Hope

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santa6
santa6 Member Posts: 29
edited March 2014 in Head and Neck Cancer #1
Hi all. Haven't visited in a while. Can't sleep tonight and got the urge to share my experience/advice for those just starting into the adventure of Head & Neck. Wish I knew then what I know now.......

With the exception of this site - don't research on the internet. Most of the stuff is wrong and your cancer is unique.

Try to get to one of the many certified CCC's around the country, Comprehensive Cancer Center - they are on the leading edge of treatment.

The nurses are your best friends and they will be huge resourcs for you as you delve into your treatment and side effects. I had one in chemo and one in radiation that I will never forget.

I had a choice on chemo and I took it - couldn't forego an incremental improvement in odds of success.

The scar will heal and fade. Mine looked like a swollen gill at first - hardly noticeable now. That other thing is called turkey neck(technical term is lymphodemia) wear it proudly!

If they recommend the PEG, get it and get it before treatment. You will not want to eat, and you don't want surgery after treatment has started.

Don't get freaked by what you see in the radiation waiting room. Everyone responds differently.

Ask the techs to cut out the eyes/nose on the rad mask - eliminates the clastrophic element.

Stay in front of your pain. I didn't and ended up hospitalized as a basket-case. A special pain team got me dialed in after a couple of days and it made a huge difference. Don't be stoic, you'll have enough to deal with without a pile of pain heaped on.

You probably will not want to eat or drink anything soon after treatment starts. You must drink water or some liquid often every day. Otherwise, several weeks after treatment you will spend weeks visiting a speach pathologist who will try to teach you how to swallow again.

Listen closely to your nutritionist.

I can't recall the name, but there is a great cream for the skin on your neck. I know that before insurance it cost over 300 dollars for a small tube - miracle stuff.

Best thing I found for the flem: 1/4 cranberry juice with 3/4 tonic water. Beer too but that can be problematic if you're on Phentynol, Percoset and morphine like I was!

Most of all, no matter how bad you feel as treatment ends and recovery begins, KNOW that you WILL feel good again.

About two weeks after my treatment ended I was actually privately praying to die. Nine months out of treatment I feel fantastic and I just rode in a 105 mile Pelotonia to raise money for the James Comprehensive Cancer Center at OSU. I'm 50 and I finshed in a respectable time and felt great afterwards.

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  • Pam M
    Pam M Member Posts: 2,196
    #2
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    Yay, you
    Wow - 50 mile bike ride nine months out of treatment - great job. Especially since you felt like giving up after treatment. Glad you can hold out hope for the "newbies" here, and let them know that huge improvements are possible. I feel good (I'm five months out) - but then again, I didn't feel as bad as you did after treatment. Keep doing well.
  • james chambliss
    james chambliss Member Posts: 70
    #3
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    Pam M said:

    Yay, you
    Wow - 50 mile bike ride nine months out of treatment - great job. Especially since you felt like giving up after treatment. Glad you can hold out hope for the "newbies" here, and let them know that huge improvements are possible. I feel good (I'm five months out) - but then again, I didn't feel as bad as you did after treatment. Keep doing well.

    Thanks
    I am not done with chemo yet, but am done with radiation. About 6 weeks out. I am feeling better, but have to start the 2nd round of chemo this weekend. I do know i will get through it, especially reading what others here have gone through. It does give us newbies hope.
    So thanks for the info, my throat is already feeling a lot better compared to 6 weeks ago, still get the mouth sores after i eat, but the go away after about an hour or 2. Does that change? I also hope starting these last 3 rounds of chemo don't affect my throat, i don't think it will now that i am done with radiation. Any input?

    Thanks

    James

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