Dear Amanda,
Thanks for your kind enquiries..we are doing ok.Hope you have fully recovered from your surgery by now. How are you feeling? Take care.
Dear All,
Sree got this project which required us to move to the US and we are here now !
Thought it would give us more options in terms of Sree's treatment. We have just set up an appointment with a local oncologist, will take things forward from there.
University of Michigan, Ann Arbor is close by and they have a good sarcoma team. Cediranib trial is also an option, we are in touch with NCI.
I still have my concerns about systemic treatment, allthough we know that cediranib may be effective in shrinking/stabilising, we don't know how that translates into overall survival. Its even more important because long term survival may be possible even with metastatic ASPS, so its important not to compromise that at any cost.
Its all so confusing and we are just not able to make up our mind. I hope we'll get some guidance in the coming days/weeks. The next CT scan is also due, will keep all of you posted.
Arch
Sree from India (now USA) - Dx 2008 - RIP 03/05/2012
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Sree's recent diagnosis
Dear Arch,
Welcome to the United States!
It is so good to hear from you again, and I'm so glad that you are now in the United States where you may have easier access to ASPS medical treatment or enrollment in a Clinical Trial for Sree. I understand your concerns about systemic treatment as we had resisted it for years with Brittany until her disease became so aggressive and she developed such widely disseminated tumors, some of which were unresectable, that we had no other option. There are of course concerns regarding rebound or developed resistance with anti-angiogenic medications, but Cediranib is the first systemic treatment which we have found for ASPS which has provided disease stability, dramatic tumor shrinkage, and can cross the blood brain barriar which is extremely important with this disease which can metastasize to the brain. We are holding VERY tight to Hope that Brittany will have a continued and sustained successful response to the treatment, but we also know there is a strong possibility that eventually her disease will develop a resistance to the medication as the longest documented response according to Professor Judson seems to be about two years. However, if that heartbreakingly occurs, there is data that indicates that immediately switching to another strong anti-angiogenic medication like Sutent can prevent rebound disease progression and continue the effectiveness of Cediranib. Regarding your questions in the Cediranib thread about Paul and Clare's status, I have sent several e-mails to Paul during the past couple of months which he has disappointingly/concerningly not yet responded to. However, in my last communication with him last summer, he said that he was doing fine, he was still taking Cediranib, and that he would let me know if any problems developed. I just recently heard from Clare and thankfully she is continuing to feel well and to have disease stability which is very encouraging since she has been off of the Cediranib treatment for the past year and a half. I continue to encourage Paul, Clare, and all of the ASPS patients who are receiving, or have received, Cediranib treatment to please keep this Board updated with their treatment experience and results as this shared anecdotal information is so extremely important to all of us in helping to guide us in making critical treatment decisions. My special thoughts and best wishes will be with Sree and you as you seek guidance and explore treatment options with the new oncologist, and for his upcoming scans. I will be anxiously awaiting your next update. In the meantime, please take care and give my best to Sree.
With special caring thoughts and continued Hope,
Bonni
Welcome to the United States!
It is so good to hear from you again, and I'm so glad that you are now in the United States where you may have easier access to ASPS medical treatment or enrollment in a Clinical Trial for Sree. I understand your concerns about systemic treatment as we had resisted it for years with Brittany until her disease became so aggressive and she developed such widely disseminated tumors, some of which were unresectable, that we had no other option. There are of course concerns regarding rebound or developed resistance with anti-angiogenic medications, but Cediranib is the first systemic treatment which we have found for ASPS which has provided disease stability, dramatic tumor shrinkage, and can cross the blood brain barriar which is extremely important with this disease which can metastasize to the brain. We are holding VERY tight to Hope that Brittany will have a continued and sustained successful response to the treatment, but we also know there is a strong possibility that eventually her disease will develop a resistance to the medication as the longest documented response according to Professor Judson seems to be about two years. However, if that heartbreakingly occurs, there is data that indicates that immediately switching to another strong anti-angiogenic medication like Sutent can prevent rebound disease progression and continue the effectiveness of Cediranib. Regarding your questions in the Cediranib thread about Paul and Clare's status, I have sent several e-mails to Paul during the past couple of months which he has disappointingly/concerningly not yet responded to. However, in my last communication with him last summer, he said that he was doing fine, he was still taking Cediranib, and that he would let me know if any problems developed. I just recently heard from Clare and thankfully she is continuing to feel well and to have disease stability which is very encouraging since she has been off of the Cediranib treatment for the past year and a half. I continue to encourage Paul, Clare, and all of the ASPS patients who are receiving, or have received, Cediranib treatment to please keep this Board updated with their treatment experience and results as this shared anecdotal information is so extremely important to all of us in helping to guide us in making critical treatment decisions. My special thoughts and best wishes will be with Sree and you as you seek guidance and explore treatment options with the new oncologist, and for his upcoming scans. I will be anxiously awaiting your next update. In the meantime, please take care and give my best to Sree.With special caring thoughts and continued Hope,
Bonni
Re: Sree's recent diagnosis
Dear Bonni,
Cediranib seems to be promising for ASPS, but we still have doubts on what's the appropriate time to start it. Its not easy, the more you understand, the more complex it seems !
Meanwhile , I'm glad to know Clare is doing fine. I too had sent an email to Paul some time ago and he hasn't responded yet, maybe he's just fine and trying to live his normal life.Hope he updates us when he finds the time.
Best wishes to Brittany, with her strong, positive attitude and her family to support her, she's going to be fine.
