Introduction and hello

Laralyn
Laralyn Member Posts: 532
in Head and Neck Cancer #1
I've been lurking on this board for a couple weeks, and finally decided to come out and say hello. :-)

I was diagnosed in late March with oropharangeal SCC that is strongly positive for HPV-16. I was really glad to hear the HPV status, since I know that means it's more likely to respond well to treatment.

My treatment plan is 7 weeks of daily IMRT plus Cisplatin every week. I'm almost done with the first week (Monday is the fifth radiation treatment) and I feel like an early bloomer because I'm feeling effects already! I have a slight burning sensation in my throat, my sense of taste is shifting, and my mouth feels dry and kind of pasty. It's a small price to pay, of course.

I had a PEG tube placed before treatment started, and I'm determined to use it to keep myself at the right nutrition and hydration level. I also know the importance of swallowing though, so I'm equally determined to do exercises and try to keep swallowing throughout treatment. I've been having a lot of pain from the PEG tube so I went back to the doctor who placed it, and he said I may have a slight infection so I'm on antibiotics.

My worst fear (almost to the level of a phobia) was about nausea, which I did struggle with last week (and even some today). I'm taking Zofran every 12 hours, and Compazine/Lorazapam every 6. The NP handling my chemo said she's going to try Emend next week. Will that help after the infusion or just during?

I'm also trying MuGard. The information (so far) from its trials is pretty impressive, so I'll post here when I have more results. It usually takes a couple weeks for oral mucositis to develop, right?

Beyond the nausea and PEG tube pain, I'm staying focused and positive. I'm lucky enough to have an understanding employer who's letting me work from home, so I'm taking it one day at a time. I'm blogging about my experience at my website, here: http://eluminarts.com/?cat=52 .

Thanks for all the posts and information here. It's not just great to read facts--it's great to know we're not going through this alone. :-)

Comments

  • jtl
    jtl Member Posts: 456
    #2
    Good luck to you. Please
    Good luck to you. Please try eat as much as you can and for as long as you can. Make it a goal to eat normally even when it is painful. Take pain meds but do not let the PEG become a crutch. Trust me when I tell you that you will recover much faster. I got this same advice from my ENT and never had a PEG against the wishes of my med onc. It really hurt but I made it and the recovery was a non-event. I ate a lot of creamy homemade soups, the ones in the store had way too much sodium which really burned my throat. I also had to swear off tomato based soups for quite a while.
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    I'm glad that at even if you haven't been posting....
    you have been reading...This site has been like gold for me...like you said, knowing you're not alone is as healing as the treatments.

    I was diagnosed with Nasophraynteal Carcinoma Stg III. I start chemo (Cisplatin) on Tuesday, and my oncologist gave me an anti-nausea "regime" for the two to three days after. Emend is part of it for the first two days...He has a regular schedule that I've tacked to the refrigerator, so I can't forget. 7am - Zofran, 8am Emend, 10am Compazine, 1pm Ativan, 4pm Zofran, 7pm Compazine, Bedtime Ativan...he said to adhere to this and do not deviate.

    I only get chemo once every 3 weeks, so I will have time between treatments to recoup, at least from the chemo...I'll be getting nuked tho, everyday for 35 rad treatments.

    I'm so happy you've decided to talk...blogging and journaling help, but there's no replacement for actual conversation with people who are with you in this boat, or have already gotten to land.

    p
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #4
    :)
    Hello, sorry you had to join us here, but glad you found us!! I am enjoying reading your blog; I like your positive outlook! It's a tough road but, doable! God Bless!!

    Charles
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Welcome...
    Welcome to our little piece of the WWW...

    Best,
    John
  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #6
    Skiffin16 said:

    Welcome...
    Welcome to our little piece of the WWW...

    Best,
    John

    Join right in
    Hi Laralyn,

    This place is so good at getting information and meeting a lot of very caring folks.

