Nhi from NY - Dx June 2016
Re: Nhi from NY dx 6/2016
Glad to hear your brain scan came back clear. Hope you're enjoying your summer.
Re: Nhi from NY dx 6/2016
Nhi
Sure happy for you!
Not always an easy descion. All of our first inclinations were to do EVERYTHING possible to make sure we've taken care of the offeneding tumor.It's human nature. However with the scan scheudle being every 3 months? , that in itself is the best choice to avoid secondery damage. A good cost/benefit descion.
September scan chest /pelvic CT or MRI?
Love
Debbie
Sure happy for you!
Not always an easy descion. All of our first inclinations were to do EVERYTHING possible to make sure we've taken care of the offeneding tumor.It's human nature. However with the scan scheudle being every 3 months? , that in itself is the best choice to avoid secondery damage. A good cost/benefit descion.
September scan chest /pelvic CT or MRI?
Love
Debbie
Debbie
Re: Nhi from NY dx 6/2016
Thanks for the responses Debbie and Jenny. I am scheduled for a chest CT and pelvic MRI in September, Debbie. I think if the scans are clear, I am going to try to get pregnant although I know the risk is high especially in the first 2 years. It's just going to be a risk I have to take and maybe get a CXR and MRI during the pregnancy to monitor.
Re: Nhi from NY dx 6/2016
Hi everyone,
I wanted to give you all an update. On 10/5/16 I had my MRI pelvis and CT chest done. Unfortunately, they saw about 15 lung nodules that are suspicious for mets, the largest ones are a 7mm left lower lobe nodule, 7mm subpleural right middle lobe nodule and a 4mm right lower lobe nodule. The MRI of the primary site did not show any local recurrence and pelvis was clear (thank goodness). I saw my oncologist yesterday and he sat down with me to go over the scans. It looked like 2 of the lesions that grew had been there from the initial scan which almost doubled in size. Of course this was very sad news, but my oncologist seemed optimistic. He will start me on Sutent 37.5mg a day and have me f/u in 2 weeks to check blood work. I will have a repeat CT chest in about 4-6 weeks to check for response. Hopefully the medication will shrink the tumors. We did discuss getting a biopsy to confirm that it's metastatic disease, but given the predictable presentation, we decided to just start the treatment since the lesions appear be to difficult to biopsy anyway. We will discuss surgery in the future if I don't respond to the medication. He did not recommend that I get any other scans done at this time.
If anyone has had experience with Sutent, I would love to hear from you to see how you responded to the medication. I know there is a separate section about the drug in the forum that I will read as well. I am posting this while having a really bad cold and being at work, so I don't sound too lively, but I will keep updating. I hope everyone had a great summer!
I wanted to give you all an update. On 10/5/16 I had my MRI pelvis and CT chest done. Unfortunately, they saw about 15 lung nodules that are suspicious for mets, the largest ones are a 7mm left lower lobe nodule, 7mm subpleural right middle lobe nodule and a 4mm right lower lobe nodule. The MRI of the primary site did not show any local recurrence and pelvis was clear (thank goodness). I saw my oncologist yesterday and he sat down with me to go over the scans. It looked like 2 of the lesions that grew had been there from the initial scan which almost doubled in size. Of course this was very sad news, but my oncologist seemed optimistic. He will start me on Sutent 37.5mg a day and have me f/u in 2 weeks to check blood work. I will have a repeat CT chest in about 4-6 weeks to check for response. Hopefully the medication will shrink the tumors. We did discuss getting a biopsy to confirm that it's metastatic disease, but given the predictable presentation, we decided to just start the treatment since the lesions appear be to difficult to biopsy anyway. We will discuss surgery in the future if I don't respond to the medication. He did not recommend that I get any other scans done at this time.
If anyone has had experience with Sutent, I would love to hear from you to see how you responded to the medication. I know there is a separate section about the drug in the forum that I will read as well. I am posting this while having a really bad cold and being at work, so I don't sound too lively, but I will keep updating. I hope everyone had a great summer!
Re: Nhi from NY dx 6/2016
Nhi, I am very sorry that you got this news. You were very well aware that most of the ASPS patients get to that metastatic stage but we all hope to get into that small number that won't. Ivan also was diagnosed with the multiple lung metastases few months after the primary resected, it was 13 years ago.
