Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear Amanda,
I am so sad and sorry to hear about your new dental pain . I Hope that you are getting some good relief from your pain with the meds and that the abcess can be treated as soon as possible so that you will be able to go forward with your scheduled upcoming surgery and not have to postpone it any longer.
I was SO VERY happy to read the good results of your brain CT . I of course wish that they could have done an MRI instead of a CT given the better accuracy of an MRI for diagnosing any possible ASPS brain mets, but am grateful that you at least finally had some type of brain scan and that the results were negative.
Take care, feel better, rest, and let the Board know the results of your appointment on Tuesday when you are able.
With special caring thoughts, gentle hugs, healing wishes, and continued Hope,
Bonni

Hi Amanda,

So sorry to hear about your persisting dental problems! A few years ago I had awful pain in my mouth which turned out to be a nerve dying and led to a root canal. The only thing that helped me before I finally saw an endodontist who took out the dying nerve was clove oil.. it numbed my tooth completely!

Also, a great alternative to sugar and honey is agave nectar for your expresso. Agave is very sweet, so you only need a small amount, and its glycemic index is four times lower than honey!

I hope your dental infection is cleared up very soon and you are able to go ahead and have your surgery!

Best wishes
Jolie

Amanda wrote:Yes, this hurts like hell
vision is bad an ear hurts!

trying nasacort AQ till Tuesday... Great MORE drugs please ><

Hello again Amanda
Hope you've gotten some relief by this evening .
Try to floss between the offending tooth as well but make sure you have some mouthy wash that will kill the bacteria
Is this a tooth you've just had worked on?
If so seems like the doctor would of come in on Saturday and helped you out
Are you on antibiotics as well?
Hope you can rest
Thinking of you
Love
Debbie

Hi
I am seing the ENT tomorrow and if it is the tooth an i think it is tbh then i want a max specialist to remove iot because the nerve in involved

I have had two rounds of antibiotics an it didn't help at all

I have NORCO in the house for cancer surgery pain *Radiation damage to be honest* and i use half a 5 when needed.. this i had to take a whole 5

What frightens me is not having this surgery soon even pushing it out a week isnt ok an will also mess up the holiday fro my son Arggg i hate cancer

Just be patient! Better to do it right and make sure there are no complications, yes?

I do agree with Ivan. Complications is the last thing you need right now.

Chin up, Amanda!

he put me on allergy meds an said i have TMJ.. an motrin an heat an that i am cleared for surgery..

I don't grind my teeth though an have never had this problem before and the pain runs from my ear to jaw to arm at times :/ i have no idea what to do

I would probably have a brain MRI (even if you need to be asleep to be able to have it), and also I do not remember - did you have a full body bone scan?

So no infection ? How about X-rays ?
Hope the Motrin helps. I agree with Olga MRI is in order..
Don't know if there is any reason to have it done before lung surgery but still needs to be done
Hope you're feeling better today

Love
Debbie

Dear Amanda,
I agree with Olga and Debbie regarding the need for a brain orjaw and head area MRI since you have no previous history of TMJ. Does your dentist know that you are an oncology patient with a metastatic cancer that can metastasize to the jaw, cranial area, and brain? Is your oncologist aware of your symptoms? To me the severity of your ear and jaw pain and radiating symptoms are more indicative of a different issue than TMJ which needs to be further evaluated and properly treated prior to your surgery. Take care, feel better, and keep in touch with the Board as you are able.
With special caring thoughts and concern, healing wishes, and continued Hope,
Bonni

CT chest, abdomen an brain done all ok sight growth in the lungs but nothing new...

I am getting the cavity done that is on the side i am having problems... This happened the day i got the tooth infection an that tooth bottom right side if where the pain is.. an it radiates now down my neck an arm right side i am doing mortin an norco when needed...

my teeth are a mess an i have had pain for years now an i have a history of sinusitis that is very bad

The motrin stopped the jaw pain an i am still in pain in my shoulder

My dentist says it maybe because of the teeth they have pulled :/


Burt yes CT was done an nothing an i am thankful for that ...

Xrays do show a problem on the lower right molar that has the cavity an that will be done at two tomorrow...

The CT from what i remember is in slices at 2 or 3 mm :/

Amanda
They said no infection?

Anything seen in the jaw area on x-ray?
How long ago and what tooth was pulled?
Is your dentist a surgeon or general doctor of dentistry ?
Sorry for all the questions
Debbue

Hi an it's ok ask away you are helping me <3

Infection was upper center then three to the right tooth an was bad... many on both sides of top have had to be pulled on the upper side only since radiation four years ago its all we can think of that did this i have never done drugs an though i have sinusitis i don't think it would cause this to happen

Jaw pain and tooth with cavity are both right side and lower... All started same darn day


nothing in x ray at all an palpated and looked at over and over. Dentist is a doctor an ENT has looked back there twice an was hitting teeth yesterday an the bottom one hurt bad when he hit the top of it when the tooth was infected the lower one also started to hurt and my chin went half numb. I freaked out called my onc demanding brain an sinus and eat CT asap... had it all clear.

We found the met in my 8th rib via a CT scan also an though i can no longer have contrast they said they can still read these an see things though can't tell if they are vascular because i cant use the contrast.. they also said that any thing found would be instantly thought of as ASPS because of my diagnosis either way.

My ear is also stuffy an hurts an stared same time

I feel like a train crash and i am freaked out about having surgery like this

Hey there

Hope this evening is treating you better
Let's review what you are up against
When are you scheduled to get your tooth taken care of?

Can your oncologist visit with your dentist and determine what he sees as the treatment for the tooth and then schedule the surgery as soon as humanly possible?

If that can't come together soon then maybe the MRI needs to be scheduled. I see two reasons


1) the sinuses--as a result of tooth problems, I think your sinuses need be to looked at more closely by a quailified doctor. Ear ,eye and nose specialist. Sinus infections should not be ignored..maybe fungal issues or infected bones

2) to survey for mets

Please consider the MRI--for yourself and your son and your family

Love
Debbie

CT was done to show sinus and ears and ENT looked at them and it seems i have a possible negative pressure an thats why i am having sinus problems they are saying...

top teeth have been bed a long time an are getting better but the three left that are yucky...

Onc does know thats going on and seems very lax about it and he is out of town for a week...

I left a msg for surgery and will i hope hear from him soon...

MRI i will need to be completely put under i am extremely claustrophobic also no dye can be used... I can't even do this for my son it is so bad

I did two rounds of clindamycin *I think thats how it is spelled* lol

I think it maybe an abscess under the bottom tooth many cases antibiotics cant kill the abbesses an they need to be worked on by a dentist. I want a maxi facial specialist an i am seeing the dentist tomorrow to see what he says an if he sayd he cant do this i will get a referal from my ENT an i will i hope be in there chair on friday ...

I am ok sinus hurts a little as usual i am used to that for years now... Jaw hurts by the tooth that i want delt with an i hope and pray that they can fix the tooth and then the problem will be fixed this is very debilitating and before the tooth infection i was feeling great I miss feeling great so much