Intense jaw pain (pt.2)

[Decktime]

Three months ago my husband developed intense right jaw pain. After multiple scans showing "something" (thankfully no PSMA activity) he had a surgical bone biopsy 11/29. Two days ago we received the pathology report but have not been able to speak with the Dr. to help us understand it. The good news is we see the word "benign." However we also see the words: chronic inflammation, S-1 decalcification, mild necrosis, minimal marrow fibrosis, and fungal organisms consistent with Actinomyces organisms.

The waiting for these reports to be interpreted is challenging. I am of two minds with reading reports on the patient portal. I am anxious to know results but then I don't understand what I've read so I would almost rather not know.

My husband is mhspc stage 4 and is participating in a clinical trial with Lupron injections and Darolutamide. He still has his prostate, has never had radiation or any other treatment. PSA <.1 He is taking long-acting morphine and dilaudid to manage the pain.

[Decktime]

I should also mention my husband has excellent oral health and has not had any dental procedures in 8 years.

[Hidden]

I think the most significant word in that biopsy report is “Actinomyces”.

my.clevelandclinic.org/heal...

Looks like antibiotics can help, but its over a few months not just the 10 day course we normally are asked to take.

[tango65]

He has a chronic infection of the bone (osteomielitis). He needs to be treated with antibiotics sooner than later. Apparently it could be cured.

ncbi.nlm.nih.gov/pmc/articl...

merckmanuals.com/profession....

[Decktime in reply to tango65]

Thank you. I found the merck link especially helpful.

[tango65 in reply to Decktime]

Best of luck with the treatment.

[Mike58]

try putting your pathology report into ChatGPT and ask it to translate into simple to understand terms. It really does work but of course isn’t a replacement for your doctor’s explanation.

[dhccpa in reply to Mike58]

Thanks, I'm going to try that myself. My RO (whom I've only used for scans and is the nicest doc I've ever met) struggles answer questions about scans, even on issues I would think he should know. I even asked him if he minded if I contacted the radiologists directly.

[dentaltwin]

I have to ask if your husband is taking, or has taken anti-resorptive medication such as bisphosponate (eg: Zometa) or denosumab (Xgeva, Prolia).

Actinomyces are bacteria, not fungi (though they may resemble fungi under the microscope). The text is consistent with osteomyelitis, but the fact that your husband has not had any dental problems or procedures kind of argues against that. But if he has been on antiresorptive therapy it may well be medication-related osteonecrosis, which can get secondarily infected. This IS treatable.

[Decktime]

he is not on those medications. only the ones I listed in my post.

[Decktime]

Thanks for your thoughts everyone. Our oncologist has made quick connections for my husband to see an Infectious Disease Specialist 12/21. We shall see what's ahead for treatment.

[fast_eddie in reply to Decktime]

I'm curious. What specialist deals with jaw problems? I might have a problem.

[Decktime in reply to fast_eddie]

An Infectious Disease Specialist is treating the infection. My husband will be on intravenous penicillin for 8-12 months. But it is curable. We just have to hit it long and hard.

[Scoofer33]

Following Dental Twin's line of questioning I might add the following advice. If your husband is ever encouraged to take an anti-resorptive medication to strengthen his bones (which are currently being weakened by Lupron) I would be very careful to get every bit of information before making a decision. I was informed that the benefits of taking Xgeva far outweighed the possible side effect of MRONJ. Even though the risk of getting Medicine-Related OsteoNecrosis of the Jaw was cited as 1.8 percent, if you're one of those that will have a problem with the medication your risk is 100 percent!

[Decktime]

Agreed.