Now about the Sutent versus other drugs versus surgery. There are no known cases of complete sustained response to Sutent (as far as I know - did the oncologist provide any supportive articles?)- but there are cases of stability and partial response but the resistance develops eventually if they respond with the danger of the increase speed of growth after they became resistant. So there is a choice - to go on the TKI hoping for the response - Sutent, pazopanib or cediranib trial (Brittany got a complete response sustained for 5 or more years now), go for the Immune checkpoint inhibitors ICI (PD-1 and PD-L1 targeting drugs) on a trial in Miami or off label by prescr. or to try to get a surgery in Germany with Dr.Rolle's replacement dr.Brewes (http://www.cureasps.org/forum/viewforum.php?f=51).
We went the laser assisted surgery route and it has been pretty good for Ivan with the good quality of life. Laser assisted surgery is only avail. on a certain size and without other metastatic sites so there is a limited window of opportunity.
Now about the Sutent versus other drugs versus surgery. There are no known cases of complete sustained response to Sutent (as far as I know - did the oncologist provide any supportive articles?)- but there are cases of stability and partial response but the resistance develops eventually if they respond with the danger of the increase speed of growth after they became resistant. So there is a choice - to go on the TKI hoping for the response - Sutent, pazopanib or cediranib trial (Brittany got a complete response sustained for 5 or more years now), go for the Immune checkpoint inhibitors ICI (PD-1 and PD-L1 targeting drugs) on a trial in Miami or off label by prescr. or to try to get a surgery in Germany with Dr.Rolle's replacement dr.Brewes (http://www.cureasps.org/forum/viewforum.php?f=51).
We went the laser assisted surgery route and it has been pretty good for Ivan with the good quality of life. Laser assisted surgery is only avail. on a certain size and without other metastatic sites so there is a limited window of opportunity.
Olga
Re: Nhi from NY dx 6/2016
Hi Olga,
He did not give any supporting articles, just said that he has been treating ASPS patients for over 20 years and have most of them on Sutent with good response. He did not say exactly how many patients he has on it, but it sounds like several and he said that they are either in partial remission or in remission and he has not lost any patients yet. The longest surviving patient he has on it is about 20-25 years. He also mentioned that Sutent is the only drug approved for this so anything else would be very costly if it is off label. I did ask about surgical options which he states we can think about if I don't respond to the Sutent. Do you think that I should try for surgery first? It is difficult to make this decision with what to go with first. I have 3 lesions that are the 7mm and 4mm sizes and the other ones are very small or undetectable (I am sure there are more that are not visible on CT). Would they be able to do this surgery in Germany with this size?
He did not give any supporting articles, just said that he has been treating ASPS patients for over 20 years and have most of them on Sutent with good response. He did not say exactly how many patients he has on it, but it sounds like several and he said that they are either in partial remission or in remission and he has not lost any patients yet. The longest surviving patient he has on it is about 20-25 years. He also mentioned that Sutent is the only drug approved for this so anything else would be very costly if it is off label. I did ask about surgical options which he states we can think about if I don't respond to the Sutent. Do you think that I should try for surgery first? It is difficult to make this decision with what to go with first. I have 3 lesions that are the 7mm and 4mm sizes and the other ones are very small or undetectable (I am sure there are more that are not visible on CT). Would they be able to do this surgery in Germany with this size?
