Starting treatment today-nervous!

Kari2007
Kari2007 Member Posts: 108
in Head and Neck Cancer #1

Hi everyone,

Quick intro: I am a 42 year old who was recently diagnosed with HPV+ stage III SCC. The tumor site sits between my tonsils and I have two affected lymph nodes. Today I start the standard seven weeks of radiation and tomorrow I go in for my first of three infusions of cisplatin. I live on Vashon Island, which is close to Seattle, but only accessible by ferry. I'm married and we have a nine year old daughter. 

I'm feeling nervous as I start this journey. The daily ferry commute feels daunting, although I do have some time scheduled at friends' homes in Seattle. I'm worried about how my daughter will handle seeing me so ill. And, super nervous about chemo after hearing horror stories for so long.

Any words of wisdom for this newbie? 

Comments

  • Barbaraek
    Barbaraek Member Posts: 626
    #2
    Kari

    Visit the board here often for questions, support and if you need to complain- we are a great group here. Try to keep eating and drinking, even though it will be difficult. Don't hesitate to consult with your medical team if you experience pain or nausea.

    Let your daughter know that rough times are ahead, but it DOES GET BETTER. There are many people on this message board who are survivors. I will say that while I wish my husband had never ever had cancer, I am thankful for some of the incredibly valuable lessons we learned from the experience. I'll keep you in my thoughts and prayers - you'll have many here pulling for you!

    P.S. There's a podcast from a monastery that I listen to that's on Vashon Island!

    Barbara

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited June 2016 #3
    Welcome Kari....

    Of course you're nervous....it's the nature of anything new.  You are having the same treatment I had....3 Cisplatins and 35 radiation treatments.  One thing for sure, you have joined a great group of smart, supportive people.  Plus, you'll meet folks that are going through treatment at the same time as yourself....

    The only lasting side effects I had from Chemo was tingling in my feet and fingertips....and ringing in my ears (I only notice it when I stop to listen to it).  Just be sure to take your antinausea meds as directed...don't wait to feel sick....head it off at the pass.  Radiation brings it's own set of side effects.  One nice thing about getting chemo every 3 weeks, is tho you might not feel so hot for 4 or 5 days....you get a 2 week reprieve of feeling pretty darn good.  My words of wisdom for chemo is:  SIT CLOSE TO THE BATHROOM!!  I never had to pee so bad in my life.  They pump you full of hydration before and after.  Also, take a lunch.  I was starved by the time I left.

    As for the rest of it....eat all you can now....anything you want.  Myself, it was Mexican food and Cheeseburgers Deluxe :).  Drink lots of water...hydration will become an important part of your life. 

    It's going to be ok.

    p

  • RottiesMom
    RottiesMom Member Posts: 167
    #4
    Just started

    Hi Kari 

    I just started too.  I had my first chemo (cisplatin) 3 cycles 3 weeks apart, and 7 weeks radiation 5 days a week.  Mine is Stage IVA, rt tonsil, 2 lymph nodes.  My prayers are with you as we start this journey to being cancer free! 

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    welcome

    Kari2007,

    Welcome to the H&N forum, sorry that you are here, but it sounds like you got in just before the starting bell.

    Your confusion and fear will soon be replaced with the routine of treatments.  You manage all life throws at you, one at a time.

    Stop by and ask questions or say how you feel.  Read through the superthread  and realize the difficult portion is temporary.

    Keep drinking water and swallowing!

    Good luck,

    Matt

  • Fritz
    Fritz Member Posts: 106
    #6
    Welcome Kari!

    I too was diagnosed with Stage IVA tonsil cancer with spread to soft palate, tongue base and one lymph node.  Unlike, you and Joanne, I had surgery to remove both tonsils, some soft palate and tongue base as well as a neck dissection to remove 24 lymph nodes on April 20.  I began my first of 33 rads and first of 6 weekly Cisplatins on June 1st.  I know the thoughts you are going through as many others have had before us.  This has truly been a wonderful site to be a part of as you can learn so much from those on this site.  Do not be afraid to ask for help as from what I have seen, there are many answers to be had for all your questions.

    I hope your treatments progress well for you and in a few months this is just a bad memory.

    Freddie.

  • Runningwahine
    Runningwahine Member Posts: 15
    edited June 2016 #7
    Hello Kari!

    I am currently on 13 (33) rads and Thursday will be cisplatin 2 (3).  Stage IV SCC of the Tongue and 4 positive left nodes. Surgery was in April, eating has been a challenge throughout. Just when i could start eating again the rad's effectively put a stop to anything solid. I do drink shakes but the weight is still coming off, gets frustrating. But as long as I keep trying things I will find something that works.  All the advice is great! Good luck to you!

    Ronda

     

  • SusanUES
    SusanUES Member Posts: 125
    #8
    Welcome, Kari

    You're going to be fine...next seven weeks will be rocky but we are all here to lend and ear and cheer you to the finish line.  This sucks but life is going to be good again, promise!

    Wahine, try making those shakes with Scandi, Ensure, whole milk and melted vanilla ice cream...each should be about 800 calories.  I drank three a day was able to barely maintain.

    Joanne, I'm thinking of you, honey...pulling for you all the way!!

  • RottiesMom
    RottiesMom Member Posts: 167
    #9
    SusanUES said:

    Welcome, Kari

    You're going to be fine...next seven weeks will be rocky but we are all here to lend and ear and cheer you to the finish line.  This sucks but life is going to be good again, promise!

