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Topic: is it neuropathy or brain mets? FACE NUMB

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Jul 14, 2011 03:32PM

Kimmysu wrote:

Hi all,

I was diagnosed with IBC in August 2010.  I was treated with 6 months of chemo, followed by a double mastectomy, followed by 6 weeks of recuperation and then 6 1/2 weeks of radiation.

So far, no lymphedema! But...I did develop neuropathy.  At first I had no idea what was wrong with my feet.  They just hurt every time I stood up, whether I was sitting for 5 minutes or two hours! I hadn't had much neuropathy during treatment.  Just a little sensory loss in the tips of a few fingers and major dropsies.  

Suddenly I have these really sore feet.  Anyhow, I was diagnosed with peripheral neuropathy.  It's in my hands and feet, and occasionally it shoots up my shins and onto my knees--a feeling like rug burn.  Ok, so I'm dealing with that.  None too happily because I want to get back to normal and lose some of my treatment weight, and the meds for neuropathy tend to make you swell and gain weight.  

Ok.  So yesterday I realize half my face is numb. Top half of my tongue is numb.  My lips are somewhat numb, like I'm coming out of a dental appointment.  I can lift my eyebrow and scrunch my face, but not completely.  Not to the extent I can with the other side of my face.  I can curve my lips into a smile, but the numb side doesn't curve up all the way.  I feel weird.  

Last night I taped my eye shut using gauze and medical tape to keep my eye from opening in the night and drying out.  I can't close my eye on the numb side and keep the non-numb side eye open.

Has anyone else had this type of neuropathy?  My primary physican (non-oncologist) suggested I have Bell's Palsy.  But from what I've read, I should look like I've had a stroke and be dribbling out the numb side.  If you don't know me, I look normal.  

I called my neurological oncologist and learned he is on vacation!! But his "on call" replacement dr ordered a brain mri for me today.  I go in tomorrow to go over the results.  

I'm scared.  Do I have Brain mets?  Has anyone heard of such symptoms for brain mets?  And if not, has anyone had this kind of neuropathy (facial)? and if so, how long did it last and how bad did it get?

SPeaking of neuropathy, how is it going for any folks out there who have it/had it?

Thanks.  Hope my post isn't too long.

Kimberly 

Dx 8/23/2010, IBC, Stage IIIB, 5/14 nodes, mets, ER-/PR-, HER2-
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Jul 14, 2011 05:10PM Leah_S wrote:

Kimberley, the MRI should answer your questions but when I started reading your description I also thought "Bell's Palsy". I've known people who have it and from just looking at them you can't tell. It's only when they start to use their face (smile, talk, etc) that you see the difference.

Best of luck.

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Jul 14, 2011 06:05PM chester2010 wrote:

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

chester2010 Dx 12/10/2009, IBC, 6cm+, Stage IV, 37/37 nodes, ER+/PR+, HER2-
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Jul 15, 2011 02:26AM ibcmets wrote:

Kimberly,

I wish we could give you more info.  I'm sure the MRI will show what's going on.  It does sound like Bell's Palsy.  I had 8 months of TAC chemo and did B6 & B12.  I believe it helped a lot with neuropathy.

Terri

6/2009 stage IV diagnosis w bone mets ,Xgeva , 2015 brain mets, liver metastasis
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Jul 15, 2011 12:32PM dogeyed wrote:

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.   

IBC, IDC, Melanoma/ 5 mos ACT chemo, mastectomy, rads to 11/2011, Arimidex 1 mo, NED 9/2012, two+yr survivor 5/2013 Dx 2/14/2011, IDC, 5cm, Grade 3, 2/11 nodes, ER+
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Jul 15, 2011 01:00PM leggo wrote:

Hi Kimmy. Please have your onc check your cv2 antibody levels. I began to have neuropathy in my feet after one treatment of taxotere. This was four years ago and today I am unable to walk, have no use of my left arm, and have days that I cannot use my eyelids or speak properly because of a numb face and tongue. I can no longer walk because my balance is also affected. If it had been addressed years ago, I'd be in much better shape, but it took a long time for the diagnosis to be something other than neuropathy. Brain scans were always clear. I am now being treated with steroids and at least that gives me days where I can speak normally. Have it checked out.

