Treatment begins tomorrow

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Was diagnosed with Stage II SCC of the lateral tongue with perineural involvement on Oct 26th. I had a partial glossectomy and right neck dissection on Nov 28. I healed well and have been eating everything I know I will miss!! I begin my first Cisplatin treatment tomorrow and radiation begins on Wed. I am feeling nervous, but know that you all are experts and I can find answers to all my questions here!! Any advice as I begin down this road? What did you wish you knew when you started?  Thank you in advance! 

Shannon

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  • swopoe
    swopoe Member Posts: 492
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    Great advice from MarineE5.

    Great advice from MarineE5. My husband was diagnosed with stage 1 SCC of the lateral tongue with perineural involvement in October 2015. He had the same treatment you had so far and what it appears you are going to have (cisplatin and rads). My husband did really well. He worked through his treament and has been NED (no evidence of disease) since his very first post treatment scan. He is doing great these days. He did have a PEG tube because after about 3 weeks of rads, he couldn't swallow anymore. And the PEG helped him keep his calories up, along with hydration. Another thing is to keep your radiated areas really well moisturized. My husband put aquaphor on right after radiation and again before bed (sleep on a little towel on your pillow because the aquaphor stains). This helped my really fair skinned husband to have no real radiation burns. His doc was seriously impressed. While you can, eat and drink as much as you can. Lots of water. Moisturize. Ask here for questions.  And best of luck to you, Shannon. You can get through this.

  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    A few suggestions

    Shannon,

    You will get thru this like many of us here. Not everyone reacts to treatments the same, so what may seem hard to some, may not seem as rough to someone else. A few things to keep in mind is to continue to take in as much nutrition and calories as you can to keep your weight and energy up. One of the most important things for you to do is to stay Hydrated, so keep drinking orally as long as possible so you don't lose the swallow motion and need to go for therapy afterwards. 

    I see no mention of a PEG tube in your post, so I am guessing you are going to try and get thru this without one. You can get one at a later date if you need it. If you have questions, list them as there are a lot of knowledgeable people here with sound advice.

    My Best to You and Everyone Here

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    Here you go

    Daisynbax,

    You will do fine, just take it one day at a time and before you know it you will be on the other side.

    Drink lots of water and swallow often and try your hardest to consume lots of calories every day.  Being well hydrated and well-nourished is half the battle and can head off  lots of issues.

    Listen to your team, keep them informed, don’t try to tough it out, take your meds early and on time.

    Best of luck,

    Matt

  • MJG1
    MJG1 Member Posts: 137 Member
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    Treatment advice

    Best of luck to you.  My husband just finished.  I think a HUGE deal for us was the realization that a feeding tube was necessary for him to maintain his fighting strength.  It happened for him very quickly.  He was able to take in enough calories and fluids and then one week he was not.  I was counting his fluids and general caloric intake and realized we could not continue at the pace we were going so I called the nurse coordinator and it was scheduled the next day.  It sounds very scary to have a feeding tube, but it really wasn't nearly as big a deal as we thought it might be.  Today we're going for a follow-up and he no longer needs the feeding tube so it'll be scheduled to be out next week sometime....Sleep and take in as much nutrition as you possibly can.  One other thing.  We had a great nutritionist that came to appointments and gave very great advice on how to add more calories to food and the feeding tube.  Prayers and best of luck to you!  Tough journey no doubt, but doable.

    Margi Greene, St. Charles, MO

  • armana
    armana Member Posts: 97 Member
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    Your Teeth

    I finished 6 1/2 weeks of radiation for stage III tonsil cancer a little ove 2 years ago. I was able to get throuh it all without a feeding tube but shed about 30 pounds by the time I finished radiation. Just remember you have to start taking care of your teeth deligently for the restof your life. See the following link

    https://www.nidcr.nih.gov/oralhealth/Topics/CancerTreatment/OralComplicationsCancerOral.htm

    I use colgate prevident 5000 plus everynight before I go to bed and have not had any issues with my teeth up to this point.

    Good luck

    Arman

  • Daisynbax
    Daisynbax Member Posts: 4
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    Thank you

    thanks for all of your comments! Day one went great! getting ready for 2/33! Woot! 

  • Raddude
    Raddude Member Posts: 84
    edited January 2017 #8
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    Best of luck to you!

    Shannon,

    Good advise from the vetrans. Nutrition, take care of your teeth, hydrate, Skin care, etc. I never felt much until week 4. Going into week 5 I was very happy I had the tube. I could put anything I wanted in and stuff that tasted terrible but was good for me went down the tube. I also got an aloe vera plant and would cut a leaf off and cut it down the side to open it up after every rad and smeared it around the burn area. Felt immediate relief. I think you have the right attitude already. Keep us up to date.

  • danc1962
    danc1962 Member Posts: 11
    edited January 2017 #9
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    Great advice from everyone. I

    Great advice from everyone. I see we are unanimous on the PEG tube. I sure am glad I had mine. Don't wait until you need it. Get one. It can be complicated once treatments start and quite a set back. I know a guy going through that now. Let's just say, should have had the PEG. My treatments stopped November 16. Tests showing NED. I am getting my tube out Thursday. I wasn't in a hurry. It saved my butt. You can also use it to hydrate, take meds. Keep track of your calories and water intake closely every day. If you get constipation use milk of magnesia. I tracked that and bowel movements too. Hey, the painkillers and boost as your only intake, I sure had constipation and worried about that as much as anything.Use the Aquaphor and in the last weeks, maybe silver sulfadiazine cream. It is good stuff. Watch out for infections including thrush.Good luck, fight, win, God bless you.

  • CajunEagle
    CajunEagle Member Posts: 408
    edited January 2017 #10
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    armana said:

    Your Teeth

    I finished 6 1/2 weeks of radiation for stage III tonsil cancer a little ove 2 years ago. I was able to get throuh it all without a feeding tube but shed about 30 pounds by the time I finished radiation. Just remember you have to start taking care of your teeth deligently for the restof your life. See the following link

    https://www.nidcr.nih.gov/oralhealth/Topics/CancerTreatment/OralComplicationsCancerOral.htm

    I use colgate prevident 5000 plus everynight before I go to bed and have not had any issues with my teeth up to this point.

    Good luck

    Arman

    Teeth

    You know.....I've been using that Colgate Prevident 5000 for the last 8 years (Since the start of my treatment for Tonsil Cancer back in 09), and I've only had one extraction....a molar on the lower left side.  Went through those thirty dives of Hyperbaric Oxygen treatment prior to the extraction with no problems whatsoever. I got to give kudos to that Prevident 5000 for somehow protecting my teeth during this stretch of time.  My teeth have always been a literal pain all my life, and I've been expecting any week now for 8 years for them to start that crumbling that we all been told "may" happen after all that Chemo and Radiation.  Sure it's $12.00 a tube from my dentist, and I use it 3 times per day, but it seems to last quite a long time and does a good job......for me at least.

    Larry