tongue cancer

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  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #22
    Tonita said:

    Yes, had 42 lymph nodes taken

    Yes, had 42 lymph nodes taken.

    Similar

    Kind of strange.  Your case is very similar to mine.  My tongue is now shorter.  Can't whistle, clean my teeth with my tongue because it's too short and it looks crooked.  Also had 42 plus or minus lymph nodes taken out of my right neck.  And last but not least, cannot roll my rrrr's anymore when speaking my limited Spanish.

    Small things really.  I was just so relieved when I woke up from surgery that I still had most of my tongue.  No complaints.

  • donfoo
    donfoo Member Posts: 1,773 Member
    #23
    lhovey said:

    Lidocaine

    I have an update.  My blood pressure had gone way up because of the nerve pain so I started doing some research.  I bought some over the counter Lidocaine.  I just got a generic brand but Aspercreme is a brand name.  Once a day, I have been applying it to my neck and shoulder and it has calmed down my nerves or at least I don't feel them constantly all day long.  It has lowered my blood pressure.  It is amazing what the body copes with because now when the nerves begin to "Poke" at me, I realize how much pain they were causing.  It has been a miracle for me and hopefully my nerves will learn to calm down.  If not, at least it lowers my blood pressure.  

    prescription

    If lidocaine is working, get your doctor to prescribe it. Covered and stronger.

  • MGC
    MGC Member Posts: 72 Member
    #24

    Lidocane for nerve pain? That is new to me but interesting. 1/2 of my face feels like its in a vise for the last 3 years thanks to a radical neck dissection and radial arm free flap operation but I never considered Lidocane.

    I have not had cancer for 12 years.

  • big G
    big G Member Posts: 177 Member
    #25
    https://csn.cancer.org/discussion/315809/tongue-cancer

    Sorry your here, I had Tors, base of tongue removed, neck disection, 40 plus nodes removed, 33 Imrt tx. Dec 12th will be 4 years post last tx. Dry mouth, try to massage the neck area daily if you can. It will get better with time. Use xlitol tablets at night for dry mouth. Drink often while eating, and I carry a bottle of water with me pretty much all the time. Stay positive and do what you must. Good luck and take care.

  • Ssundaram
    Ssundaram Member Posts: 4 Member
    #26

    I had t3 with peri neural invasion in March 2020. Had flap resection surgery to remove and replace tongue and some nerves with arm tissue which was then operated tp get tissue from my tongue. They removed 22 lymph nodes, Had 6 weeks of radiation and no chemo. 2.8 years hence and am still not eating even salt or spicy foods but have run 2 15k races and one 10k. Only issue is the tongue sensitivity to most food and neck movement is restricted and there is always pain in neck area because of couplings that had to be put in to reattach some of the nerves. Cannot complain much though. Though it is so awkward when you go to dinner or out with friends, No soda, no alcohol , no salt and no spice, no fruits, no sour stuff puts a severe damper on my lifestyle which is my only complaint. Hey but it could be worse.

  • Ssundaram
    Ssundaram Member Posts: 4 Member
    #27

    Do drink a ton of warm water, helps with the swelling in tongue, and helps food go down. Use water pic to floss after any meal. Use biotene mouth wash for dry mouth. Stay away from too cold or too hot foods. There is a dim light at the end of this tunnel. I never smoked and was only a casual drinker (4 -6 times a year) snd yet got this huge tumor. So live for the minute and enjoy today. My speech is not bad but you can hear the slurring. I cannot sing which was my passion, I keep getting sores which have to be biopsied and then you wait for result ( during which time I get to swear a lot and so that is not so bad.). but I count all the other positives such as being able to run, cook again for my family, do full time work, and go about enjoying my other passion of watching tennis, football and cricket. So, my big piece of advice is this. See this through. It WILL get better.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #28

    Thank you Ssundaram for your personal story. I hope the sores stop you certainly don't need that. Thanks for your advice and positive attitude to deal with living after treatment, that is a big factor our attitude and how we deal with the after effects.

    Wishing You the Best

    Take Care God Bless-Russ

  • amineart
    amineart Member Posts: 4 Member
    #29

    Great story updates. I am at 1 year now from when I found the growth (Squemous Cell Carcenoma) in my mouth on the side of my tongue. RIght before Christmas 2021. Had Tongue Cancer Surger in February 2022, took 1/3 of my tongue, rebuilt it from my left ForeArm. they cut my neck to get to lymphnodes on the left side. Had Radiation for 5 weeks. I still have some tingling in my left side of my face and neck. Neck is tight, but keep working to stretch it out.

    I also use the Xylitol Tablets at night for moisture while sleepting. I also keep a 30oz cup of water with me all day long. I also cannot handle spicy foods anymore, very sensetive to heat/cold foods as well. Some taste coming back, but don't expect it to be fully restored since I lost 1/3 of my tongue.

    It gets better every week, small steps. I also have some slight speech issues, but I figure, it could be worse.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #30

    Very good Amineart, so glad you have completed treatment and have been recovering and adapting to your new normal. You sound so positive and that is a great attitude to have and a position to be in. You are one of the many on here that have fought the beast and are moving forward. If I figger it correctly you are about 8 months out since finishing treatment and are doing well. That is great news. I congratulate you. It is an accomplishment. This is a tough treatment regimen, this H&N stuff. I would say the tingling you feel and possibly some numbness you have and the sensitivity to hot and cold foods plus any other differences still have time for improvement. You are not that far out of treatment on the H&N clock although your treatment and recovery are certainly not recent, so keep looking for even more improvements and I hope you get many and much. You are right it gets better every week with small steps. Do you have any follow-up scans in the future? They usually do a follow-up CAT scan or PET scan to verify the effectiveness of your treatments. And we want them to read NED ( No Evidence OF Disease ). Or as some doctors refer to it after reading a scan ( Unremarkable ).

    What does unremarkable mean medically?

    Unremarkable meaning describes the report as normal, which means that there is nothing to report. Nevertheless, it's a very powerful word used by radiologists that is helpful for medical experts. In the case of unremarkable meaning, there is nothing to worry about. It reflects that the patient is fine.

    Wishing You the Best

    Take care, God Bless-Russ

    never-give-up-caricature.jpg


  • Ssundaram
    Ssundaram Member Posts: 4 Member
    #31
    https://csn.cancer.org/discussion/comment/1702358#Comment_1702358

    i had 1/3 of my tongue replaced. I was distraught at not being able to talk more than anything. So, I tried all kinds of vocal exercises with my sisters and daughters help who are singers and those breathing exercises plus constant yapping - even when it does not make sense means I now have intelligible speech with what I call a “cute child-like lisp”. I didn’t want to live if I could not talk. It was that bad. I was a singer too before this but can’t anymore and my voice is now more base and different. But hey that’s why we invented the words - interesting and unique. Keep doing it singing exercises are great, especially the ones you do with nonsensical words and tongue twisters.

    and unique

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #32

    Amineart I am glad that you had the tenacity and set your mind on not giving up and getting to talk again was your focused goal. You were surrounded by a good support group of daughters and sisters and that is a big part of the story when dealing with cancer. You exemplify the way to handle recovery from this and exemplify the theme of our Head and Neck Section here. Never Ever Give Up. Yours is a great example of overcoming obstacles and refusing to take no for an answer. An inspiration to us all.

    Take Care God Bless-Russ

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