Good morning Amanda
How's your insicion healing?
I hope your pain level is becoming less as each day passes!
Write when you can
Love
Debbie
Amanda R :) from California - Dx 2009 - RIP March 2015
Re: Amanda R :) from California - Dx 2009
Greetings little family! 
Well, it was ASPS in the jaw.. The &^GY&&%%$$!!! cancer!
I was told they got wide margins an took out lymph nodes by my ear an checked every thing! I am blessed that i had the two surgeons i had!
I will be having bone scans every six months.. it seems to be in myself more aggressive with my bones.. also I will be going to Ivans Onc if i get any results that show ASPS or a suspecting my scans... He can zap the sarcoma an i can go on with my life.
I am feeling better an looking more like myself now. I was even hit on by a Dr at the building i was in when i was going to see my Dr lol When you look like this an a nice well dressed man does that it feels good! lol
Anyhow, i will be getting lung scans done soon an i will be re thinking lung surgery an Dr L Ivans Onc... 13 mets all under 2 cm lets pray thats what it reads when i do them <3
Well, it was ASPS in the jaw.. The &^GY&&%%$$!!! cancer!
I was told they got wide margins an took out lymph nodes by my ear an checked every thing! I am blessed that i had the two surgeons i had!
I will be having bone scans every six months.. it seems to be in myself more aggressive with my bones.. also I will be going to Ivans Onc if i get any results that show ASPS or a suspecting my scans... He can zap the sarcoma an i can go on with my life.
I am feeling better an looking more like myself now. I was even hit on by a Dr at the building i was in when i was going to see my Dr lol When you look like this an a nice well dressed man does that it feels good! lol
Anyhow, i will be getting lung scans done soon an i will be re thinking lung surgery an Dr L Ivans Onc... 13 mets all under 2 cm lets pray thats what it reads when i do them <3
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Amanda R :) from California - Dx 2009
Hi Amanda
We are so sorry that your news was that it was ASPS. I was thinking that
In addition to the bone scans you will need the MRI of your head brain area.
Have your doctors find that open MRI for you.
Have you had your first bone scan yet?
Thanks so much for mustering up the courage to tell us all .
We can ONLY imagine how hard it was to be so brave.
Love
Debbie
We are so sorry that your news was that it was ASPS. I was thinking that
In addition to the bone scans you will need the MRI of your head brain area.
Have your doctors find that open MRI for you.
Have you had your first bone scan yet?
Thanks so much for mustering up the courage to tell us all .
We can ONLY imagine how hard it was to be so brave.
Love
Debbie
Debbie
Re: Amanda R :) from California - Dx 2009
Hello
They have done CT to see what's there in my body...
i am not sure still what the difference is between bone scan an ct but i shall find out soon,,,
Brain must be done an either they will have to put me under or we stay with CT's of the brain...
we did a CT brain an they saw nothing but in that area the jaw is also visible an why the hell they didn't se this i have no idea an i am mad
think today i will call Mink its a scan place an see if they can from this day fwd do all my scans ...
*hugs an hope to all*
They have done CT to see what's there in my body...
i am not sure still what the difference is between bone scan an ct but i shall find out soon,,,
Brain must be done an either they will have to put me under or we stay with CT's of the brain...
we did a CT brain an they saw nothing but in that area the jaw is also visible an why the hell they didn't se this i have no idea an i am mad
think today i will call Mink its a scan place an see if they can from this day fwd do all my scans ...
*hugs an hope to all*
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Amanda R :) from California - Dx 2009
Ok, here is the open MRI place i will go to for brain
It is in 3D an i wont be using contrast
http://www.westwoodopenmri.com/technology.html
I will try an get legs done there also in 3D
CT scan i will do at Mink and bring disks to Cedars my onc.... the fast that they missed this tumor on my jaw raises questions an i want no questions now just monitoring this and action...
Let me know what you all think... these should also show bone so i wont have to also try and get that covered with bone scans and an injection for that bone scan i may not be able to have any how :/
It is in 3D an i wont be using contrast
http://www.westwoodopenmri.com/technology.html
I will try an get legs done there also in 3D
CT scan i will do at Mink and bring disks to Cedars my onc.... the fast that they missed this tumor on my jaw raises questions an i want no questions now just monitoring this and action...
