Numb Lip Syndrome

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lisajo6
lisajo6 Member Posts: 261
edited November 2018 in Stage IV/Metastatic Breast Cancer ONLY

Has anyone had experience with this? Last Friday I noticed my left chin was numb. Not numb like the dentist. I can poke it, prick it, feel hot and cold. But after reading all about it-I am sure I have it and the prognosis is dire. Just months. I see my oncologist tomorrow. I am currently on abraxane and herceptin. I dont want a brain and jaw MRI-what is the point. I am freaking out. Plus I have a sinus infection and vertigo. Ugh

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  • bevin
    bevin Member Posts: 1,902
    edited March 2018

    i saw this pop up, sorry to bardge in. I wanted to share I had numb chin and lip, it ended up being bells palsey. Mri confirmed 7th nerve trapped and inflamed. I was out on steroids and a drug for a virus for several months and it cleared up. I hope your issue is something as easy. Wishong you well.

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  • keetmom
    keetmom Member Posts: 432
    edited March 2018

    They can do stuff if it has something to do with brain, so don't think there isn't a point, maybe it is nothing but good to know. I wish I could say it's nothing and it maybe just don't want you to give up,.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited March 2018

    A friend of mine had facial numbness (likely due to a virus) treated with acupuncture. It went away after severeal sessions.

    Good luck at the doctor's tomorrow. Hope it is not brain mets but if it is there's still hope! You can still have a good quality of life and it is not unheard of that brain mets disappear or remain stable after treatment. 

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited March 2018

    Lisa,

    I'll bet the sinus infection is causing it. Have you seen your doctor?

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  • lisajo6
    lisajo6 Member Posts: 261
    edited March 2018

    Hi,

    I actually had treatment today. He said he sees that syndrome maybe once every ten years. He wants me to finish up my antibiotics and if doesn't resolve I get a scan. So keeping my fingers crossed! He also did tumor markers today-so I will get them probably Monday-if they are up then I will ask for a scan right away.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited March 2018

    Lisa,

    I am so glad you saw your doc today. Don't forget that the infection might raise your TMs somewhat. It's been known to happen.

    All digits crossed for you.

    Jennifer

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  • lisajo6
    lisajo6 Member Posts: 261
    edited March 2018

    Thank you for responding. I still have the numb left chin and lip. I am so scared. I had a pet scan Jan.31, wouldn't something in my jaw show up? My pets are from the forehead to knees. would the pet have shown my brain stem or anything else in the back of my head?

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  • lisajo6
    lisajo6 Member Posts: 261
    edited March 2018

    Thank you for responding. I still have the numb left chin and lip. I am so scared. I had a pet scan Jan.31, wouldn't something in my jaw show up? My pets are from the forehead to knees. would the pet have shown my brain stem or anything else in the back of my head?

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  • lisajo6
    lisajo6 Member Posts: 261
    edited March 2018

    BlaineJennifer,

    My tumor markers went up 70 points in the month I have been on abraxane and herceptin. I am devastated. Could the antibiotic and sinus infection makem them rise that much?

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited March 2018

    Lisajo,

    If your TMs went up in the first month after a new protocol, that could very well be tumor flare. MY TMs tend to be highish (highest has been 3,000), so 70 points is not a biggie.

    Ask for imaging, if it will comfort you. A sinus infection could be causing the same symptoms as skull mets. I'm in the same boat. I have some wicked headaches at night, with a sore area over the right sinus, BUT my allergies are going crazy, and I have other symptoms of sinusitis.

    We have two choices: Rip the bandaid off and get imaging that will reveal - or not - cancer shenanigans, or wait in anxious silence for the symptoms to either get worse or subside. I've done both. Which would suit your comfort level?

    Jennifer

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  • lisajo6
    lisajo6 Member Posts: 261
    edited March 2018

    Thanks,

    I got a message from my doctor and he said I can't give up just because of a spike in a blood test. I do have to get an MRI of my head and jaw. Otherwise, we will stay the course with abraxane. Thank you for responding to my posts. My friends and family just do not get it.

