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

[Bonni Hess]

Dear Amanda,
I am so very grateful that your doctor has taken action to fast forward your appointments to try to definitively determine as soon as possible if you have an infection or a tumor. My most positive thoughts, very best wishes, and greatest Hope will be with you on Monday for a diagnosis of an easily treatable infection. I'm so happy and encouraged to hear that you have been feeling a little better today with less pain, but am sad and sorry that your sinus and ear are starting to hurt again . Hopefully your new antibiotic will take effect quickly after you begin it tomorrow, and will clear up the infection and bring an end to your heartbreaking pain and worry. Take care, try to rest as much as possible, stay strong, feel better every day, let Hope continue to lead you on this challenging journey, and enjoy your comforting lavender and orange blossom ice cream
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Amanda]

Doctor seems to be waiting for desease specialist to prescribe an antibiotic on Monday ....
Wonderful fun another drug filled painful weekend ...
There are moments like right now I just want to put my hands up an say screw this an walk away
But there is nowhere to go

[MarietjievdMerwe]

Dear Amanda,

So sorry to hear that the pain is persisting. Hopefully there will a solution by Monday, so sad that you have to go through another painfilled weekend.

Special hugs from me.

Marietjie.

[Bonni Hess]

Dear Amanda,
I don't understand why your doctor would delay your starting antibiotics so that you can begin to get the infection and pain under control as soon as possible. I think that a phone call to him is in order to request/insist that he prescribe some antibiotics immediately, and if he refuses, you should go to the emergency room where you will Hopefully get the help that you need and deserve to prevent increased infection and pain. As Olga told you in a previous post, an untreated infection can be very dangerous and put your Life at risk. This situation and your heartbreaking pain and suffering have gone on FAR too long without a resolution!! Stay strong, please don't give up, and keep fighting despite the frustrations, worry, stress, and pain you are dealing with right now, and always know that you are not alone. Those of us on this Board are here for you to listen and try to help in any way that we can.
With deepest caring and concern, healing wishes, and continued Hope,
Bonni

[D.ap]

Amanda
I second Bonni's request. You don't deserve another weekend of pain let alone not having antibiotics

Take care
Love
Debbie

[Bonni Hess]

Dear Amanda,
You have been so very much in my thoughts these past couple of days, and I am so Hopeful that your yesterday's appointment with the disease specialist confirmed that you have an easily treatable infection instead of a jaw bone met. I will be anxiously awaiting your update when you have more information to share and when your time and situation allow. In the meantime, please feel better, try to rest, and take good care of yourself.
With gentle hugs, deepest caring, positive thoughts, healing wishes, and continued Hope,
Bonni

[Amanda]

Hello Bonni an Olga and DAP an everyone <3
I am sorry its been a horrid two almost two months now...
I have wanted to post but i am really not myself after that much pain over that much time
I cant believe i had to fight for weeks to get the CT jaw done! I am glad i am a pushy thing! What would have happened if i had the lung surgery like this???!!!

I seem to be getting a little better on my own or had plateaued and now i am also on Clindamycin 300 mg x 3 times a day for two weeks an it will be continued if it seems this mode of treatment of working.. I am praying it does other then that i will be after two weeks with a stay in IV an two weeks of IV antibiotics x 2 a day at the hospital and then take home antibiotics...

On the 12/17 with Dr Blackwell he may drain this thing because with this diagnosis it does say that has to take place it wont just go away it has no where to go so i will be put under an this done.. he is an Onc so i will have to trust him .. though i will share in great detail the vascularity of ASPS an deaths from arrogance of some Oncs...

It is thought now that it is 50 50 that this is a infection or sarcoma and the doctors agree with Olga that CT does she this as a possible cancer if an infection mence the confusion. I am seeing Dr Blackwell at UCLA 12/17 an at that point even if this is or was a infection because of the possibility it is an infection that many get in the TMJ joint an I can't remember the name right now it does eat bone an it maybe that it has created a lot of damage :/ This would mean reconstruction ... thats worse case so i am not even going to think about that because i can open and close my jaw when there is no swelling easily...

Seems when it rains it pours an it sucks!

My lungs are going to be ok i am thankful they are growing slow so i can wait a little bit and deal with this jaw crap

I am in pain but doing what my chest surgeon told me to do an it is working

Love to you all and huge hugs!

