is it neuropathy or brain mets? FACE NUMB

Hi Kimberley:  A friend of mine just had Bell's Palsy and you couldnt tell until she tried to smile or talk.  Let's hope it 'only' Bell's Palsy.  Good luck

Kathy

Yes, peripheral neuropathy from the chemo can affect the face and tongue, along with the feet and hands.  Anything distant from the spinal cord is included in peripheral neuropathy.  Now, I had peripheral neuropathy in my feet and lower legs for years from a car accident that broke my back in three places and disabled me.  My feet hurt all the time, I had trouble standing on them for any length of time, going to the grocery store and walking on concrete floors drove me to tears, and when my neurologist would poke pins in my feet and lower legs, I could not tell they were pushing the pin in there.

So, when I got really severe peripheral neuropathy from chemotherapy, things got a whole lot worse in my feet, and brand new I developed it in my hands, but so far nothing in my face.  I would have freaked out if your face thing had happened to me, as I have IBC and IDC, and since one of my cancers is very agressive, I would have thought the same as you, that something must be wrong with my brain. 

So, the MRI results will hopefully come up clear, and you can then ascribe it to the neuropathy you still have from your chemo.  As to how long it will last, I just finished my last five-month chemo a week ago, and while my numbness and tingling is subsiding, the swelling and redness in my feet and hands are only slightly better, and I have read where some people don't necessarily improve completely from the symptoms of chemo for even months and months later.

Why your neuropathy went into your face and tongue so long after your feet and hands, I cannot say.  But it strikes me as strange that it would suddenly develop a year after your cancer diagnosis and then treatments.  On the other hand, only a breast oncologist can speak to this issue for you, I hope you can go back to your original team and inquire about it, make an appointment if you are still in the area.  And treatments for it can vary from just a particular sort of pill like you are getting.  There are other medications like pain killers, a patch, several things that can help you deal with the neuropathy pain and discomfort.  By the way, the burning in your knees, that is the neuropathy, it can cause a burning sensation as well.

The way I cope with my original feet neuropathy is I have to prop up my feet most of the day, but I DO still walk whenever I can and on soft ground, like on my property or in a park or field, my feet don't fire up quite as badly.  But I take pain medicines for my legs, so one of the treatments for painful feet from peripheral neuropathy is indeed pain medications, which contrary to common belief, a person can stay on the same dose for a long time without needing an increase, in my case it was years.  But still, despite the care I take with my feet, they do still hurt sometimes when I have to go somewhere other than my home and property (where I walk in a soft-ground field down beside the house).  And of course with the increase in symptoms from chemo, I am really stuck at home... but I am disabled and cannot work, I receive disability monies, so it's okay if I have to modify my regular activities, altho not without expected frustration from not being able to run and play like the other kids.  I do not know if disability can be granted for peripheral neuropathy; I received mine from my fractured spine and the depression I experienced from it.

I hope the MRI turns out okay, let us know as soon as you can how that goes.  But I would try to see your cancer team once again to discuss the situation with your face and tongue being numb and causing you some rather serious day-to-day problems that no one should have to put up with.  In addition, I think your medicines should be changed around a little, perhaps pain drugs would help better than what you're on, or whatever expert you consult with decides, and yet not cause swelling and weight gain from the type of drug you have now.  As for some treatment for your facial peripheral neurpathy, your neurologist really should know what he can do for you, to perhaps reduce the impact it is having on your life. 

Also, I want to add one more possibilty, that your neurologist should doublecheck if there is a pinched nerve involved, perhaps in your cervical spine... especially if you can remember wrenching your shoulders or neck very recently.  While it can be regular peripheral neuropathy of the face and tongue that I have already discussed, there is also a chance a nerve that services that part of your head has been compromised somehow by a mild neck problem that has caused temporary swelling or a vertebrae or disk maladjustment, and who knows, could be a they can untrap it either through surgery or even a chiropractor might can do one of this big maneuvers they do and give you instant relief.  But that's only if it's a trapped nerve. 

In case it is indeed a just a temporary swelling in your spinal area, then take an anti-inflammatory medicine like Aleve, put some cold packs on any upper spinal area that seems to be sensitive to the touch, try that for a few days and see if it lessens the numbness in your face and tongue.  If so, could be your facial and tongue peripheral neuropathy might subside by easing the swelling in your cervical spine, but that's just a wild guess.  Massage seems to help my neuropathy, and so does putting my feet over the side of the tub and letting lukewarm to coolish water run over them for a few minutes.  And could be a cold pack applied to the side of your face just might lessen symptoms temporarily.   

gracie1:  Can you please explain more about cv2 antibodies?  I'm also a little confused; you said you "got neuropathy in your feet after one treatment of taxotere" but, also said "it took a long time for the diagnosis to be something other than neuropathy".

I'm concerened because my sister is on taxotere & has had some neuropathy.  But, I'm confused as to exactly what you have now that has caused you so many difficulties and whether or not it is from the chemo.

Thanks so much for your help! 

Hi There, It sounds to me like Bells Palsey. I had it and these were my exact symptoms.  Please go see your doctor. They should place you on steroids and this will help shrink the 7th nerve that gets inflamed with Bells Palsy. The quicker you receive treatment the faster and better you heal and likely will not have lasting numbness and facial muscle impacts.  It took my face about 1 year to be fully healed and the nerves to heal.  I took 6 weeks of steroids and they also placed me on an antiviral.

They confirmed the Bells Palsey by physical symptoms, but I had a Brain MRI as well just to be sure and rule out any other issues like a stroke.

Good luck to you. Please see your Doctor and let us know how you are. 

Of course you need to get this checked out, but I have known several women with IBC who developed brain mets. There were very serious headaches and vomiting.  Not what you are describing.

MizVIC - looks like this is your first post. You may not have noticed that this thread has not be active since 2011.

Did you have Taxotere or Taxol or Carboplatin? Different drugs do different things. I have CIPN - basically dead feet. Sometimes it creeps up my calves. My fingers are sometimes more numb than others but it improved enough I can do buttons & zip up my own pants - just not swipe a phone w/any reliability.

There are several neuropathy threads if you check the search section. 7 years out, my neurologist says there are no drugs or treatment except to relieve pain. I don't have major pain, so... A number of women have tried acupuncture - some with success.

If you choose to post again, please go to 'my profile' and list your diagnosis and treatment, then make it public. That helps the rest of us to understand what you're going through.