Let me know what you all think... these should also show bone so i wont have to also try and get that covered with bone scans and an injection for that bone scan i may not be able to have any how :/
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Amanda R :) from California - Dx 2009
This open MRI sounds interesting, do they do a full body MRI? That could replace a full body bone scan (I guess). About the contrast - they won't be using contrast because you asked them not to or this technology does not need a contrast?
Olga
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Dear Amanda,
Thank you for courageously finding the emotional and physical strength to share the difficult news about the ASPS diagnosis of your jaw bone tumor. As heartbroken as I am about the confirmation of this diagnosis, and as much as I was holding VERY tight to Hope that it was just a benign lesion, I am not surprised by the diagnosis since I knew that ASPS unfortunately can and does metastasize to the jaw. I am grateful that the tumor was able to be successfully resected with good margins and that you had very competent surgeons. I am so glad that you are now feeling better and back to looking like your beautiful self with your delightful sense of humor and invincible positive attitude intact after all of the pain and heartache that you have been through the past several months. I agree with Olga that it will be very important to get a brain MRI, and please don't just settle for a brain CT which is NOT adequate! Hopefully the open brain MRI will help to alleviate/resolve your claustrophobia issues and make it possible for you to have the critically important scan. I share your deep frustration and anger about the radiologists/oncologists inexplicably/inexcusably missing the jaw met in your brain and head CT, but sadly our experience has shown that these mistakes happen since the doctors are human. However, I feel that since they have human Lives in their hands there is no room and absolutely no excuse for mistakes!! It may be as in Brittany's case where her clearly visible spinal met was inexcusably not noted by the radiologist in reviewing her chest CT because he said "the scan request was to look for mets and lung met growth in her lungs and not elsewhere in her body..." Perhaps this is the unacceptable excuse of your radiologist that the scan request was just for your brain and head area and not the jaw! Not that it will change the outcome, but I encourage you to insist on a personal review of the scans with a different radiologist to determine for yourself if the jaw met is visible, and then you can hold the radiologist accountable for it not having been mentioned in the report so another patient doesn't suffer from the same kind of mistake.
Take good care of yourself dear Amanda, keep feeling better each day, stay strong, let Hope lead you through each day, and keep in touch with the Board as you are able.
Holding you very close in my heart and most caring thoughts and reaching out to share gentle hugs, healing wishes, warm friendship, much love, and continued Hope,
Bonni
Thank you for courageously finding the emotional and physical strength to share the difficult news about the ASPS diagnosis of your jaw bone tumor. As heartbroken as I am about the confirmation of this diagnosis, and as much as I was holding VERY tight to Hope that it was just a benign lesion, I am not surprised by the diagnosis since I knew that ASPS unfortunately can and does metastasize to the jaw. I am grateful that the tumor was able to be successfully resected with good margins and that you had very competent surgeons. I am so glad that you are now feeling better and back to looking like your beautiful self with your delightful sense of humor and invincible positive attitude intact after all of the pain and heartache that you have been through the past several months. I agree with Olga that it will be very important to get a brain MRI, and please don't just settle for a brain CT which is NOT adequate! Hopefully the open brain MRI will help to alleviate/resolve your claustrophobia issues and make it possible for you to have the critically important scan. I share your deep frustration and anger about the radiologists/oncologists inexplicably/inexcusably missing the jaw met in your brain and head CT, but sadly our experience has shown that these mistakes happen since the doctors are human. However, I feel that since they have human Lives in their hands there is no room and absolutely no excuse for mistakes!! It may be as in Brittany's case where her clearly visible spinal met was inexcusably not noted by the radiologist in reviewing her chest CT because he said "the scan request was to look for mets and lung met growth in her lungs and not elsewhere in her body..." Perhaps this is the unacceptable excuse of your radiologist that the scan request was just for your brain and head area and not the jaw! Not that it will change the outcome, but I encourage you to insist on a personal review of the scans with a different radiologist to determine for yourself if the jaw met is visible, and then you can hold the radiologist accountable for it not having been mentioned in the report so another patient doesn't suffer from the same kind of mistake.
Take good care of yourself dear Amanda, keep feeling better each day, stay strong, let Hope lead you through each day, and keep in touch with the Board as you are able.
