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

[Amanda]

Hello, good news bad news an waiting in hopes of good news...

lung surgeries are off for now till we find out clearly that i do not have an infection. Then we will talk to each other about the jaw.
i still have 13 things on my lungs some just sitting there doing nothing... an the largest one is 2.2 cm ...
i am starting Cipro 500mg for two weeks... Praying that it is inflammation making the CT look like there is bone loss!!!! But chances are it is bone loss (
I talked to the ENT and he said it looked like cancer to him and it looks like a moth was eating at my jaw a lil and that if this is cancer i will live thru this but i will have to have part of my jaw replaced at UCLA by Dr Keith Blackwell... *I think he has seen other ASPS people here*

I am having another CT to check after the antibiotics are done for two reasons.. to see if there is any progression and to also see if it was inflammation that made it look like this.

I now have three types of medical PPO insurance to cover this all...

The only thing that is making me not want to throw myself on the floor is that they are saying i will be ok....
and i am going to as i said before be thankful! the lungs can wait a few months if needed ...

I will let Blackwell an Foshag decide i will go with there plan i trust them both very much!

any suggestions?

[Olga]

Sorry to hear that. Sounds like a good plan.
few questions to ask:
1. Why not to have a jaw MRI right now. Inflammation and ASPS met might look similar on the CT scan but they look very different on the MRI scan fore sure.
2. Biopsy?
3. If it is an ASPS met after all, why not to consult Dr.Littrup re. possible cryo. What are the advantages of the surgery versus cryo? It all depends on the size, location etc. and Dr.Littrup's opinion after all too.
4. What about trying Cabozantinib (Cometrig) first to reduce it and to make it easily resectable. We have some info here.
http://cureasps.org/forum/viewtopic.php?f=66&t=805
one of our patients is on it now but is not updating. Not the good sign.

How is your pain.

[Amanda]

Hi Olga,
I won't go on any chemo meds ever ever ever.. Or until they say I have to...
Pain is now manage on my own an I'm doing well unless I don't take the Motrin on time an that happened a lot sadly an I feel some pain no matter what but it's livable I'm laying here with ice right now in pain waiting for the meds to work
When I go to dr Blackwell I'm sure he will want a biopsy done an at that point I'll be ok with it with him because if his experience with cancers.
I want cyro also but the bone is seeming to be eaten can he do cyro if it's chewed up? When I see dr Blackwell I will also consult with the other dr you are suggesting
He said MRI isn't for bone sarcomas ct is :/
Do you think dr littrup will do a phone consultation an review scans? I would love that!
I am on cipro because I still feel it's not cancer this started with an infection an my lung surgeon thinks it's an infection also so this is why we are stopping everything for two weeks to see if this helps. It all stared with that dam tooth an I agree inflammation looks,like cancer on a ct
Sorry my reply typo or looks a lil weird I'm on the iPad
My concern an everyone that has cancer should be are doctors now assuming it is cancer related when it is not so it's always a fight to make sure things are not over looked because of that
Have you also noticed they tend to do that also.

[quote="Olga"Sorry to hear that. Sounds like a good plan.
few questions to ask:
1. Why not to have a jaw MRI right now. Inflammation and ASPS met might look similar on the CT scan but they look very different on the MRI scan fore sure.
2. Biopsy?
3. If it is an ASPS met after all, why not to consult Dr.Littrup re. possible cryo. What are the advantages of the surgery versus cryo? It all depends on the size, location etc. and Dr.Littrup's opinion after all too.
4. What about trying Cabozantinib (Cometrig) first to reduce it and to make it easily resectable. We have some info here.
http://cureasps.org/forum/viewtopic.php?f=66&t=805
one of our patients is on it now but is not updating. Not the good sign.

How is your pain.[/quote]

[Amanda]

Question... Can inflammation on a ct look like bone loss to the edges of a bone like a top of lower jaw?

