Dear Trixi,
Regarding your question about the possibility that there may be two types of ASPS, I don't know if there is any conclusive data about this, but when the now defunct ASPS Immunotherapy Vaccine was being developed at MSK in 2004, we were told by the research team that only patients with one of the two types of ASPS would be accepted into the upcoming Clinical Trial. Since the research for the Vaccine was suddenly inexplicably abandoned before the Vaccine was put into Clinical Trial, we never learned anything more about the two types of ASPS that they were referring to, and frustratingly and inexcusably MSK has refused to respond to our repeated inquiries about the status of the Vaccine research for which we and others had raised and donated a significant amount of research funds.
Through Brittany's challenging eleven year ASPS journey and my extensive and devoted research, observations, and networking with other ASPS patients and their families, I have personally observed that some ASPS patients seem to have much less aggressive and disseminated disease with mets limited to the lungs, while others like Brittany have widely disseminated disease throughout their bodies. Based on these observations and the referral by MSK researchers to two types of ASPS, I have long suspected that there may be two different types, and have Hoped that more research will be done and published regarding this important issue as it could effect which type of treatment is most effective depending on which type of ASPS a patient has.
With special caring thoughts and continued Hope,
Bonni
Amanda R :) from California - Dx 2009 - RIP March 2015
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Hello again! 
I wanted to echo what Bonnie had posted in a reply to my update... If there is a small amount and it is seemly not growing do not do chemo in my opinion it can make it worse! If they think you are stable this can become idolent for years and years an no chemo...
BUT! Heartbreakingly because this cancer is so slow growing this takes months to find these things out an if your tumor load is large and it has spread beyond the lungs chemo can help some... Brittany an a few others are doing very well an are stable or the desease has slowed! I have also seen tragedy in patients with cancer that didn't act fast enough
You are your own savior all the others are helpers that act out your wishes and choices in your treatment... Please, educate and share and talk...
Read the survivors area hold onto the stories of survival! Compare yourself to the others there is no reason this canot just shut off in you also <3
I have spent years in this forum and talked to everyone an read the forums and everyone experiences over and over... No matter what step you are going to take please post in the forums an ask before you take treatment! Learn this cancer back and forth. Never take the easy way act fast and kill it or what of it you can as fast as possible! I had two massive surgeries in my leg and has four inches of my eighth rib removed an 33 radiation treatments to my leg within i think eight months! If i would not have posted in the forums and spoken with the members my situation would be in my opinion vastly different! I would have done chemo that now my oncs are saying no to... I would not have acted like a tornado on getting the things removed an i also wouldn't have had loving friends to help me thru it all an Ivan getting me out of bed and moving around an excersizing!
I wanted to echo what Bonnie had posted in a reply to my update... If there is a small amount and it is seemly not growing do not do chemo in my opinion it can make it worse! If they think you are stable this can become idolent for years and years an no chemo...
BUT! Heartbreakingly because this cancer is so slow growing this takes months to find these things out an if your tumor load is large and it has spread beyond the lungs chemo can help some... Brittany an a few others are doing very well an are stable or the desease has slowed! I have also seen tragedy in patients with cancer that didn't act fast enough
You are your own savior all the others are helpers that act out your wishes and choices in your treatment... Please, educate and share and talk...Read the survivors area hold onto the stories of survival! Compare yourself to the others there is no reason this canot just shut off in you also <3
I have spent years in this forum and talked to everyone an read the forums and everyone experiences over and over... No matter what step you are going to take please post in the forums an ask before you take treatment! Learn this cancer back and forth. Never take the easy way act fast and kill it or what of it you can as fast as possible! I had two massive surgeries in my leg and has four inches of my eighth rib removed an 33 radiation treatments to my leg within i think eight months! If i would not have posted in the forums and spoken with the members my situation would be in my opinion vastly different! I would have done chemo that now my oncs are saying no to... I would not have acted like a tornado on getting the things removed an i also wouldn't have had loving friends to help me thru it all an Ivan getting me out of bed and moving around an excersizing!
