Well at least I know now why I had another seizure. As many of you probably have heard I have another tumor growth which has shown up. I just talked to my Oncologist at about 10 this morning so every thing is still really new.
What I am going to say is not easy to say and it does not mean that I giving in or giving up. The truth is the clock is now ticking. I’m trying to be realistic.
The chemotherapy that I was doing is not effective. If it was, another tumor would not have started to grow. Another surgery may be an option, I’m not sure at this point. My Oncologist would like to try radiation to see what it can do, but we did not do radiation in the first place because the site of the tumor was in the radiation field from last time and it is not proven effective to use multiple times in the same field.
I am seeing if I am eligible for a clinical trial at Duke. If so I would have another surgery so they could study the tumor and work up a vaccine to treat whatever cells were left after surgery. This seems like the option with the highest probability of having an impact, but it is by no means a sure thing and I may not even be a candidate.
I will continue to do whatever is reasonable to try to beat this but everyone should realize that the odds are not in my favor this time. My Neurologist and Oncologist, whom I have a lot of faith in, are out of reassuring answers regarding treatments that have worked for a large number of others. They are making suggestions about what they want to try.
None of this has been fair or pleasant. I came into this fight with my head held high and I plan on continuing that way and leaving that way. Part of that is continuing to fight and to try any treatment that seems reasonable. I don’t want to spend my time being sad or angry, even though I am. I’m so sorry if me saying this really hurts or upsets people but I just want everyone to know the truth about what’s going on.
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4 comments:
You are an incredible man. I love you.
Another friend of mine got GBM around the same time your first tumor came. He did the clinical trial at Duke. So far his scans have been clear since finishing the trial and he has been cancer free. I am praying for you and hoping that you can either get into that trial or that Dr. Q. will figure out another way. Stay positive. We are all behind you.
Buddy-
Not sure if I have ever shared with you that my dad had a brain tumor in the late 70's, about the size of a grapefruit. Doctors didn't believe he was alive never mind funtioning. Back then, all they knew to do was cut it out and hope. To this day, he suffers from a seizure disorder caused by the brain tumor. It can be somewhat debilitating. In the late 90's he spent a year at Shands for elective surgery but it did not take. He swore he would never willingly go into surgery again.
Why do I share this with you? Because I continue to share your fight with him and he recently has elected to have surgery to try and limit the amount of seizures. I think a large part is the insipiration of your fight. So I THANK YOU.
I know your post last week was a frustration, I've seen it with my own father. I know that you're a fighter and you won't give up. We are with you and behind you. God Bless you. The world of medicine has come a long way from the late 70's and I pray they can help you beat this awful disease.
If you ever need to vent, scream, cry, or just talk, don't hesitate.
VTL,
Albert
You deserve the peace you achieve when running. While I can't run with you,I'd drive my car & follow you so if you had a seizure you would have someone to take care of you...not a great offer but, all I've got right now.
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