Hi everyone,
I wanted to give an update on how I am doing so far on the Cediranib trial. I have had two restages and have another one in a March, so far things have been stable no new growths, slight reduction in size but mostly the tumors they are traking have not shrunk much. Dr. Kumar told me that she thought the tumors were showing necrosis in the center and less activity on the outsides. So that is good news, although I was hoping for some reductions but maybe some reduction next month. But overall, we are thankful that there is no more new growths and the longer we can stay on the better. I was wondering if folks had some advice, besides monitoring the posts here if there were other things we shuold be doing? Perhaps pursuing further examination of my tumor cells, although I don't understand the science I need some advice on how to ask for it from my ONcologist at Kaiser.
As far as side effects, I have some bad days, cramps and fatigue seem to be the most common for me, but I try to live as normal a life I can and enjoy the moments I feel good.
again thanks for all the support and participation
Eric
Just Started Cediranib trial (Eric)
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Just Started Cediranib trial (Eric)
Dear Eric,
I am so very happy that your four month Cediranib re-staging scans showed continued stable disease and some tumor shrinkage. I know that you are disappointed that you haven't had more significant tumor shrinkage thus far, but Brittany had a similar initial experience of minimal tumor shrinkage, and then after several months she had dramatic shrinkage/ disappearance of her multiple mets so Hopefully this will be your experience also. It seems that most of the ASPS patients on Cediranib have about 30% tumor shrinkage in the first couple of months, and then it plateaus, so Dr. Sawyer said that Brittany's delayed Cediranib response was unusual. As with everything else with this unpredictable disease, each patient's situation is different and each person may respond differently to different treatments. However, it is a victory in itself that your disease has remained stable for the past five months, and I will be holding very tight to Hope that your March scans will show continued disease stability and even more tumor shrinkage. I read your nice entry to Jessie in the Personal Update section saying that you had met her on the NIH shuttle during your last visit. I am Hoping that she will update the Board sometime soon with the results of her February 14th re-staging scans, and am very Hopeful that her scans also showed continued stable disease and tumor shrinkage. I am also anxiously awaiting Mario's update as he was scheduled for his re-staging scans on February 1st, and Jordanne's mother Dotty said that they saw him at NIH then when they were there for Jordanne's scans. Everyone's shared anecdotal treatment information is so vitally important to all of us who share this challenging ASPS battle, and I am so deeply appreciative to those who graciously write to update and share. Take care dear Eric, keep enjoying the good moments in Life, and stay in touch as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
I am so very happy that your four month Cediranib re-staging scans showed continued stable disease and some tumor shrinkage. I know that you are disappointed that you haven't had more significant tumor shrinkage thus far, but Brittany had a similar initial experience of minimal tumor shrinkage, and then after several months she had dramatic shrinkage/ disappearance of her multiple mets so Hopefully this will be your experience also. It seems that most of the ASPS patients on Cediranib have about 30% tumor shrinkage in the first couple of months, and then it plateaus, so Dr. Sawyer said that Brittany's delayed Cediranib response was unusual. As with everything else with this unpredictable disease, each patient's situation is different and each person may respond differently to different treatments. However, it is a victory in itself that your disease has remained stable for the past five months, and I will be holding very tight to Hope that your March scans will show continued disease stability and even more tumor shrinkage. I read your nice entry to Jessie in the Personal Update section saying that you had met her on the NIH shuttle during your last visit. I am Hoping that she will update the Board sometime soon with the results of her February 14th re-staging scans, and am very Hopeful that her scans also showed continued stable disease and tumor shrinkage. I am also anxiously awaiting Mario's update as he was scheduled for his re-staging scans on February 1st, and Jordanne's mother Dotty said that they saw him at NIH then when they were there for Jordanne's scans. Everyone's shared anecdotal treatment information is so vitally important to all of us who share this challenging ASPS battle, and I am so deeply appreciative to those who graciously write to update and share. Take care dear Eric, keep enjoying the good moments in Life, and stay in touch as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Just Started Cediranib trial (Eric)
Glad to hear it's working well so far.equezada wrote:Hi everyone,
I wanted to give an update on how I am doing so far on the Cediranib trial. I have had two restages and have another one in a March, so far things have been stable no new growths, slight reduction in size but mostly the tumors they are traking have not shrunk much. Dr. Kumar told me that she thought the tumors were showing necrosis in the center and less activity on the outsides. So that is good news, although I was hoping for some reductions but maybe some reduction next month. But overall, we are thankful that there is no more new growths and the longer we can stay on the better. I was wondering if folks had some advice, besides monitoring the posts here if there were other things we shuold be doing? Perhaps pursuing further examination of my tumor cells, although I don't understand the science I need some advice on how to ask for it from my ONcologist at Kaiser.
