Looking for tips!

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Hi there

I'm new to the site but have found it to be a great resource so far. I am 30 years old and was diagnosed with SCC of the tongue HPV negative, in October. (When I was 18 weeks pregnant!) I went through two surgeries, one being a hemiglossectomy the day after Christmas. luckily, the cancer was just localized to the tongue and didn't spread to any lymph nodes. However, because of the growing pattern, they recommended radiation and chemo. i delivered a healthy and happy baby boy (praise God!) in mid February and now have one more chemo (Cisplatin) and 6 more radiation treatments left.

this weekend though, things have caught up with me! The mouth sores, slight swallowing changes, sore gums, sore throat, etc. I was just wondering if any of you had any tips for these side effects that really helped you. Seems like I'm swishing and rinsing every hour to get some relief....the pain meds don't seem to make a huge difference. Is there anything you can share? 

Thanks!

Comments

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
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    Mouth Wash for dry mouth and ask your doctor

    I used the over the counter mouthwash for dry mouth and that helped some.  My doctor tended to ignore my questiosn about the pain in my mouth and trouble swallowing, He was like I am taking care of the cancer and that's all I do.  I finally press the doctors to help and keep gently saying that I needed help, they gave me serveral perscriptions that did help.  I think the cancer doctors are so consentrated on the cancer part they forget about the side effects.  I suggest you pin them down on what can help.  Its was hard to do when I was worried that I did not want to upset the doctors who were critical to saving my life, but if I could not eat and function I would not have had the strengtth to go through with the treatment.  Also talk to the nurses and often they can get the docs to pay attention.  

    At first I avoided the pain meds, tough guy.  My son sort of forced me to take them, wow did they help.  I was a little worried about adiction, but talking to a doctor friend of mine he said that as long as I was in that much pain there was almost no chance of adiction as the pain meds were just blunting the pain and he never heard of anyone getting addicted who was in real pain.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    Tips-R-Us

    Mrs.KC,

    Welcome to the H&N forum, so sorry you find yourself here.  Congrats on the new baby boy, that’s a mountain of happiness to add to your story.

    I was stage IVa SCC,BOT,1 lymph node, HPV+ (surgery, rads & Erbitux).  I was swishing and spitting the soda, salt & water mixture all the time.  For throat, tongue and mouth discomfort I used magic mouthwash, it worked great for me.  I emptied 6 bottles, swishing and swallowing every drop.

    I also had a bottle of Lidocaine Hydrochloride 2% for spot treatment of sores.

    You are almost finished, hang in there, stay hydrated and nourished and keep swallowing.

    Matt

  • MrsBD
    MrsBD Member Posts: 615 Member
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    Congratulations on being a

    Congratulations on being a new mom! I can't imagine going through all the treatments while having a little one. You are one tough lady. I had SCC, base of tongue, non smoking, non HPV, with radiation and chemo (Erbitux ), but no surgery. Your mouth sores should start to improve soon. My sore throat slowly improved over three months, but everyone is different. Magic Mouthwash and baking soda/salt water solution helped somewhat, but what really worked was Hydrocodone.  My doctor also said not to worry about addiction. If you are not experiencing excess mucus yet, be prepared. My doctor recommended a humidifier and Mucinex at night which did the trick. As far as swallowing, you might be able to get exercises to strengthen your tongue muscles. If you've been reading these posts, you've probably seen people say healing takes a long time. I'm six months out of treatment and feel great, but it took about five months to get there. Drink lots of water, take your vitamins, get the best nutrition you can, and be patient. Soon we'll be celebrating your baby saying his first words and your doctor saying ,"NED!" Blessings!

     

     

  • wmc
    wmc Member Posts: 1,804
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    Just want to say WELCOME

    Welcome and also sorry you need to be here. Congratulations on your Son. I gift so precious. I never had chemo or radiation just surgery so I will let the others let you know what works the best. Most of them went through that and will be happy to help. Just take one day at a time and today is the only one that matters. When you get that over whelmed feeling just come and vent. This is the one place that really knows what you are going through and feel. We're also open 24/7..............When you think you're having a bad day just hug your son. Also you might want to write this in a jurnal for him later for when he is older. He will know just how hard you fought.

    Bill

  • Bart T
    Bart T Member Posts: 62 Member
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    HANG IN THERE

    Sorry you find yourself here. I had pretty much the same thing, hemiglossectomy followed by radiation and chemo, but the chemo had to be stopped early because of side effects. I remember the worst time for me was the tail end of the radiation and the weeks that followed. I’d say it was about at least four or more weeks from when I finished to when I started to feel like I was improving, and even then I was very disappointed in the pace of my recovery. It was slower than I expected, and it was not on a straight line as I expected, but had a series of ups and downs.

