Larry from Buffalo --Dx Sept 2011
Re: Larry from Buffalo --Dx Sept 2011
Its been a while since I wrote (forgot user name and password and was finally able to retrieve them). What is the difference between Dr. Rolle's surgery and the other procedure I've read about that is done over here? Are they interchangeable or do they accomplish different things? Its been over 10 months since I was diagnosed and so far the mets in my lungs are stable. Dr. Rolle thinks I should have them taken out anyway. Does anyone have an opinion about that? Part of me says, "If it ain't broke, don't fix it," but I don't want to wait too long if that could cause a problem. As always, thanks to everyone.
Re: Larry from Buffalo --Dx Sept 2011
Larry, first of all it is a good news that the lung mets are stable although I would have been very cautious to believe they are because it is very often that the slow growth is missed in ASPS. Ask them to compare the scans with a year between them or better with 2 years.
If you want to figure out what are the reason for the people to fly to Germany and to pay their own money for the lung surgery when they have an insurance that covers it at home, you can read the review we wrote while ago on the main page here:
http://www.cureasps.org/?p=98
in short version. the laser tool Dr.Rolle uses enables him to remove the centrally located small and multiple mets and it is often technically impossible with the traditional lung surgery or requires to remove to much lung tissue. The problem here that Dr.Rolle developed this tool and it is not avail. in US or Canada, only in Europe or Japan. As I understand it is going to be avail. in China later on. This tool is very specific and hard to learn to use. It became popular with ASPS sarcoma patients because the lung mets pattern is exactly where it is the most beneficial. The other problem is that Dr.Rolle is going to retire in not that distant future and if the surgery needs to be done by him I would do it rather sooner than later. And I would not say that "it is not broken" when there are multiple lung mets. You just do not feel it yet.
In some cases these mets can be removed by the reg. lung surgery locally.
If you want to figure out what are the reason for the people to fly to Germany and to pay their own money for the lung surgery when they have an insurance that covers it at home, you can read the review we wrote while ago on the main page here:
http://www.cureasps.org/?p=98
in short version. the laser tool Dr.Rolle uses enables him to remove the centrally located small and multiple mets and it is often technically impossible with the traditional lung surgery or requires to remove to much lung tissue. The problem here that Dr.Rolle developed this tool and it is not avail. in US or Canada, only in Europe or Japan. As I understand it is going to be avail. in China later on. This tool is very specific and hard to learn to use. It became popular with ASPS sarcoma patients because the lung mets pattern is exactly where it is the most beneficial. The other problem is that Dr.Rolle is going to retire in not that distant future and if the surgery needs to be done by him I would do it rather sooner than later. And I would not say that "it is not broken" when there are multiple lung mets. You just do not feel it yet.
In some cases these mets can be removed by the reg. lung surgery locally.
Olga
Re: Larry from Buffalo --Dx Sept 2011
Hello,
This is Larry from Buffalo, diagnosed August 2011. Lungs mets reasonably stable. I had contacted Dr. Rolle who said he could operate but then changed his mind for reasons that I never understood. There has been some progression but very minor and nothing that interferes with my life - yet. I have an appointment at NIH next month and may have to start the medicine then - either sutent or cediranib. A number of people have been on cediranib for several years but I don't know about sutent. I don't get to pick - the study is random. Does anyone know if anyone on meds long term has used both or is it only people who happen to get lucky with cediranib? My fear is that I will be unlucky with the draw and have to start with sutent and then when that runs its course, the cediranib will be less effective. I have read about cryobation and some other things but not sure anything else is viable. Thanks all.
This is Larry from Buffalo, diagnosed August 2011. Lungs mets reasonably stable. I had contacted Dr. Rolle who said he could operate but then changed his mind for reasons that I never understood. There has been some progression but very minor and nothing that interferes with my life - yet. I have an appointment at NIH next month and may have to start the medicine then - either sutent or cediranib. A number of people have been on cediranib for several years but I don't know about sutent. I don't get to pick - the study is random. Does anyone know if anyone on meds long term has used both or is it only people who happen to get lucky with cediranib? My fear is that I will be unlucky with the draw and have to start with sutent and then when that runs its course, the cediranib will be less effective. I have read about cryobation and some other things but not sure anything else is viable. Thanks all.