“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
Thank you for your explanation. I hate both types - if in fact there are two different types. And I hate that doctors do not put more effort into diagnosing. Just today I spoke to a friend whose 6 year old grandson has a lump in the back of his knee. The pediatrician is totally unconcerned ... "oh, he'll outgrow it, it's nothing"... The lump has been there for over a year, and the doctor never really examined it... just kind of looked at it. The boy's mom isn't concerned, because the doctor isn't concernd. I told my friend not to simply trust that doctor's hap-hazard non-diagnosis. Before my daughter, Patti, was diagnosed with ASPS I, too, would have probably simply taken the pediatrician at his word.... but not anymore. Not after reading the testimonies in this forum. I told my friend to please go and have that lump on her grandson's leg investigated. I feel like quite possibly my daughter could have survived if her ASPS had been detected and found earlier. She had an adhesion removal surgery last October (due to prior surgery) with tests and scans prior to that surgery, and she had a bad case of bronchitis in December, with several X-rays taken.... If the doctors last year saw anything unusual that could have pointed to Patti having ASPS, they simply "dismissed" or misdiagnosed it....... When she became ill with severe abdominal pain in mid March and was taken to the ER ... the doctor actually saw spots on her bones, but wasn't concerned, made some comment about "probably nothing to worry about".... Anyway... Sorry I vented. I'm just realizing more and more how little is known about ASPS and how much research and training of the medical community is necessary, esp. for ASPS !!
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Bonni Hess
- Senior Member
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- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Dear Trixi,
You are totally justified in your venting, and I so deeply share your great frustration and anger with the avoidable mistakes and misdiagnoses that are made by doctors in who we naiively put our faith and confidence. When Brittany's lump on her thigh first appeared and we went to our very experienced, knowledgeable, and trusted family doctor who is also a close family friend, he told us that the lump was probably just a "fatty tissue deposit" of which he had seen hundreds in his years of practice. He told us that he thought that we should just watch it to see if it continued to grow, but if it would make us feel better we could have an MRI. Needless to say, we opted for the MRI wanting to make sure that it wasn't anything more than a benign lump. Tragically, and much to the doctor's surprise and embarassment, the MRI showed that the lump was NOT benign, a biopsy was done which resulted in the devastating ASPS diagnosis, and thus our heartbreaking and very challenging eleven year ASPS journey began.
I would strongly encourage your friend to insist that an MRI be done of the lump on her grandson's leg, and if the pediatrician is unwilling to schedule it, then to find another pediatrician. As you have tragically learned, and as our experiences during the past eleven years of Brittany's difficult battle have shown us, doctors aren't always right, they CAN and DO make mistakes, and sometimes they nonchalantly, naiively, and irresponsibly dismiss things too easily. Even as very pro-active and involved as we are with Brittany's ASPS battle, and we always insist on personally reviewing the scans with the doctor and having copies of both the scans and the radiologist report, inxcusable mistakes were made by the radiologist and interim oncologist reviewing her scans when they inexplicably and irresponsibly failed to observe/record the presence of a very large and rapidly growing spinal tumor which finally became symptomatic, was threatening to cause her total paralysis, and resulted in two very dangerous, major, and debilitating spinal surgeries which have caused Brittany heartbreaking severe and chronic spinal pain for which the pain specialists and her spinal surgeon say there are heartbreakingly no treatment options or remedies at this time. When we requested to look at the scans with the interim oncologist, he told us that he didn't have time because he had another patient waiting, and that it wasn't necessary because the radiologist report said that the chest CT was stable with no new mets ( no mention was made in the report of the spinal tumor which was very visible to us when we were finally able to review the scans three months later when Brittany began experiencing spinal pain!). Unfortunately, our acceptance of the interim oncologist's refusal to show us the scans as well as naiively believing the conclusion of the radiologist report, nearly cost our precious daughter her Life, and has severly impacted the quality of her Life and her ability to do many of the things that she loved.
More training of the medical community about Sarcoma and the need for diagnostic thoroughness in evaluating any kind of lumps is critically important as well as desperately needed research, and are two of the primary goals of the Northwest Sarcoma Foundation of which my husband and I are former Board of Director members. Additionally, once a Sarcoma diagnosis is made, pro-active involvement in the patient's treatment, research, communication, networking, and shared anecdotal treatment information are critical to fighting this insidious disease.
Thank you for your continued special sharing, caring, and support dear Trixi in the heartbreaking aftermath of your beloved Patti's devastating and tragic recent loss. Take care and know that you, your family, and your dear angel Patti continue to be held very close in my aching heart and most special and caring thoughts.
