Starting treatment 7/30/18

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ricksmithgolfer
ricksmithgolfer Member Posts: 87 Member

Wish me luck, I am starting radiation 7/30/18 and have my first infusion of high dose Cisplatin on 7/31. Trying to enjoy my last day before treatment begins. I have been eating like crazy the last several weeks and have gained 18 pounds. That puts me at 245 pounds. Should weigh around 185 so hopefully I can make it thru this without getting a peg tube. My cancer is right Tonsil with 3 lymph node involvment HPV Positive. Lymph nodes are not swollen and can not be seen or felt. Considered stage 1 under new guidelines and stage 4A under old guidelines. Very scared today but at the same time ready to kill this beast in my body. Any last minute advise from anyone would be appreciated. Any prayers would also be appreciated. Thanks and God bless.

Rick 

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  • ThomasF
    ThomasF Member Posts: 8
    edited July 2018 #2
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    The first two weeks might not

    The first two weeks might not be too bad, so enjoy tasting food up until the very last minute. Once you lose your ability to taste, making yourself eat can become difficult. I finished treatment on 7/16 and came through pretty well compared to others. Still haven't regained any ability to taste.

    Your second Cisplatin will likely be harder than the first.

    Be sure to do plenty of swallowing even if you're not eating. Drink lots of water (or whatever) and take occasional "gulps" in order to keep your swallow ability working properly.

    It won't be easy but you can make it through this.

  • ProustLover
    ProustLover Member Posts: 121 Member
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    Rick - you can be sure

    Rick - you can be sure prayers and good wishes will be with you tomorrow and going forward.  Drink lots of water, read the superthread, and try to stay positive.  You can do this!  Your treatment plan is very effective means to kill cancer. Hold that thought in your head, and take one day at a time.  Let us know how everything goes.

  • Bren1957
    Bren1957 Member Posts: 1
    edited July 2018 #4
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    Good luck Rick

    I have just gone through everything you are about to have. Chemo wasn't bad but after 4 weeks of radiation things get sorta rough. Drink lots of fluids. Nothing will taste good but if you don't force yourself to eat and drink you will need a feeding tube. Stay positive, trust in God and you can kick cancers butt...l go back in Aug. for my pet scan. My taste is slowly returning but this dry mouth all the time sucks. But I can handle that, just thankful to be alive. 

  • tommyodavey
    tommyodavey Member Posts: 727 Member
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    You'll Be Okay

    Very good that it was caught early.  It will all pass and a year from now you'll forget most of the discomfort, hopefully.  We all wish you the best in recovery.

  • OKCnative
    OKCnative Member Posts: 326 Member
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    Good luck to you. If it helps
    Good luck to you. If it helps, I started treatment almost exactly one year ago (stage 3, base of tongue, neck node involvement, HPV+) and today I'm 100% in every aspect and you'd never know I went through treatment.

    I have a couple of friends who had cancer in their tonsil(s) and they actually had an easier time avoiding a PEG tube than I did (I never had a PEG but considered it). So, hopefully you'll have the same. In fact one of my friends continued to eat soft-solids throughout his treatment - with the use of Magic Mouthwash.

    The first few weeks are usually not a big deal - so, enjoy them!

    It's gonna get rough - really rough. But just know thousands have walked the exact same path before you and came out just fine on the other end. You gotta stay positive. It's amazing how your brain will eventually forget how bad this all was.

    Good luck!
  • wbcgaruss
    wbcgaruss Member Posts: 2,306 Member
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    Rick for You

    I am praying for smooth going on treatments and your ability to handle the side effects. Praying God will strengthen you in this situation and I used the 23rd Psalm and the Lords prayer each day to help me. Sounds like you have enough weight built up in preparation. Do you have a port? As was said above Enjoy food while it still has the flavor to it and if they did not give them to you ask for swallowing and jaw exercises. This helps counteract trismus-jaw opening and activity and swallowing. Swallowing was emphasized to me as the speech and swallowing folks said if you don't stay at it you will forget how to swallow and have to learn all over again. Sounds odd I know but they said it happens. Just get through one day at a time as this Bible verse says-Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. And if you get a chance check out this guy Ken Curtis he dealt with cancer for Eight years and made videos and wrote on it-https://www.rightnowmedia.org/Content/Series/954. So keep us posted it can be a bit rough at times phlegm in the mouth and throat can be a problem later on so if you get it stay ahead of it and keep it rinsed out use the salt water and baking soda combo to rinse your mouth as needed I recently used it when I had my tongue operated on to excise cancer and I think a teaspoon of salt to 8 ounces water and maybe 1/2 teaspoon baking soda works well. Many variations on the web but find something easy to mix and basic. Hey, we're all rooting for ya and hoping and praying for smooth treatments, low-end side effects, and a quick recovery-take care.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
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    Don't forget that you can

    Don't forget that you can rent a suction pump to help deal with the mucusites.

