My radiation journey - Week 6

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stevenpepe
stevenpepe Member Posts: 234
in Head and Neck Cancer #1

Week 6 has been terrible. The effects of all this has hit me hard, as expected. I have 4 treatments left, one neck and tongue, then 3 tongue booster treatments, which will wreak more havoc on my already blistered tongue.

Eating solids is nearly impossible, even with the meds, which I started this week. Shakes are my primary form of nutrition.

My neck has gone from bright red to dark brown, much like a sunburn. Compared to my mouth, I barely notice the discomfort there.

I'm still at work, half days, and driving myself to treatments. But these last 2 weeks are tough. Lots of fatigue and just plain disinterest in anything but relaxing, trying to get through this nightmare. I plan on taking 2 weeks off after my last treatment.

The thought of recurrence pops into my head more than ever now. I cannot imagine how much worse this can be, with additional surgeries, treatments, and the possibility of losing my tongue. I cannot imagine living with such a diminished quality of life.

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Comments

  • swopoe
    swopoe Member Posts: 492
    #2
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    Aww, Steven. You are so close

    Aww, Steven. You are so close. You sound just like my husband at the end. Tongue booster treatments and all. He limped in to the last few treatments. But he got there and you will too. Eat what you can and simply rest. Rest as much as you can. The two weeks off of work will make you feel so much better. You have made it so far and you are almost done. Be proud of how far you have come. I know I am proud of you.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited June 2016 #3
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    week 6

    Steven,

    Toward the end I once had to stop my rad set-up, get off the table, cough, spit, get a drink of water, regain my composure and start all over (oh the memories).

    I think of your treatment as being completely successful with a bright and yummy future filled with all that you love in life and food.

    Hang in there, you are counting on one hand and you are still able to report the good, the bad and the ugly.

    STAY POSITIVE!   And keep drinking and swallowing.

    I had neck burn fairly bad, it hurt, maybe you will miss it.

    Best always,

    Matt

  • cardoza33
    cardoza33 Member Posts: 81
    #4
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    You have enough to deal with,

    You have enough to deal with, don't concern yourself with thoughts of what might be.  You have no control over that and it does not help to concern yourself with it.  Stay focused on what you can control, which is your daily grind of battle.  Give yourself a break man.  If you can, stop working and get someone to drive you.  You need rest.  Don't be ashamed of it.  That is your body recovering.  Don't do too much. Get rest, watch some movies.  Chill and heal.  I was a workaholic.   I never sit around.  I was forced to and at some point I simply embraced it as my body was healing, which is the case.  Take one day at a time and try to rest.  Don't try to be tough and do too much.  Your doing great and your almost done.  keep it up.

  • MrsBD
    MrsBD Member Posts: 615 Member
    edited June 2016 #5
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    Week 6

    Steven, you have done amazingly well and we are all pulling for you as you approach the finish line! These days are so very tough, but as you have seen from many of us, life will be good again. You will power through this. All of you newcomers are in my prayers. 

  • RottiesMom
    RottiesMom Member Posts: 167
    edited June 2016 #6
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    1st treatment

    My first radiation treatment is Monday.  I've followed your posts these last few weeks and I hope I can do as well as you!  Stay focused on your current treatments and don't worry about what's to come!!  You've got this Steve!!

  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
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    Hi Steven

     

    You are almost at the finish line my friend just continue to keep focus and keep a positive view, that will help you as you get close to the finish line. Also on recurring don’t sweet it there are a lot like me who had to go through treatment a few times before kicking it out the door, we all made it. So keep working but don’t overdo it, just keep your mind busy and active through the day. To me praying and reading my Bible is what I used both times, it was my strength when I was so week.

     

    PS: My wife was always singing one day at a time for me, I now find myself singing it sometimes.

    Tim

  • Barbaraek
    Barbaraek Member Posts: 626
    edited June 2016 #8
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    Steven

    You're in the home stretch buddy...you can do it (I'm ringing the cow bell now, and jumping up and down). Repeat after me "It will get better, it will get better, it will get better!