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  • lisajo6
    lisajo6 Member Posts: 261
    edited April 2018

    Had an MRI. jaw and brain clear. Still ave a numb chin.

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  • Egads007
    Egads007 Member Posts: 1,603
    edited April 2018

    Lisa, this might be a dumb suggestion but you could check this out with your dentist. Might be worth a shot? Very happy to see your MRI was clear! Hope you get some answers soon

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  • lisajo6
    lisajo6 Member Posts: 261
    edited April 2018

    Thanks! I am going to make an appt. this is just too weird.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited April 2018

    Great to hear that jaw and brain are clear. The dental appointment sounds good. It could be an abcess in the lower gums impinging on nerves. You could also have hurt your neck or shoulders. You could see a physiatrist for these.

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  • lisajo6
    lisajo6 Member Posts: 261
    edited April 2018

    My dentist won't see me! He said my numb chin and lip have nothing to do with my teeth. And my onc told me today that the lesion may be too small for the MRI to pick up. I am so frustrated. Plus I have to get a cat scan of my chest/pelvis/abdomen next Friday to see if the chemo is working.

    Sorry, I am just so upset. I cannot even function.

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited April 2018

    Hi lisajo6,

    Just wanted to share my experience with numb chin/ lip. When I just started taxol last year in June, about five days after my infusion, my chin and lower lip became numb! For me, it felt like how it feels when I go to the dentist and they numb me up for a filling. It was really weird, but didn't hurt. My oncologist insisted that I go to the ER to rule out something serious like a stroke (I had some weakness in my arms also); luckily they didn't find anything there. My oncologist said he hadn't seen this kind of side effect. I called my dentist who checked me out and also looked at the medications and treatments I was doing to see if there was any link, but he also didn't find anything. (My dentist seems a lot nicer than yours) I even got a brain MRI and that was clear too, thank goodness! So ultimately I had this numbness for a few months. It kind of interfered with my eating, but wasn't too bad. It eventually faded away. I, personally, thought it was some kind of facial neuropathy, but no one could diagnose that for sure. My oncologist did say that maybe because I had a lot of dental work in the past, maybe I had a weak nerve in that area that was causing the numbness. Who knows! So I just wanted to let you know my experience and hopefully yours is not a big deal either. Take care!

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  • lisajo6
    lisajo6 Member Posts: 261
    edited April 2018

    Hi,

    Thank you for sharing your story. I was wondering did you have any teeth that felt numb? I have two.

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  • lisajo6
    lisajo6 Member Posts: 261
    edited April 2018

    Hi,

    Thank you for sharing your story. I was wondering did you have any teeth that felt numb? I have two.

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited April 2018

    Hey there! No, I didn’t have any numb teeth. A few months before that I felt numbness in the roof of my mouth. I don’t know if that was related but my dentist checked that out for me also and said it didn’t seem to link to any dental issue that he could identify. That went away also. So mine was numbness in my chin and lower lip, and it kind of moved to the right side as it started to fade out. It was pretty weird.

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  • Delvzy
    Delvzy Member Posts: 527
    edited November 2018

    how did u go with the numb chin syndrome


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  • Delvzy
    Delvzy Member Posts: 527
    edited November 2018

    Lisa i am so upset about what I am reading online about this Numb Chin syndrome I can't function . I have bad anxiety and can't even go to work. Can u let me know how u went with it sll

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  • Sue2009
    Sue2009 Member Posts: 228
    edited November 2018

    delvzy, Lisa’s last response was last April, u may need to send a personal message to get an answer. Have u tried Ativan for anxiety? It is mild & helps slow down obsessive thoughts. Helps me sleep better than anything else. U don’t eat any different foods? I had lip numbness for a while after eating some spices I had never had. Took quite a while for numbness to go away . Sue

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