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Nhi from NY dx 6/2016
Dear Nhi,
I am very sorry, but unfortunately not surprised that your recent scans showed lung mets since ASPS is a metastatic disease and it usually metastasizes to the lungs first. Olga has shared some excellent information and insights with you. As she indicated, Sutent has unfortunately not shown to be very effective in shrinking/destroying mets and providing sustained long term disease stability for the several patients on this Board who have been treated with it, which is why I am very surprised by the data that your oncologist gave you regarding the apparently successful responses of most of his ASPS patients to Sutent. Is your oncologist still Dr. Gounder at MSK? I Hope that he has some documented data to confirm his claims which would be very interesting and important to review. If he truly has had this type of incredible ASPS patient treatment success with Sutent, I would think that he has published a report/abstract in a medical journal and/or presented at ASCO which would be very exciting and welcome for everyone to hear about. I personally have not heard anything about this kind of a very significant and successful ASPS patient response to Sutent, including at the recent ASPS Workshop which I attended in Miami where up to date ASPS treatment information was provided by international highly respected and experienced ASPS oncologists, researchers, educators, and pathologists. I encourage you to research as much information as possible about ASPS patient treatment results with Sutent including the thoughtfully shared anecdotal Sutent treatment experiences and results of the patients on this Board. Of course each patient is different and may have a different response to the same drug. I also encourage you to have your primary tumor tissue tested to determine the biological make up of the tumor. Sunitinib, Pazopanib, and Cediranib are targeted Tyrosine Kinase Inhibitor (TKI) drugs which all target VEGF so it would be helpful to know if your tumor is high in VEGF which might possibly be an indicator of whether or not your disease may have a successful response to Sunitinib, as was the case with Brittany whose tumor tested high for VEGF and has VERY thankfully thus far had a very successful and sustained response to Cediranib, but yet had a failed response to ARQ-197 which targets C-met and interestingly, Brittany's tumor tested low for C-met. I personally feel that you should postpone a systemic treatment at this time since there are unfortunately currently no known completely successful systemic treatments for ASPS. I know far too well the desperate desire/need to find a treatment that will completely rid/cure your body of this insidious disease, but to my knowledge, sadly there is nothing currently available that will do that. Since your lung mets are relatively small in size and number, and you don't have any other metastasis at this time, I, like Olga, personally recommend that you explore laser resection of your lung mets to try to remove as many lung mets as possible and reduce your body's tumor burden. As Olga said, her son Ivan has successfully controlled his disease for many years with laser resection and cryoablation of his lung mets, and no systemic treatment thus far. Unfortunately, he did develop some brain, adrenal gland, and pancreatic mets during the past couple of years, but he was thankfully able to have them successfully treated with cryoablation and resection, and still no systemic treatment. The best treatment approach for ASPS at this time seems to be resection/ablation/or radiosurgery unless mets develop in unresectable/unablatable/or otherwise untreatable areas which was the case with Brittany when she developed an unresectable/unablatable/untreatable met in the head of her pancreas which forced us to seek systemic treatment with Cediranib. Vigilant and appropriate regular scans remain one of the most effective weapons to successfully manage this very challenging disease and find mets at their smallest most treatable size, and dedicated research and active networking/communicating with other ASPS patients/families provides invaluable anecdotal treatment information to help guide you in trying to make the best treatment decision. My very best wishes are with you as you struggle to make your treatment decision dear Nhi, and I will be anxiously awaiting the result of your decision and your treatment plans. In the meantime, take care, stay strong and pro-active, and keep in touch as you are able.
With special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni
I am very sorry, but unfortunately not surprised that your recent scans showed lung mets since ASPS is a metastatic disease and it usually metastasizes to the lungs first. Olga has shared some excellent information and insights with you. As she indicated, Sutent has unfortunately not shown to be very effective in shrinking/destroying mets and providing sustained long term disease stability for the several patients on this Board who have been treated with it, which is why I am very surprised by the data that your oncologist gave you regarding the apparently successful responses of most of his ASPS patients to Sutent. Is your oncologist still Dr. Gounder at MSK? I Hope that he has some documented data to confirm his claims which would be very interesting and important to review. If he truly has had this type of incredible ASPS patient treatment success with Sutent, I would think that he has published a report/abstract in a medical journal and/or presented at ASCO which would be very exciting and welcome for everyone to hear about. I personally have not heard anything about this kind of a very significant and successful ASPS patient response to Sutent, including at the recent ASPS Workshop which I attended in Miami where up to date ASPS treatment information was provided by international highly respected and experienced ASPS oncologists, researchers, educators, and pathologists. I encourage you to research as much information as possible about ASPS patient treatment results with Sutent including the thoughtfully shared anecdotal Sutent treatment experiences and results of the patients on