Hello,
I’d like to introduce my spouse, Elisa.
She is 29 years old and was diagnosed with an alveolar soft part sarcoma a few weeks ago. The primary tumor is located in the thigh (11 x 24 x 7cm), and she has multiple lung metastases (around fifty; up to 2,7cm).
After the initial shock, we started to read and research a lot, and we consulted and communicated with several specialists in North America and in Europe. This board has been such an invaluable source of information!
We concluded that surgery wouldn’t be the best avenue at the moment and that we would first try to stabilize / shrink the tumors with a molecular therapy. The oncologist here in Montréal, Québec, has already worked with Cediranib and considers it one of the most promising options. But as you know, it’s only available at the NCI right now… He suggested Avastin as another anti-angiogenic possibility.
We also went to Toronto to discuss the ARQ 197 trial. In fact, this seems to be the only “newer” drug that would be somehow accessible for us at this point. The trial is now officially closed for accrual, but since we already started the screening process they would apparently still accept Elisa (if she gets on the trial ASAP).
The issue is that we were not convinced that c-MET was actually a good target and sent some tissue (from a lung met) to the Memorial-Sloan Kettering in NY, where a pathologist had agreed to do the staining. We got the results back this afternoon, and they are not very clear. Since these are investigational markers, there are apparently no defined standardized criteria for positive/negative threshold… the tumor shows “very focal and faint staining”, which means that compared to the published reports of MET immunostaining in ASPS, this result is significantly below what is called 3+ or 2+ staining.
Obviously we have no idea whether c-MET might be expressed more significantly in the primary, but we really don’t know whether getting on a c-MET-inhibitor drug like ARQ 197 would make sense. Any opinions on this!?
By the way, as expected, c-Kit is negative. But IGF1R and PDGFRA are positive.
Another possibility (perhaps more in the long run?) would be mTOR, although the oncologist here believes that it’s simply not efficient. We communicated with the doctor in charge of the Everolimus-trial in Germany who asserted that Everolimus / RAD001 was active in ASPS. The first results of the trial will, however, only be presented in late February. Any members of the board who have actually tried an mTOR-inhibitor!?
Thank you so much,
Johannes
Elisa - Dx 2010
Re: Introducing Elisa
Johannes, hi, welcome to the board. It is a good place to participate when you deal with such a rare disease like ASPS. I have a few comments on your wife situation:
- I would strongly discourage using Avastin alone treatment in ASPS. We had a few people on it and although this drug was active and caused some shrinkage, the response was short lived and caused very strong rebound growth after the tumor developed tolerance to it, so not only there was no clinical benefit but probably a negative result for these people. It is the same in for all the other diseases when only people with very short life expectancy get benefit from using Avastin alone when the initial benefit time is longer then their expected life time;
- if the participation in NCI trial is not an option (actually why? we are from Canada too (Vancouver) and have contacted the trial and were told that we are accepted the same as everyone else and extensive travel is not required after a few month) then I would consider trying sunitinib - it is the drug from the same class as cediranib (and Avastin is not from the same class) and we have a member who is on it for a long time with the continued stability (see LCMA personal updates); cediranib might be approved soon for other diseases and then it might be prescribed off label for ASPS but it is subject to Canadian health insurance paying for it.
- do try to remove the primary as soon as possible regardless of the lung situation because otherwise if Elisa will have to have a lung surgery, she most probably will be denied from having one if the primary is intact;
-we had one person on MTor inhibitor with stability for more then a year, but later she progressed. I am hoping that combination of a few drugs that are active in ASPS might lead to more sustained damage to the tumors but it is a matter of the future trials.
- I would strongly discourage using Avastin alone treatment in ASPS. We had a few people on it and although this drug was active and caused some shrinkage, the response was short lived and caused very strong rebound growth after the tumor developed tolerance to it, so not only there was no clinical benefit but probably a negative result for these people. It is the same in for all the other diseases when only people with very short life expectancy get benefit from using Avastin alone when the initial benefit time is longer then their expected life time;
- if the participation in NCI trial is not an option (actually why? we are from Canada too (Vancouver) and have contacted the trial and were told that we are accepted the same as everyone else and extensive travel is not required after a few month) then I would consider trying sunitinib - it is the drug from the same class as cediranib (and Avastin is not from the same class) and we have a member who is on it for a long time with the continued stability (see LCMA personal updates); cediranib might be approved soon for other diseases and then it might be prescribed off label for ASPS but it is subject to Canadian health insurance paying for it.