Continuing to share your great frustration, anger, and your profound pain and sorrow with special understanding and deepest caring,
Bonni
You are totally justified in your venting, and I so deeply share your great frustration and anger with the avoidable mistakes and misdiagnoses that are made by doctors in who we naiively put our faith and confidence. When Brittany's lump on her thigh first appeared and we went to our very experienced, knowledgeable, and trusted family doctor who is also a close family friend, he told us that the lump was probably just a "fatty tissue deposit" of which he had seen hundreds in his years of practice. He told us that he thought that we should just watch it to see if it continued to grow, but if it would make us feel better we could have an MRI. Needless to say, we opted for the MRI wanting to make sure that it wasn't anything more than a benign lump. Tragically, and much to the doctor's surprise and embarassment, the MRI showed that the lump was NOT benign, a biopsy was done which resulted in the devastating ASPS diagnosis, and thus our heartbreaking and very challenging eleven year ASPS journey began.
I would strongly encourage your friend to insist that an MRI be done of the lump on her grandson's leg, and if the pediatrician is unwilling to schedule it, then to find another pediatrician. As you have tragically learned, and as our experiences during the past eleven years of Brittany's difficult battle have shown us, doctors aren't always right, they CAN and DO make mistakes, and sometimes they nonchalantly, naiively, and irresponsibly dismiss things too easily. Even as very pro-active and involved as we are with Brittany's ASPS battle, and we always insist on personally reviewing the scans with the doctor and having copies of both the scans and the radiologist report, inxcusable mistakes were made by the radiologist and interim oncologist reviewing her scans when they inexplicably and irresponsibly failed to observe/record the presence of a very large and rapidly growing spinal tumor which finally became symptomatic, was threatening to cause her total paralysis, and resulted in two very dangerous, major, and debilitating spinal surgeries which have caused Brittany heartbreaking severe and chronic spinal pain for which the pain specialists and her spinal surgeon say there are heartbreakingly no treatment options or remedies at this time. When we requested to look at the scans with the interim oncologist, he told us that he didn't have time because he had another patient waiting, and that it wasn't necessary because the radiologist report said that the chest CT was stable with no new mets ( no mention was made in the report of the spinal tumor which was very visible to us when we were finally able to review the scans three months later when Brittany began experiencing spinal pain!). Unfortunately, our acceptance of the interim oncologist's refusal to show us the scans as well as naiively believing the conclusion of the radiologist report, nearly cost our precious daughter her Life, and has severly impacted the quality of her Life and her ability to do many of the things that she loved.
More training of the medical community about Sarcoma and the need for diagnostic thoroughness in evaluating any kind of lumps is critically important as well as desperately needed research, and are two of the primary goals of the Northwest Sarcoma Foundation of which my husband and I are former Board of Director members. Additionally, once a Sarcoma diagnosis is made, pro-active involvement in the patient's treatment, research, communication, networking, and shared anecdotal treatment information are critical to fighting this insidious disease.
Thank you for your continued special sharing, caring, and support dear Trixi in the heartbreaking aftermath of your beloved Patti's devastating and tragic recent loss. Take care and know that you, your family, and your dear angel Patti continue to be held very close in my aching heart and most special and caring thoughts.
Continuing to share your great frustration, anger, and your profound pain and sorrow with special understanding and deepest caring,
Bonni
Re: Amanda R :) from California - Dx 2009
Thank you, Bonni. You bless and help so many people with your committment, deep and genuine concern, and your personal research and sharing of knowledge gained through Brittany's journey with ASPS.
God bless you,
Trixi
God bless you,
Trixi
Re: Amanda R :) from California - Dx 2009
Hello Trixi,
They are saying that it seems there maybe two types. But, from what i am seeing i am lost an I can only speek for my situation today and not yet tomorrow...
The situation with your friends child is shocking and it will take one hour! many sarcomas start in the leg an knee i know a few that have had it start there!
Many were sluffed off and are paying for the mistakes of not making sure and it is heartbreaking!
Please, tell the other mother as a mother myself do NOT take this chance! Sarcoma is on the rise thru many different venues including leaching of chemicals into our bodies thru so many different things i can not list!
Tell her this can be the difference between a surgery an a scar and not living a full life! Regret in the later time is still irresponsibility to your child in the long run an she has been warned!
It now falls on her and that one hour is good time spent getting a CT or Ultra sound as mine was diagnosed or MRI...
