Amanda R :) from California - Dx 2009 - RIP March 2015

[D.ap]

Hey there

Been wondering about you today..
So was the CT without contrast, as that is hard on you ?
You have a fever?
How about blood work?
One of the doctors need to give you more meds and/ or info , huh..

Don't want to mess around even if its an infection. Some times bone infections are very stubborn and don't respond to antibotics immediately

Hope your eveing/night alows you to rest.
Hugs
Debbie

[Bonni Hess]

Dear Amanda,
I am so deeply saddened and sorry about your heartbreaking continued severe jaw pain and the new concern regarding a possible ASPS met being the cause of the unresolved pain. On what basis is your oncologist basing his opinion that you may have a jaw met, what scans/tests are he planning to do to confirm or rule out his possible diagnosis, and when will they be done?
We are currently in Edmonton, Alberta for Brittany's 54 month Cediranib Clinical Trial chest CT and abdominal/pelvic MRI scans which she had today, and then will meet with Dr. Sawyer tomorrow morning to receive and review the scan results so I will be away from the computer until we return Home late tomorrow night, but will be anxiously awaiting your next udpate and holding very tight to Hope that it is determined that the cause of your pain is a benign treatable tooth infection rather than an ASPS met. In the meantime, I Hope that you are getting relief from your pain with adequate pain meds, and that you are able to get some rest to preserve your strength and energy.
Reaching out across the mles from cold and snowy Canada to embrace you with warm hugs, deepest caring and concern, healing wishes, and continued Hope,
Bonni

[Amanda]

Hi Debbie
Well it seems that this is going down an i am using motrin an norco to deal with the pain an that pain seems to be starting to get easier to deal with! This to me says it is an infection an a bad one... there is still a small balloon like area and it even seems to be getting better... The swelling went over the gum an seemed to be looking for a place to go Thats swelling is now gone! an when i touch that area i can smell some thing yucky!!!

I do not do contrast ever now they gave it to me so much it now makes me sick an it can only be used in an emergency i will barf an be sick for days after...

I checked for a fever but i was on Mortin an that reduces a fever but i had two times i broke out in a huge sweat an we had no idea why i was also feeling veru weak and ill...

No blood work yet an my Onc has not physically seen me yet... He has been calling is wonderful Oncs to look at this .. he is saying it looks in a CT like Sarcoma but he is not 100% an to me thats a great Dr he has no ego an love for me an i wouldn't trade that for the world But, it is getting smaller all around an mortin and ice wont shrink it if it is cancer in my opinion an i have never had this problem till i had the tooth infection on my top tooth an it wreaked infection all over my mouth This abscess has no where to drain btw so it is a slow process.

I went on two rounds of antibiotics an yes after talking ot my dentists office it can take three or more rounds... I am allergic to penicillin an any sulfa an others so its hard for me to get ride of these things ...

I may need clindamycin again

I only woke up one time last night to take motrin an norco an ice pack an it wasn't as bad as usual! That was a good sign...

*hugs hugs an hopes for no cancer *

Hey there

Been wondering about you today..
So was the CT without contrast, as that is hard on you ?
You have a fever?
How about blood work?
One of the doctors need to give you more meds and/ or info , huh..

Don't want to mess around even if its an infection. Some times bone infections are very stubborn and don't respond to antibotics immediately

Hope your eveing/night alows you to rest.
Hugs
Debbie

[Amanda]

Hi Bonni <3

I agree an this pain i must admit of worse then any cancer pain i have ever experienced! Even ten times worse them the rib that the sarcoma eat up!

CT no contrast an he said he thinks it is sarcoma but cant be sure an others are also looking at this scan...

Thank you hun for taking the time to post to me i know at this time even if all has been clear it is frightening

Read my reply above it also has a lot of info

I dont think its sarcoma now it an the swelling are shrinking an that part of my moth has an ewww smell to it an before this tooth infection on the top that seemed to travel down i was 100% fine before that!

Please, post soon results and love and hugs to you all!