- do try to remove the primary as soon as possible regardless of the lung situation because otherwise if Elisa will have to have a lung surgery, she most probably will be denied from having one if the primary is intact;
-we had one person on MTor inhibitor with stability for more then a year, but later she progressed. I am hoping that combination of a few drugs that are active in ASPS might lead to more sustained damage to the tumors but it is a matter of the future trials.
Olga
Re: Introducing Elisa
Thank you, Olga, for your quick and helpful reply.
We were also a bit surprised regarding the Avastin suggestion... I agree that Sutent would probably be preferable in comparison to Avastin. But regarding the rebound effect, I am not too sure. It seems to me that this is generally a problem of anti-angiogenics, and if I remember well patients on Cediranib have also described significant rebound effects!?
Regarding the NCI trial, it is indeed a bit the extensive travelling that makes us wonder whether it is a good idea; but we would definitely try to do it if it was clearly a much better options than everything else, and I am not sure that this is the case.
We really thought that c-MET could be a good first target, that Elisa would get on ARQ 197 now and that we could always try some anti-angiogenic later. But now we are really not convinced after the results from the staining...
Thanks again,
Johannes
We were also a bit surprised regarding the Avastin suggestion... I agree that Sutent would probably be preferable in comparison to Avastin. But regarding the rebound effect, I am not too sure. It seems to me that this is generally a problem of anti-angiogenics, and if I remember well patients on Cediranib have also described significant rebound effects!?
Regarding the NCI trial, it is indeed a bit the extensive travelling that makes us wonder whether it is a good idea; but we would definitely try to do it if it was clearly a much better options than everything else, and I am not sure that this is the case.
We really thought that c-MET could be a good first target, that Elisa would get on ARQ 197 now and that we could always try some anti-angiogenic later. But now we are really not convinced after the results from the staining...
Thanks again,
Johannes
Re: Introducing Elisa
The time of response to cediranib is much longer then to Avastin, in most cases we are talking years not 2-3 month as with Avastin, it is a very different class of drugs - tyrosine kinase inhibitors. NCI pays for a travel from US to US town if accepted on this trial, so if there is a border close to you it might be an option. They provide accommodation when there. Very good conditions for the people to participate - if it stay the same in the economic downturn. ARQ 197 has shown no dramatic response in our people so I do not see why are you so interested.
Olga
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Introducing Elisa
Dear Johannes,
I am so deeply sorry for your wife's recent ASPS diagnosis, but am very grateful that you found your way to this Web site and Discussion Board and have reached out for information and support from the ASPS Community. I am grateful too that you are being so pro-active in aggressively researching information and treatment options, and that you are already so well informed and knowledgeable which is so extremely important in this challenging battle with this very rare disease. I personally completely agree with everything that Olga has said regarding the priority and importance of resecting the large primary tumor as soon as possible, the concerns about Avastin or ARQ-197 treatment having shown little success for ASPS (our daughter experienced more than 20% increased growth of her multiple lung mets during her two and a half month ARQ-197 treatment), and the recommendation for Cediranib or Sunitinib as possibly the most promising and effective currently available treatment options based on longer stabilization of the disease and tumor shrinkage experienced by several ASPS patients on this Board. Your concerns about potential developed resistance or rebound with anti-angiogenic drugs are valid, but there is evidence that if resistance is eventually developed to an anti-angiogenic medication, that switching to another medication in the same class of drugs may provide continued benefit. During our eight and a half year experience with our daughter Brittany's ASPS, Cediranib is the first treatment which we have found that has stabilized the progression of her disease for now ten months, and caused significant tumor shrinkage of her multiple mets. I know that you must feel very overwhelmed right now, and I know too how very difficult the treatment decisions are. I wish that there was one perfect answer or treatment, but unfortunately that isn't the case at this time, so all that you can do is actively research and network to be as well informed as possible, and then make the treatment decision based on whatever best meets the individual situation and needs of your wife, and whatever offers the best chance of a successful and sustained response. Please know that you and your wife are not alone in this battle, know that those of us on this Board are here to help with shared information and strengthening support, and know that my special thoughts and best wishes are with both of you. Take care Johannes, and keep in touch with the Board as you are able.
