• relaymama's Avatar

    relaymama wrote on Fusionera's wall

    I saw your profile/story on the latest What Next update in my email ... and I've read all about you on here. It is amazing to me how similar our stories are. I was diagnosed 11 years ago with an Oligodendroglioma in my right frontal lobe and have had 2 crainiotomies (2002 and 2006, Temodar, PVC, and Avistan as well as gamma-knife radiation). Lots of MRI's here too ... I've not been as thorough as you and counted them though. When I first signed on to What Next, I did not see as many others in my situation, but I would like to get to know you better and maybe share some more of our stories. My email is [email redacted] if you'd like to message me.

    God Bless,
    Sharon

    3 Comments
    • rhanya's Avatar
      rhanya

      i have agrade 3 oligodendroglioma right frontal lobe,!!! i'm happy to find cases similar to mine, what I didn't like about this site is the lack of brain cancer patients, but now I think I will have a better chance finding ppl to share my journey with

      about 3 years ago
    • Fusionera's Avatar
      Fusionera

      Hi Sharon,
      The system redacted your e-mail. Please send me a message on Yahoo with my nickname here. Fusionera At yahoo dot com. I too would like to connect with you. Hope this finds you well.

      -Johanna

      about 3 years ago
    • Fusionera's Avatar
      Fusionera

      Agreed, rhanya - we brainiacs aren't as common on this site, but I'm glad to meet the ones who ARE here so we can help one another out. :-)

      about 3 years ago
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  • relaymama's Avatar

    relaymama wrote on relayrocks's wall

    Hi Lori, I see that you are very new to What Next. I joined in Nov. of 2012 and have been active on and off since then as time allows.

    I read your post to heatherpet and see that you and I also have a very similar diagnosis and story to me as well, so I hope you don't mind if I answer some of your questions to Heather. When I was diagnosed 11 years ago, I was working full time for the Boy Scouts of America and obviously went on short term disability while under treatment. I had an incomplete resection of my golf ball sized tumor followed by 8 months of Temodar. I was then stable for 2 1/2 years when those "legs" grew again and they put me back on Temodar for 12 months. That lasted until 2006 when I had another recurrence and they did a 2nd surgery to remove "all visible sign of tumor". Hurray! Should have been the happiest time of my cancer experience, but I had had a post-operative seizure and was unable to drive for 6 months and put on anti-seizure medications (which I'll be on forever since I want to drive; that was a nightmare trying to find one that didn't make me crazy) as well as "precautionary" chemo which made me very sick. During that time, I was granted ss disability (I had been too nervous to apply before this).

    Once they took me off that chemo, I was once again "Stable" ~ my new favorite word! ~ until the end of 2011 when I had a third recurrence (it moved to the left side of my brain) and completed Gamma Knife Radiation because it was still small enough to do that. That went well for me until this past fall, when the swelling from the radiation caused my some pretty severe neurological problems and they put me back on a new chemo treatment (Avastin) to help with the swelling, which they weren't sure if it was caused by the necrosis from the radiation or tumor activity?
    I was once again unable to drive for 3 months while I took the chemo and gradually got some of my memory and executive function/decision making skills back. The Avastin seemed to take care of the swelling so they now believe that it was not caused by tumor activity but by the radiation.

    I do not have any current physical pain (headaches, etc.) but my cognitive functioning is still very compromised and of course my emotional well being is all over the place. I have been blessed with so many positive things during my journey (and of course, the biggest blessing is that I am still here as a Survivor 11 years later), that I try very hard not to complain and appreciate every day that I am given as a gift from God.

    I see in your profile pic you are wearing a Relay For Life t-shirt. RFL has been a HUGE part of my family's life since our first event in 2005 and I'd love to chat with you more about your involvement with Relay.

    Sorry for the length of this post, but it feels good to chat about some of this and I hope that you and I will be able to connect a bit more on here. Thanks!

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