this Board. Of course each patient is different and may have a different response to the same drug. I also encourage you to have your primary tumor tissue tested to determine the biological make up of the tumor. Sunitinib, Pazopanib, and Cediranib are targeted Tyrosine Kinase Inhibitor (TKI) drugs which all target VEGF so it would be helpful to know if your tumor is high in VEGF which might possibly be an indicator of whether or not your disease may have a successful response to Sunitinib, as was the case with Brittany whose tumor tested high for VEGF and has VERY thankfully thus far had a very successful and sustained response to Cediranib, but yet had a failed response to ARQ-197 which targets C-met and interestingly, Brittany's tumor tested low for C-met. I personally feel that you should postpone a systemic treatment at this time since there are unfortunately currently no known completely successful systemic treatments for ASPS. I know far too well the desperate desire/need to find a treatment that will completely rid/cure your body of this insidious disease, but to my knowledge, sadly there is nothing currently available that will do that. Since your lung mets are relatively small in size and number, and you don't have any other metastasis at this time, I, like Olga, personally recommend that you explore laser resection of your lung mets to try to remove as many lung mets as possible and reduce your body's tumor burden. As Olga said, her son Ivan has successfully controlled his disease for many years with laser resection and cryoablation of his lung mets, and no systemic treatment thus far. Unfortunately, he did develop some brain, adrenal gland, and pancreatic mets during the past couple of years, but he was thankfully able to have them successfully treated with cryoablation and resection, and still no systemic treatment. The best treatment approach for ASPS at this time seems to be resection/ablation/or radiosurgery unless mets develop in unresectable/unablatable/or otherwise untreatable areas which was the case with Brittany when she developed an unresectable/unablatable/untreatable met in the head of her pancreas which forced us to seek systemic treatment with Cediranib. Vigilant and appropriate regular scans remain one of the most effective weapons to successfully manage this very challenging disease and find mets at their smallest most treatable size, and dedicated research and active networking/communicating with other ASPS patients/families provides invaluable anecdotal treatment information to help guide you in trying to make the best treatment decision. My very best wishes are with you as you struggle to make your treatment decision dear Nhi, and I will be anxiously awaiting the result of your decision and your treatment plans. In the meantime, take care, stay strong and pro-active, and keep in touch as you are able.
With special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Nhi from NY dx 6/2016
Thank you Bonnie for your thoughts. After reading the forum here, I thought the same thing about getting surgery first to try to remove any mets before starting on systemic treatment. My oncologist is Dr. Gary Schwartz who now works for Columbia. He was with MSK for 25 years and is considered an expert in sarcoma. I did have a second opinion regarding radiation therapy at MSK, so perhaps I will go there again for a second opinion prior to starting on Sutent. I will also ask Dr. Schwartz more details about the patients he is treating for ASPS and their specific responses, but I was definitely surprised at how positive he seemed to be and how confident he was that I would do well with this drug. It seems that no one is testing for any specific markers here (I asked about it at MSK and Columbia) so I will have to ask again. Do we know of any surgeons in the U.S. that would do the type of surgery that Dr. Rolle did in Germany? If I can explore surgical options in the U.S. I would rather do that than fly outside the country, but will do so if I must. It is very tough for me as I am still working full time, putting in many hours. My husband and I are buying a new house as well. It will be tough financially to be able to afford the surgery so I want to make sure that it would be the best option for me at this time. I just hate how there are no right answers when it comes to this horrible disease. I am very thankful for your input/advise and support.
Re: Nhi from NY dx 6/2016
Nhi - you will have to decide for yourself eventually. Just review all the options before going on some. The size is perfect for the laser assisted surgery - they burn the smaller mets on spot and smaller ones are better for it. You can ask to be evaluated first and to think about it later if the answer is positive. There are no laser assisted skilled surgeons in US, it is mostly avail. in Germany, Austria, UK and France with the most experience in Germany.
About Sutent - it is not the only one approved TKI, Pazopanib is also approved and often prescribed to our patients. Off label does not mean that the patient has to pay out of pocket it means that the oncologist is prescribing it off label if he has a reason to believe the patient would benefit from it - we sometime even provide direct doctor to doctor contact info from our patients who had a response to some drug so someone else can have it too or there is some single case published article about it. I am a bit confused how any oncologist can not loose ANY ASPS patient in his life time if we loose them every year here. Also Sutent is a relatively new drug and no patient can be on it for 20-25 years. They can only be on it for a few years - but if your oncologist has his own data I would really interested to know it as we do not really have that positive experience with Sutent here - all respondents have developed resistance and it is pretty dangerous. I am not saying he is wrong, I am just very interested to know if we might be mistaken about it. You should ask him very direct questions - how long is the longest responding patient is on it for, what happened to the ones that have developed accrued resistance. May be they have been operated on after that and non-responding or fast growing metastases were resected?