Re: Larry from Buffalo --Dx Sept 2011
HI Larry
My name is Debbie and our son Josh was dx in August 2012.
http://www.cureasps.org/forum/viewtopic.php?f=4&t=750
He went to Germany in 2012 and 2013 after his leg tumor was removed. He thought there were about 30 or 40 in each lung
Turned out to be over 70 in each one
I suspect that doctor Rolle found a tumor that maybe was too large to take care of or maybe is there other tumors that have been found else where other than the lungs since 2011?
Can the larger tumor(s) be cyroblated? How big are they?
Write when able
Debbie
My name is Debbie and our son Josh was dx in August 2012.
http://www.cureasps.org/forum/viewtopic.php?f=4&t=750
He went to Germany in 2012 and 2013 after his leg tumor was removed. He thought there were about 30 or 40 in each lung
Turned out to be over 70 in each one
I suspect that doctor Rolle found a tumor that maybe was too large to take care of or maybe is there other tumors that have been found else where other than the lungs since 2011?
Can the larger tumor(s) be cyroblated? How big are they?
Write when able
Debbie
Debbie
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Bonni Hess
- Senior Member
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- Location: Sammamish, WA USA
Re: Larry from Buffalo --Dx Sept 2011
Happy and Hopefully Healthy 2016 Larry 
It was so good to hear from you and to hear that your lung mets are relatively stable with only minor increased growth. How often are your scans being done and what type of scans are you having (chest CT, abdominal/pelvic CT, brain MRI, full body bone scan?) Hopefully your most recent chest scans were compared with scans from at least a year ago to obtain the most accurate determination of the actual rate/amount of growth of your lung mets, as opposed to comparison of the most current scans with the immediately previous scan which can give deceiving results. Hopefully too your disease is being monitored with more than just regular chest CT scans since this unpredictable disease can unfortunately develop in other areas of the body even when the lung mets appear to be "reasonably stable". Vigilant, appropriate, and adequate scanning is essential in fighting and managing this very challenging disease.
Regarding your plan to possibly pursue systemic treatment with Cediranib or Sutent, until/unless you are experiencing rapid and widespread disease progression with dangerously located unresectable/untreatable mets, based on my personal 14 and a half years of ASPS experience, and extensive research, observations, and networking with other ASPS patients/family members, I would personally recommend that you postpone systemic treatment at this time and instead pursue resection, ablation, or other non systemic treatments for your current mets until/unless you have no other treatment options because if the systemic treatment is unsuccessful in stabilizing the progression of your now relatively stable disease, you may then tragically be left with no further treatment options having already exhausted the Cediranib or Sutent treatment options. Because there are unfortunately currently no statistically permanently effective and sustained long term systemic treatments and cures available for ASPS patients, including Cediranib and Sutent, the best approach continues to appear to be managing the disease through vigilant and regular scans and resection/ablation/radiosurgery to remove/destroy new and/or concerning mets if/when they appear, if possible. With the exception of a failed GVAX Immunotherapy Vaccine Clinical Trial in 2006 and a failed C-met ARQ-197 Clinical Trial in 2008, our treatment approach for Brittany for the first eight years of her ASPS battle involved managing her disease and new/concerning mets with 23 resections/ablations/radiosurgeries until she devastatingly developed an unresectable/untreatable Life threatening met in the head of her pancreas six years ago and we had no remaining treatment options available except a systemic treatment so we then aggressively researched and pursued a Clinical Trial with the promising new TKI drug Cediranib which had shown some encouraging success for an English ASPS patient. VERY thankfully, since beginning the Cediranib Clinical Trial in April 2009, Brittany has now had six years and nine months of disease stability and dramatic disappearance of her previously innummerous and widely disseminated mets, but we are painfully aware that she could devastatingly develop resistance to the Cediranib at any time and possible rapid and aggressive disease progression. She remains to her oncologist's and our knowledge the patient with the longest sustained response to Cediranib in the World, but although she may be currently macroscopically cancer free, her Clinical Trial oncologist feels that she may unfortunately not be microscopically free of the ASPS cancer cells so at this time she will continue on the Cediranib until she develops resistance to the drug or a permanent treatment and cure becomes available.
Take care Larry and keep the Board updated about your situation and treatment decision as you are able.
