One patient with glioblastoma still alive nine years later
by whippetlady on Tue Oct 30, 2012 02:52 PM
Im new here. I was diagnosed in July. Stage 1 only 1 tumor. Had surgery in Charlotte Sept 17th with Da Vinci robot. Back to work Oct 22 full time. They caught it because Im an ex lab tech and positive for hep b and c; so, I made sure I was scanned every year. Now Im on cisplatin and gemzar for 6 mo probably. Im very positive that I will be fine for a good long time; but, Im certainly aware that it could recur at anytime and Im ready for a fight if necessary. I have made a ton of lifesyle changes and always get lots of exercise anyway. Use to compete in triathalons.
Im praying for everyone here who is having a really hard time. Unfortunately, it is usually found so late and hard to treat. I feel very fortunate. I did hear of someone who is still good at 6.5 years!!!!!
by omabina on Thu Nov 01, 2012 03:16 AM
Hi - just wondering if that 6.5 year surviver is e ---- well I am now at 7.5 and going strong - and feeling great ....
by whippetlady on Thu Nov 01, 2012 02:12 PM
Wow thats great!!! I sure hope thats me. Did you receive any adjuvant chemo or anything? Im going to see my gastro doc Monday and Im wondering if I should just stop or keep going since so many docs thinks it makes no difference after curative surgery.
by whippetlady on Thu Nov 01, 2012 05:08 PM
PS I don't know where I saw the article that the person is at 6.5 years and still going. I did read of Japanese lady at 9 yr. I have been all over internet researching. Also, did you have curative surgery?
by omabina on Thu Nov 01, 2012 09:12 PM
Yes I had to make a decision too - chemo and radiation --- My surgeon reassured me that he got it all out .... so I had a session with the onco and he told me that chances of reoccurance are only 15% lower than not taking it --- so I did opt for it --- I was not very educated about all that stuff and my thinking was "hey I will kick myself if it comes back because I didn't take the follow up treatment" --- I took the chemo pretty well (gemzar and cisplatin) just was very tired all the time --- the Chemo was even more tiring --- but now I have days when I can really forget the whole cancer journey (sometimes, atleast) --- I call myself very lucky --- I work out at curves 3 times a week and feel great - I am a 73 year old Grandma -- how old are you? btw - I took the radiation for my uterine cancer... not related to the pancreatic cancer! let me know how you are going and doing, cheers, Sabine
by whippetlady on Mon Nov 12, 2012 03:36 PM
Im 69 and still working at a very high stress job that I love and have 3 very active whippets that get me out hiking. Wish I had time to work out. Im on gemzar and cisplatin now . Im not tired at all. They give me decadron that helps a lot. Gives a big boost to the energy level. No radiation tho. I just had surgery in Sept. chemo should do it. When were you diagnosed? I did tons of research on this and they really don't know if the chemo does anything; but, hey, like you, it is worth it to do everything we can to keep this at bay. It is a very nasty cancer with a bad habit of coming back, just like a bad penny!! LOL Im sorry I was so long getting back. This was supposed to come to my email when someone replied and its didn't!!
by omabina on Wed Nov 14, 2012 05:47 AM
Hi again - Wippedlady! ----
I lost your email adress - and I also cannot open on this board-please contact again with private mail --- I wish you well in the morning with the port ..... keep in touch and think positiv -
rooting for you and cheers, Sabine
by Godzgud on Thu Nov 15, 2012 04:58 PM
I have been 5 years in August since surgery and July 2008 was last chemo... still doing okay. I wish the best for you !
by whippetlady on Thu Nov 15, 2012 07:56 PM
Port went well and Im a bit out of it still from having it done. I had chemo this morning and slept thru it and Im back at work now. email:
Message edited by CancerCompass staff. For personal protection,email address removed. Consider private reply. Please review CancerCompass Member Guidelines athttp://www.cancercompass.com/common/guidelines.html
by whippetlady on Thu Nov 15, 2012 07:57 PM
Oh wow, that is just fabulous!!! Im so happy for you. Im so glad I decided to do the chemo. Im hoping for long survival now and no recurrance. Thanks so much for writing. Gives me a big boost!!
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