Dear Amanda,
I am so deeply saddened and sorry about your heartbreaking continued severe jaw pain and the new concern regarding a possible ASPS met being the cause of the unresolved pain. On what basis is your oncologist basing his opinion that you may have a jaw met, what scans/tests are he planning to do to confirm or rule out his possible diagnosis, and when will they be done?
We are currently in Edmonton, Alberta for Brittany's 54 month Cediranib Clinical Trial chest CT and abdominal/pelvic MRI scans which she had today, and then will meet with Dr. Sawyer tomorrow morning to receive and review the scan results so I will be away from the computer until we return Home late tomorrow night, but will be anxiously awaiting your next udpate and holding very tight to Hope that it is determined that the cause of your pain is a benign treatable tooth infection rather than an ASPS met. In the meantime, I Hope that you are getting relief from your pain with adequate pain meds, and that you are able to get some rest to preserve your strength and energy.
Reaching out across the mles from cold and snowy Canada to embrace you with warm hugs, deepest caring and concern, healing wishes, and continued Hope,
Bonni

[Amanda]

I bet that Olga is right...

I will call my onc an let him know about the changes... but i bet she is right hehe

I think it is the opinion of all of us that it is an infection...

I am actually excited about my lung surgery now lol an i am going to ask my onc for every year to be put under for a brain MRI an no more fing about!

This woke me up again so maybe this was worth it

Ok, i will post back later after talking to my Onc...

[D.ap]

Amanda
This is looking better and better! Don't want you to be hurting however I we would much rather have a the infection , huh?
Eat plenty of yogert to replace the good bacteria that the antibiotics are also taking care of..
Hope you are feeling better today

Love
Debbie

[Amanda]

They havnt put me on the third round of antibiotics yet I called my Onc and waiting still fro him to call me back... i am also waiting for my dentist to call me an see if he will look at this an lance it if my onc says it is ok.. I do not want it lanced or poked till he gives the ok So here i sit in frustration in less pain but frustrated lol

I am actually excited about the lung surgery now lol

[Amanda]

Update time

My pre op for lung surgery is tuesday at 1:15 with Dr Foshag
*an then*
At 3:00 i am seeing http://www.larianmd.com/about.html

Does anyone have any knowledge in reference to this Dr i have linked or what do you think?

Dr Forscher is sending me ot him because he saw an abnormality in the bone on my jaw an wants it looked at to rule out sarcoma. It will be at that point up to both surgeons what surgery i do :/

If this is cancer i want to do what Olga posted to me! I hope that he has extensive experience with it otherwise i am getting on a plane and headed to Ivans Dr ...

As i said before i am no longer taking this for granted and being lax in war time again! I wish you all could be there with me lol But, having everyone here posting helps soooo much! <3

I hope it is nothing in my jaw or at least non threatening an i hope i can have my lung surgery because i am actually more excited then scared...

[D.ap]

Amanda
So the other surgeon is doing a consultation with your oncologist to decide whether it's cancer or not?
If they think not they want to surgically remove it?
I would get a third opinion possibly . Olga could maybe enlighten us to how they would know it is cancer What other scan/ test they will be doing

Is your current oncologist familiar with ASPS and how it tends to be very vascular ? My concern is the other surgeon would decide to surgically remove it only to find that it is ASPS and not be qualified to take care of it at that point
I don't know that for sure but it's a thought
He's not the doctor that did your first surgery , right ?

Let us know how big they think the abnormal bone growth is and how they want to pursue it
Until then I hope you continue to feel better

Love
Debbie

[Olga]

Amanda, today is only Friday and your consultation with the Ear, Nose, and Throat Surgeon is on Tuesday...By then you will most probably know if this is an abscess or not, because an abscess is an acute condition and is either going to decrease on the new antibiotic or to form a fistula and come off or something along these lines. The met on the other hand would stay relatively the same. So they will probably be able to get a clue from its behavior.
To find out definitely what this thing is, they would need to take a biopsy and/or to have am MRI (and it does not really matter at this point if it i done with the contrast and if you need to be put asleep in order to be able to lay inside of the scanner).
I wish that thing would regress on antibiotic, and you get cleared for the thoracic surgery.

[Amanda]

Hello
My ONC said he doesn't know what iris an this is a very good dr an he will tell us if it is cancer or not so wait wait wait an I don't know now if I will have lung surgery because of this... He said he thought cancer because these is an abnormality it's all he would say an that it would be up to the new dr an my lung surgen what oils happen next...