With special caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni, mother of now 33 and a half year old Brittany diagnosed 14 and a half years ago in July 2001 at age 19
It was so good to hear from you and to hear that your lung mets are relatively stable with only minor increased growth. How often are your scans being done and what type of scans are you having (chest CT, abdominal/pelvic CT, brain MRI, full body bone scan?) Hopefully your most recent chest scans were compared with scans from at least a year ago to obtain the most accurate determination of the actual rate/amount of growth of your lung mets, as opposed to comparison of the most current scans with the immediately previous scan which can give deceiving results. Hopefully too your disease is being monitored with more than just regular chest CT scans since this unpredictable disease can unfortunately develop in other areas of the body even when the lung mets appear to be "reasonably stable". Vigilant, appropriate, and adequate scanning is essential in fighting and managing this very challenging disease.Regarding your plan to possibly pursue systemic treatment with Cediranib or Sutent, until/unless you are experiencing rapid and widespread disease progression with dangerously located unresectable/untreatable mets, based on my personal 14 and a half years of ASPS experience, and extensive research, observations, and networking with other ASPS patients/family members, I would personally recommend that you postpone systemic treatment at this time and instead pursue resection, ablation, or other non systemic treatments for your current mets until/unless you have no other treatment options because if the systemic treatment is unsuccessful in stabilizing the progression of your now relatively stable disease, you may then tragically be left with no further treatment options having already exhausted the Cediranib or Sutent treatment options. Because there are unfortunately currently no statistically permanently effective and sustained long term systemic treatments and cures available for ASPS patients, including Cediranib and Sutent, the best approach continues to appear to be managing the disease through vigilant and regular scans and resection/ablation/radiosurgery to remove/destroy new and/or concerning mets if/when they appear, if possible. With the exception of a failed GVAX Immunotherapy Vaccine Clinical Trial in 2006 and a failed C-met ARQ-197 Clinical Trial in 2008, our treatment approach for Brittany for the first eight years of her ASPS battle involved managing her disease and new/concerning mets with 23 resections/ablations/radiosurgeries until she devastatingly developed an unresectable/untreatable Life threatening met in the head of her pancreas six years ago and we had no remaining treatment options available except a systemic treatment so we then aggressively researched and pursued a Clinical Trial with the promising new TKI drug Cediranib which had shown some encouraging success for an English ASPS patient. VERY thankfully, since beginning the Cediranib Clinical Trial in April 2009, Brittany has now had six years and nine months of disease stability and dramatic disappearance of her previously innummerous and widely disseminated mets, but we are painfully aware that she could devastatingly develop resistance to the Cediranib at any time and possible rapid and aggressive disease progression. She remains to her oncologist's and our knowledge the patient with the longest sustained response to Cediranib in the World, but although she may be currently macroscopically cancer free, her Clinical Trial oncologist feels that she may unfortunately not be microscopically free of the ASPS cancer cells so at this time she will continue on the Cediranib until she develops resistance to the drug or a permanent treatment and cure becomes available.
Take care Larry and keep the Board updated about your situation and treatment decision as you are able.
With special caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni, mother of now 33 and a half year old Brittany diagnosed 14 and a half years ago in July 2001 at age 19
Re: Larry from Buffalo --Dx Sept 2011
Larry - did you see the posts about new ASPS active drug that some people are trying (and responding) -
http://www.cureasps.org/forum/viewtopic.php?f=73&t=1130
keep you eyes on them.
Re. possible getting sunitinib and later having less chance to respond to cediranib - it is noted that someone responding to one TKI have a pretty good chance to respond to another TKI. Some drs even note that if there is a resistance develops, sometimes discontinuing and restarting the drug after the wash out period could get a response again (although weaker and shorter but sometimes very worthwhile).
Re. Dr.Rolle - he is retiring next month that's probably the reason. What were the circumstances of his refusal, may be the centrally located mets grw past the size he can use the laser on them, afraid to damage the central veins/arteries.wind pipe. Ask for the clarification, and if cryo-ing the concerning mets first could improve the chances for the resection. Do not be afraid to ask questions, it is very important to be clear re. tools, chances, time restrictions/windows of opportunity and size/location limitations of every approach.
http://www.cureasps.org/forum/viewtopic.php?f=73&t=1130
keep you eyes on them.
Re. possible getting sunitinib and later having less chance to respond to cediranib - it is noted that someone responding to one TKI have a pretty good chance to respond to another TKI. Some drs even note that if there is a resistance develops, sometimes discontinuing and restarting the drug after the wash out period could get a response again (although weaker and shorter but sometimes very worthwhile).
