hello, just found this site

chrispiss · New User Joined: 09 Aug 2007 Posts: 6

Hi everyone, I just found this site. It's the first I've found for cancer discussion.. I guess let me introduce myself:

My name is Chris, I'm 24. I was diagnosed with a grade II astrocytoma in march 2007. It was about 2" x 1" somewhere behind my left eye in the front lobe. I had been having headaches in the upper right side of my head, only to find out that they were unrelated to the tumor. So a CT and MRI later I found out there's a tumor in there, lucky me! On June 25th, I had surgery to remove it. They were able to get about half of it out because of all the blood vessels in the area which my doctor said could cause paralysis, stroke, and speech problems if they were damaged.

So now here I am. I have to make a decision on what to do next, radiation or chemo. Whichever one I choose will start at the end of this month. I'm kind of freaked out. From what the doctors have said, my astro looks like it won't react to the chemo as well as others because of gene deletions or something, I didn't really understand it. Radiation on the other hand seems to be the standard, and it's fairly straightforward sounding. I'm not going to lie, I'm freaked out about having a big patch of bald on the side of my head, especially when I go back to work. And the thought of only having a 50% chance of it growing back scares me even more.

Anyway, that's my story. I'm glad I found a forum like this. It's hard to talk about this stuff in person with people, even my wife. So hopefully a forum will be easier to handle. Smile

Chris

brainman · Posted: Thu Aug 09, 2007 9:00 am Post subject: Re: hello, just found this site

Hi Chris, if you follow the link in my signature block, you will see how remarkably similar our stories are. I too had and astrocytoma grade II. However, that is probably where the similarities end. Mine was in 1992 when I was 38 years old. It was almost on the top of my head, on the left side, and further back than yours... right on the surface of the brain. And it was the size of a quarter and that thin as a quarter too. When the doctors did the biopsy, it was with my full consent to debulk it. However, when the doctor actual examined the location, he too concluded that it would do more damage than to remove all of it. I opted for only chemotherapy because, as my radiologist said, radiation could cause as much damage as the surgery could. I would recommend that you talk very honestly and openly with your medical team. The location of your cancer might be safer to irradiate than mine.

I was on PCV for a couple of months when I noticed some slight loss of feeling in my toes. After tests, it was determined that the Vincristine (the "V" in PCV) was causing neuropathy, so they discontinued the Vincristine. However, by that point my MRIs where showing no sign of living cancer cells, only necrotic cells and scarring where they did the biopsy was observed. I would be lying if I said 1993 was easy... far from it. I was hospitalized 2 times for pneumonia before they finally said that they had done enough and should stop before they killed me.

I was fortunate to be working in the hospital with oncology patients and therefore to know all of the staff, doctors, and administrators. My boss was very understanding. Since I was a salaried worker, it did not matter when I worked. Therefore, if I needed time off, I could always work on Saturday or Sunday or at nighttime to make it up. As part of my duties, I also attended the weekly tumor conferences, so I knew a little more about what I was facing than the average person. In addition, I made good use of the hospital's medical library and librarian, reading all I could about gliomas. Mostly, I learned what questions I needed to ask my doctors. Knowing what you don't know is the first step toward learning.

I knew that if I made it for 10 years, I would be in the minority (at least according to the 1992-1993 statistics for any glioma). I made it for over 14 years (mid 2005) before it recurred. This time is was a grade III and was described as an oligodendroglioma. I don't know if the first time the pathologist just misdiagnosed me or what happened. Both are gliomas and it does not make any difference as to the treatment. The recurrence was in the same place as the original (as was expected) and it was larger 2cm wide, 5cm long, 1cm deep. This time, it had to be surgically removed. It is going on 2 years and I am still here. I do have significant right arm and hand weakness and the potential for seizures.

I guess what I am taking so long to say is:

1. Learn all you can
2. Ask as many questions as you have
3. Don't believe in statistics... I am living proof that people can and do survive this cancer.
4. Live every day as if it was your last because it might be (for any of us whether or not we have cancer).
5. Start keeping a medical journal. Write all your questions and the answers you receive in it. Write your medications in it. Etceteras.

I will be thinking about and praying for you. Keep us informed.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

chrispiss · New User Joined: 09 Aug 2007 Posts: 6

Thanks for your message brainman. I have a question for you after reading your story. Is PCV/CCNV still used? My neuro oncologist hasn't mentioned anything except temodar. It sounds like it's worked well for you, other than making you sick. Also, do you know anything about the genetic makeup of your original tumor? Specifically, did it have the 1p-19q gene deletion? Apparently mine does not, which statistically says it won't respond as favorably to chemo. Anyway..thank you for your prayers, and thank you for running this site Smile

Chris

brainman · Posted: Fri Aug 10, 2007 3:29 pm Post subject: Re: hello, just found this site

Yes, PCV is still widely uses... especially outside of the USA. However, temodar has replaced PCV as the first option in most cases. As for the genetic markers, in 1992 that was not studied so I do not know what results I would have had. In 2005, they did check for that gene deletion but I honestly do not ever remember hearing the results. Something I will ask at the end of August when I have my next MRI Very Happy

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

chrispiss · New User Joined: 09 Aug 2007 Posts: 6

I've researched PCV a little bit, and I'm not really sure what exactly it is, it sounds like three different treatments? Can you explain this a little more? Also, I don't know how much you know about different chemos, but do you know if Temodar replaced it because it's more effective? I'm meeting with my neuro oncologist in about a week to ask, but I just want to know now, ya know? Smile

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