With special caring thoughts and continued Hope,
Bonni Hess, mother of Brittany Hess
I am so deeply sorry for your wife's recent ASPS diagnosis, but am very grateful that you found your way to this Web site and Discussion Board and have reached out for information and support from the ASPS Community. I am grateful too that you are being so pro-active in aggressively researching information and treatment options, and that you are already so well informed and knowledgeable which is so extremely important in this challenging battle with this very rare disease. I personally completely agree with everything that Olga has said regarding the priority and importance of resecting the large primary tumor as soon as possible, the concerns about Avastin or ARQ-197 treatment having shown little success for ASPS (our daughter experienced more than 20% increased growth of her multiple lung mets during her two and a half month ARQ-197 treatment), and the recommendation for Cediranib or Sunitinib as possibly the most promising and effective currently available treatment options based on longer stabilization of the disease and tumor shrinkage experienced by several ASPS patients on this Board. Your concerns about potential developed resistance or rebound with anti-angiogenic drugs are valid, but there is evidence that if resistance is eventually developed to an anti-angiogenic medication, that switching to another medication in the same class of drugs may provide continued benefit. During our eight and a half year experience with our daughter Brittany's ASPS, Cediranib is the first treatment which we have found that has stabilized the progression of her disease for now ten months, and caused significant tumor shrinkage of her multiple mets. I know that you must feel very overwhelmed right now, and I know too how very difficult the treatment decisions are. I wish that there was one perfect answer or treatment, but unfortunately that isn't the case at this time, so all that you can do is actively research and network to be as well informed as possible, and then make the treatment decision based on whatever best meets the individual situation and needs of your wife, and whatever offers the best chance of a successful and sustained response. Please know that you and your wife are not alone in this battle, know that those of us on this Board are here to help with shared information and strengthening support, and know that my special thoughts and best wishes are with both of you. Take care Johannes, and keep in touch with the Board as you are able.
With special caring thoughts and continued Hope,
Bonni Hess, mother of Brittany Hess
Re: Elisa - Dx 2010
Where Elisa and family go from here:
her experience with Cediranib
http://www.cureasps.org/forum/viewtopic.php?f=45&t=529
and currently with Pazopanib
http://www.cureasps.org/forum/viewtopic.php?f=63&t=781
her experience with Cediranib
http://www.cureasps.org/forum/viewtopic.php?f=45&t=529
and currently with Pazopanib
http://www.cureasps.org/forum/viewtopic.php?f=63&t=781
Debbie
Re: Elisa - Dx 2010
Dear all,
It has been a while since I last contributed with a post, so here is a bit of news.
Elisa has been doing alright, overall. She stayed on Pazopanib until a few months ago, and stopped because her lung mets have been growing slowly but steadily. She also has terrible episodes every few weeks with a lot of pain originating from the site of the primary tumor in the thigh. Otherwise, she tries to be as active as possible and has been able to go for short jogs once in a while.
We have been exploring other options, such as an oncolytic virus trial, but such trials still seem to be in their very early stages. A few weeks ago, Elisa’s oncologist had a spot available in a study testing an MDM2 antagonist (RO6839921). MDM2 inhibits the tumor suppressor p53. Apparently, MDM2 is often overexpressed in sarcomas, and MDM2 inhibitors may also inhibit angiogenesis, so this trial didn’t seem totally unreasonable. We found this article quite useful (although not very recent): Targeting the MDM2-p53 Interaction for Cancer Therapy. Elisa has just finished the second round of IV treatments, which are given every four weeks. Side effects have been relatively minor so far (mostly fatigue). The first follow-up CT scan will be done in a bit more than two weeks, and we will of course post any noteworthy results.
What is perhaps also of interest: Elisa’s oncologist tried to get her into a trial with an AKT inhibitor (AZD5363), but there was no AKT gene mutation detected in the tumor sample, so she could not get into this trial. By the way, is there a shared feeling on the board regarding next generation sequencing tests? Rachel’s experience is interesting, and we are wondering whether others have had similar experiences. We came across this article on molecular profiling of soft tissue sarcoma, but ASPS was not included.
