Amanda, thanks for the update! I second Bonni question if you also had any brain and bone scans recently? Esp. the bone scan since you had a history of the bone met in the rib.
I would also start to evaluating the possibility of the cryoablation for the largest met (s), because they are in the best size for it and since they grow slowly, you can use it to fix couple of them (I hope that your insurance covers it). Ivan's ablation doc from Vancouver also used to work part time at the Ronald Reagan UCLA Medical Center
( this is his contact info there but not verified recently:
757 Westwood Boulevard Suite 3-2125
Los Angeles, CA 90095
Website
Tel: 310-267-8751, Ronetta Jackson at 310-481-7545 for appointments
Fax: 310-267-2694
but there is also Dr.Suh that is a very experienced ablation doc there...
Amanda R :) from California - Dx 2009 - RIP March 2015
Re: Amanda R :) from California - Dx 2009
Hello 
I cant MRI i freak out
I had a brain CT six months ago and they will do that every year.. I hope that will work i am so bad that even drugging me has not worked
They have not offered a bone scan they said that it would show up in the CT's... i got pelvis, abdom... neck ... chest *I asked for neck* and head all done six months ago... I will get them, all done again in six months again with the chest CT... Its a head to rump CT day
I was thinking the same thing about having the 9mm one removed but he said it has never changed sence i was diagnosed and he questions if it is ASPS because a few he took out werent ASPS :/
I cant MRI i freak out
I had a brain CT six months ago and they will do that every year.. I hope that will work i am so bad that even drugging me has not worked They have not offered a bone scan they said that it would show up in the CT's... i got pelvis, abdom... neck ... chest *I asked for neck* and head all done six months ago... I will get them, all done again in six months again with the chest CT... Its a head to rump CT day
I was thinking the same thing about having the 9mm one removed but he said it has never changed sence i was diagnosed and he questions if it is ASPS because a few he took out werent ASPS :/
“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
-
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
Hi Amanda,
Thank you for the additional shared information. It sounds like you are being very thorough and vigilant with your regular monitoring scans which is so important in fighting this unpredictable disease. My only concern would be that a brain CT is unable to show brain mets at their smallest possible visible size as a brain MRI can do. When Brittany was first diagnosed in Seattle, we immediately began researching and called Dr. Benjamin at MD Anderson in Houston for advice as he was considered one of the best sarcoma doctors in the country. He very strongly emphasized to us that it was essential that Brittany have a brain MRI , and NOT just a brain CT which he said would be inadequate in showing any small brain mets if they were present. Relievingly, her brain MRI didn't show any brain mets at that time. Two years later in the fall of 2003 when Brittany began experiencing some concerning headaches, we requested a brain MRI, but Brittany's then oncologist told us that a brain CT would be adequate. We reluctantly accepted his opinion, and Brittany then had a brain CT which deceivingly didn't show any mets. Brittany's oncolgist attributed her headaches to a benign cause, and we naiively accepted his diagnosis. A year later, Brittany's headaches were increasing in frequency and severity, and we then insisted on a brain MRI which devastatingly showed two relatively large brain mets which heartbreakingly did not respond to the Gamma Knife she underwent because they were too large for the Gamma Knife to destroy. After six months of post Gamma Knife brain swelling and steroid Hell, Brittany underwent two brain tumor resections which sadly left her with no peripheral vision. Had the brain mets been found at a smaller size when Brittany first began complaining of headaches, Gamma Knife would almost certainly have been successful as it was with Brittany's two subsequent Gamma Knife procedures a few years later. I am so sorry for your severe claustraphobia which prevents you from being able to undergo a brain MRI. That certainly creates a real obstacle and dilemma, but I have recently read about a new kind of open MRI machine that is not enclosed which may be a possible alternative for you.
We have learned the hard way that even when the lung mets are stable, mets may appear in other areas of the body as when we thought that Brittany's lung mets were stable, and her six month chest CT inadvertently showed a met on her liver which would probably not have otherwise been diagnosed until it became symptomatic since only lung monitoring chest CT's were being done on her at that time. Vigilant head to toe routine scanning is critically important as this insidious disease can show up anywhere in the body even when the rest of the mets may appear stable. I am certainly not telling you this to frighten you or others on this Board, but just to share the benefit of our hard earned experience and make people aware of the necessity of thorough scans to prevent undetected mets from growing too large to be successfully resected or treated.