[Bonni Hess]

Dear Amanda,
I am so sorry that you still don't have any defintive answers, but am grateful that there is still some Hope that your pain and the area of concern on the CT may be the result of tooth infection rather than an ASPS jaw met. I'm glad that you are feeling some relief from the pain with Motin and ice packs, and Hope that the Cipro will take effect very soon and be successful in resolving the infection and inflammation. However, if it does unfortunately prove to be an ASPS met rather than a tooth related infection, I agree with Olga that you should explore other possible types of treatment rather than resection of the met including Cryoablation with Dr. Littrup and SBRT which Olga discussed in a previous post before you make a surgical decision. My heart breaks for your continued pain and the stress and anguish of having to wait another two weeks before you know more definitively what you are dealing with, but I Hope that during that time you will begin to see a resolution of the pain and inflammation to help alleviate and rule out the concern of a met. Take care dear Amanda, rest as much as possible, and know that my most special caring thoughts, healing wishes, and continued Hope are right there with you.
Bonni

[Olga]

"Often an MRI scan is done to better define a bone mass seen on an x-ray. MRI scans can usually tell if the mass is likely to be a tumor, an infection, or some type of bone damage from other causes. " - from American Cancer Society web-site http://www.cancer.org/treatment/underst ... -diagnosis
but probably there is some specific with the jaw bone that makes it less useful. Since it is close to the surface and palpable/visible, You should probably go for the biopsy. You really need to find out what it is.
Dr.Littrup mostly does initial consultation long distance, you do not even need to speak to him for a starter - he just needs to see the scans/pathology results and he lets you know if he thinks you are his case, to proceed further. Barb, his assistant, navigate you trough, she is more accessible if you would want to speak on the phone.
I do not know if inflammation on a ct look like bone loss to the edges of a bone like a top of lower jaw.
Are you going to see Dr.Blackwell in two weeks?

[Bonni Hess]

Hello again Amanda,
I Hope that you will present the information to your doctor that Olga has shared and pursue the possibility of having an MRI if possible since that would fast forward the process of having to wait for a more definitive answer regarding the jaw met concern, and perhaps enable you to be able to move forward sooner with treatment if it is needed. Waiting is so difficult and stressful, and takes such a huge toll on you physically and emotionally, Once you know what you are dealing with you can make a treatment decision and do what needs to be done if you do have a jaw met.
Crossing the miles to embrace you with gentle hugs, positive thoughts, special caring, healing wishes, and continued Hope,
Bonni

[Amanda]

Hello,
I see dr Blackwell 12/17 an I have a sooner date Tuesday next week that I told them I may need because of pain an the possibility the cipro isn't working for 11/17.. I am covering my butt, lol

I just can't see this being cancer .. It does not start from a tooth infection an turn over night into a nightmare with ear pain an the sinus over the tooth pain.

I am setting things up trying to also get dr foshag an dr Blackwell in communication to see what surgeries will happen first an also discuss my possibly having Ivan's dr treat my lungs an then take a train or plane home what ever he feels is safe a train would be cook it would be 5 days I think
They from what I am told May wire my jaw for six weeks! So that's a long recovery an though the mets in my lungs are slow I would rather at least start the lungs first if the is time... Do you all agree lungs if possible first?

Thank you so much for all your help all the time I really need the imput an it makes me feel like I am not alone that I have you behind me!<3

[Bonni Hess]

Dear Amanda,
If it is determined that you do have a jaw bone met rather than a tooth infection, which I am holding very tight to Hope is NOT the case, I personally strongly feel that your priority needs to be treating the jaw met rather than your lung mets. As you noted, your lung mets have been fairly slow growing so you probably have more time to wait to treat them than you do if you have a jaw bone met which needs to be treated at its smallest possible size to ensure the greatest chance of success, and the least amount of destruction of your jaw bone. I again urge you to contact your doctor to request an MRI of your jaw as soon as possible to try to definitively determine whether you have a jaw infection or a jaw bone met. I am perplexed about the basis/rationale of your sudden decision to change the treatment of your multiple lung mets from the previously planned and scheduled surgical resection to Cryoablation with Dr. Littrup, especially since Dr. Littrup would most likely not be able to ablate all of your mets.
Take care dear Amanda, feel better, and keep in touch as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Amanda]