We have also been trying to get Elisa a spot in a trial testing a PD-1 or PD-L1 antibody, and she has been put on the wait list for one of them. We will try even harder after the extremely encouraging results experienced by Rachel and others (thanks so much for sharing them on the forum!).
Resecting the large primary is still not our first option (although we do keep in mind that some drugs might work better with a lower overall tumour burden in the body), and we will continue to try to find a systemic treatment that shrinks the tumor first. Elisa had another appointment with a specialized sarcoma surgeon a few weeks ago, and he advised once more against a surgery. He felt that her quality of life would most likely be drastically diminished because of the significant portion of the muscles that would have to be removed.
All the best,
Johannes
It has been a while since I last contributed with a post, so here is a bit of news.
Elisa has been doing alright, overall. She stayed on Pazopanib until a few months ago, and stopped because her lung mets have been growing slowly but steadily. She also has terrible episodes every few weeks with a lot of pain originating from the site of the primary tumor in the thigh. Otherwise, she tries to be as active as possible and has been able to go for short jogs once in a while.
We have been exploring other options, such as an oncolytic virus trial, but such trials still seem to be in their very early stages. A few weeks ago, Elisa’s oncologist had a spot available in a study testing an MDM2 antagonist (RO6839921). MDM2 inhibits the tumor suppressor p53. Apparently, MDM2 is often overexpressed in sarcomas, and MDM2 inhibitors may also inhibit angiogenesis, so this trial didn’t seem totally unreasonable. We found this article quite useful (although not very recent): Targeting the MDM2-p53 Interaction for Cancer Therapy. Elisa has just finished the second round of IV treatments, which are given every four weeks. Side effects have been relatively minor so far (mostly fatigue). The first follow-up CT scan will be done in a bit more than two weeks, and we will of course post any noteworthy results.
What is perhaps also of interest: Elisa’s oncologist tried to get her into a trial with an AKT inhibitor (AZD5363), but there was no AKT gene mutation detected in the tumor sample, so she could not get into this trial. By the way, is there a shared feeling on the board regarding next generation sequencing tests? Rachel’s experience is interesting, and we are wondering whether others have had similar experiences. We came across this article on molecular profiling of soft tissue sarcoma, but ASPS was not included.
We have also been trying to get Elisa a spot in a trial testing a PD-1 or PD-L1 antibody, and she has been put on the wait list for one of them. We will try even harder after the extremely encouraging results experienced by Rachel and others (thanks so much for sharing them on the forum!).
Resecting the large primary is still not our first option (although we do keep in mind that some drugs might work better with a lower overall tumour burden in the body), and we will continue to try to find a systemic treatment that shrinks the tumor first. Elisa had another appointment with a specialized sarcoma surgeon a few weeks ago, and he advised once more against a surgery. He felt that her quality of life would most likely be drastically diminished because of the significant portion of the muscles that would have to be removed.
All the best,
Johannes
Re: Elisa - Dx 2010
Johannes, thank you very much for an update and we are going to wait for the scan results with the great hope for Elisa and interest.
I am somehow a bit concern about the negative advice from the surgeon re. possible resection of the primary tumor, especially since it became painful and affects the quality of life. The symptoms are a very important signs of the sarcoma development, the increased level of pain may signify it grows into the bone or vessels etc. so I would not take it lightly. The loss of the muscle is not an end of the universe and we even have members who had an amputation to preserve the life and to increase the quality of life. I would consult more surgeons. May be the isolated limb chemoinfusion or neutron radiation therapy could be looked at in attempt to reduce the size before it get resected. Ivan lost 2 muscles and regained full range of motion by training, we have numerous members who lost 1 or 2 leg muscles and are doing just fine.
I also came across this very new article reviewing Immunotherapy for the micro sarcoma lung metastases (it is of interest to me now as all Ivan's bigger lung mets are resected or ablated by now) and the author mentions as a recognized matter of fact that "the efficacy of immunotherapy in experimental models is greatest with the smallest tumor burdens." We spoke of it before here that we feel it that way, but now the general medical community is starting to recognize it as a fact.