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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Jul 15, 2011 06:50PM - edited Jul 15, 2011 06:50PM by HerSister

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! 

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Jul 15, 2011 09:31PM - edited Jul 15, 2011 09:55PM by leggo

I'm am certainly no expert on the matter....just happy to finally have a diagnosis that can be dealt with so I'll try to explain my situation as best I can. When I had my first treatment of taxotere many years ago, I experienced numbness and tingling in my toes. By the second treatment three weeks later, there was numbness in my calves and tingling in my hands. One day, shortly thereafter, I couldn't get out of the tub..my legs were essentially paralyzed and I had no co-ordination. I complained to the onc and he said that only 1% of patients get neuropathy that bad and we decided to discontinue that treatment. He sent me to a neurologist who did the CV2 antibody blood test and discovered that mine were low. Back to the onc who said that this was an indication of more cancer in the body and that with treatment it should subside, providing the tumor shrinks etc. Was told that this is called "paraneoplastic syndrome". My tumors in places disappeared and my situation improved, but the syndrome did not. As a matter of fact it got much worse, which I described above. Back to the neurologist who said that it was very important that it be treated ASAP to prevent it from getting worse. He has since been treating me with steroids but this may have come as too little too late he tells me. If my onc had done the test or sent me to the neurologist sooner, who knows. The neurologist said he could have predicted a better outcome if I had seen him earlier. In any event, I guess you could still call it neuropathy, it is what it is, but I knew something had to be very very wrong once my tongue went numb and that was the ultimate diagnosis. Ultimately, the "paraneoplastic syndrome" should have regressed as my cancer did. Unfortunately, that is not the case for me. Again only 1% experience permanent damage in this situation and I'm one of them. That being said, I'd rather have had the test earlier and not be in this situation now, even though I am in that freaky 1%. Maybe that info can help someone else.  

ETA: the second 1% I mention is the number of patients whose "syndrome" and antibodies don't improve with treatment of their cancer. At least this is what the onc tells me. He's now making a point of doing this test and referring his patients to neurologists whose situations are like mine....something he has not seen or done before. In all his years of practice, he has not seen anyone not improve with tumor regression, until me. It also might be important that I am metastatic, but still, I'm his first in this situation....the stupid 1%.

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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Jul 15, 2011 10:30PM bevin wrote:

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. 

Age 45, Oncotype 11, Primary Tumor 2.1 cm, smaller satellite tumor nearby Dx 8/8/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 8/10/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 10/10/2010 Breast
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Jul 16, 2011 04:17AM - edited Jul 17, 2011 11:43AM by dogeyed

GRACIE, just wanted to thank you so much for the polyneuropathy syndrome" information, and the test for CV2 antibodies, and especially how they had some success treating you with steroids.  I have a regular six-month appointment with my neurologist in six weeks, I will bring all that up to him, even tho mine is just in my feet and hands, and of course I'm hoping by then they'll settle down to a dull roar.  GG

LATER NOTE:  I think I got "polyneuropathy" wrong, but I'm too thick in the head from chemo to fix it.

IBC, IDC, Melanoma/ 5 mos ACT chemo, mastectomy, rads to 11/2011, Arimidex 1 mo, NED 9/2012, two+yr survivor 5/2013 Dx 2/14/2011, IDC, 5cm, Grade 3, 2/11 nodes, ER+
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Jul 16, 2011 05:12PM Kimmysu wrote:

Hi all!

Thanks so much to everyone who posted a reply! And to Gracie, I am so sorry to hear about your troubles.  I can only shake my head in sympathy.  I know I was dumb founded by the onset of neuropathy beginning a little over a month after my chemo stopped.  

As I understand it, it worsens for about 6 months following treatment, then the nerves starts repairing themselves.