They are saying that it seems there maybe two types. But, from what i am seeing i am lost an I can only speek for my situation today and not yet tomorrow...
The situation with your friends child is shocking and it will take one hour! many sarcomas start in the leg an knee i know a few that have had it start there!
Many were sluffed off and are paying for the mistakes of not making sure and it is heartbreaking!
Please, tell the other mother as a mother myself do NOT take this chance! Sarcoma is on the rise thru many different venues including leaching of chemicals into our bodies thru so many different things i can not list!
Tell her this can be the difference between a surgery an a scar and not living a full life! Regret in the later time is still irresponsibility to your child in the long run an she has been warned!
It now falls on her and that one hour is good time spent getting a CT or Ultra sound as mine was diagnosed or MRI...
“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
Thank you Amanda. I have let my friend know how strongly you and Bonni feel about this - coming from where you have been in your research and personal experience - and I certainly hope they will follow through... and I hope they will find that the lump in back of little Wyatt's knee is indeed harmless.
Thank you both so much.
Trixi
Thank you both so much.
Trixi
Re: Amanda R :) from California - Dx 2009
Hello
Thank you. for passing along my passionate feelings on this situation!
If there is a chance just a sluff of shoulders and words we want to hear because we never want to believe this could happen to our children or us seems to happen all to much in the world now! This could be also a number of things and he knee is a very important joint also! Finding out what this is before a problem can arise beyond a cancer diagnosis is also important! I hope very much that they fallow thru and i hope that they find it to be some thing silly and that he can be treated for what ever else has created this lump *BTW thats is abnormal and shouldn't be over looked either way* I hope they find a good doctor then is not Gen Med to fallow up...
Take care and let us know how the lil one is if you have time!
Thank you. for passing along my passionate feelings on this situation!
If there is a chance just a sluff of shoulders and words we want to hear because we never want to believe this could happen to our children or us seems to happen all to much in the world now! This could be also a number of things and he knee is a very important joint also! Finding out what this is before a problem can arise beyond a cancer diagnosis is also important! I hope very much that they fallow thru and i hope that they find it to be some thing silly and that he can be treated for what ever else has created this lump *BTW thats is abnormal and shouldn't be over looked either way* I hope they find a good doctor then is not Gen Med to fallow up...
Take care and let us know how the lil one is if you have time!
“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: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Dear Amanda and Trixi,
Thank you for your valued additional input and sharing Amanda, and thank you Trixi for your very kind and gracious words. My great Hope is that little Wyatt's lump behind his knee is indeed just a benign lump of some type which will Hopefully resolve without any medical intervention, but it is certainly better to be safe than sorry, and critically important to obtain a definitive diagnosis. It is more than likely that the lump is benign, but parents/patients can't just put their heads in the sand, assume/pretend that nothing is wrong, and think that the problem will eventually go away, because as all of us in the ASPS Community have heartbreakinly learned, sometimes it doesn't. The eleven month granddaughter of some of our best friends had a lump on her leg which was ultimately devastatingly diagnosed as a symptom of a type of leukemia. Lumps on the body are not normal and need to be properly evaluated, and if necessary treated, by a knowledgeable physician.
Please keep us updated on the parents' decision dear Trixi, and the outcome which will Hopefully bring only good news.
With special hugs, caring thoughts, and continued Hope,
Bonni
Thank you for your valued additional input and sharing Amanda, and thank you Trixi for your very kind and gracious words. My great Hope is that little Wyatt's lump behind his knee is indeed just a benign lump of some type which will Hopefully resolve without any medical intervention, but it is certainly better to be safe than sorry, and critically important to obtain a definitive diagnosis. It is more than likely that the lump is benign, but parents/patients can't just put their heads in the sand, assume/pretend that nothing is wrong, and think that the problem will eventually go away, because as all of us in the ASPS Community have heartbreakinly learned, sometimes it doesn't. The eleven month granddaughter of some of our best friends had a lump on her leg which was ultimately devastatingly diagnosed as a symptom of a type of leukemia. Lumps on the body are not normal and need to be properly evaluated, and if necessary treated, by a knowledgeable physician.
Please keep us updated on the parents' decision dear Trixi, and the outcome which will Hopefully bring only good news.
With special hugs, caring thoughts, and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
A little note to all our ASPS family!
May your holidays be filled with memories and love!
May we find a cure!
May pain an fear fall away!