Immunotherapy for Resected Pulmonary Metastases.
https://www.ncbi.nlm.nih.gov/pubmed/26611512
I am somehow a bit concern about the negative advice from the surgeon re. possible resection of the primary tumor, especially since it became painful and affects the quality of life. The symptoms are a very important signs of the sarcoma development, the increased level of pain may signify it grows into the bone or vessels etc. so I would not take it lightly. The loss of the muscle is not an end of the universe and we even have members who had an amputation to preserve the life and to increase the quality of life. I would consult more surgeons. May be the isolated limb chemoinfusion or neutron radiation therapy could be looked at in attempt to reduce the size before it get resected. Ivan lost 2 muscles and regained full range of motion by training, we have numerous members who lost 1 or 2 leg muscles and are doing just fine.
I also came across this very new article reviewing Immunotherapy for the micro sarcoma lung metastases (it is of interest to me now as all Ivan's bigger lung mets are resected or ablated by now) and the author mentions as a recognized matter of fact that "the efficacy of immunotherapy in experimental models is greatest with the smallest tumor burdens." We spoke of it before here that we feel it that way, but now the general medical community is starting to recognize it as a fact.
Immunotherapy for Resected Pulmonary Metastases.
https://www.ncbi.nlm.nih.gov/pubmed/26611512
Olga
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Elisa - Dx 2010
Dear Johannes,
Thank you for your very thoughtful update and all of the shared information on potential new systemic treatments for Elisa. I share Olga's concern about the surgeon's negative advice regarding resection of Elisa's increasingly painful and growing primary tumor for all of the very significant reasons which she has given. I continue to be perplexed as to why it is not obvious to the doctors that the presence of the primary tumor and the large tumor burden associated with it is interfering with the effectiveness of the several systemic treatments which have ultimately unfortunately failed for Elisa. Based on our extensive research and observations of many ASPS patients, Olga and I have always felt and advocated that removal of the primary tumor is critically important to better enable systemic treatments to be effective and successful in shrinking and destroying other mets, and the article which she shared now provides confirmation of this fact. As I have told you and others on this Board many times before, every patient who I am personally aware of who did not have their primary tumor resected ultimately tragically lost their courageous battles. As Olga has indicated, the loss of muscle or even possibly the loss of a limb may be necessary to help preserve the patient's Life and to increase the quality of Life, and a preferable option to losing one's Life. It is of course my greatest Hope that one of the new systemic treatments which you are exploring for Elisa would/could be effective in shrinking and destroying Elisa's large primary tumor as well as her other mets, but unfortunately the evidence regarding the negative impact of tumor burden on the effectiveness of systemic treatments does not support this Hope, and I agree with Olga's wise recommendation for you to seek consultation with other surgeons, or to explore the possibility of isolated limb chemoinfusion or neutron radiation therapy in an attempt to reduce the size of the primary tumor before it is resected. In the meantime, I Hope that Elisa continues to tolerate her new MDM2 infusions treatment well with only minor side effects , and I will be holding very tight to Hope that the treatment will prove to be successful and will be anxiously awaiting your next update and her scan results following her scans in two weeks. Take care dear Johannes and have a beautiful Holiday season. With deepest caring, healing wishes for Elisa, warm friendship, and continued Hope,
Bonni
Thank you for your very thoughtful update and all of the shared information on potential new systemic treatments for Elisa. I share Olga's concern about the surgeon's negative advice regarding resection of Elisa's increasingly painful and growing primary tumor for all of the very significant reasons which she has given. I continue to be perplexed as to why it is not obvious to the doctors that the presence of the primary tumor and the large tumor burden associated with it is interfering with the effectiveness of the several systemic treatments which have ultimately unfortunately failed for Elisa. Based on our extensive research and observations of many ASPS patients, Olga and I have always felt and advocated that removal of the primary tumor is critically important to better enable systemic treatments to be effective and successful in shrinking and destroying other mets, and the article which she shared now provides confirmation of this fact. As I have told you and others on this Board many times before, every patient who I am personally