Holding you very close in my heart and most caring thoughts and reaching out to share gentle hugs, healing wishes, warm friendship, much love, and continued Hope,
Bonni
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Hello again Amanda
I Hope that this finds you having a good and relaxing weekend. I am wondering what the size of the jaw bone met was, and why it took them so long post-op to determine that it is ASPS? When is your chest CT scheduled? I will look forward to your next update and in the meantime take care and get plenty of rest and relaxation while your body and soul continue to heal from all that they have been through.
With more hugs, special caring thoughts, healing wishes, love, and continued Hope,
Bonni
I Hope that this finds you having a good and relaxing weekend. I am wondering what the size of the jaw bone met was, and why it took them so long post-op to determine that it is ASPS? When is your chest CT scheduled? I will look forward to your next update and in the meantime take care and get plenty of rest and relaxation while your body and soul continue to heal from all that they have been through.
With more hugs, special caring thoughts, healing wishes, love, and continued Hope,
Bonni
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Todd's mom
- New Member
- Posts: 12
- Joined: Mon Aug 19, 2013 3:27 pm
Re: Amanda R :) from California - Dx 2009
Amanda,
I am so sorry to hear of the ASPS diagnosis in your jaw!!! I sincerely wish you the best and am thinking about you. I liked the story of the doc hitting on you, it was very cute
Sincerely,
Cheryl (Todd's mom)
I am so sorry to hear of the ASPS diagnosis in your jaw!!! I sincerely wish you the best and am thinking about you. I liked the story of the doc hitting on you, it was very cute
Sincerely,
Cheryl (Todd's mom)
Re: Amanda R :) from California - Dx 2009
Hi Amanda, So sorry about the jaw ASPS met 
Stay strong!! Keeping you in my thoughts~
Stay strong!! Keeping you in my thoughts~
Re: Amanda R :) from California - Dx 2009
Hello
I will be seeing Dr Forscher at Cedars thursday an we will be talking and getting back on the ball with scans an planning for my two lung surgeries...
Wouldnt it be awesome if the ten hours i was under in my jaw surgery it friend the lung mets lol
I remember someone here saying that the anesthesia at times may hurt the mets... POOR mets ><
Anyhow, I will post back soon an let you know whats happening
I am going on an overnight camping trip an i am loving spring and the weather here in california the last few days!
Love and hugs to all!
I will be seeing Dr Forscher at Cedars thursday an we will be talking and getting back on the ball with scans an planning for my two lung surgeries...
Wouldnt it be awesome if the ten hours i was under in my jaw surgery it friend the lung mets
lolI remember someone here saying that the anesthesia at times may hurt the mets... POOR mets ><
Anyhow, I will post back soon an let you know whats happening
I am going on an overnight camping trip an i am loving spring and the weather here in california the last few days!
Love and hugs to all!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Dear Amanda,
Thank you for your thoughtful update. My special thoughts and best wishes will be with you for a positive and productive meeting with Dr. Forscher on Thursday. It is SO good to hear you sounding more like yourself with your delightful sense of humor in tact and Living and enjoying Life again
Happy Springtime hugs and joy, special caring thoughts, healing wishes, and continued Hope,
Bonni
Thank you for your thoughtful update. My special thoughts and best wishes will be with you for a positive and productive meeting with Dr. Forscher on Thursday. It is SO good to hear you sounding more like yourself with your delightful sense of humor in tact and Living and enjoying Life again
Happy Springtime hugs and joy, special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
I am upset so please excuse this... But i want to know why i am alive and we are losing children!
I am glad i am here but what is the difference? We need to find out...
Is it hormones??? Do we need to block them to save our babies?? What is it!!
We can't lose any more children!!(( I look in the lists i see more lil ones then adults.. why is this? Someone please lets start compiling data somehow an find out... i will help in any ways i can...
No names will be in this it will be for our families an any ASPS patient that wants to see it... I dont want my name listed an i will also not let anyone sles name be in this ..
If we had this then a patient or family can look an see how many people did the treatments an how they worked for them.. Let me know what you all think...
As for me i have no idea wth is up with my Onc an he keeps ordering scans weird.. i think it is his office staff so i will have my regular Dr order them an get them done on my own...
Love to all but my frustration is reasonable an this data we have ourselves. If we need a program to do this i will pay for it an we all can use it for many things here. Let me know <3 xox <3
I am glad i am here but what is the difference? We need to find out...
Is it hormones??? Do we need to block them to save our babies?? What is it!!
We can't lose any more children!!