Hi Bonnie
I will use Ivan's dr if we must hurry
Otherwise I will be doing as I planned before with dr foshag
I agree the met in the jaw should go first an I will wait an see what the drs say

[Bonni Hess]

Hello again Amanda,
Have you called the doctor to ask if there is a possibility of getting an MRI for your jaw based on the information that Olga shared? Also, if the infection does not resolve and the doctors continue to feel that you have a jaw bone tumor, I respectfully disagree with Olga about having a biopsy because there is always a concern/risk of possibly seeding the tumor cells with a biopsy. Given your history of ASPS and the fact that ASPS can metastasize to the jaw, if there is a lesion on your jaw bone, it is more than likely an ASPS met which will need to be either resected or treated no matter what the results of the biopsy may show, so a biopsy would be an unnecessary procedure. Regarding your plan to have Cryoablation with Dr. Littrup if there is an urgency in treating your lung mets, he would be unable to ablate all of your 13 lung mets, but he could possibly ablate a couple of your largest and most concerning mets if necessary. However, it seems to make more sense to have all of the lung mets surgically removed by Dr. Foshag as you had originally planned, and once your jaw issue has been resolved.
I Hope that today finds you feeling much better, your pain under control, and the inflammation and infection dissipating and resolving.
With gentle hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Amanda]

Hi Bonni
Having you and Ogla here makes me feel so much better! <3 you two have been thru this and helped me every step now an its been over four years! ! An now Dap and others have also stepped in <3 .. i can't even tell you all how much this is meaning to me!

I think my fear of spread is one of the main things that is frightening me now... i am blessed that i will see Dr Blackwell who is the jaw cancer man!

Though i still feel this is a bone infection i am going to take an emergency appointment with Dr Blackwell on the 19th if this pain an new antibiotics seem to not be doing any good! I am alergic to the antibiotics i was given I seem to now be alergic to so many we are running out of types

Here is the plan...

Lung surgery will be decided between Dr Blackwell and Dr Foshag.. Dr Foshag said we have time an so i will let them decide If it is a rush for some reason then i wil pick out of the doctors Ivans Dr because he seems to be great with ASPS an i want the best But, Dr Foshag is more then a Dr to me he is a friend that has been thru hell with me an i love very much so if i can it will be him that does this ...

I will start the new antibiotics i hope tomorrow..

I will continue with motrin 600 to 800 mg as per how i am feeling
NORCO 5 mg/375 every 6 to 8 hours
* I sometimes break the NORCO pill in half if i can so as not to abuse this stupid med an i refuse to be a mess an out of it in front of Aidan i don't care how much i hurt! *

The pain is coming from a swelling a lil over the gum from a round and a lil squishy lump around 1 CM that is sitting on the bone.. the swelling from what i can tell seems to be the swelling i am feeling that is why you can't see clearly on the CT of the bone.. An an MRI will be done pre anyone poking even if i have to be drugged! Do i need to have contrast?

I have ordered the last three years of CT from the neck up an all dr notes too take to Dr Blackwell because i know he will ask for them and i am cutting the time on doing this while i wait for my appointment it gives me something to do.