About Sutent - it is not the only one approved TKI, Pazopanib is also approved and often prescribed to our patients. Off label does not mean that the patient has to pay out of pocket it means that the oncologist is prescribing it off label if he has a reason to believe the patient would benefit from it - we sometime even provide direct doctor to doctor contact info from our patients who had a response to some drug so someone else can have it too or there is some single case published article about it. I am a bit confused how any oncologist can not loose ANY ASPS patient in his life time if we loose them every year here. Also Sutent is a relatively new drug and no patient can be on it for 20-25 years. They can only be on it for a few years - but if your oncologist has his own data I would really interested to know it as we do not really have that positive experience with Sutent here - all respondents have developed resistance and it is pretty dangerous. I am not saying he is wrong, I am just very interested to know if we might be mistaken about it. You should ask him very direct questions - how long is the longest responding patient is on it for, what happened to the ones that have developed accrued resistance. May be they have been operated on after that and non-responding or fast growing metastases were resected?
Olga
Re: Nhi from NY dx 6/2016
This is all very informative. Just like the last decision I made with opting out of radiation therapy, I would definitely not want to rush into any decisions especially if they will have an impact on my future response to treatment. He did say that we can still discuss surgery after being on the medication. The surgical option sounds the best if I can avoid taking systemic medications because that is the only proven effective treatment. I will contact Dr. Drewe to see what he thinks about my case and also talk to Dr. Schwartz to get more information. I can also schedule a second opinion with the doctors from MSK and then go from there. Thank you for all your help and input.
Re: Nhi from NY dx 6/2016
So I asked my oncologist these questions. He said he is currently treating 6 ASPS patients and over the course of his career (over 30 years experience) he has either had direct or indirect care with about 30 ASPS patients. He does have many publications (you can search him online). He stated that he has tried other medications in the past but found that Sutent had the best response (based on his experience) and that the side effects are more tolerable than the other TKIs. He is aware of the trials going on with the new immunotherapy drugs of course and is pro-surgical options. He just told me that he reason he wants to try Sutent first is to decrease my tumor load and consider different surgical interventions after. He said that me being on Sutent is not going to prevent me from being able to get surgery. He is aware that there has been cases of resistance and usually he would switch to a different TKI or consider or interventions. It was a brief conversation on the phone as he called me promptly an hour after I sent him a very long e-mail and I was at work (seeing my last patient) so I had to rush to get off the phone. He seemed very compassionate and understood exactly why I was asking all of these questions and urged me to seek a second opinion if need me. Regarding the tumor testing, he said they have done that in the past and it did not correlate well with the patients' response to treatments so it is not reliable. I am going to schedule an appointment with MSK for a second opinion (although they all did speak highly of him as he actually trained the oncologist I saw - Dr. Gounder). However, I do have to exhaust all of my options before making the final decision. I will keep everyone updated. Thank you again for all of your responses and information. It is greatly appreciated.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Nhi from NY dx 6/2016
Dear Nhi,
Thank you for all of the additional shared information. You are to be commended for being so pro-active and for so promptly pursuing answers to the questions that were raised on this Board in order to enable you to make the best treatment decision for your individual situation. I did some internet research on Dr. Schwartz and was very impressed by his expertise and experience. I am grateful that he has been so responsive to your questions and concerns, and that you find him to be very compassionate and caring which is extremely important. I agree with his recommendation for you to seek a second opinion to assist you in making your treatment decision as it is very helpful to have as much input as possible because the treatment decisions are critically important and can have a huge impact on the direction and outcome of your ASPS battle. Based on the anecdotal information provided by the patients on this Forum and those who I have closely followed who have been treated with Sutent, I agree that the patients did have an initial response with some disease stability and usually about 20% shrinkage of their mets, but in the majority of the cases the Sutent unfortunately did not seem to provide any significant tumor shrinkage nor sustained long term disease stability and most of the patients experienced disease progression within about 6 months. Given the indolent nature of this disease, it is difficult to determine if the Sutent was actually working, or if the disease was just doing what it normally does. Once disease progression occurred, the patients discontinued the Sutent and many tried other systemic treatments, but tragically most of them ultimately lost their courageous battles. At least a couple of these patients were being treated with Sutent at MSK possibly during the time period that Dr. Schwartz was working in the Sarcoma Department there, but I do not remember/know if Dr. Schwartz was their oncologist. Regarding the tumor testing, and Dr. Schwartz saying that "they have done that in the past and it did not correlate well with the patients' response to treatments so it is not reliable", we were told the same thing by Brittany's Clinical Trial oncologist at UCSF when Brittany was in the ARQ-197 