(( I look in the lists i see more lil ones then adults.. why is this? Someone please lets start compiling data somehow an find out... i will help in any ways i can... No names will be in this it will be for our families an any ASPS patient that wants to see it... I dont want my name listed an i will also not let anyone sles name be in this ..
If we had this then a patient or family can look an see how many people did the treatments an how they worked for them.. Let me know what you all think...
As for me i have no idea wth is up with my Onc an he keeps ordering scans weird.. i think it is his office staff so i will have my regular Dr order them an get them done on my own...
Love to all but my frustration is reasonable an this data we have ourselves. If we need a program to do this i will pay for it an we all can use it for many things here. Let me know <3 xox <3
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Amanda R :) from California - Dx 2009
Hi AmandaRe: Amanda R
by Amanda » Mon May 12, 2014 9:12 am
I am upset so please excuse this... But i want to know why i am alive and we are losing children!
I am glad i am here but what is the difference? We need to find out...
Is it hormones??? Do we need to block them to save our babies?? What is it!!
We can't lose any more children!! (( I look in the lists i see more lil ones then adults.. why is this? Someone please lets start compiling data somehow an find out... i will help in any ways i can...
I sectioned a quote from your message because I was wondering what prompted you to be concerned ?
Yes there really appears to be a lot more younger kids being diagnosed
The reason you are here is to advocate for their cause. To cure ASPS . Don't you believe for one minute that you shouldn't be here!
We as patients and as doctors have to figure out how to control it and then how to cure it.
Someone out there has to be compiling info and making sense of it all on our behalf .By all of us sharing information we can't help but be closer to saying 'no more alveolar soft part sarcoma in my life time'.
Take care
Love
Debbie
Debbie
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Dear Amanda,
Happy belated Mother's Day I Hope that it was a beautiful, relaxing, and pampered day for you shared together with your dear son and family.
I agree with, and echo Debbie's comments, and I deeply share your immense anger and anguish over the devastating ASPS diagnosis and tragic loss of so many precious young Lives. I agree that a compilation of anecdotal diagnosis and treatment information and data would be very helpful in fighting and managing this extremely rare and poorly understood disese, but unfortunately I have found throughout our 13 year ASPS journey, most ASPS patients/family members inexplicably don't actively partiicate in sharing and updating their information, even anonymously if they desire, despite my and several other Board members repeated pleas and urging for them to do so. Therefore a compilation of data would be based on information provided by the relatively few and limited number of us who actually do participate and share information on this Board and with the ASPS Community. I welcome any suggestions and ideas from anyone/everyone as to how we can better encourage and generate more active information sharing and Board participation since I know from 13 years of personal experience that shared information is truly one of our strongest weapons in fighting this very challenging disease. We cannot do it alone, but there is strength in numbers and we need EVERYONE'S help and active participation!!
I am so sorry that you are having so many problems getting your scans correctly scheduled, but I Hope that can be resolved as soon as possible since having appropriate, adequate, and regular scans is so critically important.
Take care dear Amanda and keep in touch as you are able.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
Happy belated Mother's Day
I Hope that it was a beautiful, relaxing, and pampered day for you shared together with your dear son and family.I agree with, and echo Debbie's comments, and I deeply share your immense anger and anguish over the devastating ASPS diagnosis and tragic loss of so many precious young Lives. I agree that a compilation of anecdotal diagnosis and treatment information and data would be very helpful in fighting and managing this extremely rare and poorly understood disese, but unfortunately I have found throughout our 13 year ASPS journey, most ASPS patients/family members inexplicably don't actively partiicate in sharing and updating their information, even anonymously if they desire, despite my and several other Board members repeated pleas and urging for them to do so. Therefore a compilation of data would be based on information provided by the relatively few and limited number of us who actually do participate and share information on this Board and with the ASPS Community. I welcome any suggestions and ideas from anyone/everyone as to how we can better encourage and generate more active information sharing and Board participation since I know from 13 years of personal experience that shared information is truly one of our strongest weapons in fighting this very challenging disease. We cannot do it alone, but there is strength in numbers and we need EVERYONE'S help and active participation!!
I am so sorry that you are having so many problems getting your scans correctly scheduled, but I Hope that can be resolved as soon as possible since having appropriate, adequate, and regular scans is so critically important.
Take care dear Amanda and keep in touch as you are able.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni