Hello!
I am a first time writer here, although I’ve read quite a bit over the last months. English is not my native language (I’m German), so please excuse any grammar or spelling mistakes!
Please also excuse the long text, I’m afraid this is as much me asking for experiences and ideas as it is me trying to make sense of everything I know so far. My father died of lung cancer last year, and multiple myeloma is already the second cancer for my mom (first was stage III colon cancer, treatment was concluded early 2007) and it seems like we can’t catch a break at all.
In case the text is indeed to long: my question up ahead in short: do you have any experiences in diagnosing and treating numb chin syndrome/ mandibular metastases/skull base lesions/leptomeningeal metastases/meningitis in connection with multiple myeloma?
Baseline: My mother was diagnosed with multiple myeloma stage IIIa a little over a year ago. She was somewhat anemic at that stage and had broken a rip. Her skull showed several small holes. She had no problems with her kidney or signs of hypercalcemia. My understanding is that she is considered low risk (no 17-p deletion). She was treated with induction chemotherapy right away and then had high-dose chemotherapy with an autologous stem cell transplant afterwards in the fall. I don’t have any results at hand, but I know that my mom received vgpr after the transplant. At the moment, she is again anemic. She is scheduled for regular blood (and other?) tests in the next weeks, I think they will test again for m-protein and similar. My mom had to two cases of herpes outbreaks over the last year (on before and one after the transplant), both on her torso. Both were successfully treated with acyclovir. My mom is not taking any regular medication at the moment, expect for bisphosphonate injections.
Now to the reason I’m writing: For over a week now, my mom has had a numb chin and lower lip. For a few weeks before both turned numb, there was on and off tingling in the lips, she describes it as similar to the typical neuropathy in hands and feet (she had that before). The numbness is present on both sides, but more on one side than the other (I forgot which one). The oncologist (who we are normally very happy with!) did not see the need to do any more testing other than checking for signs of herpes on her lips and mouth (there were none). After she told me yesterday about her symptoms, I (of course…) googled and found NCS, or numb chin syndrome. This seems to occur as a late stage development mostly in breast, lung and prostate cancer, and sometimes in multiple myeloma. There are benign causes (e. g. dental), however, if it occurs with a malignancy already present, it appears to be mostly caused my mandibular metastases or leptomeningeal metastases (meningitis). Of the few cases I could find in connection with multiple myeloma, the numbness was sometimes caused by base of skull lesions. As far as I understand it, a growth in or near the mandibular causes a depression of the nerve(s) which in turn causes the numbness. With leptomeningeal metastases, the process is more complicated but with the same results. However, with the latter it seems from what I’ve read, that there are usually more symptoms present than “just” a numb chin.
Now, that was the mostly rational part. Emotionally, I’ve been on quite the rollercoaster since last night, considering the prognosis for malignant diseases in connection with numb chin syndrome is given in months… Then again, there is very little I can find directly about multiple myeloma and numb chin. Two articles that were directly dealing with this connection (in both the numb chin actually presented as the first sign of multiple myeloma), the patients could be treated with radiation to area that was pressing on the nerve, just like other myeloma related bone problems would be treated. In other, more general articles (where different types of cancers are described in connection with ncs), median or average survival is given in 5 to 12 months…
My mom has an appointment with the oncologist tomorrow, I hope he will arrange for the necessary tests. In the meantime, I will try to find as much information as possible...
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Re: Myeloma and numb chin/skull lesions/meningitis?
I was diagnosed in May of this year and also had a numb chin/lower lip. I had this before the diagnosis (starting in March/April) and it seemed to come on after a really bad bout of cold sores. At the time, I chalked it up to that. Three different doctors suspected that I had a lesion at the base of the skull that was causing the problem. I got a brain MRI and nothing specific showed up other than the usual holes that I have all over my skull. On the bright side, after 2 rounds of chemo, the numbness is subsiding and it is now mostly on one side of my lower lip only. My chin and the other side are much better. None of the doctors mentioned the numb chin syndrome to me.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Myeloma and numb chin/skull lesions/meningitis?
I had something kind of similar, in regards to tingling, nerve issue in my face, but for me it was around my eyebrown. It would be a stabbing pain, or like an electric shock.
It was finally diagnosed as Trigeminal Neuralgia. It was really bad when my Myeloma was active but has gone away since I am in remission.
The diagnosis is nerve damage, most like caused by the Herpes Simplex virus. part of my course of Myeloma is that I have a hard time with viruses
The other theory is that it was caused by a shingles outbreak, but with not outside rash (same family of viruses though).
I have been living with multiple myeloma for over 3 years. I have looked up a lot of symptoms on google and was sure they were some weird multiple myeloma relapse, but for me some other less sinister explanation eventually comes forth.
I hope the same is true with your mom
It was finally diagnosed as Trigeminal Neuralgia. It was really bad when my Myeloma was active but has gone away since I am in remission.
The diagnosis is nerve damage, most like caused by the Herpes Simplex virus. part of my course of Myeloma is that I have a hard time with viruses
The other theory is that it was caused by a shingles outbreak, but with not outside rash (same family of viruses though).