Clinical Trial there. However in spite of the doctor's negative and skeptical opinion about the possible benefits of tumor tissue testing, we went forward with having Brittany's preserved primary tumor tissue tested anyway feeling that we needed some scientific basis on which to make critical treatment decisions. Although it may be coincidental, the fact that her tumor tested low for C-met and she had a fairly immediate failed response to the C-met targeting ARQ-197, and that her tumor tested high for VEGF and she has thus far VERY thankfully had a very successful response to the VEGF targeting Cediranib, is very interesting and I personally feel is worthy of consideration regarding the question of the possibility of the value of tumor tissue testing. As with everything with this very challenging disease, there remain many more questions than answers which is what makes treatment decisions so very difficult. As Olga said, "you will have to decide for yourself eventually". Unfortunately there aren't any 100% definitive answers or guarantees with any of the currently available treatment options, but I encourage you to continue to be very pro-active in exploring all of the options and obtaining as much researched and anecdotal experience/results information as possible before going forward with your treatment decision. In the meantime, take care dear Nhi and keep in touch as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
Thank you for all of the additional shared information. You are to be commended for being so pro-active and for so promptly pursuing answers to the questions that were raised on this Board in order to enable you to make the best treatment decision for your individual situation. I did some internet research on Dr. Schwartz and was very impressed by his expertise and experience. I am grateful that he has been so responsive to your questions and concerns, and that you find him to be very compassionate and caring which is extremely important. I agree with his recommendation for you to seek a second opinion to assist you in making your treatment decision as it is very helpful to have as much input as possible because the treatment decisions are critically important and can have a huge impact on the direction and outcome of your ASPS battle. Based on the anecdotal information provided by the patients on this Forum and those who I have closely followed who have been treated with Sutent, I agree that the patients did have an initial response with some disease stability and usually about 20% shrinkage of their mets, but in the majority of the cases the Sutent unfortunately did not seem to provide any significant tumor shrinkage nor sustained long term disease stability and most of the patients experienced disease progression within about 6 months. Given the indolent nature of this disease, it is difficult to determine if the Sutent was actually working, or if the disease was just doing what it normally does. Once disease progression occurred, the patients discontinued the Sutent and many tried other systemic treatments, but tragically most of them ultimately lost their courageous battles. At least a couple of these patients were being treated with Sutent at MSK possibly during the time period that Dr. Schwartz was working in the Sarcoma Department there, but I do not remember/know if Dr. Schwartz was their oncologist. Regarding the tumor testing, and Dr. Schwartz saying that "they have done that in the past and it did not correlate well with the patients' response to treatments so it is not reliable", we were told the same thing by Brittany's Clinical Trial oncologist at UCSF when Brittany was in the ARQ-197 Clinical Trial there. However in spite of the doctor's negative and skeptical opinion about the possible benefits of tumor tissue testing, we went forward with having Brittany's preserved primary tumor tissue tested anyway feeling that we needed some scientific basis on which to make critical treatment decisions. Although it may be coincidental, the fact that her tumor tested low for C-met and she had a fairly immediate failed response to the C-met targeting ARQ-197, and that her tumor tested high for VEGF and she has thus far VERY thankfully had a very successful response to the VEGF targeting Cediranib, is very interesting and I personally feel is worthy of consideration regarding the question of the possibility of the value of tumor tissue testing. As with everything with this very challenging disease, there remain many more questions than answers which is what makes treatment decisions so very difficult. As Olga said, "you will have to decide for yourself eventually". Unfortunately there aren't any 100% definitive answers or guarantees with any of the currently available treatment options, but I encourage you to continue to be very pro-active in exploring all of the options and obtaining as much researched and anecdotal experience/results information as possible before going forward with your treatment decision. In the meantime, take care dear Nhi and keep in touch as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Nhi from NY dx 6/2016
Hi everyone,
I have been following the threads from other stories but have not been able to offer much advice since I am very new to this disease. I just thought I would post my updates.
After seeking a second opinion at MSK, Dr. Gounder agreed that surgery should be delayed at this time because we don't know the rate of growth and how many more tumors will show up within the next few months. Options are to start on TKI now vs. waiting 3 months for repeat scans to see the rate of growth then start if need vs. looking into the Miami trial (he doesn't know much about the inclusion criterias and such but likely not a viable option at this time).
I went for a fertility visit and decided to freeze my embryos in case a surrogate is needed in the future. I am 31 years old and don't know how long/what my response would be to systemic treatment and don't want to not have an opportunity to have children later. Livestrong has a fertility rescue program that significantly decreased the out of pocket cost for embryo freezing if anyone is interested.
