lip twitching/stiff tongue

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momdau
momdau Member Posts: 3
edited June 2014 in Chemotherapy - Before, During, and After

Hi all,

I am new here. Actually, my 68-year old mom was diagnosed with BC earlier this year. I took off 3 months from work to take care of her at home. It's been an emotional roller coaster for all of us, especially me, which is why I need some sort of community support. My mom is an introvert and it's been hard to encourage her to step outside and meet others who understand what she's going through. I thought I'd be her sounding board...

Anyway, she's going through the TC treatment (4 times over 3 months). The biggest hurdle that she's facing now is that her upper lip has been twitching. I started to see it towards the end of her first treatment and it has continued up till now. It became more prominent after her 2nd treatment. Even now, 2 weeks after her 2nd treatment ended, it's still happening and she's panicking that it won't ever go away. Her tongue has also been feeling strange so she hasn't been able to control it well. She describes it as a stiff I think.

I've read that people have experienced eye twitching. Just wondering if any have experienced lip twitching and how long it took to go away. It seems that my mom's won't go away till she's fully done with chemo. I just want to give her some assurance that she's not the only one who's experiencing lip twitching and that it will one day be (hopefully!) ok. The oncologist thinks it's neuropathy, but do you agree?

Thanks for listening.  

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  • leggo
    leggo Member Posts: 3,293
    edited June 2014

    Momdau, sorry about your mom's diagnosis. It could very well be neuropathy. It could also be several other things. I'm just jumping in to let you know that if doctors have exhausted all other causes, it could be something called paraneoplastic syndrome, which can really wreak havoc, neurologically. It's very rare, particularly with breast cancer, but I just thought I'd mention it because I have this syndrome and the tongue thing (which affected my speech) is one of my many symptoms. There is also another lady on here somewhere with this as well. If I remember correctly, her tongue was also involved. I'll see if I can find her post and give you the link.

    Here's the link.

    https://community.breastcancer.org/forum/69/topic/817558?page=1#post_3887353


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  • momdau
    momdau Member Posts: 3
    edited June 2014

    Hi Leggo,

    Thanks for your prompt reply and letting me know about paraneoplastic syndrome. I looked it up and it seems to be really terrible. I'm sorry you have to go through this. Do you mind telling me what symptoms you experienced at first to lead you to find out that you had this syndrome? 

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  • leggo
    leggo Member Posts: 3,293
    edited June 2014

    If you click on the link, I posted there about my symptoms and Mimi posted about hers. It all started in my toes. This leads me to think that what your mom is experiencing is something else because she has no issues with walking. It was just the tongue thing in your post that caught my attention. I'll keep good thoughts for you that it's neuropathy and will improve with time.

    Here's the link again just in case the first one doesn't work for some reason.

    https://community.breastcancer.org/forum/69/topic/817558?page=1#post_3887353


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  • momdau
    momdau Member Posts: 3
    edited June 2014

    Hi Leggo,

    I just read the link. Sigh..unfortunately, my mom does have issues with walking AND balance! She walks much slower and her balance is off. Basically, she will stand and then eventually start to lean backwards and have to take a step back. Thankfully, she hasn't fallen yet. She can mostly walk without any help. She just walks very slow. When she stands and starts to feel her balance is off, she has to hold onto the wall. Strangely enough, when I push my mom's back or hip, she can walk faster. 

    This is really freaking me out. However, the thing is, my mom had some neck shoulder issues last year already and the slow walking and balance started happening even before chemo started. She did an MRI and many other scans but they came back negative. I saw that you had to do a specific blood test. My mom is going in for her 3rd chemo next Wednesday and has to do a blood test anyway. Can you tell me what kind of blood test you did so that I can request the oncologist to put that order in too? What is the name of the "thing" that they should be looking at?

    Thanks so much for this Leggo. I think most oncologist DO write it off as neuropathy, but whatever my mom's situation is, it's better to think of as many possibilities first.

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  • leggo
    leggo Member Posts: 3,293
    edited June 2014

    The blood test is expensive, and from what I remember the sample and results were processed through the Mayo clinic, which from my understanding, was the only place in North America that did it at the time. It took some doing to have it done. That could have changed since then. The test was to check for a particular antibody, called CV2. An over-abundance of this antibody is what lead to the diagnosis. Keeping my fingers crossed for you and your mom that the cause is much simpler. 

    After today, I'm going to be away from this board for a while. I do however, have pm notifications linked to my email so if you have any questions later, please Private Message and I'll know. I don't want to leave you stuck if you have questions. Anything I can do to help. 

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