    Wahine, try making those shakes with Scandi, Ensure, whole milk and melted vanilla ice cream...each should be about 800 calories.  I drank three a day was able to barely maintain.

    Joanne, I'm thinking of you, honey...pulling for you all the way!!

    :)

    Thank you Susan!!

  • Runningwahine
    Runningwahine Member Posts: 15
    #10
    SusanUES said:

    Welcome, Kari

    You're going to be fine...next seven weeks will be rocky but we are all here to lend and ear and cheer you to the finish line.  This sucks but life is going to be good again, promise!

    Wahine, try making those shakes with Scandi, Ensure, whole milk and melted vanilla ice cream...each should be about 800 calories.  I drank three a day was able to barely maintain.

    Joanne, I'm thinking of you, honey...pulling for you all the way!!

    Thank you Susan! I ordered

    Thank you Susan! I ordered the Scandi from Amazon today. So far I have been mixing the melted ice cream, malt powder and almond milk. Will let you know when I try it out

  • Kari2007
    Kari2007 Member Posts: 108
    #11
    Thanks, everyone!

    Thanks for all the great advice and encouragement. There are days when I feel so positive and ready to take this on and then days where I just can't believe this is happening and cry. I suppose that's normal!

    I had a feeding tube put in a week ago to help with eating and weight loss. My plan is to keep up with my speech therapy and eating as long as possible and then go to tube feeds if necessary. I'm still getting used to this tube sticking out of me, but I know it's temporary and it could mean a world of difference in recovery. I'm entering my last year of grad school, and want to feel well enough to start class at the end of September. Oddly enough, I just won a scholarship to focus on oncology social work and will be doing my final internship at the Seattle Cancer Care Alliance starting in the fall. I suppose now I'll have lots of first hand wisdom and experience!

    Good luck to all of you who are in the midst of treatment and thanks to those of you who have lived this for being a source of support! 

  • RottiesMom
    RottiesMom Member Posts: 167
    #12
    Feeding Tube

    I'm finding this feeding tube very painful...Al though I shouldn't complain.  A month from now I'll be happy to have it!!!

  • dygit
    dygit Member Posts: 40 Member
    edited June 2016 #13
    Aloha!

    Cool

    Welcome Kari! Looking forward to hearing more about how your treatment goes for you. I it so cool that everyone using the blog has been such a support for each other. Keep positive - you have a long life ahead of you and you will get through this. Seattle has very beautiful summers as I remember - may the sun shine on you all the time (make sure you are covered though :-)

  • RottiesMom
    RottiesMom Member Posts: 167
    edited June 2016 #14
    Thanks Barbara

    I guess a button one....there is a round pastiche disks that lies against my stomach.  I know it's in right because a scan was done before I left the hospital.  It is like a sharp stabbing knife pain.  I'll try the ice pack.  I guess because ab muscles are used for just about everything coukd be why!

    Joanne

  • RottiesMom
    RottiesMom Member Posts: 167
    #15
    Should say

    *plastic disk 

     

  • Kari2007
    Kari2007 Member Posts: 108
    #16
    RottiesMom said:

    Feeding Tube

    I'm finding this feeding tube very painful...Al though I shouldn't complain.  A month from now I'll be happy to have it!!!

    FT pain.

    I had mine placed a week ago and the intense pain didn't subside for about a week. It still hurts, but I can get away with ibuprofen or nothing. I also have oozing, but doctor and nurse said it looks normal and to keep an eye on it.

    Hopefully yours goes away soon!

  • wmc
    wmc Member Posts: 1,804
    edited June 2016 #17
    Welcome to H&N group

    Welcome to the group, and sorry you need to be here. Yes, it is a very rough road to go down but it is very doable. Many here have been down the same as you are. Just take one day at a time, and only today matters. Mine was stage 3 supraglottic just above my vocal cords so Mine was surgery only as my lungs were bad. So I was cut from ear to ear removed my larynx and did a neck dissection on both sides, level 2-5 and removed 86 lymph glands. With all that, I still have my tonsils, go figure. 

    This is a great site for support and answers. We also accept venting, and open 24/7.

    Bill 

  • Barbaraek
    Barbaraek Member Posts: 626
    #18
    RottiesMom said:

    Feeding Tube

    I'm finding this feeding tube very painful...Al though I shouldn't complain.  A month from now I'll be happy to have it!!!

    Do you have one of the button tubes?

    or a longer one? My husband had both kinds and the low profile button one seemed to get more irritated. Try some cream around the site or even a cool ice pack .

    Barbara

  • MrsBD
    MrsBD Member Posts: 617 Member
    #19
    To the Newcomers

    I can hardly believe it was almost two years ago when I embarked on the journey you are beginning. As Phrannie said, everyone is nervous to start because we all fear the unknown. You'll find answers, support and prayers from the amazing people on this site. I found strength in knowing others had been through this and were living their lives again. The bit of advice you'll hear over and over is to keep eating and drinking so your swallowing function stays strong. It may seem impossible at times, but you will get through this and in a matter of months, you'll be dishing out advice to those who follow.

    Kari, the social worker at your cancer center would have resources to help your daughter. As a teacher, I also recommend letting her school staff know about your treatment so they can give her extra support if needed.

    You are all in my prayers daily. Check in often to let us know how you're doing. 

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