I have a question about extramedullary plasmacytomas.
I was diagnosed in November 2015 with standard-risk multiple myeloma after completing treatment for breast cancer in November 2014. After my multiple myeloma diagnosis, I underwent 4 months of CyBorD (cyclophosphamide, Velcade, and dexamethasone) induction therapy followed by an stem cell transplant in April 2016.
My stem cell trasnplant was a success and put me into complete remission. I’ve been in complete remission and on no maintenance therapy ever since, apart from pamidronate (Aredia) and then later denosumab (Xgeva / Prolia). I’ve been back at work full time for a while and have been living a pretty good quality of life for a myeloma patient. The results from my last blood tests on January 18, 2018 showed no M-spike and no evidence of myeloma whatsoever; all results were within normal range.
Fast forward to this past Wednesday. I noticed a slightly discernable and painful to touch lump on my lower right side jaw, just below my ear. I figured it might be related to a virus of some sort and figured it would resolve quickly on its own. It did not. On Saturday, I visited a walk-in clinic to make sure I wasn’t fighting an infection. I had no elevated temperature, and the doctor checked my ears / mouth / nose / eyes etc. for signs of infection. There weren’t any. My lymph nodes weren’t enlarged, and I had no signs of cold / flu or other viral or bacterial infections.
I’m very worried that my myeloma might be back, and fear that I may have developed an extramedullary plasmacytoma in the soft tissue on my jaw. The lump is smooth and hard and doesn't move, as a cyst would. It is painful when I touch it, and my skin is red in the affected area (maybe from poking it too much).
Does this sound like it is likely to be an extramedullary plasmacytoma in the jaw soft tissue? Do plasmacytomas happen in the jaw area? How does the fact that my blood tests are clear when it comes to myeloma affect the likelihood that this is an extramedullary plasmacytoma?
I will be seeing my myeloma specialist this week, but thought I’d touch base here for thoughts from those who may have experience or insights.
Thank you,
Karen
Forums
6 posts
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Extramedullary plasmacytoma in soft tissue of jaw?
I am a retired dentist. There are many things that your lump could be and most are likely not a plasmacytoma. Get an appointment with your dentist, and I bet he will be able to make a diagnosis and treat your problem.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Extramedullary plasmacytoma in soft tissue of jaw?
Thank you for the good advice, Coachhoke.
As it happens, I had dramatically increased swelling and pain in my right jaw area and cheek this morning. I couldn’t eat breakfast because of the severe pain when I moved my jaw. Not wanting to take any chances, I headed over to the emergency room.
Thankfully, the emergency room doctor determined that I did not have a tumor or plasmacytoma, but rather sialadenitis, a bacterial infection of the parotid gland (it looks like I have mumps on the right side, but he felt what I have is bacterial, not viral). It's unusual that I didn't have other infection symptoms such as a fever, but he was quite sure my parotid gland is either infected or blocked. He prescribed antibiotics (cephalexin) and a pain / anti-inflammatory medication (naproxen).
I apologize for overreacting and for assuming that any type of lump that appears is automatically cancer related.
Even in complete response, it is impossible to ever forget that myeloma is always lurking in the background, ready to suddenly rear its very ugly head.
As it happens, I had dramatically increased swelling and pain in my right jaw area and cheek this morning. I couldn’t eat breakfast because of the severe pain when I moved my jaw. Not wanting to take any chances, I headed over to the emergency room.
Thankfully, the emergency room doctor determined that I did not have a tumor or plasmacytoma, but rather sialadenitis, a bacterial infection of the parotid gland (it looks like I have mumps on the right side, but he felt what I have is bacterial, not viral). It's unusual that I didn't have other infection symptoms such as a fever, but he was quite sure my parotid gland is either infected or blocked. He prescribed antibiotics (cephalexin) and a pain / anti-inflammatory medication (naproxen).
I apologize for overreacting and for assuming that any type of lump that appears is automatically cancer related.
Even in complete response, it is impossible to ever forget that myeloma is always lurking in the background, ready to suddenly rear its very ugly head.
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Extramedullary plasmacytoma in soft tissue of jaw?
Reading your original entry and noticing that you mentioned bisphosphonates made me think of osteonecrosis of the jaw (ONJ).
I hope the antibiotic takes care of the diagnosis of a gland infection. My husband traveled the ONJ route, which was not pleasant.
I hope the antibiotic takes care of the diagnosis of a gland infection. My husband traveled the ONJ route, which was not pleasant.
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NBGirl - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 63
Re: Extramedullary plasmacytoma in soft tissue of jaw?
I'm with NBGirl. When I first read your initial post, Karen, I was going to suggest that you get the spot on your jaw checked to see whether it might be a sign of osteonecrosis of the jaw (ONJ). That's why I was glad to see coachhoke's post, since a dentist would have helped you determine whether ONJ, or something similar, was the cause of the problem.
Good luck!
Good luck!
Re: Extramedullary plasmacytoma in soft tissue of jaw?
Thank you, NBGirl and Cheryl. I initially had the same thought, that it might be osteonecrosis of the jaw (ONJ), but I couldn't see anything unusual when I looked in my mouth, and all was well during my last dental cleaning in November. My dentist is aware of my myeloma diagnosis, and she always checks my mouth thoroughly for signs of ONJ, even during simple dental cleanings.
If the antibiotics do not clear up the swelling and lump within a few days, then I will definitely schedule an appointment with my dentist.
All the best,
Karen
If the antibiotics do not clear up the swelling and lump within a few days, then I will definitely schedule an appointment with my dentist.
All the best,
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
6 posts
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