May we find out why this sarcoma struck us so we can prevent this from happening to others!
May what you an I dream come true in 2013
My love to you all! xox
May your holidays be filled with memories and love!
May we find a cure!
May pain an fear fall away!
May we find out why this sarcoma struck us so we can prevent this from happening to others!
May what you an I dream come true in 2013
My love to you all! 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
Scans 1/15/13 I hate sarcoma!
Hello
well, mixed news...
First good..
i still have the same amount of things in my lungs nothing new!
BUT, there was growth in some of the mets an the largest is now about 13mm...
some are seemingly smaller and one he said looked calcified?
Dr Foshag said they are now large enough to see an it is time to remove them all and prayerfully maybe one day for how ever long it can be i maybe NED :/
He said he wants to wait six months for me to strengthen my body i gained a LIL weight... My feelings are work out eat well as i do already and go in and do this in three months... Six months seems way to long does it to you all?
They will be doing thoracic surgeries he said he is concerned about other treatments now used creating spread. I went thru so much in the last one i had 4 inches of my 8th rib removed an cheat wall removed an he also pulled a i think 5 things out of my lungs and half were not sarcoma ... But my fear is recovery an , well all of it again slapping me in the face!
I will be honest i am frightened and sad hate sarcoma!
well, mixed news...
First good..
i still have the same amount of things in my lungs nothing new!
BUT, there was growth in some of the mets an the largest is now about 13mm...
some are seemingly smaller and one he said looked calcified?
Dr Foshag said they are now large enough to see an it is time to remove them all and prayerfully maybe one day for how ever long it can be i maybe NED :/
He said he wants to wait six months for me to strengthen my body i gained a LIL weight... My feelings are work out eat well as i do already and go in and do this in three months... Six months seems way to long does it to you all?
They will be doing thoracic surgeries he said he is concerned about other treatments now used creating spread. I went thru so much in the last one i had 4 inches of my 8th rib removed an cheat wall removed an he also pulled a i think 5 things out of my lungs and half were not sarcoma ... But my fear is recovery an , well all of it again slapping me in the face!
I will be honest i am frightened and sad hate 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
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Dear Amanda,
It is so good to hear from you again, but I am very sorry that some of your lung mets have now increased in size. How many lung mets do you currently have, and how much have they increased in size since your last scan? I personally don't understand why Dr. Foshag wants to delay removing the mets for six months as that may put you at risk for increased growth and possibly a more difficult surgery and recovery. Also, depending on the number and location of the mets, it seems that Cryoablation, or laser resection with Dr. Rolle in Germany ( if that is financially possible) would be less invasive and less physically traumatic treatment options to explore. It is certainly very good news and encouraging that there are no new lung mets and that some appear to have shrunk. Are you only being followed with chest CT's at this time, or are you also having pelvic/abdominal CT scans as well as yearly bone scans and brain MRI's?
I know how very disappointed and discouraged you must be with these new results dear Amanda, and I, as you were, was SO Hopeful that your remaining lung mets were dead scar tissue or benign lesions and that you were NED. Sadly, as we all know far too well, this disease is so unpredictable and it seems to play cruel games, but we also know that by being pro-active with scans and treatments there is Hope that it can be stabilized until a permanent treatment and cure is found.
Please take good care of yourself, feel my arms reaching out to embrace you with a special hug, know that I am holding you very close in my heart and my continued most caring thoughts, and keep the Board updated as you are able.
Heart to heart with deepest caring, positive thoughts, healing wishes, warm friendship, and continued Hope,
Bonni
It is so good to hear from you again, but I am very sorry that some of your lung mets have now increased in size. How many lung mets do you currently have, and how much have they increased in size since your last scan? I personally don't understand why Dr. Foshag wants to delay removing the mets for six months as that may put you at risk for increased growth and possibly a more difficult surgery and recovery. Also, depending on the number and location of the mets, it seems that Cryoablation, or laser resection with Dr. Rolle in Germany ( if that is financially possible) would be less invasive and less physically traumatic treatment options to explore. It is certainly very good news and encouraging that there are no new lung mets and that some appear to have shrunk
. Are you only being followed with chest CT's at this time, or are you also having pelvic/abdominal CT scans as well as yearly bone scans and brain MRI's? I know how very disappointed and discouraged you must be with these new results dear Amanda, and I, as you were, was SO Hopeful that your remaining lung mets were dead scar tissue or benign lesions and that you were NED. Sadly, as we all know far too well, this disease is so unpredictable and it seems to play cruel games, but we also know that by being pro-active with scans and treatments there is Hope that it can be stabilized until a permanent treatment and cure is found.
