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Inoperable GBM Brain Tumor that Refuses to Shrink

oceanmermaid
Posts: 2
Joined: Sep 2011

Hello Beth, and everyone else who might be able to help me out very quickly since time is of the essence, and I am desperately looking for a forever solution. Beth, could you please email me the information for the doctor in Kosovo that you located? I would really appreciate this, and hopefully it may even save my dad's life.

My parents and I are really close, and I cannot imagine not having them in my life. I have a lot of internal problems, and I am not able to have children so they are my everything. I almost lost my mother who is my best friend last year to heart disease, and now I am faced with possibly losing my dad who has always been my provider and protector growing up. My dad is 66 years old, used to be a strong and healthy man, was still working up to the day of his seizure, and has never had a headache in his whole life. It is breaking my mom's and my heart to watch my dad gradually decline with his mental capacity and watching him get so emotional and start crying. Now, he mutters to himself saying that he is losing his mind, is really scared and does not want to live in this condition. Our lives suddenly changed, and took a turn for the worse when he had his first seizure out in his garden. He was life flighted this past June, and a MRI diagnosed him with GBM Stage 4. He had a biopsy procedure, and after it was completed, my dad looked and acted completely different, and it caused his tumor to spread out wider. The brain surgeon told us that his tumor is inoperable because it is deeply rooted in a dangerous location that involves speech and language skills. He also told us my dad only has about 4-6 months to live:(

We only got 1 opinion so far, and I would like to get several more because I have read other stories of brain tumor survivors who had their tumors removed completely in the same location. My dad just finished six weeks of radiation combined with chemotherapy. We have not received any successful results at this point. During radiation, he had some MRI's which actually showed that his tumor grew 50% bigger after starting radiation/chemotherapy. This has been such discouraging news for all of us because the radiation portion was not effective or beneficial for his needs. He is fighting to live in one breath, and wants to die in another breath. He is still taking the pill version Temodar for his chemotherapy, but he is going to be starting a 28 day cycle process since it will be a stronger and more powerful dose. He will take Temodar M-F, and then not take another one for 3 or 4 weeks again. However, the Temodar is not working either with this stubborn tumor.

Also, not sure if this is related to his tumor, but on a daily basis and sometimes many times throughout the day his fingers slip out of joint and cross over one another. His fingers lock up and when it happens, he cannot do anything. He tries running cold water over them, but it does not work. He also tries warm water, and he says it only hurts worse. He also gets almost on a nightly basis horrendous leg cramps which has him rolling around and moaning in extreme pain until they go away. Has anyone else experienced these problems with brain cancer? We are not sure if the tumor is causing these things to happen to him or if they are small seizures along the way?

This monster has changed my dad's life forever because his personality is changing, he is burning lots of items that he was saving for years, he cannot take his own pills without assistance, wanders and gets lost easily, forgets to turn off the water when he is finished, he cannot measure anymore, and he certainly cannot drive a vehicle anymore because of his lack of perception and judgement. We were told that his next step may involve taking Avastin since his tumor is growing bigger, and Avastin starves the tumors growth. I would like to get him involved in a clinical trial after I find out by other surgeons if his tumor can be removed. I feel there is a better chance for him to be cured and survive if I can find the right surgeon to remove it completely without any detrimental issues or side effects. If anyone would like to share any new research, advice or has specialist recommendations, please feel free to contact me at my email address which is:theoceanmermaid@hotmail.com

Good luck to everyone on this brain cancer site, and may God lead researchers and scientists to finding a cure in the near future. I will keep all of your stories in my prayers.

mighty6
Posts: 47
Joined: Sep 2011

Sorry to hear your dad's story. have you tried this device:
NovoTTF-100A

It seems to help to gain you quality life...

Good luck for everyone on this forum!

connsteele
Posts: 232
Joined: May 2011

So sorry to hear about you dad. Things are really early in your process so don't think that what's necessarily happening now will be forever.
I'm curious as to why they did an MRI while on radiation. When our son was on radiation, his symptoms (ie, speech, gait, etc.) got worse, something they said would happen ("things will get worse before they get better").

He had his first post-radiation MRI three weeks after finishing, and they said that was even too early to tell what was really going on. His docs said too soon after radiation, you can't tell if what you're seeing on the image is from tumor or effects of radiation, that it can take 1-2 months after radiation, for things to cool down enough, to really get a clear picture.

Have they said the same to you?

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