    If the neck burns get really bad, ask for Silvadene cream. Keep using the L-Glutamine, magic mouthwash if you have it. We also had a product called GelClair. You've done extraordinarily well. Prayers that things will improve soon.

    Barbara

  • RottiesMom
    RottiesMom Member Posts: 167
    edited June 2016 #9
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    lws said:

    1st Teatment

    Hi Rottie's Mom,

    I well understand what possible anxiety, fear and stress that you must be struggling with as you face the uncharted waters of radiation therapy. Be encouraged...it will work out for you! :)

     

    Thank you!

    Hi Doc,

    Thanks so much for your advice!  I am diagnosed with Stage IVA tonsil cancer...it metastized to 2 lymph nodes, pet scan clean for anywhere else!! I had my first chemo treatment last Tuesday.  I'll have 2 more chemo (cisplatin ) 3 weeks apart (next one July 12) and 7 weeks radiation 5 days a week.  I will post as my journey progresses.  

    Sara is a rescue.  She was found starved, missing an eye, with 2 pasture mates - one standing next to her in just as bad shape. The other lying on the ground dead.  She is so very sweet.  

    Joanne

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited June 2016 #10
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    Steven

    Hang On.....Finish Line Ahead!  You have done extremely well.  As I followed your journey (my treatment ended over 2 month ago) I was so impressed with your strength and determination. Keep channeling that.  As for reoccurrence, I thought of that often during the pain.  I can tell you this, once you slowly, and yes slowly, move forward on this Journey you will discover how truly strong you are and Cancer be damned.  I can and will survive!  Almost 3 months post-treatment, earlier than usual,  I was checked both visually and also with a CT w/contrast.  Diagnosised in Remission, NED. You can do it, come join me.

  • Gypsy28
    Gypsy28 Member Posts: 69
    #11
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    Dear Steve

    You are so brave. Reading your posts have given me hope that I can do this too. I pray that your pain will subside quickly after treatment. None of this is fair and you've put up the best fight. Thank you for being an inspiration for us just starting.

    Shirley aka Gypsy

  • SusanUES
    SusanUES Member Posts: 125
    #12
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    Walked in your shoes...

    Exactly one year ago I was where you are now...suffering the torments of the damned with more to come. Today I walked the beach at Coney Island, played the arcade, rode The Wheel and had pizza at Tontonno's. And life is beautiful again, just as it will be for you. This time next year you'll be counseling and consoling a newbie and this crap will be just a bad memory. Warrior on!

  • wmc
    wmc Member Posts: 1,804
    #13
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    Steven.........

    Let me say first that you have gone through so much better than most do. Doctors say Head&Neck is the second treatment one can go through. Once you "Ring that Bell", you will start to recover and you might notice much at first. When you look back to the week before, is when you see the progress. It can be subtle improvements at times, but it is there. Try not to even think about a reoccurrence. The odds of that for you are very slim. Just having a doctor say those words,"You Have Cancer" is so devastating and somehow just stays in the back of your mind. Any lump, bump, or even a tingly, and somehow it comes rushing to the front like a bullet train.

    You are almost done, and beat this. There may still be a bump or two, but nothing to be concerned with. Remember: You fought for your life, and won!  Once the recovery period is over, Enjoy your life to the fullest.

    Bill

  • lws
    lws Member Posts: 13
    #14
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    RottiesMom said:

    Thank you!

    Hi Doc,

    Thanks so much for your advice!  I am diagnosed with Stage IVA tonsil cancer...it metastized to 2 lymph nodes, pet scan clean for anywhere else!! I had my first chemo treatment last Tuesday.  I'll have 2 more chemo (cisplatin ) 3 weeks apart (next one July 12) and 7 weeks radiation 5 days a week.  I will post as my journey progresses.  

    Sara is a rescue.  She was found starved, missing an eye, with 2 pasture mates - one standing next to her in just as bad shape. The other lying on the ground dead.  She is so very sweet.  