[Bonni Hess]

Dear Amanda,
Thank you for your thoughtful update in the midst of your continued debilitating pain. This sounds like somewhat encouraging news regarding the diagnosis uncertainty of infection verus ASPS met, but I remain perplexed as to why a jaw MRI is not being done to try to more definitively determine the nature of the pain and swelling, and why you are not seeing Dr. Blackwell until December 17th which seems like a long time to wait given your situation and how long it has already been going on. I am so Hopeful that your new regimen of antibiotics will successfully cure your infection, but also Hope that the doctors are doing as much as possible to properly diagnose and treat your symptoms and condition. Feel better dear Amanda, and keep the Board updated as you are able.
With gentle hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Bonni Hess]

Dear Amanda,
Remembering that dear Jordanne's ASPS diagnosis began with jaw pain symptoms (even though her primary was later found in her thigh), I have cut and pasted the entry from her mother Dotty which was posted under Jordanne's topic in the Personal Stories and Upates section of this forum. Hopefully this information will provide further insights into the symptoms of a jaw met tumor, and will help to possibly alleviate your concern since it appears that Jordanne's met was apparently able to be clearly diagnosed from a CT scan, which yours has not been, and then the subsequent biopsy definitively diagnosed it as ASPS. Also, Dotty doesn't mention Jordanne having pain or infection, so Hopefully this too is a good sign that your area of concern is caused by a treatable infection instead of a tumor.

This is the story of my daughter, Jordanne, and her battle with ASPS.
August 2009 Jordanne went to see her dentist for a root canal due to numbness in her mouth. After the root canal, the area was still numb and her dentist saw a dark spot just at the bottom edge of her Xray. He because concerned and sent her to an oral surgeon in Olympia to do a CT scan of the jaw where they found what seemed to be a tumor in her lower mandible. When the surgeon did the biopsy, he commented that he couldn't get it all because there was so much bleeding. They sent the tissue to the University of Washington for dx and we expected results in a week. 5 weeks later we were still waiting and they couldn't figure it out. After they mentioned that it might be some type of rare. I started investigating her symptoms on the internet and saw some mention of different primary tumors that start in the lower extremities. This made the connection that she had a swollen thigh that she thought was a pulled muscle that was becoming more painful and that had been giving her problems for months. So we called the oral surgeon with this bit of information. Low and behold they were able to make the connection and dx that she had ASPS. With further MRI and CT scans revealed that Jordanne had about 45 small lung mets as well

With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Amanda]

Hello
They are all in agreement that this is a 50 50 and the only reason they think it is cancer is my history...
But, seems like i am getting my energy back and the pain has changed and my skin color is better..three days now on the antibiotic. I am still having ear pain that will just out of the blue stab me in the ear an wow does that hurt, my gland kinda still hurts but my jaw is less painful.. I am having shooting nerve pain in my jaw but now i can feel that part of my face better and it is almost 100% The numbness seems to be almost gone now and i am so happy about that it felt weird!
My sinus feels better now..
I had a CT two years ago and it was of the jaw and no sarcoma...
I think because of how this happened it has to be a infection this started with a very bad tooth infection on the top that went into the sinus and ear an this thing...
Its not any bigger and when i see the Dr Blackwell i think they will do a procedure on that date to drain this .. he maybe getting an MRI and i will ask for it before i let them drain this.. he may say though that its an infection and no MRI.
He is a busy Dr so getting into Dr Blackwell is hard at times an I am thankful of this december date.

On December 2nd i see the infectious disease doctor and if it is not better and shows no sign of any positive changes i will be on IV antibiotics for the two weeks pre seeing Dr Blackwell... You know maybe i will just call Dr Blackwell's office if it isn't better december 2nd an see him.. if they are going to be treating this for two weeks an it is an infection or a cancer an the surgery would be done most likely anyhow i think december 2nd i will see him an get on a list.. Thank you for stirring this in me! You are right the two more weeks of pain an feeling like crap an unknown is not worth the waiting...
I was told also that even if this is an infection they may decide to remove that part of the bone with the same type of surgery used on cancer.
Thank you! <3
Ok i am going to take a pain thing my ear is being a real jerk right now and stuffed up so hearing is weird an pain...