    When radiation treatment starts, Aquaphor on your neck will slow down the development of the burns.  I used it within 10 minutes after every treatment and managed to push off burns until week seven.  Yes, Aquaphor is sort of greasy, but it was originally developed specifically for cancer treatment radiation areas.

    A litre of water every day will keep swallow working.  Also, you should eventually be seeing a therapist for swallow.  They will give you a set of stretching exercises, and the more you do them now, the less problems you will have later. 

    Calories = recovery.

    This site is populated with lots of treatment veterans, and their spouses.  There are a variety of ways to cope with the problems, and eventually someone will post with a recommendation.

  • johnsonbl
    johnsonbl Member Posts: 266 Member
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    I didn't have chemo...

    with my radiation and that adds a whole new level of crappy to it.  But in general, the above are all great suggestions.  I'll second the water suggestion.  It helps you heal and also keeps your throat working.  Don't wait.  Start over hydrating now and keep doing it for a couple of weeks after you are done.

  • Julban
    Julban Member Posts: 2
    edited July 2018 #10
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    What I wish we knew

    GNC has high calorie shakes, there is a 700 or 1350 cal.  Try to get as many down as you can when food no longer tastes good or hard to eat.  Boost is too low in calories & you have to drink 10 of them to get in the 2000 cal range.  Heavy cream adds calories so if you mix shake with milk, add 1/4 cup of heavy cream.  Keeping up your nutrition is key.  If you are feeling well enough, get a juicer & juice veggies and fruit right away.  Once you get sores on your mouth it may burn to drink juices.  But try to get as much fresh fruit & veggies & juicing them allows for a large quantity of vitamins & minerals that are easily absorbed.  For sores on tongue we used oragel.  They gave him the numbing mouthwash, but it numbed his enitre mouth.  We found if we could numb the spot long enough to get the shake/water/food down it was better.  Look into camwell & miaderm for skin.  Both sold on Amazon.  The aquaphor made the skin hot & red & didn't stop the peeling.  We switched to these on week 4 & made a HUGE difference.  Instant relief from the pain & skin never burned or peeled.  Both all natural ingredients and developed by radiologiest oncoloyist.  Within 5 days after stopping treatment (35 proton w/ 3 rounds of ciplatin) face was completely normal & no evidence of radiation burns.  Week 3-4 is when the skin starts to feel burnt.  Day by day, step by step is how you will get through this.  Be well & stay in the moment.  

  • ricksmithgolfer
    ricksmithgolfer Member Posts: 87 Member
    edited July 2018 #11
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    wbcgaruss said:

    Rick for You

    I am praying for smooth going on treatments and your ability to handle the side effects. Praying God will strengthen you in this situation and I used the 23rd Psalm and the Lords prayer each day to help me. Sounds like you have enough weight built up in preparation. Do you have a port? As was said above Enjoy food while it still has the flavor to it and if they did not give them to you ask for swallowing and jaw exercises. This helps counteract trismus-jaw opening and activity and swallowing. Swallowing was emphasized to me as the speech and swallowing folks said if you don't stay at it you will forget how to swallow and have to learn all over again. Sounds odd I know but they said it happens. Just get through one day at a time as this Bible verse says-Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. And if you get a chance check out this guy Ken Curtis he dealt with cancer for Eight years and made videos and wrote on it-https://www.rightnowmedia.org/Content/Series/954. So keep us posted it can be a bit rough at times phlegm in the mouth and throat can be a problem later on so if you get it stay ahead of it and keep it rinsed out use the salt water and baking soda combo to rinse your mouth as needed I recently used it when I had my tongue operated on to excise cancer and I think a teaspoon of salt to 8 ounces water and maybe 1/2 teaspoon baking soda works well. Many variations on the web but find something easy to mix and basic. Hey, we're all rooting for ya and hoping and praying for smooth treatments, low-end side effects, and a quick recovery-take care.

    port question

    Thanks for your reply. Onclogist did not feel I needed a port. Also both the Oncologist and Radiation doc both did not want me to geet a peg tube. Hopefully, with all the extera weight I have one will not be needed.