Looking for advice about radiation tx

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jenm123
jenm123 Member Posts: 3 Member
in Head and Neck Cancer #1

49 yo female/non smoker. Diagnosed with squamous cell carcinoma on my tongue.  It was caught early, was a small spot on my tongue and was anticipated that surgery (with modified neck dissection) would be the end of it.  Blessedly I made it thru the surgery with very few issues and am healing well. Unfortunately the neck dissection revealed that out of 28 lymph nodes removed the cancer was found in one of them so I am headed for radiation (6 weeks/5days per week).  Again I feel very blessed that my cancer is in early stages, my initial tx/surgery was (all things considered) fairly easy and that I have a good prognosis.  After reading many blogs/support group posts I know I have it better than many! Still, I am anxious about radiation tx and what it will bring.  Can anyone give me advice on what to expect...my big questions are (understanding everyone reacts to tx differently):

-what is the major side effect that will hit me most (I've been told I won't be able to work after week 3 )..fatigue, mouth sores, sore throat, etc.?

-Suggestions on nutrition?  Will I absolutely not be able to tolerate solid foods? I've seen Boost and Ensure are good options plus some recipes for high calorie shakes.  Any other options?

-My son is moving in to college (freshman) about 1 1/2 weeks after my final tx.  Is there any way I will be able to be there for him? 

-Any other helpful advice?

 

I really appreciate any responses.  I've found a few support/survivor blogs and have found them very inspirational. I have a good support group around me but there is nothing like being a part of a community with those who have been there/done that! 

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  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #2
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    I am about halfway through

    I am about halfway through-about three and a half weeks.  For me, the first symptoms were the burning mouth and sores.  I have been doing manuka honey 15 minutes before treatment-hold in your mouth and then swallow before they strap you in to the ride-haha but a couple weeks in it got really bad.

    Monday I cried when I put my mouth guard in.  Tuesday, I dabbed a tiny bit of viscous lidocaine on my lips so they would stop hurting long enough for me to wrap them around the mouth guard.  Same thing for Wednesday and Thursday.

    Someone here said glutamine powder was very healing for the burning mouth and sores.  I have a bottle of baking soda water I drag everywhere with me and I added a teaspoon of glutamine to it and shook it up.  Every chance I get, I have a little dab of this water in my mouth and I had major improvement in just two days.

    Today, I forgot to put my lidocaine on.  I didn't cry I actually started dozing off during my treatment.  I was thrilled!

    Solid food?  My mouth was so sore I gave up on it.  Also, in the last weeks, I have been cursed with a continuous salty taste in my mouth.  I have been hard pressed to find anything that doesn't taste like salt.  Water tastes like salt.  I have been doing smoothies but now they taste like salt.  Sometimes I put water into my peg tube because I can't stand the salty taste.

    Someone here said coconut water wasn't too salty so I tried it and it wasn't bad.  My mouth settled down enough from the glutamine that I was able to eat a couple of over easy-extremely easy-eggs.  I am thrilled.  Today was a great day.  A few small victories and a taste of real food!

    Yogurt, ice cream, poached eggs, mashed potatoes, cream soup are all good soft foods if your tastebuds aren't too fouled up.

    At the top of the forum there is a sticky called Superthread.  It is packed with useful information and one section discusses soft foods.

    Also, you can type into the searchbox and see old threads discussing whatever you-re curious about.  Those are helpful.

    I'm kind of a noob but I wanted to respond so you don't give up sometimes the board is slow but there are many kind people with much valuable information that will be dropping by soon I'm sure.

    Regards,

    Ozy

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #3
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    I forgot to add make sure you

    I forgot to add make sure you do any stretching or swallowing exercises they give you.  I have read it's very easy to lose swallow.  They will also prepare you for radiation treatment.  I have to stick my tongue in a mouth guard that holds my mouth open and if I didn't do my exercises I might not have been able to swallow under those conditions.

     

  • jenm123
    jenm123 Member Posts: 3 Member
    edited June 2021 #4
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    ozymandible said:

    I forgot to add make sure you

    I forgot to add make sure you do any stretching or swallowing exercises they give you.  I have read it's very easy to lose swallow.  They will also prepare you for radiation treatment.  I have to stick my tongue in a mouth guard that holds my mouth open and if I didn't do my exercises I might not have been able to swallow under those conditions.

