One patient with glioblastoma still alive nine years later
by Just1footin on Sat Nov 17, 2012 06:42 AM
Well, my friends call me Rufio and I found this site a few months back. I peek in every once in a while but this is my first contribution to the site besides coming up with a screen name for it. I guess I am at a point where I need feedback and want to try and helpout anyone else. First off I have 3 gliomas located in the pons structure of the brainstem that was for lack of a better phrase desribed as rare Adult Brain Stem Gliomas to me since they are usually found in children or elderly. Classified as Focal Tectal Gliomas and I believe Stage III grade tumors. My doctor would probably stroke if he read this since I act, let's just say less than enthused at appointments. About to have another round of chemo and rad in January, which brings me back to why I felt like I should start a discussion. My best friend just told me that he's putting together a small benefit show for me locally to help me out with expenses. Gonna have a few local bands at a local bar in December. Honestly, since I was diagnosed following a car accident I have been pretty bi-polar about my condition. I'll take it serious for a while then miss appointments and get annoyed at lack of progress and basically shut down. My friend is going so far out of their way to help me that if I dont start helping myself more than I'm spitting on what they're doing for me. Everybody always asks me what stage I am in and that gets annoying trying to explain that there's not really stage's and they're based on grade and progression of tumors. But I suppose I'm not telling anyone here anything new. Went from being a 27 yr old healthy and athletic man laying hardwood floors and meeting with friends to kick around a footbag to a 29 yr old sleepy, weak, and out of work man with the worst headaches I never knew could get so bad. Been looking into CTCA centers and been on NCI's site checking into clinical trials. I guess it would be nice to talk to someone in a similar situation rather than just talking to my friend's, bless their hearts for trying to comfort me, that have no idea what I'm going through. Not really sure what happens from here, but I hope to get a message from someone. And if anyone has participated or had a close one participate in clinical trials I would appreciate any feed back about them too. God Bless
by bilbosgirl on Sat Nov 17, 2012 11:56 AM
My husband's diagnosis is not the same as yours, he has glioblastoma. He is in a clinical trial, we just stumbled into it by dumb luck.
But I have since found out about http://clinicaltrials.gov
Hope this helps.
by siblingof on Sat Nov 17, 2012 01:02 PM
by Just1footin on Sat Nov 17, 2012 02:28 PM
Thank you for your feedback and my heart goes out to you and your husband. I will definately check out the site and I hope all goes well with the clinical trial. One question, are clinical trials more about learning and getting information to help the individuals or more about getting numbers crunched to help the masses. I have alot more research to do on this subject myself I see. Have a blessed day.
by Just1footin on Sat Nov 17, 2012 02:43 PM
Thanks for the feedback and sorry to hear about your sister's bad experience with the second trial. Hope she is doing better now and I wish her the best. Honestly most of my closest friends have been really awesome and had my back and I'm even finding out that my community is filled with great people that are willing to support a complete stranger in a time of need. If your sister ever gets on this site please have her drop me a line. Regardless, give her my best and keep your head up for her.
by jon4156 on Sat Nov 17, 2012 09:49 PM
Hello Rufio. Brain Stem Glioma is definitely more rare in adults with 75% of cases occuring at ages under 20. It's great that you have friends supporting you, but how about family? Given your self-described bi-polar attitude I think you would benefit greatly if there were a friend or family member you trusted enough to be a caregiver. Your "bi-polar(ness)" may in fact be the cancer affecting you and it's nice to have a third party advocating for you who can go to doctor appointments, take notes, ask questions, etc. You definitely want to keep on top of things and it is often difficult for a patient to do so when they are dealing with fatigue, mood swings, and other issues.
by diane23 on Sat Nov 17, 2012 09:57 PM
I'm not sure I understand well your situation, but I have an oligodendroglioma grade 3, and it's the first time I write on this site. I've been on chemo for 7 months now after I've had an operation to take out the tumor. Before the surgery, I had terrible headaches and I wonder if it would be possible for you to have an operation. I have no more headaches since the surgery. Maybe it would help you if it's possible in your case. I'm from Quebec in Canada. I wish you get better and please take care of yourself.
by Just1footin on Sun Nov 18, 2012 02:53 AM
I have never really had any family jon. Lived with my step father growing up but was basically raised by my friends parents. Never knew my birth parents and never made any ground on finding them. I have heard that personalities can change with my condition but you're right an outside opinion could benefit me. I'm just not sure if I could ask anyone of my friends to get that involved in my life. My friend that is putting on the show for me not only let me be the guy on couch for a little while but he also has three kids one of which he has split custody. I have lived most my life counting on just myself. Maybe not the best way to be but it's really all I know. Thanks for the feedback.
by Just1footin on Sun Nov 18, 2012 03:08 AM
There is another patient at the hospital and I believe they have a similar diagnosis as you but maybe grade 2. Because of the location of my tumors on the brain stem surgery isn't really an option at this point. Maybe if chemo and rad treatments shrink them more but even then because of the cluster being where they are in the pons region of my brain stem, that the Endoscopic Endonasal approach doesn't hold a high success rate at all. I'm happy to hear from someone else that is new to the site and I hope Di that you'll keep in touch. So you're in remission and they got out most of or all the tumor? I know how hard chemo is I have had treatments on and off for almost 2 and a half years. Right now I am on a little break and start back treatments in Jan. I have always had long hair and the treatments haven't made me completely bald but at times pretty spotty and thinned out my hair alot. Best wishes Di and God bless.
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