aware of who did not have their primary tumor resected ultimately tragically lost their courageous battles. As Olga has indicated, the loss of muscle or even possibly the loss of a limb may be necessary to help preserve the patient's Life and to increase the quality of Life, and a preferable option to losing one's Life. It is of course my greatest Hope that one of the new systemic treatments which you are exploring for Elisa would/could be effective in shrinking and destroying Elisa's large primary tumor as well as her other mets, but unfortunately the evidence regarding the negative impact of tumor burden on the effectiveness of systemic treatments does not support this Hope, and I agree with Olga's wise recommendation for you to seek consultation with other surgeons, or to explore the possibility of isolated limb chemoinfusion or neutron radiation therapy in an attempt to reduce the size of the primary tumor before it is resected. In the meantime, I Hope that Elisa continues to tolerate her new MDM2 infusions treatment well with only minor side effects , and I will be holding very tight to Hope that the treatment will prove to be successful and will be anxiously awaiting your next update and her scan results following her scans in two weeks. Take care dear Johannes and have a beautiful Holiday season. With deepest caring, healing wishes for Elisa, warm friendship, and continued Hope,
Bonni
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danieldew7
- New Member
- Posts: 86
- Joined: Wed Nov 26, 2014 11:56 pm
Re: Elisa - Dx 2010
Dear Johannes,
I'm not a specialist in this case but on July 2014 I was diagnoses with stage 2 on my right thigh and have less than 6 mets in my lungs, and the doc. said I have to get surgery immediately right after biopsy. Usually we have to wait for a month for surgery in Seoul Nat. Univ. Hospital but the doc. scheduled me the very next week due to the urgency of removing the primary.
Please ask another onco. if you have time.
I'm not a specialist in this case but on July 2014 I was diagnoses with stage 2 on my right thigh and have less than 6 mets in my lungs, and the doc. said I have to get surgery immediately right after biopsy. Usually we have to wait for a month for surgery in Seoul Nat. Univ. Hospital but the doc. scheduled me the very next week due to the urgency of removing the primary.
Please ask another onco. if you have time.
Re: Elisa - Dx 2010
Dear Olga, Bonni and Daniel,
Many thanks for your quick and thoughtful responses.
We have consulted several specialists (oncologists, surgeons and radio-oncologists) over the years, in Canada, the US, Europe and Australia (where we lived last year). None of them recommended resecting the primary in Elisa's case, although everyone agreed that it would, in principle, be a good idea. Regarding the effectiveness of a systemic treatment, we were still hoping to see a similar response than the one Elisa had on Cediranib, when both her lung mets and the primary shrunk significantly. I believe that hers was one of the best initial responses reported by Kummar et al. about the Cediranib trial at the NIH.
The results from the CT scan after the first two months on the MDM2 inhibitor were not overly encouraging. Although all the lung mets seem to be stable, one "nodal mass" has increased in size by 5mm. Apparently it's not clear whether this mass is a lymph node infiltrated by tumor cells or whether this is only an inflammatory reaction. In any event, it is troubling and we will have to keep a close eye on it. Because of this increase, the next CT scan will be done after 4 weeks, instead of 8. We are still trying to get a spot in a PD-1 or PD-L1 trial, but so far we haven't had any luck.
Once again, I was wondering if there are any views on sequencing tests?
With our very best wishes for 2016!
Johannes
Many thanks for your quick and thoughtful responses.
We have consulted several specialists (oncologists, surgeons and radio-oncologists) over the years, in Canada, the US, Europe and Australia (where we lived last year). None of them recommended resecting the primary in Elisa's case, although everyone agreed that it would, in principle, be a good idea. Regarding the effectiveness of a systemic treatment, we were still hoping to see a similar response than the one Elisa had on Cediranib, when both her lung mets and the primary shrunk significantly. I believe that hers was one of the best initial responses reported by Kummar et al. about the Cediranib trial at the NIH.
The results from the CT scan after the first two months on the MDM2 inhibitor were not overly encouraging. Although all the lung mets seem to be stable, one "nodal mass" has increased in size by 5mm. Apparently it's not clear whether this mass is a lymph node infiltrated by tumor cells or whether this is only an inflammatory reaction. In any event, it is troubling and we will have to keep a close eye on it. Because of this increase, the next CT scan will be done after 4 weeks, instead of 8. We are still trying to get a spot in a PD-1 or PD-L1 trial, but so far we haven't had any luck.