With special caring thoughts, very best wishes, and continued Hope,
Bonni
Thank you for the additional shared information. It sounds like you are being very thorough and vigilant with your regular monitoring scans which is so important in fighting this unpredictable disease. My only concern would be that a brain CT is unable to show brain mets at their smallest possible visible size as a brain MRI can do. When Brittany was first diagnosed in Seattle, we immediately began researching and called Dr. Benjamin at MD Anderson in Houston for advice as he was considered one of the best sarcoma doctors in the country. He very strongly emphasized to us that it was essential that Brittany have a brain MRI , and NOT just a brain CT which he said would be inadequate in showing any small brain mets if they were present. Relievingly, her brain MRI didn't show any brain mets at that time. Two years later in the fall of 2003 when Brittany began experiencing some concerning headaches, we requested a brain MRI, but Brittany's then oncologist told us that a brain CT would be adequate. We reluctantly accepted his opinion, and Brittany then had a brain CT which deceivingly didn't show any mets. Brittany's oncolgist attributed her headaches to a benign cause, and we naiively accepted his diagnosis. A year later, Brittany's headaches were increasing in frequency and severity, and we then insisted on a brain MRI which devastatingly showed two relatively large brain mets which heartbreakingly did not respond to the Gamma Knife she underwent because they were too large for the Gamma Knife to destroy. After six months of post Gamma Knife brain swelling and steroid Hell, Brittany underwent two brain tumor resections which sadly left her with no peripheral vision. Had the brain mets been found at a smaller size when Brittany first began complaining of headaches, Gamma Knife would almost certainly have been successful as it was with Brittany's two subsequent Gamma Knife procedures a few years later. I am so sorry for your severe claustraphobia which prevents you from being able to undergo a brain MRI. That certainly creates a real obstacle and dilemma, but I have recently read about a new kind of open MRI machine that is not enclosed which may be a possible alternative for you.
We have learned the hard way that even when the lung mets are stable, mets may appear in other areas of the body as when we thought that Brittany's lung mets were stable, and her six month chest CT inadvertently showed a met on her liver which would probably not have otherwise been diagnosed until it became symptomatic since only lung monitoring chest CT's were being done on her at that time. Vigilant head to toe routine scanning is critically important as this insidious disease can show up anywhere in the body even when the rest of the mets may appear stable. I am certainly not telling you this to frighten you or others on this Board, but just to share the benefit of our hard earned experience and make people aware of the necessity of thorough scans to prevent undetected mets from growing too large to be successfully resected or treated.
With special caring thoughts, very best wishes, and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
Amanda, did I get you right that your doc is saying that you had 9 mm met from the Dx time few years ago? I was always under the impression that you had something smaller there. I would request the first base line CT scan done after you was Dx back then to be reviewed side by side with the latest one so see if there are any changes. Regardless that he removed few ones that were no ASPS - ask him what size were the benign nodules, it is very important, as the probability that the smaller undetermined nodules (less than 2 mm) are more likely to be the benign formations than the nodule more than 5 mm (and it is really rare for 9 mm being benign, it happens but mostly if you had a surgery in that area it might be a scar tissue after the surgery).
Olga
Re: Amanda R :) from California - Dx 2009
Bonni,
Thank you to Let us know you so heartbreaking story. Thank you let us not Fall into a rut !
Thank you to Let us know you so heartbreaking story. Thank you let us not Fall into a rut !
Re: Amanda R :) from California - Dx 2009
Hello
It may take about a month or two to get an appointment but i will be starting to see these two doctors... I will be asking them to fallow me thru life an that if they can put me under for an MRI that would be great!
I have never met Dr Black but Jason my boyfriend said he is realy nice! Dr Chu is a love and bright and positive and kinda what everyone would want in a doctor... They are the ones that did jasons surgery an it went great!
http://www.cedars-sinai.edu/Bios---Phys ... hu-MD.aspx
http://www.cedars-sinai.edu/Bios---Phys ... ck-MD.aspx
What is the difference with a bone scan and a CT? I cant do contrast it makes me sick now btw :/
It may take about a month or two to get an appointment but i will be starting to see these two doctors... I will be asking them to fallow me thru life an that if they can put me under for an MRI that would be great!
