The First!

So, we just added this section here so if you have been affected by head or neck cancer, this is a place where you can discuss your specific concerns/issues. I hope to meet some folks with a similar story as my own here so feel free to chime in!!!

Comments

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  • Hi Jason! I'm a tongue cancer survivor too. I'd love to talk with you - I'm not even a year out yet. What treatments did you have? It looks like from your diagnosis, we had the same situation, but I only had one lymph node in my neck that it had spread to so I stayed at Stage 3. I've had3 tongue surgeries, two lymphnodectomies, 33 radiation treatments layered with 6 weeks of weekly chemo. I'm really curious about how you are doing 5 years out, if you have lasting side affects, etc. Wondering how much of what I feel now will get any better or not. Hope you are doing great now!
  • Wow, it's great to hear from you! not only are you the first other tongue cancer survivor I've met on this site, you're also from the Seattle area. I've heard your name from Angela, but I didn't know that you had fought tongue cancer! I pray you're doing well under the circumstances and look forward to hearing more of your story and getting to know you. I'm actually about 16 months post-treatment and doing great. as far as any lasting side effects from the rads...I still have to deal with the saliva issue. the volume has returned quite well, but I still have to drink a lot of liquid with my meals to get things down. I still have stiffness in my neck from the dissection, but it's not too noticeable. Speech has come back for the most part, though I still have problems with certain letters/sounds because my tongue just simply can't make the right shape. under nomal circumstances though, I'm completely understandable. I'm not sure how sever your hemiglossectomy was, mine was fairly minor to some I've read about (about 20% of my tongue removed). I would assume that if you lost as much or more than I did, you've had a tissue graft from either your forearm or another part of your body. Other than that stuff, I'm doing great and very healthy. please feel free to email me at [email]jasonmcnamee@gmail.com[/email] or look me up on facebook at www.facebook.com/jasongmcnamee. Please let me know how you're doing and if you have any more questions. From what I hear, you're going to be meeting up with the rest of us seattle area peeps at the end of the month for dinner so we'll be able to meet face to face and talk, which will be awesome! Hope all is going well, and look forward to chatting with you soon!
  • OMG so awesome that we are in the same area. Though, I'm a duck and I hate Huskies...so not sure we can spend much time together. ;) I'll connect with you more on fb and can't wait to meet you. And yes, I'm happy to find a restaurant for the Seattle meet up.
  • well, I think I've made things clear about the whole Duck thing...but now that that's behind us...super stoked to meet you!!!
  • At the risk of interrupting a two way conversation, I figure I'll introduce myself.  My name is Damian, I had the partial glasectomy/forearm graft/neck disection surgery, and my treatment was 9 total weeks of radiation, with about 6 weeks of "complimentary" chemo mixed in.  I got my surgery in October 2013, finished my treatment in early February 2014, went back to work full time by March 2014.  Oh, and I've got twin 4.5 year olds.

    On the plus side, I've been so busy since finishing the treatment that I haven't had too much time to obsess about my cancer, but every so often it all catches up with me (like, every time I have to get a new scan, or I notice something going on in my mouth).  I've been attending a head/neck cancer group session once a month through the hospital where I got my surgery, but all of the people participating are in their 50s or older, so while I appreciate having a forum to share stories and support each other, I feel like I don't have too much in common on a daily basis as the folks in my group.  Really glad to have found this community!
  • alphonsealphonse Community Member
    edited November 2014 Vote Up0Vote Down
    I know the feeling, the cancer support group which I go to are mostly 50+. Only a few of them are around my age and they attend the session only once in a while.

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