Re. Dr.Rolle - he is retiring next month that's probably the reason. What were the circumstances of his refusal, may be the centrally located mets grw past the size he can use the laser on them, afraid to damage the central veins/arteries.wind pipe. Ask for the clarification, and if cryo-ing the concerning mets first could improve the chances for the resection. Do not be afraid to ask questions, it is very important to be clear re. tools, chances, time restrictions/windows of opportunity and size/location limitations of every approach.
Olga
Re: Larry from Buffalo --Dx Sept 2011
Thx Debbie, Bonni and Olga. Dr. Rolle initially said he could perform his surgery but then said he couldn't. The radiologist here said there was no increase but Dr.Rolle said there was. I was probably being a pain in trying to schedule the surgery (I was still working then) and I've always wondered if that was the reason. I was initially diagnosed at Roswell Cancer Institute in Buffalo and the oncologist wanted me to start sutent right away. I'm very glad i didn't. I have scans every five months (because to get into the NIH study of cedirinib/sutent, you have to have two scans and entry into the study within six months). Before that, they were every six months with a brain mri annually (although I don't think I've had one in two years). I'm not sure Roswell was real familiar with asps and the oncologist has since left. My last scans were at NIH and I'm scheduled for February 1. I have read here about cry oblation and other things but have never talked to anyone familiar with those procedures. Maybe western NY is too small for cutting edge stuff. One guy wanted to radiate the mets as they grew but I don't think he knew anything about asps. The folks at NIH are terrific but they probably have a prejudice in favor of medication because that's what the study is for although they have not pressured me to start.
Re: Larry from Buffalo --Dx Sept 2011
Hello Larry
Are you in the trial or about to enter the NIH trial?
All of our work schedules seem to get in the way, don't they?
I bet Dr Rolle saw somehting that the radiaologist didn't.
Namely the need for systemic treatment or local lung treatment?
As ASPS is so rare Dr. Rolle has seen possible more patience than most doctors in the states have seen in their total careers.
We were also denied and suggested to persue systemic treatment . ASPS is so hard to perdict.
Don't be discouraged.
Are you working with a sarcoma doctor to review scans with you?
Debbie
Are you in the trial or about to enter the NIH trial?
All of our work schedules seem to get in the way, don't they?
I bet Dr Rolle saw somehting that the radiaologist didn't.
Namely the need for systemic treatment or local lung treatment?
As ASPS is so rare Dr. Rolle has seen possible more patience than most doctors in the states have seen in their total careers.
We were also denied and suggested to persue systemic treatment . ASPS is so hard to perdict.
Don't be discouraged.
Are you working with a sarcoma doctor to review scans with you?
Debbie
Debbie
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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: Larry from Buffalo --Dx Sept 2011
Hello again Larry, I continue to be perplexed as to why you are currently pursuing a systemic treatment if your lung mets are "reasonably stable" instead of exploring a minimally invasive procedure such as lung met Cryoablation for any large or concerningly located lung mets? Also, I encourage you to be more vigilant in having an at least once a year brain MRI and full body bone scan, as well as abdominal and pelvic CT scans or MRI's when you have your chest CT scans if they are not currently being scheduled and done at NIH. With special caring thoughts, healing wishes, warm friendship, and continued Hope, Bonni
Re: Larry from Buffalo --Dx Sept 2011
Bonni, I forgot to say yesterday how happy I am that Brittany is doing so well on cedirinib. At NIH they have some people who have been on it for three years plus but not the almost seven for Brittany. Please give her my best. No doctor I even spoke to has even mentioned any treatment other than medicine other than Dr. Rolle. Any suggestions on where I would go for other choices?
Re: Larry from Buffalo --Dx Sept 2011
If you want to be evaluated for the cryo for the biggest/most dangerously located lung mets, contact Dr.Littrup directly in Providence or Dr.Aoun in Detroit. Their info is in the cryoablation forum
http://www.cureasps.org/forum/viewforum.php?f=55
just tell them that you have already asked Dr.Rolle as they might suggest that.
http://www.cureasps.org/forum/viewforum.php?f=55
just tell them that you have already asked Dr.Rolle as they might suggest that.
