long term radiation problems assoc with ssc base of tongue

dmey
dmey Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
My husband was diagnosed and treated for stage 4 base of tongue ssc seven years ago. After 8 weeks of chemo and radiation followed by a radical neck dissection, he has been cancer free since! The effects of radiation seem to be accumulating though. He has developed problems regulating his blood pressure with fluctuations between high (170/110) and low(60/40) creating weakness, fatigue and memory problems. The doctors are working to deal with the problem thinking there is nerve damage to the vagas nerve. He has developed numbness in both arms due to brachial plexis nerve damage as well. Anyone experiencing these same problems and if so how are you being medically treated? Thanks!

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • laurena
    laurena Member Posts: 16
    #3
    I have nerve damage due to radiation. My hands are numb and it is worse in cold wheather. I take neurontin 3 times aday. Take care!
    Laurena
  • dclear14
    dclear14 Member Posts: 36
    #4
    My husband robert was

    My husband robert was diagnosed with scc base of tongue stage 4, 9 years ago.  He is still dealing with swallowing issues and now the numbness in his left finger is radiating up his arm.  I'm going to ask the doctor about neurontin for him.  Any other suggestions?

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    edited July 2021 #5
    dclear14 said:

    My husband robert was

    My husband robert was diagnosed with scc base of tongue stage 4, 9 years ago.  He is still dealing with swallowing issues and now the numbness in his left finger is radiating up his arm.  I'm going to ask the doctor about neurontin for him.  Any other suggestions?

    I Think You Are Referring To

    Neuropathy or what they call peripheral neuropathy. I have the same thing and have had it since I finished my first cancer treatment in 2013
    It comes from the cancer drugs, chemo they use to help get rid of the cancer.

    Certain chemo drugs are more likely to cause CIPN. Some of the more common ones include:

    • Platinum drugs like cisplatin, carboplatin, and oxaliplatin
    • Taxanes, including paclitaxel (Taxol®), docetaxel (Taxotere®), and cabazitaxel (Jevtana®)
    • Plant alkaloids, such as vinblastine, vincristine, vinorelbine, and etoposide (VP-16)
    • Immunomodulating drugs (IMiDs), like thalidomide (Thalomid®), lenalidomide (Revlimid®), and pomalidomide (Pomalyst®)
    • Proteasome inhibitors, such as bortezomib (Velcade®), carfilzomib (Kyprolis®), and ixazomib (Ninlaro)

    Recently in the past couple of months mine finally seems to be getting a little worse.
    I don't know if this is just a little fluctuation and will recede again or is permanent.
    It is worse later in the evening.
    Still overall pretty bearable.
    I also blame this for a change in my normal bowel function but I drink some prune juice every morning to help with that.
    Since this was first noticed in 2013 I have been prescribed Gabapentin 300mg 3 times a day.
    It takes the annoying edge off of it.
    I mostly take it 2 times a day.
    Lately in the evening if it gets worse I take 2 Advil and that seems to help a lot.
    It really can't be cured or medicated away you just have to come up with a plan to control it and make it tolerable to you.
    Here is a link with info on it  https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/peripheral-neuropathy/what-is-peripherial-neuropathy.html
    Also here is a Youtube link with many videos covering it  https://www.youtube.com/results?search_query=peripheral+neuropathy+from+cancer+treatment
    Check with your care team or especially your chemo people and let them know what's going on they should be able to help.
    I also found this link in my archives with a lot of info and embedded videos from Memorial Sloan Kettering Cancer Center  https://www.mskcc.org/news/managing-chemotherapy-induced-peripheral-neuropathy-after-treatment
    Take Care-God Bless-Russ

     

     

     

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #6
    dclear14 said:

    My husband robert was

    My husband robert was diagnosed with scc base of tongue stage 4, 9 years ago.  He is still dealing with swallowing issues and now the numbness in his left finger is radiating up his arm.  I'm going to ask the doctor about neurontin for him.  Any other suggestions?

    You May Also Want To

    Get with a speech therapist in reference to your husband's swallowing issues.
    I don't know you may already have one if not check with your cancer team and they will refer you to one.
    They don't just do speech problems but everything related to H&N problems, swallowing, the whole works.
    If he hasn't had a swallowing test that is probably the first thing they will do.
    They can see everything in real-time as he swallows and know where his problem lies.
    Here is a video on a swallow test and how it works https://www.youtube.com/watch?v=dRvYL_TAtKI
    They may also give him swallowing exercises to do  https://www.youtube.com/watch?v=aZTXHwmOK6Q
    Also if his chew and swallow function are pretty good it may be his esophagus is narrowed from the radiation.
    So possibly what they call an esophageal dilation would help him it is where they carefully put sort of a balloon-type thing in your throat and carefully inflate it or some other method but they can only go a little at a time to avoid tearing the esophagus and if needed may be done in several trips.
    I had four altogether.  https://www.asge.org/home/for-patients/patient-information/understanding-eso-dilation-updated
    You would see a gastroenterologist for this.
    Wishing You The Best-Take Care-God Bless-Russ





     

     

     

     

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    edited July 2021 #7
    dclear14 said:

    My husband robert was

    My husband robert was diagnosed with scc base of tongue stage 4, 9 years ago.  He is still dealing with swallowing issues and now the numbness in his left finger is radiating up his arm.  I'm going to ask the doctor about neurontin for him.  Any other suggestions?

    Also As Far As His

    Neuropathy goes he is lucky it is only a small finger problem.
    I have some level of numbness and tingling in both my hands and feet and it radiates somewhat up my calves and forearms.
    I have to be a little cautious walking on uneven surfaces as numbed-down feet affect balance somewhat.
    I don't see this discussed much on CSN so there must not be many people affected by it.
    Take Care-God Bless-Russ

     

     

     

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