Long Term Herceptin Users: Mouth Pain? Aching Jaw?

[mamacze]

I just had my Herceptin infusion yesterday - (I am estimating that I have had over 275 infusions over the last 5 1/2 years) - and I was up all night tossing and turning with an aching jaw. I have dealt with Herceptin-related mouth sores for a year now, and the jaw/teeth pain has come and gone ... but last night - ugh - it felt like my teeth were going to get loose and fall out - anyone else experience this or am I alone in the woods?!
Love Kim from CT

[hutchibk]

You know, interesting this comes up just now. I have had jaw aching (mostly starts at the end of the day in the very late evening, but doesn't seem to bother me when I am sleeping) for about the last 2 months. It is exacerbated by a wisdom tooth that is decaying and will be extracted in the next week or so.

I have been on Herceptin for 30 months, probably 40 infusions. I am also on Zometa (for just over a year), which research is showing can start to present pain and (mostly lower) jaw necrosis/pain at about 3 years, if at all.

I wonder if there is a Herceptin component to this? I will know more if my pain disappears after the wisdom tooth extraction...

[mamacze]

Hi Brenda,
I am thinking that Herceptin is responsible - although you need to be careful and have your dentist watch you closely as you don't want to end up with a full blown case of necrosis; right?! Mine has been slowly, slowly getting worse with each infusion over the last 8 months - I am a bit worried about necrosis myself. I think I will PM Kim from Calif, if I remember correctly, she is on Herceptin for the long haul as well. Please let me know how you do after your wisdom tooth is taken out (ouch!)
Love Kim from CT

[StephN]

Dear Kim -
Nice to hear from you, but sorry for the subject!

You know I had at least 250 infusions of Herceptin myself. Never did I have any pain in my jaw. I had almost no symptoms with herceptin in all that time. After coming off the drug last December, I have mainly noticed an uptick in my energy level and tapering off of the leg, foot and hand cramps.

A couple of years ago I needed a root canal, but that was caught by yearly dental exam and x-ray. It was not yet infected, so was relatively easy to go through the whole process to save the tooth.

So I am not sure what is happening with you and your jaw upset. If your dentist has checked it out and there is no tooth problem, then maybe you are starting to develop an intolerance for the drug. This has happened to a couple of the ladies who posted here.

Maybe try taking a 3-month Herceptin holiday and see how that goes???

[harrie]

Kim and Brenda, is it possible you are a clencher (bruxism) during the day or at night while sleeping? This is a common cause of jaw or teeth pain.

[hutchibk]

My oral surgeon is very up to date with necrosis info and he and my onc talked today about my wisdom tooth problem... I think they want me to go ahead and get it out now rather than later. It can't really be saved, and it would make no sense and would gain us nothing to attempt a root canal on it in the future, so we might as well take it out. Yuck.

[mamacze]

Hey Old Friend! How nice to hear from you Steph! I am glad to hear you didn't deal with jaw pain or mouth pain - it reassures me that maybe it isn't so bad; and I should be able to manage it. It is interesting that you noticed a change after coming off - I am not sure if I even remember what I felt like before Herceptin!
I can tolerate a bit of jaw pain in return for NED from Herceptin.
I am so glad to see you are still NED - way to go!
And Harrie, thank you for the suggestion re clenching - sometimes when my kids trash the house I am sure I clench (!!) but for the most part I don't think that is an issue.
Love Kim from CT

[hutchibk]

Harrie - I have never been a 'clencher', but you know, with the tension that comes along with being a mets patient, and all that includes, I think it is possible that I do clench when I don't realize it....

[Sheila]

Hey Kim
Great new picture of you!!!! I have never had any jaw pain or mouth problems....I have had alot of teeth problems but I think that is more from extended and continual chemo. I have been on the Herceptin for over 6 years now and well ove the 100 doses, but with all things, we all react differently....I hope whatever it is it resolves itself soon.
Glad to know that is your only symptom...life is good!

[mamacze]

Hmmm - you don't have it either - well that is reassuring in that it may not be the Herceptin - I will have to check things out with my dentist.
In the meantime; I am wild about the fact that you are in your 7th year!!! Whoo Hoo! I love you healthy role models!
Thanks for your feed back!
Love Kim from CT
ps yes I was LONG overdue for updating the pix; thanks!

[Adriana Mangus]

Dear Kim;

Glad to hear am not the only one!

I've been on Herceptin since Sept. 2003.

I have experienced pain in the jaw/teeth area for quite awhile now. I blamed this on sinus pressure, seasonal allergies, etc-- family doctor diagnosed me some time ago--, but now I'm not so sure.

The pain in the upper teeth is extremely bothersome, it runs from the jaw and up into the upper teeth area.

It could be that this problems is just a side effect caused by Herceptin, rather than having developed resistance to this drug.

Other women on this site have complained of watery eyes, sinus congestion, runny nose, etc.,


Love,

Adriana

[harrie]

Adriana, you had mentioned pain in the upper teeth. It is not unusual to get pain with the upper teeth when there is a sinus infection. Reason for this is because many times the roots of the bicuspid and molars may get very close to the sinuses and the pressure in that area can cause sensitivity to the teeth. It does not mean that there is any "problem" with the teeth even if it feels like there would be. when the sinus issues clear up, the teeth sensitivity also goes away.
Of course, if you are having tooth pain, it is a good idea to get it cleared with your dentist that there really isn't a problem with the teeth.

[mamacze]

Adriana,
I am sad to hear you are dealing with this too; but at the same time glad to know I am not losing my mind. My worry is that it will develop into a necrosis - how long have you dealt with the pain?

[Midwest Alice]

Steph - Had my first leg cramp this week in the middle of the night. Just starting on my journey as a long term Herceptin user. I got out a heating pad last night and warmed my leg up a little before I went to sleep.

What do I do for leg cramping?

Thanks ALice

[hutchibk]

ahhh, yes, middle of the night leg cramps. Know them well. I always keep bananas in the kitchen and eat one in the middle of the night when the cramps are at their worst. Magnesium supplementation is helpful. Keep very hydrated. And you might still get them, but not as much. That is what happens to me. They are now sporadic.

[suzan w]

Hi Kim...I had a strange jaw pain off and on for about 4 months...of course I was SURE it was early stage osteonecrosis...turns out I had a cracked molar which only showed up in an x-ray...it was not sensitive to hot or cold, or painful at all. I would get a vague feeling of pain which would spread to my whole upper jaw. It was very uncomfortable and I could never quite put it into words whenever I saw my doc. Then it would go away for weeks and I would forget about it. I ended up with a crown on that tooth and have not had the pain since...knock on wood!!! XO Suzan