Lhermittes

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Hi everyone

saw my consultant yesterday and all good.  My taste is not too bad and I have made big improvements in my eating in the last 3 weeks. I can eat many more things and my apetite has picked up.  (Not back to where it was but much improved). My saliva has improved a tiny bit but no where near where it was. I think the lack of saliva is the hardest thing to deal with.   I have also been diagnosed with Lhermitte’s sign.  It started last week snd is a mild tingling in my legs when I look down. My consultant said it is quite rare and he said it would go away but would hang around a long time.  Has anyone else had this please? 
regards

lizzie123

  • Yes me. Not as rare as they say. Mines got better insofar that’s it’s not painful but I can still feel a sort of fizz. 
    Can I recommend acupuncture and xylitol chewing gum for your saliva. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Dani.  Yes, mine is a sort of fizz.  It’s not painful. So you still have yours at 3 years on?   Has it got better or worse or stayed the same?   I would be interested to hear please. I have started trying the gum.  It’s been too minty before but it does help a bit.  I don’t like chewing it much. I plan to investigate acupuncture, I know lots of you on this site recommend it.  I haven’t felt like sorting these things out until these last few weeks.  It’s on my list to do.  
    Thankyou for replying

    lizzie

  • Hi Lizzie. It’s better. It doesn’t bother me. I hardly notice it. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Lizzie. We saw our consultants on the same day! Thanks for your message earlier. 
    I get Lhermittes when I look down too. Have done for months. I’ve learned to pretty much ignore it as it’s not serious and is not painful. That said, I was quite alarmed when it started. It is very slowly improving. 

  • Thankyou to both of you for your replies.  It is lovely to know everyone is out there and I am not alone. 

  • I've never heard of this, and (I'm going off at a tangent again, sorry) did a double take when I saw the name in my notifications, because in 2007 my wife and I bought a painting, as a fortieth birthday present for her, by an artist called André Lhermet. Bought it from the man in person in his studio in Cordes-sur-Ciel, an amazing place; painting now belongs to my son because my wife meant for him to have it one day.

    I'm adding nothing to the discussion but just thought I'd share the memory it triggered Slight smile

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    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • That’s a brilliant story Mike. It must have come as a bit if a jolt that notification. Spooky. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Did it send tingles down your spine Mike? If so, it’s a genuine Lhermitte!