Jaw Pain

[Youji]

jaw pain

I've been reading your posts for a while. I join the community for my mother who has bones mets everywhere (cranium, pelvis, jaw, spine, femur...)

She follows an ibrance letrozol zometa protocol. since July 2021. her situation is described as lesional stability

she has pain in the jaw (the right side teeth) it's like electric shocks... started in 2019 and probably coming from the Jaw mets. the oncologist says that the radiation cannot be done in this part!!!. the dentist says that teeths are fine and refers me to the oncologist .

if you have seen situations like this any advice is welcome

thank you and sorry for my english

[Rbeth]

Oh. Yes. My gums throb at times. My dentist gave me Magic Mouth. It is a prescription but you can make it yourself. It made my jaw and mouth numb. Don’t particularly care for it, because my tongue and jaw were numb for a bit, but may help you. Good luck. Reenie

[Youji in reply to Rbeth]

Thank you for your reply

[wendle3007]

Is your mother also on Denosumab (Xgeva)? I'm on that and have been warned it can cause jaw pain although I've not had any and can't give any advice

[Youji in reply to wendle3007]

Yes she is taking a biosophonate perfusion called zometa...but in fact this jaw pain started before cancer discovered. In 2019 but with perfusion it's more painful.

[TammyCross in reply to wendle3007]

Wendle 3007, if her mother is on Zometa, she would not be on Xgeva, too. They are both used for osteoporosis and bone mets. Zometa is a bisphosphonate, and there are others. They all can cause osteonecrosis of the jaw (ONJ, or death of the jaw bone) as an adverse effect in a small percentage of patients. That is why they tell you to avoid dental work and to be wary of jaw pain when on them. Clearly, you do not have ONJ since you have no pain, and neither does Youji's mother since her jaw pain preceded treatment. There are other symptoms of ONJ. You would know it if you had it.

[Mary115]

Youji

I have trigeminal neuralgia from an accident though I surmise that nerve damage from illness can happen too ;"Trigeminal neuralgia is sudden, severe facial pain. It's often described as a sharp shooting pain or like having an electric shock in the jaw, teeth or gums. It usually happens in short, unpredictable attacks that can last from a few seconds to about 2 minutes. The attacks stop as suddenly as they start."

Certain medications like biosophonate infusions can also have a side effect which causes jaw pain of a differing sort. You can check with the oncologist about side effects of other medications.

I have a wonderful pain management medical professional.. I do hope your mother can find someone like mine to get some understanding and relief from the pain. Nerve damage pain is so hard to experience and live with. To me the best medicine is having the solace and support of a daughter like you. It is not easy for those of us who are hurting to express the gratitude for our caretakers, but you are our greatest pain relievers. Thank You.

[Youji in reply to Mary115]

Gald that you have a pain professional ..thank you for sharing your experience.

[Andersl]

I'd advise seeing a specialist in periodontal disease for a 2nd opinion on the teeth. If they say they're OK then ask the oncologist to refer you to a neurologist. It could be nerve pain.

Good luck x

[Youji in reply to Andersl]

Yes we did and they re 100% sure that it's not a nerve pain or trigeminal neuralgia..that's why i was thinking that it comes from the bones mets located in the Jaw

[TammyCross]

Sounds like it is from the bone mets. If the treatment works, it should decrease the pain. I have heard of radiation of the teeth and jaw, but if they have ruled that out, one assumes they know what they are doing, and it is a question of pain management.

I want to throw out another possibility, which is very unlikely. Before I got metastatic breast cancer, I suddenly got "lock jaw," couldn't open my mouth, and had severe pain in the joint. I had stabbing pains in my head. It took many visits with different doctors and googling to find out I might have an autoimmune disease that goes by a number of different names. One of those is giant cell arteritis (GCA). Turns out it is large cells -- mine were in the artery in my temple, and it is sometimes called temporal arteritis -- clogging the blood flow. Since she has had this pain a few years, it is unlikely she has GCA. There is a simple test for it: a blood test for inflammation. After I got it, I became something of an evangelist because it is unusual and so often misdiagnosed, and the consequences of misdiagnosis and failure to treat are serious, like strokes to the eye and blindness.

I don't think your mother has that. Your explanation is the most likely. Just taking the opportunity to raise awareness about GCA. I assume the jaw mets show up on scans, and would indicate why she is having the pain?

[Youji in reply to TammyCross]

Thank you tammycross for sharing other possibilites! And yes i think also that's coming from bones mets ..i was just wondering if it's common that there is no radiation possible for the jaw mets.

[13plus]

I think that even though some do gave it done, rads to jaw us a challenging area and the side effects may make any possible benefits totally not worth it. Im B sorry to hear your mum is in so much pain. I would either try asking fur a pain management team or seek a second opinion. Do the drugs seem generally to ge working for her bone nets? Have they ever decreased? Is this her first drug? It might be worth exploring other drug options. and the way to be guided to best drug options for your mum is to have the cancer genetically analyzed. Has she ever had that done?

[Youji in reply to 13plus]

Thank u for ur empathy...we dont have realy a pain management professional ..she is taking pain drugs for her hips pain some time it works but not for the jaw pain ..it disappear alone then the pain come back...! For the genetical test i dont have an idea what kind of test we need to do..

[13plus in reply to Youji]

Ok so the first thing is, if she hasn't had other treatments before trying the Ibrance regimen you need to ask the oncologist what other options she still has. Although I see the jaw pain started 2 years before given the Ibrance so my guess is she has had some other different medications? As you seek other options you also need to think about your mum's quality of life and what are her long term wishes? I would consider pulling the doc aside to have a private conversation (well it's what I would do anyway) and ask what is the realistic expectation for your mum? I suggest this only because she does seem to have very widespread lesions throughout her body and it seems like she is in quite a lot of pain. If the doc thinks there are no more treatment options (or only ones that would make her feel very sick) then I would ask for a pain management consultant, or hospice care. The latter can provide this kind of care to make her more comfortable, they are not only about preparing people for their end of life. Your doctor should be able to arrange this for her. If the action on this seems slow then request a nurse navigator to be assigned to your mum. This person can help communication between the different doctor departments and help make sure things get done, and in good time.

If she has only had one other treatment before Ibrance but her doctor doesn't seem to be doing anything more, then your next possibility is to seek a second opinion at a different hospital.

[Lnlc]

Hi! And I’m sorry your mom is going through this. I had osteonecrosis I’d the jaw from the bone strengthening medicine. Perhaps you are familiar with with this side effect. For me a small part of the jaw bone died away and had to manually removed. It wasn’t painful though and the way I knew something was going on was because the bone was exposed. I hope your mom does well and sending prayers and healing thoughts.

[Jessie55]

Sounds a bit like neuralgia. You could ask if that is a possibility. It does cause electric shock type pain.