They have not given me antibiotics an the only thing that is helping is Motrin an ice...the Motrin take done the swelling an my ear an neck are hurting an sinus is doing that drip thing.. They have only seen the ct an never have visually seen this.

Can a infection make a met show up an hurt like hell when it was silent before . an will 800mg of Motrin stop,it's swelling? When the swelling starts I feel like my jaw is going to explode an it swells over the gum I can't believe they are just leaving me like this.
I started myself on the Motrin an the amount an am taking the norco for another reason on this. But I have found that the norco just relaxes me and it is really the Motrin that is helping. Now my ear feels hot inside not on my skin an hearing is again muffled.. Sinus dripping on the same side an glands are hurting ... I'm not a dr I have now enough medical background but this is screaming infection to me

I am starting to think I should go to an er but they will just drug me up an send me home so in pain an curling up with ice an Motrin

[Bonni Hess]

Dear Amanda,
I don't understand why your doctors are not doing more to try to relieve your severe pain, and why they aren't prescribing antibiotics to treat a possible abcess infection. I would definitely recommend that you go to the emergency room if the pain continues so that you don't have to needlessly suffer for the next couple of days until your doctor appointment on Tuesday, and Hopefully some diagnostic tests could be done at the hospital. I am not personally familiar with or knowledgeable about what symptoms a jaw met may cause, but your symptoms certainly sound more indicative of some type of infection to me. I know that the fear, worry, and stress about the possibility of a jaw met are probably compounding your physical and emotional pain, and I wish that you didn't have to wait until Tuesday to try to get some answers. I Hope that by now you have gotten some relief and have been able to get some sleep. Please take care of yourself and do what you need to do to get some pain relief even if that means going to the emergency room. Take care dear friend and know that I am there with you in heart and thought.
With deepest caring, special concern, positive thoughts, healing wishes, and continued Hope,
Bonni

[Olga]

I hope that you are in the ER by now. My sister had to have an emergency surgery to drain the sinuses after the infection went to there from the tooth root. And I know someone actually died from the meningeal infection passed from the infected tooth after it was overlooked - it is a scary case and should not have happen nova days with all the scanning available. They might be able to arrange the emergency MRI to rule out the jaw bone met!

[Amanda]

I have that yucky tastes in my mouth an taking norco an now found 600 mg is helping
I am feeling sinus draining in thought thank god an I am infuriated that this is happening ... My husband looked an dais it is not as big now an isn't bright red an looks to be the same color as my gums now
I have at times yuck in my through also an yes sinus pain on an off
The great thing is the dr I see on Tuesday is an expert an a love per other patients

No matter if I had not had pain meds an know to take the Motrin I would have been screwed an that's not ok I am swelling a lil around my eye an the pain is down because I am controlling it now
IF THIS IS SARCOMA I THINK I FOUND THE CURE *i am beyond mad* I can't even imagine what a patient with out all this insurance I have would be treated an cancer pain does not take a break on dam weekends they need to treat people!!!!!

I'm upset sleepy am now to be honest I think the lung surgery should wait a week due to this situation pain stress so I can recoup an be ready

Two things positive I'm getting knocked out an every dam year MRI contrast an MRI legs an abdomen pelvis like Ivan

Ct chest every six months an though I will barf an be sick for days after if they say it would help then I am doing it

Most importantly I am going to appreciate that I have only 13 things in my lungs an knock the crap off of fear of surgery I should be dam thankful an happy... Some times it tales a slap to wake up an this did just that :'(

I hope one day I meet you guys an galls that have put all the studies an love an care into this forum! You are resin able for my not doing chemo that would have made me very sick an not able to turn around an change my mind it would have destroyed my immune system
An I wish still that I had not done radiation the pain an the risk was not worth it it's radiation resistant

[D.ap]

Amanda
Hope you are feeling better today
Wow. I guess we all thought you were seeing a doctor recently
Olga is correct. The ER would be appropriate as this infection although it is gong down ,is NOT going away.
The real problem is that it is an infection that is incredible close to your brain They ,the ER,will be a third opinion that is apparently needed to WAKEUP the other two doctors to the fact that you need relief not to mention immediate help

We are not trying to scare you but give you our older/wiser opinions
Please think about it
Love
Debbie