I have never met Dr Black but Jason my boyfriend said he is realy nice! Dr Chu is a love and bright and positive and kinda what everyone would want in a doctor... They are the ones that did jasons surgery an it went great!
http://www.cedars-sinai.edu/Bios---Phys ... hu-MD.aspx
http://www.cedars-sinai.edu/Bios---Phys ... ck-MD.aspx
What is the difference with a bone scan and a CT? I cant do contrast it makes me sick now btw :/
“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 = (
I am not real happy so sorry I am not all smiles as normal.. I was told that because I do not have active tumors an no symptoms that there was no reason to do yearly brain MRI’s and that it couldn’t be justified feel like an idiot for even going an asking for yearly MRI's. He said he would do this one I have never had one but after that he couldn’t. I said I am scared can’t we do it every year ...I left the office in tears. I felt like I was some drug addict begging for a drug …
Isn’t there anything set up or posted for doctors as in guidelines for the proven need for yearly brain MRI’s for sarcoma?
I am not real happy so sorry I am not all smiles as normal.. I was told that because I do not have active tumors an no symptoms that there was no reason to do yearly brain MRI’s and that it couldn’t be justified feel like an idiot for even going an asking for yearly MRI's. He said he would do this one I have never had one but after that he couldn’t. I said I am scared can’t we do it every year ...I left the office in tears. I felt like I was some drug addict begging for a drug …
Isn’t there anything set up or posted for doctors as in guidelines for the proven need for yearly brain MRI’s for sarcoma?
“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
There are some articles:
Brain metastases in musculoskeletal sarcomas.
http://www.ncbi.nlm.nih.gov/pubmed/10379335
"Patients with alveolar soft part sarcoma, Ewing's sarcoma, rhabdomyosarcoma and pulmonary metastases have a high risk of brain metastasis."
Brain metastases in musculoskeletal sarcomas.
http://www.ncbi.nlm.nih.gov/pubmed/10379335
"Patients with alveolar soft part sarcoma, Ewing's sarcoma, rhabdomyosarcoma and pulmonary metastases have a high risk of brain metastasis."
Olga
-
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,
I am so sorry that your doctor caused you so much emotional anguish, and I am extremely upset and angered by his seemingly ignorant and inexcusable attitude regarding the documented critical importance of ASPS patients having brain MRI's at least once a year! I strongly recommend that you immediately get a different, more informed, and more compassionate doctor who is as knowledgeable as possible about ASPS. I think that I have told you that when Brittany was first diagnosed with ASPS in Seattle and we called to consult with Dr. Benjamin who is a nationally known and hightly respected and experienced sarcoma specialist at MD Anderson in Houston, Texas, the first thing that he said to us was to be sure to get a brain MRI immediately, and not just a brain CT because he said that brain CT's are inadequate to diagnose ASPS brain mets at the smallest and most treatable size. Thankfully, the brain MRI showed that Brittany did not have any brain mets at that time, so we just continued to monitor her disease with chest CT scans every three to six months. Even though Brittany's chest CT's were relatively stable, she began to experience symptomatic headaches three years after her initial ASPS diagnosis and a brain MRI devastatingly showed two brain mets which, because of lack of regular brain MRI monitoring, had grown too large to successfuly respond to Gamma Knife. Because of the failed Gamma Knife response, Brittany ultimately had to undergo surgery to remove the tumors, and the surgery to remove the tumor in her parietal lobe heartbreakingly caused her to permanently lose her peripheral vision. Consequently, she now has brain MRI's every three months to ensure that any new brain mets are found at the smallest size. Almost four years ago, even though she was not having any headache symptoms, three new brain mets were found during the regular three month brain MRI. Thankfully, they were found at a very small size and were able to be successfully treated and destroyed with Gamma Knife along with one other much smaller met which only showed up in a more specialized brain MRI that can only be done when the immobilizing Gamma Knife frame is secured to the patient's head. Your doctor should certainly know that once brain mets become symptomatic causing headaches and numbness, they are much more difficult to treat and are usually too large to respond successfully to Gamma Knife. I don't want to alarm or offend you or anyone else on this Board, but everyone fighting this unpredictable disease needs to know and understand that having no active tumors or symptoms unfortunately does not mean or guarantee that there may not be mets elsewhere in your body, as we have heartbeakingly learned through the past ten and a half years of Brittany's challenging ASPS battle. I want everyone to be able to learn and benefit from our hard earned experience, and it is certainly better to be safe than sorry because of a lack of knowledge and/or inadequate scanning.