My oncologist agreed to hold off on treatment while I am having the freezing done - hopefully will be done by mid November. He wants to re-scan my chest to establish a baseline then we will start on Sutent. I am comfortable with this decision and hopeful that I will be one of the patients that respond well. Surgery will be an option in the future if the lung nodules grow or if they are stable enough for at least 6 months. I will have to wait and see. I do not think that I want to fly to Germany at this time to get the surgery as I do agree that it is too soon to tell if I will have many more nodules in the next scan and of course it is difficult to take time off of work for travel/recovery and with the finances and all.
I will keep you posted with how I respond to sutent and the side effects when I start it.
I have been following the threads from other stories but have not been able to offer much advice since I am very new to this disease. I just thought I would post my updates.
After seeking a second opinion at MSK, Dr. Gounder agreed that surgery should be delayed at this time because we don't know the rate of growth and how many more tumors will show up within the next few months. Options are to start on TKI now vs. waiting 3 months for repeat scans to see the rate of growth then start if need vs. looking into the Miami trial (he doesn't know much about the inclusion criterias and such but likely not a viable option at this time).
I went for a fertility visit and decided to freeze my embryos in case a surrogate is needed in the future. I am 31 years old and don't know how long/what my response would be to systemic treatment and don't want to not have an opportunity to have children later. Livestrong has a fertility rescue program that significantly decreased the out of pocket cost for embryo freezing if anyone is interested.
My oncologist agreed to hold off on treatment while I am having the freezing done - hopefully will be done by mid November. He wants to re-scan my chest to establish a baseline then we will start on Sutent. I am comfortable with this decision and hopeful that I will be one of the patients that respond well. Surgery will be an option in the future if the lung nodules grow or if they are stable enough for at least 6 months. I will have to wait and see. I do not think that I want to fly to Germany at this time to get the surgery as I do agree that it is too soon to tell if I will have many more nodules in the next scan and of course it is difficult to take time off of work for travel/recovery and with the finances and all.
I will keep you posted with how I respond to sutent and the side effects when I start it.
Re: Nhi from NY dx 6/2016
Nhi
It sounds like you did an excellant job of researching as many angels as can be searched in ligh of ASPS rarity.
So glad to hear of the MRI being clear
Couldn't remember if you've had a bone scan but at some point it should be scheduled so you can have a baseline to refer to as ASPS is a life long disease to keep track of for the patient.
Are you still on sutent or had you started it?
Thanks for checking in
Love
Debbie
It sounds like you did an excellant job of researching as many angels as can be searched in ligh of ASPS rarity.
So glad to hear of the MRI being clear
Couldn't remember if you've had a bone scan but at some point it should be scheduled so you can have a baseline to refer to as ASPS is a life long disease to keep track of for the patient.
Are you still on sutent or had you started it?
Thanks for checking in
Love
Debbie
Debbie
Re: Nhi from NY dx 6/2016
Hi Debbie,
To recap, I had my brain MRI around 7/2016, Bone scan at presentation 6/2016 and both were clear. My oncologist did not want to do a repeat MRI or bone scan yet despite the new lung mets. I will ask him about it to see if we should do it in a few months just to be sure it has not spread to those sites. The most recent scans I had in October were CT chest and MRI of pelvis to check the primary site. MRI pelvis was clear and no local recurrence but lung CT showed the 15 lung nodules which were new from diagnosis. I want to get a CT abdomen repeated soon as well. I am thinking CT abdomen every 6 months and then bone scan/brain MRI annually? CT chest will be done much more frequency of course especially since I will be starting on Sutent. I plan to start on Sutent after I finish freezing my embryos which will be in about 1-2 weeks.
To recap, I had my brain MRI around 7/2016, Bone scan at presentation 6/2016 and both were clear. My oncologist did not want to do a repeat MRI or bone scan yet despite the new lung mets. I will ask him about it to see if we should do it in a few months just to be sure it has not spread to those sites. The most recent scans I had in October were CT chest and MRI of pelvis to check the primary site. MRI pelvis was clear and no local recurrence but lung CT showed the 15 lung nodules which were new from diagnosis. I want to get a CT abdomen repeated soon as well. I am thinking CT abdomen every 6 months and then bone scan/brain MRI annually? CT chest will be done much more frequency of course especially since I will be starting on Sutent. I plan to start on Sutent after I finish freezing my embryos which will be in about 1-2 weeks.