As far as side effects, I have some bad days, cramps and fatigue seem to be the most common for me, but I try to live as normal a life I can and enjoy the moments I feel good.
again thanks for all the support and participation
Eric
Do you have some sort of a plan in place in case the drug stops working at some point? Perhaps the shrinkage has made resection possible
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equezada
Re: Just Started Cediranib trial (Eric)
So we got dissapointing news this week at the NIH there has been an increase in growth beyond what is acceptable in the trial and Dr Kumar thinks that the Cediranib is no longer helping me. She suggested I look into a current combo trial they have opened with a active CPT 11 and Avastin, wondering if folks have heard about this and what most of folks with ASPS are doing post Cediranib. Although are spirits are high I am dissapointed because I was hoping to be on for a few more months. Any advice would be welcome.
Thanks everyone
Eric
Thanks everyone
Eric
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Just Started Cediranib trial (Eric)
Dear Eric,
Thank you for your thoughtful update. I am so very sorry for the disappointing results of your this weeks six month Cediranib re-staging scans. Was the increased tumor growth in your liver or lung mets, or both? Since you didn't mention it, I assume that there were no new tumors seen which I am very grateful for. Is either Cryoablation or Radiofrequency Ablation a treatment possibility for your liver and/or your lung mets? If so, perhaps you could pursue ablation treatment prior to beginning a new Clinical Trial to try to address these tumors and reduce tumor load as much as possible. I am not personally familiar with the combination CPT 11/Avastin Trial which Dr. Kummar suggested to you, but Hopefully others on this Board who may know about it will write to share information. Is this Trial specifically for ASPS? I am in contact with an ASPS patient who unfortunately does not want to participate on the Board, but she is now on a Dasatanib Clinical Trial, and encouragingly her two month status scans showed stabilization of her disease and tumor shrinkage. If you are interested in communicating with her I will be glad to give you her name and e-mail address privately so that you can contact her to discuss her Dasatanib treatment experience. Also, English ASPS patient Clare Clarke seems to be having a successful response to Axitinib as far as stabilization of her disease, although she hasn't had the dramatic tumor shrinkage that has been experienced with Cediranib.
I am so glad that your spirits remain high and your attitude positive which is so very important in fighting this challenging disease. Please know Eric that I am here to try to help in any way that I can with shared information and support, and that I am Hoping that you will find a more effective treatment which will provide a much more significant, longer, and more sustained response than the Cediranib did for you. Please take care, keep holding tight to Hope, and keep in touch with the Board as you are able.
With deepest caring, special thoughts, healing wishes, and continued Hope,
Bonni
Thank you for your thoughtful update. I am so very sorry for the disappointing results of your this weeks six month Cediranib re-staging scans. Was the increased tumor growth in your liver or lung mets, or both? Since you didn't mention it, I assume that there were no new tumors seen which I am very grateful for. Is either Cryoablation or Radiofrequency Ablation a treatment possibility for your liver and/or your lung mets? If so, perhaps you could pursue ablation treatment prior to beginning a new Clinical Trial to try to address these tumors and reduce tumor load as much as possible. I am not personally familiar with the combination CPT 11/Avastin Trial which Dr. Kummar suggested to you, but Hopefully others on this Board who may know about it will write to share information. Is this Trial specifically for ASPS? I am in contact with an ASPS patient who unfortunately does not want to participate on the Board, but she is now on a Dasatanib Clinical Trial, and encouragingly her two month status scans showed stabilization of her disease and tumor shrinkage. If you are interested in communicating with her I will be glad to give you her name and e-mail address privately so that you can contact her to discuss her Dasatanib treatment experience. Also, English ASPS patient Clare Clarke seems to be having a successful response to Axitinib as far as stabilization of her disease, although she hasn't had the dramatic tumor shrinkage that has been experienced with Cediranib.
I am so glad that your spirits remain high and your attitude positive which is so very important in fighting this challenging disease. Please know Eric that I am here to try to help in any way that I can with shared information and support, and that I am Hoping that you will find a more effective treatment which will provide a much more significant, longer, and more sustained response than the Cediranib did for you. Please take care, keep holding tight to Hope, and keep in touch with the Board as you are able.
With deepest caring, special thoughts, healing wishes, and continued Hope,
Bonni
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equezada
Re: Just Started Cediranib trial (Eric)
Bonnie,
First let me once again thank you and all of the folks who participate on this site, I can not imagine how lonely and isolated I would feel with out all of you, it's like we have a collective spirit working together to find a cure and most importantly giving us patients, and our family and friends hope and determination to continue fighting and for all of us to be present in our lives with our loved ones.
I have only had some minimal growth in my liver mets, the other mets I have a small met in my abdomen, one in my lung and one on my scapula (shoulder) are all stable and no new growths. DR. Kummar was concerned about increased activity on the PT scan. In terms of ablation my local surgeon feels it is not an option because of the location of some of the larger mets that are close to large vessels, but I think cyro might be an option so i am trying to contact Dr. Littrup.