ASPS PATIENTS SHOULD NEVER WAIT UNTIL THEY HAVE SYMPTOMS!! They need to be very pro-active and vigilant in having regular scans. Yearly brain MRI's and bone scans are probably adequate if you don't have a history of brain or bone mets, but if you have had brain or bone mets, more regular scanning is critically important. An ASPS patient doesn't need to, and shouldn't have to "justify" having regular scans to their doctor! Scans are essential and vital weapons in fighting this very challenging battle. We can't just put our heads in the sand and pretend/Hope that it will all go away without actively fighting it with every possible resource there is available. This includes relentless research, active networking and communicating with other ASPS patients, information sharing, and being as pro-active and knowledgeable as possible.
My great Hope is that your doctor is right ,that your disease is completely stable, and that you don't have any brain mets dear Amanda, but you certainly need confirmation of that through regular scans including annual brain MRI's, and if he refuses to provide these for you, I think that you need to find a new doctor who will. Take care and keep the Board updated as you are able.
Sharing your frustration and concern, and sending special caring thoughts, hugs, best wishes,and continued Hope,
Bonni
I am so sorry that your doctor caused you so much emotional anguish, and I am extremely upset and angered by his seemingly ignorant and inexcusable attitude regarding the documented critical importance of ASPS patients having brain MRI's at least once a year! I strongly recommend that you immediately get a different, more informed, and more compassionate doctor who is as knowledgeable as possible about ASPS. I think that I have told you that when Brittany was first diagnosed with ASPS in Seattle and we called to consult with Dr. Benjamin who is a nationally known and hightly respected and experienced sarcoma specialist at MD Anderson in Houston, Texas, the first thing that he said to us was to be sure to get a brain MRI immediately, and not just a brain CT because he said that brain CT's are inadequate to diagnose ASPS brain mets at the smallest and most treatable size. Thankfully, the brain MRI showed that Brittany did not have any brain mets at that time, so we just continued to monitor her disease with chest CT scans every three to six months. Even though Brittany's chest CT's were relatively stable, she began to experience symptomatic headaches three years after her initial ASPS diagnosis and a brain MRI devastatingly showed two brain mets which, because of lack of regular brain MRI monitoring, had grown too large to successfuly respond to Gamma Knife. Because of the failed Gamma Knife response, Brittany ultimately had to undergo surgery to remove the tumors, and the surgery to remove the tumor in her parietal lobe heartbreakingly caused her to permanently lose her peripheral vision. Consequently, she now has brain MRI's every three months to ensure that any new brain mets are found at the smallest size. Almost four years ago, even though she was not having any headache symptoms, three new brain mets were found during the regular three month brain MRI. Thankfully, they were found at a very small size and were able to be successfully treated and destroyed with Gamma Knife along with one other much smaller met which only showed up in a more specialized brain MRI that can only be done when the immobilizing Gamma Knife frame is secured to the patient's head. Your doctor should certainly know that once brain mets become symptomatic causing headaches and numbness, they are much more difficult to treat and are usually too large to respond successfully to Gamma Knife. I don't want to alarm or offend you or anyone else on this Board, but everyone fighting this unpredictable disease needs to know and understand that having no active tumors or symptoms unfortunately does not mean or guarantee that there may not be mets elsewhere in your body, as we have heartbeakingly learned through the past ten and a half years of Brittany's challenging ASPS battle. I want everyone to be able to learn and benefit from our hard earned experience, and it is certainly better to be safe than sorry because of a lack of knowledge and/or inadequate scanning.
ASPS PATIENTS SHOULD NEVER WAIT UNTIL THEY HAVE SYMPTOMS!! They need to be very pro-active and vigilant in having regular scans. Yearly brain MRI's and bone scans are probably adequate if you don't have a history of brain or bone mets, but if you have had brain or bone mets, more regular scanning is critically important. An ASPS patient doesn't need to, and shouldn't have to "justify" having regular scans to their doctor! Scans are essential and vital weapons in fighting this very challenging battle. We can't just put our heads in the sand and pretend/Hope that it will all go away without actively fighting it with every possible resource there is available. This includes relentless research, active networking and communicating with other ASPS patients, information sharing, and being as pro-active and knowledgeable as possible.