Olga
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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: Larry from Buffalo --Dx Sept 2011
Dear Larry, Thank you for your thoughtful expression of shared happiness for Brittany's thus far relatively long term sustained successful response to Cediranib. It is very encouraging to hear that there are patients in the NIH Cediranib Trial who have apparently thus far had three years of disease stability. Do you know if they are ASPS patients? If so, I wish that they would share their anecdotal Cediranib experience and results on this Board so that everyone can learn and benefit from their experience. I agree with Olga that you should explore and pursue Cryoablation of your largest/most concerning lung mets with either Dr. Littrup or Dr. Aoun. Unfortunately it is not unusual for many oncologists to not discuss alternative treatments to chemo or other systemic treatments with ASPS patients since many oncologists have very little if any knowledge and experience with this extremely rare and poorly understood disease. This was the case with Brittany when she was first diagnosed and her highly respected orthopedic oncologist strongly recommended standard chemo which we refused after researching and learning that standard chemo had not proven to be successful for ASPS. The burden is on the ASPS patient/patient's family to be extremely proactive and as well researched and knowledgeable as possible which is the focus of this Board in providing and encouraging shared information. It is critically Important for you to find an experienced Sarcoma oncologist who preferably has knowledge about and experience with ASPS, and is willing to discuss and explore the most up to date and promising treatment options with you. Take care Larry. With special caring thoughts, healing wishes, warm friendship, and continued Hope, Bonni
Re: Larry from Buffalo --Dx Sept 2011
Hi everyone. Thought I ought to reply since I haven't written in quite a while. I contacted one of the doctors who did the cryoblation but he didn't think he would be able to do it and suggested Dr. Rolle, who had already said my mets were too large for him. So I started the clinical trial at NIH - sunitinib vs. cedirinib. The sunitinib was awful - vomiting, diarrhea, and just feeling lousy. They switched me to the cedirinib which has been better but Dr. Chen recently told me that they are no longer taking new patients because they haven't had the results they hoped for with it. We have been talking about immunotherapy but NIH will require a lung biopsy that they are not sure they can do. Not sure why but I have talked with Roswell in Buffalo and they will take me on if NIH can't. Will save a bunch of travel anyway. If anyone has any other ideas please let me know. I just turned 70 so any loss for me is much less than these poor young people that get this disease.
Re: Larry from Buffalo --Dx Sept 2011
Hi Larry,
what is the current situation with the metastases you have?
Re. Immunotherapy trials - there are several but also there is an option to have Keytruda or Opdivo off label, prescribed. As they both are already approved for other indications, and are showing a great results in ASPS, they can be prescribed by the drs and paid by the insurance or provided by the Merck (for Keytruda) or Bristol Myers (for Opdivo) free of charge on compassionate basis.
My son Ivan is on Keytruda and it has been great for him. Both Keytruda and Opdivo are pretty much the same drug by two different producer.
This is the sample application request for Ketruda specific to ASPS patients
viewtopic.php?f=76&t=1482
what is the current situation with the metastases you have?
Re. Immunotherapy trials - there are several but also there is an option to have Keytruda or Opdivo off label, prescribed. As they both are already approved for other indications, and are showing a great results in ASPS, they can be prescribed by the drs and paid by the insurance or provided by the Merck (for Keytruda) or Bristol Myers (for Opdivo) free of charge on compassionate basis.
My son Ivan is on Keytruda and it has been great for him. Both Keytruda and Opdivo are pretty much the same drug by two different producer.
This is the sample application request for Ketruda specific to ASPS patients
viewtopic.php?f=76&t=1482
Olga
Re: Larry from Buffalo --Dx Sept 2011
Did the cediranib stop working, or..? It seems like many years of stability for you.LarryH wrote:Hi everyone. Thought I ought to reply since I haven't written in quite a while. I contacted one of the doctors who did the cryoblation but he didn't think he would be able to do it and suggested Dr. Rolle, who had already said my mets were too large for him. So I started the clinical trial at NIH - sunitinib vs. cedirinib. The sunitinib was awful - vomiting, diarrhea, and just feeling lousy. They switched me to the cedirinib which has been better but Dr. Chen recently told me that they are no longer taking new patients because they haven't had the results they hoped for with it. We have been talking about immunotherapy but NIH will require a lung biopsy that they are not sure they can do. Not sure why but I have talked with Roswell in Buffalo and they will take me on if NIH can't. Will save a bunch of travel anyway. If anyone has any other ideas please let me know. I just turned 70 so any loss for me is much less than these poor young people that get this disease.