gods hands but I encourage you to seek out reaserch hospitals. I am not sure where you are located but if you want PM me if you are in the North East I could reccomend some surgeons and neuro oncologist to speak with. 

Stay positive, new treatments are being discovered every year. You and your husband will be in my prayers.

Ken

RE: Stage 4 thalamic glioblastoma

by Chrissyb33 on Thu Apr 19, 2018 05:39 PM

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Hi Ken! That is awesome news and reassuring that you are cancer free!! We are currently in upstate, ny... Syracuse. My husband just went to surgery today to replace the skull bone flap they needed to remove after he developed the subdural hematoma. Then hopefully he will recover and progress to be healthy enough to start treatment. The tumor is a glioblastoma stage 4 that was negative for IDH mutation. We are told they can’t remove it due to the location. It is in the thalamus and touching the temporal and midbrain. I am sending his records to other facilities for second opinion - Sloan Kettering and Barrows in Arizona. Where did you go for treatment and recommend? Thank you for your replies ! I look forward to hearing back from you. Chrissy

RE: Stage 4 thalamic glioblastoma

by McC00 on Thu May 03, 2018 01:19 AM

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Hello, I saw your post.I am from Syracuse to, my best friend was diagnosed with GBM4 in the Thalamus back in 2009, inoperable. We sent the films to Duke, Sloan Kettering, Houston, Dana Farber in Boston. They all said we would get the same treatment here in Syracuse. He was unable to get into any trials, but you can keep trying. There are a lot of new things out there, Dana Farber Center for Neuro-Oncology is kind of close, and they are doing some great research there. Dr.David Reardon, I believe is one of top doctors for GBM at Dana Farber. Thoughts and prayers are with you and your husband.

RE: Stage 4 thalamic glioblastoma

by Chrissyb33 on Fri Feb 15, 2019 05:08 PM

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Thank you for your kind words and encouragement. Unfortunately my husband passed in August. I wish you the best with your friend, and my thoughts are with you! Barrow's in Arizona is another great place if your friend is still looking.

Thank you!

Chrissy

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