    Joanne

    Hi Joanne,

    Hi Joanne,

    I look forward to hearing of your progress. I have found that horses are extremely caring and loyal. Give Sara a hug for me! :)

     

  • lws
    lws Member Posts: 13
    edited June 2016 #15
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    RottiesMom said:

    1st treatment

    My first radiation treatment is Monday.  I've followed your posts these last few weeks and I hope I can do as well as you!  Stay focused on your current treatments and don't worry about what's to come!!  You've got this Steve!!

    1st Teatment

    Hi Rottie's Mom,

    I well understand what possible anxiety, fear and stress that you must be struggling with as you face the uncharted waters of radiation therapy. Be encouraged...it will work out for you! :)

     

  • lws
    lws Member Posts: 13
    #16
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    Be Encouraged

    It will smooth out for you as you learn more about how to manage the issue. The unknown is a big part of the journey. Be encouraged! You're not alone.

     

     

  • stevenpepe
    stevenpepe Member Posts: 234
    #17
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    Last night was my roughest to

    Last night was my roughest to date. The past few nights I've been waking to the threat of vomiting. Last night, it finally happened. The mucositis is finally hitting me and I wound up vomiting for nearly 15 minutes.

  • SusanUES
    SusanUES Member Posts: 125
    #18
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    Get an elevated wedge...

    I brought an elevated wedge on Amazon and used it with my pillow on top. Helps with drainage and prevents pooling of the mucous. Keep a glass of ginger ale on your nightstand with a bucket underneath. When you have a bad night, swish and spit, swish and swallow. Try to sleep with your lips slightly open and on your side...the mucous will drain onto your pillow. Gross but who cares...put a towel on your pillow. Mucous will build up for the next month or so and then slowly subside. We've all been there...this will pass. Warrior on!

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    #19
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    stevenpepe said:

    Last night was my roughest to

    Last night was my roughest to date. The past few nights I've been waking to the threat of vomiting. Last night, it finally happened. The mucositis is finally hitting me and I wound up vomiting for nearly 15 minutes.

    monday

    Make sure to call your MO Monday to get an adjustment to the meds to reduce the nausea. 

  • cardoza33
    cardoza33 Member Posts: 81
    #20
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    SusanUES said:

    Get an elevated wedge...

    I brought an elevated wedge on Amazon and used it with my pillow on top. Helps with drainage and prevents pooling of the mucous. Keep a glass of ginger ale on your nightstand with a bucket underneath. When you have a bad night, swish and spit, swish and swallow. Try to sleep with your lips slightly open and on your side...the mucous will drain onto your pillow. Gross but who cares...put a towel on your pillow. Mucous will build up for the next month or so and then slowly subside. We've all been there...this will pass. Warrior on!

     

    I threw up my entire

    I threw up my entire treatment and much of my recovery.  Not daily but every couple days for sure.  It was horrible.  I tried sleeping in a lazy boy to keep the drainage going down.  I used the lazy boy the entire duration of treatment.  My mucuous was so bad at times I slept sitting up in the chair w/ a bucket in my lap.  I also used the wedge pillow off amazon.  Both helped.

  • LiseA
    LiseA Member Posts: 266
    #21
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    Steven, sorry you're having a

    Steven, sorry you're having a rough time, but so glad to hear from you.  

    I got a wedge pillow with contour from MDA's OT department because of my neck surgery.  I too use pillows on it. Glad to know it will come in useful for the gross stuff coming up!

    Tomorrow will be my last treatment for week 4. I remember you were doing pretty well in week four, compared to 5!  Scary to think about. I'll begin week 5 on Tuesday. Do come by to cheer me on to the finish line. I have 13 more treatments to go.  Half of my tongue is pretty raw already, and inner cheek is raw too. Swish and swallow helps, and so does the L Glutamine.

    So grateful we have these wonderful survivors to cheer us on.

     

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