[D.ap]

Hi Amanda

How are you feeling today ?
I reference to your response to you maybe being #3 person with a jaw met :

The 2nd of December will be here before you know it
Remember to remind every one you see at the doctors office of your dx of ASPS
You can't remind them enough as it is a VERY important for all involved to have knowledge about
I remember a year ago after Joshua's primary was removed and a VATS was performed on his lung where we saw "spots"
I was really working hard on imagining and at the same time praying that he not have the tumors tested as positive for ASPS
Low and behold the tumors were tested as positive


What I am trying to say here and in the future we all need to be proactive in our care
Admitting that it MAYBE asps is not weak or negative but proactive thinking
We need to keep our chins up and take that ASPS bull by the horns and meet it head on because we have people that need us to be strong when we can

I know that I have been and I will always be sending positive waves your way !
Keep in touch
Hugs and love

Debbie

[Amanda]

Hello
Well, slowly gaining a little more strength and i also saw my homeopathic Dr today and started a treatment that will work alongside what the infectious disease Dr is doing...
Monday december 2nd i will see my infectious disease Dr at Cedars an I am almost sure now the Clindamycin 300mg x 3 a day will be continued now if not elevated in dose because if this was sarcoma it sure as hell wouldn't be getting better an I am still strongly convinced that this is due to the infection an gum disease i have an it going to the sinus, then ear an tube to jaw... all within 12 hours... sadly i know sarcoma bone pain an this reached far beyond that pain an was also nerv...

I hope with all my heart that i will be correct but i am STILL seeing Dr Blackwell at UCLA december 17th and will ask for more information and scans an i want this thing if it is still there drained if he agrees that this is not sarcoma.. he must be 99% convinced that this is NOT cancer i am frightened of spread and i will me DAMNED if i am going to let anyone pop this unless they are sure .. I would rather live in pain to be honest!

In either case i will be healthy and ready for surgeries whether it is jaw or lung from all of this...

Laser was done to my jaw to treat the inflammation and it also helps with diseases of the gums and helps to kill and break down the pockets or infections trapped in the gum. I must tell you that within seconds of him using the laser iu felt some relief in the pain and pressure. I thought it wasn't going to work like that and wow i was wrong...

1000 mg x 3 vitamin C it is in a different form than that things that are usually used over the counter and it has A a other stuff to help absorb better.

Vitamin D / K liquid x 2 a day

Vitamin B Comp x 2 a day

My normal mineral mix vitamin ...

He pulled me off my regular multi vitamin for now and said because of the other dr treatments and his that it needs to be very focused and clear what i am intaking... My infectious disease Dr at Cedars told me that vitamin C has been a help in the past and to add that.

Also, i am on a green drink in the morning with crusaficious an ginger of any mix i choose..

I have had to set alarms on my cell phone and its going of all the time lol

Two hours before my antibiotic an six hours after my anti biotic i am using a double strained greek yogurt to combat the horrible side affects of the antibiotic! I had a problem start an started the yogurt myself an YAY it worked!


Tomorrow is thanksgiving an i am thankful for my family and my wonderful husband and son! I have such a wonderful an loving support system an for that i am blessed!

I am also thankful for my ASPS family because if it was not for you all i wouldn't be here today! I would have made decisions with out information an blindly agreed with my dr's and my story would be a verity different one today! I love oyu all very much! an with you all peace, love and health an happiness!

May what ever god you look to bless and keep you all close thru this holiday season!

[Ivan]

Looks like I'm getting my next lung CT scan the same day you're seeing the doctor so hopefully we both get some OK results

Also, homeopathy (aka placebo) is not something I would spend a cent on - http://youtu.be/mFtJgCzPgL0

[Amanda]

Best of luck to us both!

An its working already on me Less than 8 hours swelling is going fown more... sorry you don't think this works because it does lol

funny seems this is always attacked here and it is done all over the world.. Western medicine is in some wants very far behind i truly hope you if needed do not shut the door on it if you need it... The laser i am using right now is used and here it isn't in the US much yet the FDA are jack ass...

Anyhow i would appreciate it if you refrain from insulting my treatment because it is working and also backed my my western drs and the video was ridiculous

Happy holidays

[Olga]

Amanda, we are happy to see that you are felling better!
Please do not feel offended by Ivan's blanket statement and no treatment is attacked here but merely we, as a policy of this board, only support the evidence based medicine - alternative medicine or not, FDA approved or not, as long as they are supported by the studies in human with the results consistent with the claims. In Canada most of the alternative medicine drugs are already pulled removed from the shelves as not supported by the facts and as distracting the people from other evidence based treatments.
If you have found any relevant articles please share with us. The are should be some - from other countries for example...
If you feel that it works for you, but you have no scientific proof, it is between you and your doctors to decide.
From my point of view, You are taking some of the most strong antibiotics now and I see no way for you to find out if any additional less strong treatments work now along with the antibiotics. Pulsed laser is used in the dentistry as an official device to combat the infection, is it?
Anyways, the main thing is that it is getting better and it is a good sign.