Is it neuropathy or something else?

bones821
bones821 Member Posts: 7
in Head and Neck Cancer #1
Im a stage iv survivor who had SCC on the base of the tongue and the secondary site in the lymph nodes. I had 35 radiation sessions and three chemotherapy doses of cisplatin over seven weeks. My pet scan is clear and my oncologist and radiologist are telling me I am cancer free. That's the good news! The bad news is that I have a terrible case of peripheral neuropathy in my hands and my feet. I must walk with a cane and I am unable to use my hands. This has been going on for five months. My oncologist has sent me to a neurologist to see if something else is going on. Both my neurologists and oncologist have hinted that the radiation may have damaged a disc in my neck that would have an affected the nerves down my arms into my hands. They have done an MRI on my neck and taken 19 vials of blood for testing. I will not that get the results four one month. Has anybody else experienced this symptom? I am wondering if there is any treatment for this condition or if I need to just live with it. Any information and insight will really be appreciated. I am writing this e-mail using voice recognition since I am unable to use a keyboard.

Comments

  • KTeacher
    KTeacher Member Posts: 1,103
    #2
    Has your blood sugar been
    Has your blood sugar been checked in any of these tests? My husband had a lot of these symptoms and ended up having his neck fused. The voice recognition ap is working great. I had a doctor that used it and there were many errors. I know that it is a pain and frustrating but at least you are seeing more doctors. Goo luck and prayers your way.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Bones
    So sorry for your situation...has to be really tough.

    Welcome to the forum, many great people here with tons of history and experience.

    I was STGIII SCC Toncils HPV+, I also had three rounds of Cisplatin, along with a few other chemo drugs.

    I did not expereince the effects that you are going through. I was aware that the chemo drugs could cause neuropathy (both temporary and permanent)... My MD's advised me to let them know at the first signs.

    I'm sure others will chime in as I seem to remember others that started having symptoms and their MD's changed their mode of treatment.

    A lot here have also had problems with tennitus and hearing loss as a result, again both temporary and premanent.

    Thoughts & Prayers,
    John
  • KTeacher
    KTeacher Member Posts: 1,103
    #4
    Oops, Long Term Effects
    Check the long term effect site, many discussions on neuropathy.
  • shoeloy
    shoeloy Member Posts: 70
    #5
    Neuropathy
    I too have neuropathy from the chemo. Doctors at MD Anderson are unsure if it will get better. I have been on medication for it for months with no improvement. Tried Alpha Lipoic Acid, that didn't help either. I am thinking I am stuck with it. Good luck to you.

    Loyd
  • Goalie
    Goalie Member Posts: 184
    #6
    unilateral
    and only the leg. I had nine weeks of rads and also chemos (and operations but they aren't important in this context) and had unilateral neuropathy in just the lower right leg. The foot would flop and made walking difficult - forget about running! They even gave me a brace for a bit that would pick it up with each step. But they tested the nerves and everything and posited that it was actually weight loss. You see, I lost about 40 pounds that I didn't have to lose since I started at about 175 and in great condition. But the weight loss removed the sheathing of fat around the nerves and one in the leg - which may already be pre-stressed by an old injury - was basically so irritated that it couldn't function right and transmit the right signals.

    The cure was easy: gain weight. Once I'd gained back about 20 pounds it started to ease somewhat and by 30 pounds it was about back to normal with the lingering effects more from lack of use than injury.

    This may not be the case with you but it is something to think about. I am very sorry to hear about your problem, though and hope that it eases soon. Doug

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