My great Hope is that your doctor is right ,that your disease is completely stable, and that you don't have any brain mets dear Amanda, but you certainly need confirmation of that through regular scans including annual brain MRI's, and if he refuses to provide these for you, I think that you need to find a new doctor who will. Take care and keep the Board updated as you are able.
Sharing your frustration and concern, and sending special caring thoughts, hugs, best wishes,and continued Hope,
Bonni
Last edited by Bonni Hess on Mon Mar 26, 2012 3:03 pm, edited 1 time in total.
Re: Amanda R :) from California - Dx 2009
Amanda - I think that Bonni gives you some very good advice - you can request the second opinion on the brain scanning modality used from MDACC from Dr.Benjamin if just printing our Bonni's post and giving it to your Drs to read would not change their minds (or may be Bonni is willing to privately share the name of Brittany's oncologist so your oncologist can call him to verify the significant advantage that was received by Brittany when her latest brain mets were found during the routine scanning and not when symptomatic allowing them to be treated at the smaller size using Gamma Knife in the most optimal way).
Olga
-
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 and Olga,
I would of course be more than happy to share any information that may be helpful. The name of Brittany's radiation oncologist who monitors the status of her brain mets with regular brain MRI's and has performed her three Gamma Knife treatments is Dr. Jason Rockhill at the University of Washington in Seattle.
With special caring thoughts and continued Hope,
Bonni
I would of course be more than happy to share any information that may be helpful. The name of Brittany's radiation oncologist who monitors the status of her brain mets with regular brain MRI's and has performed her three Gamma Knife treatments is Dr. Jason Rockhill at the University of Washington in Seattle.
With special caring thoughts and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
Hello
Thank you. so much and yes i am going to look for a doctor that will do them an i think the motion picture doctor will do this if i show him the information posted! Thank you Bonnie <3
Olga ty an i am going to use that
He did say he would do one because he dint like that i had not had one before this... But, i wanted him to fallow me he is very good and when he said he couldnt keep doing yearly brain MRI's with out symptoms it crushed me! He is a very nice man i guess like many not many deal with ASPS...
Ok i will post back wish me luck!
Thank you. so much and yes i am going to look for a doctor that will do them an i think the motion picture doctor will do this if i show him the information posted! Thank you Bonnie <3
Olga ty an i am going to use that
He did say he would do one because he dint like that i had not had one before this... But, i wanted him to fallow me he is very good and when he said he couldnt keep doing yearly brain MRI's with out symptoms it crushed me! He is a very nice man i guess like many not many deal with ASPS...
Ok i will post back wish me luck!
“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
Hello everyone!
I have been trying to clear my head lately an i am sorry i have not posted... Every time i go for scans i feel as if i am re diagnosed and it is horrable!
I lost a person also that meant the world to me like a sister an to be honest i shyed away from everyone and every thing because of it... I miss her so much and I dont think there will ever be a time that when i think of her my eyes still fill with tears! Cancer picks the best in the human race to attack!
Anyhow, three weeks ago i went to all three of my Oncs and they said the same things are there and they are very happy to tell me that i am stable with no new mets or change.
Scans were abdominal, pelvis, lungs..
All were clear but my lungs still have the same things same size no changes but scan picture changes 1 to 2 mm up and down in size.
MRI leg...
Clear and Dr Brian was very happy that it has been so many years with no reoccurrence. I am having pain from the3 33 radiation treatments and YES i wish to this day i would have listened to Olga hehe
I am happy about this but questioned the mm changes up and down and expressed the fears it gave me and they said that a 1 or 2 mm back and forth is scans...
After talking to all my Oncs an asking my 1000 questions it is in my opinion and there opinions that it was highly probable that there are two types of ASPS. An that with mine and at stage 4 with the small amount and size that chemo is NOT recommended! If it was NOT for this forum and the posters in this forum i would have done chemo thre years ago and i would not be posting happy news. i would have done chemo and ruined my immune system and been in deep water!