Once again, I was wondering if there are any views on sequencing tests?
With our very best wishes for 2016!
Johannes
Re: Elisa - Dx 2010
Johannes, thank you for additional information that helps to understand the possible complexity of the resection we propose. I have a question - have you consulted after the primary shrunk significantly on cediranib or before? People often use the situation when the primary shrinks on the treatment as an opening in the window of opportunity for the resection. Oncologists are in general not supportive of the complex primary resections when there is already systemic metastatic stage of the disease, and the advanced sarcoma surgeons are the people to consult directly.
Olga
Re: Elisa - Dx 2010
Johannes and Elisa
Thanks so much for update
I'd like to hear of next CT scan when you get a moment
In reference to Elisa's primary. What is its current size?
It looks like sequencing , as my limited knowledge allows me, will possibly be as easy as a blood test?
My feeling is you can never have enough info to make decisions on the stab in the dark treatments that our loved ones have to some times endure .
http://www.genome.gov/27556716
My prayers are that they aren't cost prohibitive.
Love
Debbie
Ps
What are your thoughts on sequencing?
Proteins need to be addressed as they along with enzymes drive the sarcoma to live in the metastatic sites prior to becoming vascular , right?
Thanks so much for update
I'd like to hear of next CT scan when you get a moment
In reference to Elisa's primary. What is its current size?
It looks like sequencing , as my limited knowledge allows me, will possibly be as easy as a blood test?
My feeling is you can never have enough info to make decisions on the stab in the dark treatments that our loved ones have to some times endure .
http://www.genome.gov/27556716
My prayers are that they aren't cost prohibitive.
Love
Debbie
Ps
What are your thoughts on sequencing?
Proteins need to be addressed as they along with enzymes drive the sarcoma to live in the metastatic sites prior to becoming vascular , right?
Last edited by D.ap on Mon Jan 04, 2016 10:55 am, edited 1 time in total.
Debbie
Re: Elisa - Dx 2010
Dear Olga,
We consulted several specialists, including sarcoma surgeons, both before and after the Cediranib treatment. As I said, the last consultation was only a few weeks ago.
Right after the initial good response in 2010, i.e. after a few months on Cediranib, would probably have been the best moment to have the surgery done. But I guess we hoped for further shrinkage, and we were also concerned about a possible rebound effect and growth in the lungs if they were left untreated for some time (and Elisa would not have been able to get back into the NIH trial).
Thanks,
Johannes
We consulted several specialists, including sarcoma surgeons, both before and after the Cediranib treatment. As I said, the last consultation was only a few weeks ago.
Right after the initial good response in 2010, i.e. after a few months on Cediranib, would probably have been the best moment to have the surgery done. But I guess we hoped for further shrinkage, and we were also concerned about a possible rebound effect and growth in the lungs if they were left untreated for some time (and Elisa would not have been able to get back into the NIH trial).
Thanks,
Johannes
Re: Elisa - Dx 2010
Johannes -
I am following your case, I started reading as my 9yr old daughter will be starting Cerdinib trial next week at NIH. Thanks so much for sharing your journey - it has helped me to read everything you have tried. It seems no ASPS case is the same, but a person can learn alot reading about experiences of others.
I totally understand being hesitate to remove the primary in your case, causing major life changing conditions. I think she had a lot of value in her ability to be active by having her leg in good condition, I think it is/was a wise choice at every stage you described.
I am interested in your next steps - it seems like geno type profiling and PDL theory are the major players for latest treatment options.
Sending positive energies your way - please take care -
MJ
I am following your case, I started reading as my 9yr old daughter will be starting Cerdinib trial next week at NIH. Thanks so much for sharing your journey - it has helped me to read everything you have tried. It seems no ASPS case is the same, but a person can learn alot reading about experiences of others.
I totally understand being hesitate to remove the primary in your case, causing major life changing conditions. I think she had a lot of value in her ability to be active by having her leg in good condition, I think it is/was a wise choice at every stage you described.
I am interested in your next steps - it seems like geno type profiling and PDL theory are the major players for latest treatment options.
Sending positive energies your way - please take care -
MJ