     

    Thank you so much for the

    Thank you so much for the response and advice. It makes a world of difference to know (and be able to connect with) others who are going thru this rotten thing too.  I wish you good luck with the rest of your treatment! 

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #5
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    Thank you.  I wish all of us

    Thank you.  I wish all of us luck.

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    edited June 2021 #6
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    Jen,

    I'm sorry you have to go through this.

    Radiation for me wasn't too challenging, but it varies by person. Your skin will get "sunburned" a bit, and swallowing can be difficult for a while. Use the moisturizers that your Oncologist recommends (or gives you). If you can keep eating or at least drinking water and/or smoothies, do so!

    I always tell people to EAT EAT EAT - all of your favorites, and LOTS of them. You will almost inevitably lose weight, through the process...

    Chemo to me was much more difficult. You didn't mention that, and I'm hoping you will stay with Radiation only!

    I was able to work all the way through, but healing takes a lot of energy. You may find yourself tired for a while. Get rest when you need it...

    The most important thing is to maintain a postive attitude and to have a team of people who care about you to help you through it. Remember, all of the side effects are generally just temporary. You will get back to a normal life again ... it just takes time...

    I wish you the best possible outcome!!

    MG

  • BOB438
    BOB438 Member Posts: 21 Member
    #7
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    Radiation or no Radiation

    Hi Jenm123, I too am sorry you have to go through this.  I was in the same situation as you, started with squamous carcinoma on the floor of my mouth just below the back of my tongue.  Had surgery June 10, 2017.  Went a year before a Pet Scan indicated a hot spot (lymph node) right side of neck.  Another surgery (radical lymph node disection) June 2018, removed 23 nodes, one cancerious.  My next Pet scan indicated another hot spot, left side of neck.  Needle biopsy indicated it was cancerious, I was offered radiation/chemo treatment at MSKCC.  I opted for another surgery as I my research of radiation and chemo side effects scared the hell out of me.  I also have personal knowledge of two (2) of my friends that went through the treatment.  The cancer is currently NED (no evidenc detected) however the side effects of their treatment are horrible.  53 lymph nodes were removed, 1 was cancerious.  Here I am almost 3 years after my last surgey and Pet Scans and Cat Scans continue to show NED.  My most recent CT was June 8th, 2021.  My surgeon told me he is now moving my 6 month scans to once a year.  He said if I get an NED in June of 2022 he would feel confident to discontinue them going forward.  PLEASE REALIZE EVERY CASE IF DIFFERENT.  For more details of my case search for topic "Radiadion or no Radiation" in this group (head & Neck) and you can read my story in more detail.  Wish you the best in any decision on your treatment.    

  • Duggie88
    Duggie88 Member Posts: 760 Member
    edited June 2021 #8
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    Jen

    Jen

    Welcome to the club nobnody ever wants to join. I had a full neck disection and they removed my epiglottis, part of the base of my tongue, uvula, and a few lymph nodes. After the surgery the doctor told me he was preety sure he got it all but if I go through 30 (6 weeks) radiation treatments there is a 98% chance if there is any cancer  it will be zapped. My mindset was I have something in my body that doesn't belong there and I want it out so it wasn't a hard decision to go through the radiation. It wasn't easy but like I tell everyone who wants to do battle this way, if I can do it anybody can. That was the end of 2009 and the beginning of 2010. After six years the doctor guaranteed me I was going to die someday but it will not be from throat cancer. If I had to make the same decision today would I do it? Dam right I would. I went to a llearning hospital ( The Hospital at The University of Pennsylvania in Philadelphia) and I am here to say they were the best. So if you seek a second opinion I would go to a learning hospital or a place that just attacks cancer. I was very tired after 30 radiation treatments but was able to attend functions such as your son going to college. Matter of fact you can use that as something to look forward to at the end of your treatment. Like you said we are all different and I was one who did not react as well as others to radiation. I started having symptons the third day that they said I would have about two weeks.But my brother gave me something to look forward to after treatment was over so I used that to help me get through. Again, Jen, if I can do it anybody can. Yes there are hurtles to jump over but people here and your medicaal staff can help lower those hurtles and before you know it you'll be saying that Jeff was right, he did it and so did I.

    Most importantly.............. StayPositiveStay Strong

    Enjoy the day..............I do...............Every one of them

    Jeff

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