OK, so my brain MRO came back "normal."  The neurological onc said he believes I have a very mild case of bell's palsy.  I have since heard of at least three other women who got this following cancer treatment.  Although it is not officially linked to the chemo (according to onc, chemo induced peripheral neuropathy always presents bilaterally) it IS linked to weakened immune system.  I guess we all have strange viruses living dormant in our bodies, and this one just woke up! Lucky me :-)

I am on a tapering dose of steroids and vacyclovir. (valtrex)

Having said that, please read this if you are IBC, triple negative.  The oncoligist said for me to keep an eye on my symptoms. If they get worse, ie double vision, weakness in other parts of my body, dizziness, impaired balance, I am to come back in ASAP and get a spinal tap.  It turns out triple negative cancer sometimes migrates to the fluid surrounding the brain and located in the spine.  It is treated by chemo shot directly into the spinal fluid with a lot of success, particularly when found early.  If this information saves someone's life, I will be grateful for the bell's.

I will let you all know how the bell's turns out--if the steroids help, etc. (or if I end up having the spinal tap)

Take care everyone! Thank you so much for your support and God bless you.

Kimmy 

Dx 8/23/2010, IBC, Stage IIIB, 5/14 nodes, mets, ER-/PR-, HER2-
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Jul 17, 2011 10:44AM chester2010 wrote:

Hi Kimmy:

So glad to hear that the brain MRI was normal.  Phew.  Now you can concentrate on being strong and fighting the bell's palsy.  I hope the triple negative folk take note of your tip on the spinal tap. It's good to know these things.

Keep well. Kathy 

chester2010 Dx 12/10/2009, IBC, 6cm+, Stage IV, 37/37 nodes, ER+/PR+, HER2-
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Jul 18, 2011 01:39AM tlarnold wrote:

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.

Terry, IBC chick, class of 2007, NED Dx 8/31/2008, IBC, Stage IIIC, 34/34 nodes, ER-/PR-, HER2-
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Apr 9, 2020 02:23AM MizVIC wrote:

I was diagnosed with triple negative breast cancer in 2013, went through chemotherapy and a had both breast removed and implants installed. Treatment went well and I got a good bill of health. As time passed my feet and hands started feeling numb and that was the start of CIPN. I have learned to live with it. I tried medicine but too many side effects. 2018 I started having problems with my face on the left side going numb. Went to a lot of different doctors, a lot of test, and their best guess was maybe BELL Parsley. It’s been two years and I have just learned to live with the numbness on my left side of my face and even half of my tongue on the left side goes numb. Some days are better than others. This year I started feeling the neuropathy in my feet and lower legs getting worse. It seems to be moving up my legs. Another problem I am experiencing is ringing in my left ear. I went to a lot of doctors and specialists and they don’t have a good reason why my left ear is ringing and making a lot of noise. Also my fingers are a lot more numb, especially when I lay down. It’s only my thumb, pointer finger and my middle finger. When I shake my fingers or put my hand over my head, the numbness goes away, The last couple of months now my neck is cracking and making a lot of noise. Also my memory comes and goes, for the last 8 months. I struggle especially with names. But all that I an going thru, I am happy to be alive, and I have come to the conclusion that the chemotherapy killed the cancer, but did a lot of damage internally. I am 63 , and happy I’M still living. I’m just going to accept the things going haywire and do the best I can to live the best life I can live. What I have learned is that for the things that are going haywire internally. the Doctors and the Specialist don't seem to know.I have learned more from breast cancer survivors on forums like thus, than I got from going to seeing the OC, or Specialist. Wish you all the best life gas to offer.



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Apr 9, 2020 04:55PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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May 23, 2020 09:21AM - edited May 23, 2020 09:23AM by Bravenurse13

This Post was deleted by Bravenurse13.
It's Never Easy! Dx 9/25/2016, IBC, Right, 3cm, Stage IV, metastasized to lungs, Grade 3, ER+, HER2+ Chemotherapy 9/29/2016 AC + T (Taxol) Radiation Therapy 4/11/2017 3DCRT: Lymph nodes, Chest wall Hormonal Therapy 1/16/2020 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement

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