My chest surgen Dr Foshag was the last person an i was in fear since the man owns my lungs lol He said i was now at the *almost* three year mark from surgery an he said at the time of the surgery i had the same amount an size at that time. I asked about the NED in my lungs and it was because it was right after surgery i guess it always looks like that after surgery from swelling *shrugs* and it makes sense also because they were bilateral and it was NED how would that have happened....
They are saying that after my next six month scan they will be moving me to a year because they feel the CT's are going to harm me....
There are others that are stable for no reason with ASPS.. they are not posting nor reading on line about it any longer. But, they are out there
I have read a few posts asking about chemo and about ASPS... If your tumor load is small and there is little or no growth do NOT go to a chemo to try it out! It will end up in the long run **very** possible making a situation like mine into a different situation and harming you more! Though our Oncs love us any Onc that states they know is not the Onc you need to be seeing they dont know Read here what to do! Be armed with all you can read and teach your doctors what you have read...
Also, if you can remove the sarcoma thru surgery do that first! Do not do chemo!
If anyone needs any info and i do not post back soon enough please e mail me <3
My love to everyone new an old here!
I will try and check back soon!
xox
I have been trying to clear my head lately an i am sorry i have not posted... Every time i go for scans i feel as if i am re diagnosed and it is horrable!
I lost a person also that meant the world to me like a sister an to be honest i shyed away from everyone and every thing because of it... I miss her so much and I dont think there will ever be a time that when i think of her my eyes still fill with tears! Cancer picks the best in the human race to attack!
Anyhow, three weeks ago i went to all three of my Oncs and they said the same things are there and they are very happy to tell me that i am stable with no new mets or change.
Scans were abdominal, pelvis, lungs..
All were clear but my lungs still have the same things same size no changes but scan picture changes 1 to 2 mm up and down in size.
MRI leg...
Clear and Dr Brian was very happy that it has been so many years with no reoccurrence. I am having pain from the3 33 radiation treatments and YES i wish to this day i would have listened to Olga hehe
I am happy about this but questioned the mm changes up and down and expressed the fears it gave me and they said that a 1 or 2 mm back and forth is scans...
After talking to all my Oncs an asking my 1000 questions it is in my opinion and there opinions that it was highly probable that there are two types of ASPS. An that with mine and at stage 4 with the small amount and size that chemo is NOT recommended! If it was NOT for this forum and the posters in this forum i would have done chemo thre years ago and i would not be posting happy news. i would have done chemo and ruined my immune system and been in deep water!
My chest surgen Dr Foshag was the last person an i was in fear since the man owns my lungs lol He said i was now at the *almost* three year mark from surgery an he said at the time of the surgery i had the same amount an size at that time. I asked about the NED in my lungs and it was because it was right after surgery i guess it always looks like that after surgery from swelling *shrugs* and it makes sense also because they were bilateral and it was NED how would that have happened....
They are saying that after my next six month scan they will be moving me to a year because they feel the CT's are going to harm me....
There are others that are stable for no reason with ASPS.. they are not posting nor reading on line about it any longer. But, they are out there
I have read a few posts asking about chemo and about ASPS... If your tumor load is small and there is little or no growth do NOT go to a chemo to try it out! It will end up in the long run **very** possible making a situation like mine into a different situation and harming you more!
Though our Oncs love us any Onc that states they know is not the Onc you need to be seeing they dont know Read here what to do! Be armed with all you can read and teach your doctors what you have read... Also, if you can remove the sarcoma thru surgery do that first! Do not do chemo!
If anyone needs any info and i do not post back soon enough please e mail me <3
My love to everyone new an old here!
I will try and check back soon!
xox
“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
-
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,
It was so very good to hear from you and to hear the wonderful news that your most recent scan results showed continued stable disease with no new tumors! That is truly a great victory and I am celebrating this very good and encouraging news with you with greatest joy, and holding very tight to Hope that you will have long term sustained disease stability with NED. Based on your three years of stable disease and the valid concerns regarding the risks of radiation from CT scans, it seems that annual CT scans may be adequate, but I would still encourage you at some point to have a brain MRI and full body bone scan to ensure that there are no other mets based on our experience when Brittany's chest CT's were deceivingly stable, but she had developed a liver met which was only accidentally found when her chest CT showed the top portion of her liver, and she had three brain mets which were undiagnosed until she became symptomatic with headaches. MRI's do not pose the radiation risk that CT scans do, and brain MRI's are critically important in diagnosing any possible brain mets. It seems that too many doctors erroneously only monitor ASPS with periodic chest CT's to determine if there is any disease progression based on any new chest mets or growth of existing ones, while naiively ignoring the fact that lack of disease progression in the lungs does not necessarily mean that it is not growing in other areas of the body. Vigilance in monitoring all areas of the body is essential in managing this disease.