I have been living with multiple myeloma for over 3 years. I have looked up a lot of symptoms on google and was sure they were some weird multiple myeloma relapse, but for me some other less sinister explanation eventually comes forth.
I hope the same is true with your mom
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Anonymous
Re: Myeloma and numb chin/skull lesions/meningitis?
The numb chin could be the result of a skull base myeloma lesion, and I think additional imaging (for example, MRI) would be highly reasonable, especially given the fact that anemia has returned (another possible warning sign of myeloma returning). If this is unremarkable, a dental evaluation may be in order as well. Leptomeningeal disease in myeloma is rare and typically occurs in patients with aggressive, multiply relapsed disease with other sites of known extramedullary involvement. I doubt that is what is going on here.
If the disease has relapsed, a numb chin does not indicate a poor prognosis. Just a myeloma lesion in a less-than-ideal location. This would be a first relapse and one that can be treated successfully.
Good luck!
Pete V.
If the disease has relapsed, a numb chin does not indicate a poor prognosis. Just a myeloma lesion in a less-than-ideal location. This would be a first relapse and one that can be treated successfully.
Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Myeloma and numb chin/skull lesions/meningitis?
Thank you all for taking the time to share your experiences and answer my questions and also for your well wishes! Sorry for my late reaction, I've been offline for a few days...
No real news on the chin front, another oncologist in the same office (her regular one was on vacation) asked more thorough questions but did not think any immediate action would be necessary. I've told my mom about what I read (and gave her some printouts to take to the doctor), especially about the possibility of a skull base myeloma lesion, and she will bring this up and ask for an MRI (or similar) as soon as possible. Will definitely keep an open mind for others causes (e.g. herpes simplex).
The reason I and especially she haven't been more pressing with the oncologist on this issue is that since the weekend (started before that but got a lot worse then), my mom can hardly walk because of a severely pulled groin or some sort of inflammation in that area. At least that's what the oncologist suspects, the appointment with the orthopedic specialist is on Friday. The x-ray was fine, so there doesn't seem any bone involvement/connection to the multiple myeloma. This seems minor when compared to everything going with the multiple myeloma, but the pain is very bad and my mom feels rather helpless and scared because of everything going on at once.
In addition, my mom has very low platelets at the moment and receives regular transfusions. The anemia is also treated with infusions. She is also officially in relapse now and has started Revlimid and Dex a little while ago (I didn't know that when I wrote my last post). I have all fingers crossed that it will work quickly to bring her back into remission...
Thank you again!
No real news on the chin front, another oncologist in the same office (her regular one was on vacation) asked more thorough questions but did not think any immediate action would be necessary. I've told my mom about what I read (and gave her some printouts to take to the doctor), especially about the possibility of a skull base myeloma lesion, and she will bring this up and ask for an MRI (or similar) as soon as possible. Will definitely keep an open mind for others causes (e.g. herpes simplex).
The reason I and especially she haven't been more pressing with the oncologist on this issue is that since the weekend (started before that but got a lot worse then), my mom can hardly walk because of a severely pulled groin or some sort of inflammation in that area. At least that's what the oncologist suspects, the appointment with the orthopedic specialist is on Friday. The x-ray was fine, so there doesn't seem any bone involvement/connection to the multiple myeloma. This seems minor when compared to everything going with the multiple myeloma, but the pain is very bad and my mom feels rather helpless and scared because of everything going on at once.
In addition, my mom has very low platelets at the moment and receives regular transfusions. The anemia is also treated with infusions. She is also officially in relapse now and has started Revlimid and Dex a little while ago (I didn't know that when I wrote my last post). I have all fingers crossed that it will work quickly to bring her back into remission...
Thank you again!
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anna78
Re: Myeloma and numb chin/skull lesions/meningitis?
Hello all,
It took a while (and me printing out cases I found on the internet), but my mom's doctor approved the MRI. Which, to our relieve, showed no abnormalities! The numb chin and especially the weird/painful sensations are still there, a little better since therapy started again, but not to a point that is satisfactory. My mom only started the second course of Revlimid recently though, so there's hoping it will get better still.
My best guess for the cause of the numb chin would now be that the trigeminal nerve was damaged by either an old or an undetected shingles infection. Apparently trigeminus problems are often successfully treated with anticonvulsant medication or antidepressants. The first can apparently cause thrombocytopenia, which my mom already has, so that's not an option right now. We might try the second one.
It took a while (and me printing out cases I found on the internet), but my mom's doctor approved the MRI. Which, to our relieve, showed no abnormalities! The numb chin and especially the weird/painful sensations are still there, a little better since therapy started again, but not to a point that is satisfactory. My mom only started the second course of Revlimid recently though, so there's hoping it will get better still.
My best guess for the cause of the numb chin would now be that the trigeminal nerve was damaged by either an old or an undetected shingles infection. Apparently trigeminus problems are often successfully treated with anticonvulsant medication or antidepressants. The first can apparently cause thrombocytopenia, which my mom already has, so that's not an option right now. We might try the second one.
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anna78
7 posts
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