Please take good care of yourself, feel my arms reaching out to embrace you with a special hug, know that I am holding you very close in my heart and my continued most caring thoughts, and keep the Board updated as you are able.
Heart to heart with deepest caring, positive thoughts, healing wishes, warm friendship, and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
Amanda - can you ask your doc to consult with the cryo doc there - I think Dr.Suh works in LA (?) about 13mm met, if it could be ablated right away? Then you can wait for the rest of the mets to grow to a size when they will be more easily found during the surgery. 13 mm is about the ideal size for the cryo.
Olga
Re: Amanda R :) from California - Dx 2009
Hello Bonnie and Olga
Thank you, so much for responding! the decisions in this matter are so important an i dont feel confident making them completely alone! I still only have eleven mets in my lungs nothing new for a few years now and they are concerned about spread with Cyro :/ Is there a stronger possibility with that over thoracotomy? To be honest i would MUCH rather remove all with Cyro lol But, both Oncs are saying thoracotomy :/
I am surprised there is no other mets visible for a few years an i am deeply concerned about spread an i will not be waiting six months! I called an left msg's requesting that this all be done in three months and scans be done first an the first surgery. I have to get my lung functions higher then they are... i am walking a lot an it is already helping. I am also still swollen in the area of my chest surgery can you believe that it still is not completely healed! I was told these new surgeries would not be as hard as what i went thru :/ Remember they removes 4 inches of my 8th rib an chest wall in the last one on the right side.
After what i have been thru already i am also concerned about having thoracotomy on both lungs.. can people deal with all this surgery?
Today I called Dr Forscher an asked him if NED has ever been acheved with this type of situation an was there any real hope of that possibly that NED lasting or at least for ten years. I told him about the report you had posted Olga in reference to this and he himself has seen this happen. He said yes an he believed at this point surgeries were the best option since there has been no additional mets visible for so long. He said if this doesn't work there are many new things out there and there is a lot of hope one of them would also help... Actually both Oncs stated that there are some new meds that are very good an there is hope! What are your feelings an opinion on this i respect your opinions...
Thank you, so much for responding! the decisions in this matter are so important an i dont feel confident making them completely alone! I still only have eleven mets in my lungs nothing new for a few years now and they are concerned about spread with Cyro :/ Is there a stronger possibility with that over thoracotomy? To be honest i would MUCH rather remove all with Cyro lol But, both Oncs are saying thoracotomy :/
I am surprised there is no other mets visible for a few years an i am deeply concerned about spread an i will not be waiting six months! I called an left msg's requesting that this all be done in three months and scans be done first an the first surgery. I have to get my lung functions higher then they are... i am walking a lot an it is already helping. I am also still swollen in the area of my chest surgery can you believe that it still is not completely healed! I was told these new surgeries would not be as hard as what i went thru :/ Remember they removes 4 inches of my 8th rib an chest wall in the last one on the right side.
After what i have been thru already i am also concerned about having thoracotomy on both lungs.. can people deal with all this surgery?
Today I called Dr Forscher an asked him if NED has ever been acheved with this type of situation an was there any real hope of that possibly that NED lasting or at least for ten years. I told him about the report you had posted Olga in reference to this and he himself has seen this happen. He said yes an he believed at this point surgeries were the best option since there has been no additional mets visible for so long. He said if this doesn't work there are many new things out there and there is a lot of hope one of them would also help... Actually both Oncs stated that there are some new meds that are very good an there is hope! What are your feelings an opinion on this i respect your opinions...
“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
Amanda, the risk of the local spread by the cryo probe depends on the qualification of the interventional radiologist - the special doctor that performs it, at how precisely he follows the techniques that allows to ensure there is no local spread. Both docs that you could use - Dr.Littrup (the best option) and Dr.Suh are the good level docs so it minimizes the risk - none of our patients that had a cryo with Dr.Littrup had a local dissemination by the probe - so far. But it only fixes one or few mets at once. It looks like your thoracic surgeon is confident that he is able to find and remove all the mets, so apparently he has a point here. What are the smaller mets sizes?
Olga