This disease is so unpredictable and it is difficult to determine why some patients like our precious Brittany heartbreakingly experience such aggressive disease progression with widely disseminated mets, while others like you are thankfully able to attain disease stability and NED without any kind of systemic treatment, but based on my personal observations and extensive research of the past eleven years I tend to agree with you and your oncologists that there may be two types of ASPS.
As you have noted, surgical or laser resection, ablation, or radiotherapy for new mets remains the best approach to treating ASPS as long as the tumor load is small and there is little or no growth of the tumors. However, if the disease becomes aggressive and/or widely disseminated with unresectable or unablatable mets as devastatingly occurred with Brittany three years ago, then a systemic treatment is necessary to try to stabilize the progression of the disease and shrink/destroy the multiple mets.
I am so sorry for all that you are going through with the tragic loss of your beloved friend, and my deepest shared sorrow and most caring thoughts are with you as you continue on your difficult grief journey. You are missed on this Board dear Amanda, and I Hope that you will be able to find your way back to participating on it more often when you are able. Take care my friend.
Reaching out to embrace you with special hugs, and sharing the great joy of your very good scan results with much happiness and continued Hope,
Bonni
It was so very good to hear from you and to hear the wonderful news that your most recent scan results showed continued stable disease with no new tumors!
That is truly a great victory and I am celebrating this very good and encouraging news with you with greatest joy, and holding very tight to Hope that you will have long term sustained disease stability with NED. Based on your three years of stable disease and the valid concerns regarding the risks of radiation from CT scans, it seems that annual CT scans may be adequate, but I would still encourage you at some point to have a brain MRI and full body bone scan to ensure that there are no other mets based on our experience when Brittany's chest CT's were deceivingly stable, but she had developed a liver met which was only accidentally found when her chest CT showed the top portion of her liver, and she had three brain mets which were undiagnosed until she became symptomatic with headaches. MRI's do not pose the radiation risk that CT scans do, and brain MRI's are critically important in diagnosing any possible brain mets. It seems that too many doctors erroneously only monitor ASPS with periodic chest CT's to determine if there is any disease progression based on any new chest mets or growth of existing ones, while naiively ignoring the fact that lack of disease progression in the lungs does not necessarily mean that it is not growing in other areas of the body. Vigilance in monitoring all areas of the body is essential in managing this disease.This disease is so unpredictable and it is difficult to determine why some patients like our precious Brittany heartbreakingly experience such aggressive disease progression with widely disseminated mets, while others like you are thankfully able to attain disease stability and NED without any kind of systemic treatment, but based on my personal observations and extensive research of the past eleven years I tend to agree with you and your oncologists that there may be two types of ASPS.
As you have noted, surgical or laser resection, ablation, or radiotherapy for new mets remains the best approach to treating ASPS as long as the tumor load is small and there is little or no growth of the tumors. However, if the disease becomes aggressive and/or widely disseminated with unresectable or unablatable mets as devastatingly occurred with Brittany three years ago, then a systemic treatment is necessary to try to stabilize the progression of the disease and shrink/destroy the multiple mets.
I am so sorry for all that you are going through with the tragic loss of your beloved friend, and my deepest shared sorrow and most caring thoughts are with you as you continue on your difficult grief journey. You are missed on this Board dear Amanda, and I Hope that you will be able to find your way back to participating on it more often when you are able. Take care my friend.
Reaching out to embrace you with special hugs, and sharing the great joy of your very good scan results with much happiness and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
Dear Amanda and Bonni,
First off, I am so glad to hear Amanda's good report and all the good reports about folks who have NED. I'm so thankful that NED status is possible with ASPS. You both mentioned the possibility of two types of ASPS. Please explain.
First off, I am so glad to hear Amanda's good report and all the good reports about folks who have NED. I'm so thankful that NED status is possible with ASPS. You both mentioned the possibility of two types of ASPS. Please explain.