I am having a CT of my jaw done again on 12/12 and i have requested that a bone expert review these scans an i informed then i will also be bringing three years of jaw scans for the Dr to compare them with. **For anyone that is having CT or any scan done and it is NOT the regular place taken always bring a comparison for the reading dr to receive and compare with***

I see Dr Larian again on the 12/13 an he will inform me of the scans an of his feelings if this is an infection or not. Though he is convinced it is sarcoma an **i agree with OIlga that the scans may be showing this because of the inflammation**

My appointment with Dr Blackwell is on 12/17 an at that appointment i will ask that pre surgery or any treatment that we do an MRI jaw. I don't know how i will get in the dam tube but i HAVE TO i can DIE so this fear stuff has to stop! Or i will just get drugged! I am going in it!!!
An bonni he would be the only person i would consider allowing lance this thing because if his background.. but even then i am 100% not going to be lax an i will assume he has not as much education as i do in reference to the spread an inform him in a loving respectful manor... I don't want to die from ASPS Even with the jaw an lungs as they are i am blessed and can live a full life! I wont just let him do this <3

I have made an emergency appointment with Dr Blackwell 11/18 for pain or if i am frightened or if there is a problem to cover thine ass If the antibiotic seems to be working and pain is dropping then i will let that appointment go to another cancer patient that is in need an proceed with seeing Dr Larian and then Dr Blackwell in december...

I have found a few ways to help with my jaw pain *though it isnt helping my ear and sinus that hurts* it sure tastes good and it is almost instant in stopping the jaw pain.. ICE CREAM lol I have a place that sells Lavender, orange blossom an a rose water saffron.. It is so helpful for the pain an also the scents are wonderful mentally relaxing an so pretty! Its like eating flowers

[Bonni Hess]

Dear Amanda,
Thank you for all of the additional information. I am perplexed and concerned about your waiting a month for another CT scan and your appointment with Dr. Blackwell. I understand that it is difficult to definitively determine what the 1 Cm. lump is because of the inflammation, but it seems that if the antibiotics haven't started to show success in reducing the inflammation and swelling within the next week or so, that an MRI should be done sooner instead of later, and certainly before mid December. You need to know what you are dealing with, and you need to do whatever it takes to find out as soon as possible. It is good that you have ordered copies of your CT scans from the past three years for Dr. Blackwell to review, and perhaps you can have these sent to him now to expedite his review rather than waiting to give them to him at your next appointment.
I am grateful that you have found relief from your pain with some yummy ice cream that sounds like it is good for the body and soul . If only ice cream could heal everything what a wonderful world it would be, huh?!? Enjoy and feel better dear Amanda.
With deepest caring, healing wishes, and continued Hope,
Bonni

[Amanda]

Hi
Yes, if ice cream were a cure all that would be wonderful!

I had to stop the antibiotic i has a reaction i will start it tomorrow ...

Today i have noticed i do feel a little better less pain an i am not sure why yet an i dont want to get all happy about it also yet... if this is better by tuesday i will be very happy if not i am going to try and go to Dr Blackwell tuesday...

What about a closed needle biopsy?

Also, if this is an abscess an he wants to lance it i am frightened!!!!! there is no where for the yucky stuff to go! An the only want i can see this happening an it getting better is by lancing it... how can i make sure there is no sarcoma in it ?

[Amanda]

***UPDATE***

So it is not a cat an mouse game of is it an infection or not my dr has sent a referral to Richard T. Sokolov, MD an infectious disease dr at Ceders...

On Monday at 1:15 say a lil prayer that it is an infection an that this man catches it!!

If this is rulled out then it is either a cancer or a non malignant tumor and still maybe causing destruction and i read up on non malignant tumors in this area can be not only destructive in time but become cancerous! we will know how an when to act

Why are not all doctors like this? I see many wonderful doctors an this man is amazing!!!

If any of our cancer patients needs an ENT onc. in Los Angeles Ca please see him! He is honest, caring thrall an thinks beyond the scope an has no real ego! RARE rare rare! http://www.larianmd.com/about.html

I have an appointment tuesday an if test results are in an the infectious disease Dr says it is cancer or a tumor i will go to Dr Blackwell the next day! If it is a desease i may go anyhow to become one of his paitents so i have a foot in the door!

I am making it clear **NO BIOPSIES AND NEEDLE**

I hope that this all works out my sinus and ear is starting to hurt again also if it is sarcoma or cancer after i faint and cry i will let everyone know <3