    Your attitude is very good going into this mess. Try to keep it positive throughout the whole process and you'll heal better. (IMO)

    Glad to have you with us,

    Tommy
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #7
    tommyodavey said:

    Join right in
    Hi Laralyn,

    This place is so good at getting information and meeting a lot of very caring folks.

    Your attitude is very good going into this mess. Try to keep it positive throughout the whole process and you'll heal better. (IMO)

    Glad to have you with us,

    Tommy

    Laralyn
    Welcome.

    Think most of us get the Emend right from the day #1 of chemo. Seems people a couple years ago used to get your regiment of 1 chemo/week more often than they do now. Possible a more stretched-out chemo regiment might be why your Onco hasn't already had you on Emend. Stuff is expensive, but supposed to be as good as it gets. Nausea was never much of an issue with me- only bad times were when I first woke in bed after 4+ hours sleep, and attribute it to a mucous buildup overnight. Only took Compazine as needed, and it seemed to work.

    As for PEG- also got mine before tx started, and used exclusive for weeks #2-8, though did sip water and the infamous ice chips. I never had swallowing hassles, but others have. Must keep the Nutrition going in, and the swallowing function working. Superthread has recipes for the PEG, but Jevity is probably still the standard. Take-in what you can, and for as long as you can via the mouth.

    Know you will get thru this okay, Laralyn, and you will recover okay. That's fact in 2012-

    Believe

    kcass
  • patricke
    patricke Member Posts: 570
    #8
    Welcome to the board. Hang
    Welcome to the board. Hang in there, it's a rollercoaster, but in time it does get better. Even though it's easier said than done, keep your head in the positive zone, it's far to easy to slip into the negative. Remember always, when dealing with the many challenges that you will face, repeat to yourself as often as necessary, "I can do this...(for the second, minute, hour, or day). No, you are not alone, it's awesome, you/we have a world wide support group. May all of your reports be NED.

    PATRICK
  • Laralyn
    Laralyn Member Posts: 532
    #9
    patricke said:

    Welcome to the board. Hang
    Welcome to the board. Hang in there, it's a rollercoaster, but in time it does get better. Even though it's easier said than done, keep your head in the positive zone, it's far to easy to slip into the negative. Remember always, when dealing with the many challenges that you will face, repeat to yourself as often as necessary, "I can do this...(for the second, minute, hour, or day). No, you are not alone, it's awesome, you/we have a world wide support group. May all of your reports be NED.

    PATRICK

    Thanks for all the support!
    It's great to feel so welcome and know there are people to talk to. :-)

    My chemo RN said I will definitely be starting on the Emend tomorrow, so I'm looking forward to less nausea next week (hopefully). I feel like a small sore is starting on my tongue, so I'm redoubling my efforts with MuGard, salt rinses, and Manuka honey.

    I also noticed tingling around one arm, like I was wearing a bracelet too tightly. Isn't the first dose too soon for neuropathy to start?

    It's like radio/chemo side effect bingo over here. ;-)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Laralyn said:

    Thanks for all the support!
    It's great to feel so welcome and know there are people to talk to. :-)

    My chemo RN said I will definitely be starting on the Emend tomorrow, so I'm looking forward to less nausea next week (hopefully). I feel like a small sore is starting on my tongue, so I'm redoubling my efforts with MuGard, salt rinses, and Manuka honey.

    I also noticed tingling around one arm, like I was wearing a bracelet too tightly. Isn't the first dose too soon for neuropathy to start?

    It's like radio/chemo side effect bingo over here. ;-)

    Emend...
    Awesome stuff, highly recommend it. It's given the first three days of chemo, just before starting. After that it's the standard Zofran or Phenigrin....

    Neuropathy can start at anytime with Cisplatin... Best thing to do is communicate with your MD's of any reactions.

    It mainly starts in your finger tips or toes... I'm not an expert on it though so I'd communicate with your MD's like mentioned.

    Best,
    John

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