The challenging question is should I wait 4 weeks for a trial or start right away on sutent or some other approved drug given the possible spike comming off the cediranib? I am very interested in the dasatanib, but my question is should we try another family of drugs or something that is not an anti-angiogenic approach. I am still waiting to talk to my oncologist but I fear she is not as updated on these questions we are on Kaiser. The axtinib seems hopeful but do they have in US or only in UK?
Eric
First let me once again thank you and all of the folks who participate on this site, I can not imagine how lonely and isolated I would feel with out all of you, it's like we have a collective spirit working together to find a cure and most importantly giving us patients, and our family and friends hope and determination to continue fighting and for all of us to be present in our lives with our loved ones.
I have only had some minimal growth in my liver mets, the other mets I have a small met in my abdomen, one in my lung and one on my scapula (shoulder) are all stable and no new growths. DR. Kummar was concerned about increased activity on the PT scan. In terms of ablation my local surgeon feels it is not an option because of the location of some of the larger mets that are close to large vessels, but I think cyro might be an option so i am trying to contact Dr. Littrup.
The challenging question is should I wait 4 weeks for a trial or start right away on sutent or some other approved drug given the possible spike comming off the cediranib? I am very interested in the dasatanib, but my question is should we try another family of drugs or something that is not an anti-angiogenic approach. I am still waiting to talk to my oncologist but I fear she is not as updated on these questions we are on Kaiser. The axtinib seems hopeful but do they have in US or only in UK?
Eric
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Just Started Cediranib trial (Eric)
Hi again Eric. Thank you for your kind words and very well expressed personal insights on the value of this Board and those who participate on it. I am grateful that you find this Board to be a beneficial source of shared information, support, encouragement, and Hope for you as that is the purpose for which it was founded.
I am also very grateful that most of your mets were stable on your scans, that there were no new tumors, and that there was only minimal growth in your liver mets. I personally feel that you should pursue ablation or sterotactic radiosurgery for any of your mets which could be treated with these modalities since unfortunately there are no guarantees that a systemic treatment will be successful, and it would be good to shrink/destroy the treatable mets at their smallest possible size. I share your question/concern about the advisability of you trying another TKI since you had only relatively short term stability and mininimal shrinkage on Cediranib. There is another patient on this Board who had progression on Cediranib and then had a failed response to Sutent, so it could be that ASPS is unfortunately not always responsive to TKI medications for all patients. I have wondered if there is a greater, longer, and more sustained response for patients who started Cediranib at the higher 45 mg. dosage and then reduced to 30 mg. as Brittany, Paul Mavers, and Clare Clarke all did, but I don't know if this question has been addressed by any of the research thus far. There are so many unknowns and variables that it seems impossible to find any definitive answers. The only thing that all of us can do is to be very pro-active, aggressive and relentless in our reasearch, actively network with other ASPS patients and their families, and be as knowledgeable as possible in making treatment decisions based on all of the previously mentioned things. You said that your Kaiser oncologist may not be updated on the questions that you have. Hopefully she is at least a sarcoma specialist, and if not, I would strongly encourage you to find and consult with one as soon as possible as it is vitally important that you receive the best up to date information and advice possible. I will be anxiously awaiting your next update regarding the outcome of your consultation and discussion with your oncologist and your treatment decision, and continuing to hold you very close in my heart and most caring thoughts.
With special caring thoughts, healing wishes, and continued Hope,
Bonni
I am also very grateful that most of your mets were stable on your scans, that there were no new tumors, and that there was only minimal growth in your liver mets. I personally feel that you should pursue ablation or sterotactic radiosurgery for any of your mets which could be treated with these modalities since unfortunately there are no guarantees that a systemic treatment will be successful, and it would be good to shrink/destroy the treatable mets at their smallest possible size. I share your question/concern about the advisability of you trying another TKI since you had only relatively short term stability and mininimal shrinkage on Cediranib. There is another patient on this Board who had progression on Cediranib and then had a failed response to Sutent, so it could be that ASPS is unfortunately not always responsive to TKI medications for all patients. I have wondered if there is a greater, longer, and more sustained response for patients who started Cediranib at the higher 45 mg. dosage and then reduced to 30 mg. as Brittany, Paul Mavers, and Clare Clarke all did, but I don't know if this question has been addressed by any of the research thus far. There are so many unknowns and variables that it seems impossible to find any definitive answers. The only thing that all of us can do is to be very pro-active, aggressive and relentless in our reasearch, actively network with other ASPS patients and their families, and be as knowledgeable as possible in making treatment decisions based on all of the previously mentioned things. You said that your Kaiser oncologist may not be updated on the questions that you have. Hopefully she is at least a sarcoma specialist, and if not, I would strongly encourage you to find and consult with one as soon as possible as it is vitally important that you receive the best up to date information and advice possible. I will be anxiously awaiting your next update regarding the outcome of your consultation and discussion with your oncologist and your treatment decision, and continuing to hold you very close in my heart and most caring thoughts.
With special caring thoughts, healing wishes, and continued Hope,
Bonni