    I wish I could give you some tips on handing the pain, but nothing seemed to work well for me. The magic mouthwash and lidocane provided some temporary relief, so I’d suggest you use them as liberally and often as you’d like. I might as well have been popping candy for all the good the pain meds did. In fact at one point several weeks after the radiation, I saw a pain management doctor who offered to put me on methadone. At that point I decided to stop all the pain meds completely, and it turned out I was no worse off without them.

    Probably my only real advice is to believe that you will bet better. There were times where I just felt I never would get better, and those moments were very depressing. Just keep telling yourself you will get better and focus on the many good days yet to come. My radiation doctor insisted she never had a patient that didn’t recover, and she assured me that I wasn’t going to be the first. I know how hard it is to believe it when you’re feeling the way you do now, but be patient. Better days will be ahead for you. I’m about two and a half years post radiation, and except for some annoying side effects (mostly dry mouth and sensitivity alcoholic beverages, and spicy or tangy foods), everything for me is as normal as it was prior to the cancer or treatment.

     I wish you all the best for a speedy recovery.

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Welcome Mrs. to

    this great forum!  You're going to hear about MM (Magic Mouthwash) as an answer by a number of people here.  I had it, too.  It has to be prescribed by your Dr.....and you might have to ask for it, I did!  It appears there are many recipies for MM, and every pharmacy has it's own favorite.  The Drs. seem more than willing help when we ask, but they don't seem to want to think up anything on their own.  I also had the Lidocaine, but it numbed me up so much I couldn't even swallow.

    For actual sores I sipped and held L-Glutamine in my mouth....you can swallow it (side effect is that it's good for digestion)....

    WHOO HOO...you're in the the single digit countdown for rads....the last day of rads is a BIG deal!  There's still some rough weeks ahead, but at least you don't have to go for a daily zapping anymore.

  • avisemi
    avisemi Member Posts: 172
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    Congrats on the little one!

    Congrats on the little one!  Ours was 6 months when my husband got diagnosed. While she added some challenges to the hard situation, I call her my joy child since she brought me joy even during the hardest periods. 

    the Glutamine helped. Eventually, narcotics were a must. I read a lot of the old posts and got some good ideas to try. 

  • hwt
    hwt Member Posts: 2,328 Member
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    avisemi said:

    Congrats on the little one!

    Congrats on the little one!  Ours was 6 months when my husband got diagnosed. While she added some challenges to the hard situation, I call her my joy child since she brought me joy even during the hardest periods. 

    the Glutamine helped. Eventually, narcotics were a must. I read a lot of the old posts and got some good ideas to try. 

    Congrats

    Congrtas on the new baby boy! I used magic mouthwash for several years. During tx, I had horrific sores on my lips and happy to say, as soon as tx finished they improved rather quickly. significantly by week 2 post tx.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    mrs, i'm so very, very sorry

    mrs, i'm so very, very sorry for your situation!  how awful and what terrible timing.  i'm sorry you need to be here but very glad you found this site.  it is a wonderful site with caring and helpful people.  we will do all we can to help you through.  i never had sores so i can't help but wanted to welcome you to the family.  congratulations on being a new mom!!  what a wonderful blessing!

    God bless you and your family,

    dj

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
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    what worked for Jim

    1.  Magic mouthwash

    2.  Pain meds

    3.  Rinsing every night first with warm salt water and then baking soda in warm water

    4.  Mucinex

    Be sure to talk to your oncologist nurse and doctor.

    Nutrition and hydration are very important.  Ensure if you can't eat and drink as much water as you can.

     

  • Mrskickingcancer
    Mrskickingcancer Member Posts: 2
    Options

    Mouth Wash for dry mouth and ask your doctor

    I used the over the counter mouthwash for dry mouth and that helped some.  My doctor tended to ignore my questiosn about the pain in my mouth and trouble swallowing, He was like I am taking care of the cancer and that's all I do.  I finally press the doctors to help and keep gently saying that I needed help, they gave me serveral perscriptions that did help.  I think the cancer doctors are so consentrated on the cancer part they forget about the side effects.  I suggest you pin them down on what can help.  Its was hard to do when I was worried that I did not want to upset the doctors who were critical to saving my life, but if I could not eat and function I would not have had the strengtth to go through with the treatment.  Also talk to the nurses and often they can get the docs to pay attention.  

    At first I avoided the pain meds, tough guy.  My son sort of forced me to take them, wow did they help.  I was a little worried about adiction, but talking to a doctor friend of mine he said that as long as I was in that much pain there was almost no chance of adiction as the pain meds were just blunting the pain and he never heard of anyone getting addicted who was in real pain.

    Thank you all for your help!

    Thank you all for your help! What a blessing to have found this site and all of YOU!

  • avisemi
    avisemi Member Posts: 172
    Options
    Hi there,
     
    don't have much

    Hi there,

     

    don't have much to add since folks already mentioned everything that worked for my husband. Congrats on the little one. You are a super mom! I'm sure it is not easy to take care of your little one and deal with your treatment but you have such a good attitude. :)

    Image result for super mom