tongue and lip neuropathy

[dhealey]

I have been out of treatment since Jan. 2008 (finished herceptin, finished chemo Feb. 2007) About two months ago I started having neuropathy in my tongue and lips. Words don't always come out like they should when talking, very frustrating. I had an MRI of Brain last week which showed nerve damage to the 9th cranial nerve which is known as the glossoalpharyngeal nerve. They say this is the cause of the neuropathy, but don't know what has caused the damage. I am to have a repeat MRI in 10 weeks. They also did alot of bloodwork and vitamin levels all were normal except my vitamin D level was low. I am now taking 50,000 units of vitamin D three times a week. They don't think this is the cause of the neuropathy though. My question is has anyone on the boards had trouble with neuropathy in the tongue and lips? If so what was the cause and how was it treated. Anyone else have a low Vitamin D level? I know there are alot of studies going on with the corralation of low vitamin D and breast cancer. How much is a safe supplement? Too much is not good either. I would deeply appreciate anyone's input.

[mts]

Very interesting your tongue and lip neuropathy... Every now and then I notice I may slur a word... kind of a flappy lip thing going on too. I never thought of neuropathy. I just figured it had to do with my chemo. I also notice that when I sneeze I will sneeze in a rattle instead of one strong sneeze. It comes from the throat and very distinctly a lack of strength. Again, I've always thought that to be just week muscles from chemo.
I have had brain CT's (although not from these issues) and came out clean.
I have been taking several supplements (inclusive Vit D) since 2006- when I finished chemo. Ended Herceptin 7/07
I will be curious as to others having any of these issues and if resolved (or at least what caused it).

maria

[naturaleigh]

Hey Debbie in North Carolina, I am Anita in South Carolina!!

I have been experiencing the same symptoms, my mouth feels cotton-y all the time, my tongue tingles and my lips just flat out drive me crazy. I have gone to two different dentist and an oral surgeon, none of which even tried to figure out what was going on. I have asked my Onc for an MRI for this and other issues, but she refuses to order one for me, so I am glad to hear you did get an MRI.

One of the dentist suggested sucking on a piece of sugar free hard candy all the time. That did not help me, so I tried Altoids and would keep 5 - 6 in my mouth all the time. That was a temporary fix.

I finally found a good neurologist and go see him the beginning of next month. I will let you know what he finds out. Let me know if the vitamin D works for you.

Sorry I can't be more help, but I am still searching for a relief for this.

[dhealey]

Anita from South Carolina, Thanks for your reply I will keep you posted with what happens. I have the repeat MRI in late Sept. Let me know what you find out from your neurologist.

[Linda]

Hi Debbie:
My onc has been checking my Vit D level for almost 2 years. She says she wants my level on the high end of normal (there's a big range) and that is thought to be protective against recurrance. I started taking 2000 D3 a day and kept going up to 7000 a day, until my levels rose to where she wanted them. She said the only down side could be high calcium, but that is also checked in bloodwork (I no longer take calcium supplements.) She also recommends 20 minutes of sun a day, bare arms, face, chest and/or back, no sunblock.
There's a lot of talk about Vit D these days.
good luck
Linda
Stage 3a, dx 5/2005
NED

[Donna]

Hi Debbie and All,

Hmmmm - that would explain alot, neuropathy! My mouth is sooooo dry all the time and spices of any kind hurt. I am constantly biting my lip or tongue while eating which is just so weird, why after all these years would I not be able to simply eat without biting my own mouth all the time. Neuropathy never occurred to me but I definitely have it in my feet. I will be interested to follow what this thread provides as possible answers.

I do keep Hall's Breezers Strawberry candies handy all the time - it really has been the only thing that helps my dry mouth. They are for dry mouth and throat and are non-mentholated.

Thanks so much for posting this!

Have a great day!

Donna

[dhealey]

Hey Donna, I don't have the dry mouth, just tingling sensation in both upper and lower lips and tongue. My words don't always come out as they should. Sounds like I have a lisp. My MRI did show nerve damage to the 9th cranial nerve which affects the tongue and lips. MRI suggested a viral syndrome. I haven't been sick. My docs are perplexed and I will have a repeat MRI in OCt. I have started taking the Vitamin D, but they don't think the 2 are related. All very weird. Will keep you all posted.

[Alice]

Have you thought of Bell's Palsey or something not related to cancer or treatment? Sometimes we get too focussed on the big bad ugly and forget that we too can have other unrelated problems.

[dhealey]

Alice, both my family doc and onc say it is not Bell's palsy. The MRI has shown nerve damage to the 9th cranial nerve. Family doc says it could be TIA's. Just have to wait until I have the repeat MRI in Oct. Thank you all for your input. I don't think this is realated to the Cancer. Just wondered if anyone else was having this problem and how it was resolved. Very frustrating when I am talking with my patients and my words come out wrong. They look at me like I am crazy. Very frustrating.

[Donna]

HI,

I did some searching and found this abstract - might be worth trying.
The abstract is short, so I am posting it.

Symptomatic and neurophysiological responses of paclitaxel- or cisplatin-induced neuropathy to oral acetyl-L-carnitine

Acetyl-L-carnitine (ALC) improves non-oncological neuropathies. We rested oral ALC (1 g tid) for 8 weeks in 25 patients with neuropathy grade ≥3 (common toxicity criteria CTC) during paclitaxel or eisplalin therapy, or grade ≥2 persisting for at least three months after discontinuing the drugs. An independent neurologist assessed patients before and after ALC. All patients except one reported symptomatic relief, and only two described grade I nausea. The sensory neuropathy grade improved in IS of 25 (60%), and motor neuropathy in 11 of 14 patients (79%). Total neuropathy score (TNS) that included neurophysiological measures improved in 23 (92%). Amelioration of sensory amplitude and conduction velocity (sural and peroneal nerves) was measured in 22 and 21 patients, respectively. Symptomatic improvement persisted in 12 of 13 cvaluahle patients at median 13 months after ALC. In view of its effect in improving established paclitaxel- and cisplatin-neuropathy, we recommend ALC testing in preventing progression or revert symptoms dining neurotoxic chemotherapy.

http://cat.inist.fr/?aModele=afficheN&cpsidt=17074156