Take care
Arch
Cediranib seems to be promising for ASPS, but we still have doubts on what's the appropriate time to start it. Its not easy, the more you understand, the more complex it seems !
Meanwhile , I'm glad to know Clare is doing fine. I too had sent an email to Paul some time ago and he hasn't responded yet, maybe he's just fine and trying to live his normal life.Hope he updates us when he finds the time.
Best wishes to Brittany, with her strong, positive attitude and her family to support her, she's going to be fine.
Take care
Arch
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Sree's recent diagnosis
Dear Arch,
Thank you for your kind words about Brittany and for your good wishes. I know very well how overwhelming and confusing it is to try to decide when it is best to start a systemic treatment. It is a difficult wait and see game when the disease is stable, but then if the disease progresses some treatment options may not be available ( for example if there is progression to the brain, Cediranib is not an option until the brain mets are treated and stable). I wish that there were specific guidelines for if, or when, treatment should be started, but since there aren't all that we can all do is closely monitor the disease and try to make the most informed treatment decisions possible. I Hope that Sree's upcoming appointment with the oncologist goes well, and I will be anxiously awaiting your Board update on the results of Sree's next scans and your decision regarding future treatment, if any. Please take care Arch and know that my continued best wishes and special thoughts are with Sree and you. Stay warm and have a good weekend.
Crossing the miles to share special caring and continued Hope,
Bonni
Thank you for your kind words about Brittany and for your good wishes. I know very well how overwhelming and confusing it is to try to decide when it is best to start a systemic treatment. It is a difficult wait and see game when the disease is stable, but then if the disease progresses some treatment options may not be available ( for example if there is progression to the brain, Cediranib is not an option until the brain mets are treated and stable). I wish that there were specific guidelines for if, or when, treatment should be started, but since there aren't all that we can all do is closely monitor the disease and try to make the most informed treatment decisions possible. I Hope that Sree's upcoming appointment with the oncologist goes well, and I will be anxiously awaiting your Board update on the results of Sree's next scans and your decision regarding future treatment, if any. Please take care Arch and know that my continued best wishes and special thoughts are with Sree and you. Stay warm and have a good weekend.
Crossing the miles to share special caring and continued Hope,
Bonni
-
Fictional
Re: Sree's recent diagnosis
Hi Arch and Sree,
Welcome to the US! Wow, things happen fast! I'm sorry I missed your original post.
Ann Arbor is a wonderful area. A dear friend of ours is pastor at Knox Presbyterian church.
Great to hear about the sarcoma team at U Mich. In Michigan there is also Karmanos Institute in Detroit which often has clinical trials of targeted agents. We looked into a trial there and Patricia La Russo was very kind in try to talk with us and negotiate about a trial - ultimately 'K' could not be seen there because she is a child and Karmanos has no pediatric nurses. Very compassionate lady - and doing all the Phase I work there including sarcoma stuff.
Peter Littrup is also there as you may know, but I am wary about cryoablation.
All the best to you all.Hope you don't get too much snow!
Welcome to the US! Wow, things happen fast! I'm sorry I missed your original post.
Ann Arbor is a wonderful area. A dear friend of ours is pastor at Knox Presbyterian church.
Great to hear about the sarcoma team at U Mich. In Michigan there is also Karmanos Institute in Detroit which often has clinical trials of targeted agents. We looked into a trial there and Patricia La Russo was very kind in try to talk with us and negotiate about a trial - ultimately 'K' could not be seen there because she is a child and Karmanos has no pediatric nurses. Very compassionate lady - and doing all the Phase I work there including sarcoma stuff.
Peter Littrup is also there as you may know, but I am wary about cryoablation.
All the best to you all.Hope you don't get too much snow!
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sandeep.bhandari
- New Member
- Posts: 5
- Joined: Mon Mar 16, 2009 6:26 am
- Location: Southampton, UK
Re: Sree's recent diagnosis
Hi Archana
I am Bharathi Bhandari.My husband sandeep was diagnosed with ASPS in Dec 2008.I gather that Sree is on Cedarinib and wondering how he is getting on.Is there any phone number I can call you on? My Email ID is bharathibhandari@hotmail.com.
Take care
I am Bharathi Bhandari.My husband sandeep was diagnosed with ASPS in Dec 2008.I gather that Sree is on Cedarinib and wondering how he is getting on.Is there any phone number I can call you on? My Email ID is bharathibhandari@hotmail.com.
Take care
Re: Sree's recent diagnosis
Hi Bharathi,
Welcome to this forum. Sree is on cediranib for the 3rd week now, side effects for him have been throat problems and elevated liver enzymes(he started the trial with normal values and scans show tumors only in his lungs, not liver). At NCI, they have seen elevated liver enzymes on this trial, but unlike high BP or thyroid issues they are not able to prescribe anything to control this side effect.
I'm going to India today, we moved to the US in a hurry and I have things to take care of there. Where are you ? In UK or in the US ?
I'm sending you an email on your hotmail id.
Take care
Arch
Welcome to this forum. Sree is on cediranib for the 3rd week now, side effects for him have been throat problems and elevated liver enzymes(he started the trial with normal values and scans show tumors only in his lungs, not liver). At NCI, they have seen elevated liver enzymes on this trial, but unlike high BP or thyroid issues they are not able to prescribe anything to control this side effect.
I'm going to India today, we moved to the US in a hurry and I have things to take care of there. Where are you ? In UK or in the US ?
I'm sending you an email on your hotmail id.
Take care
Arch
Re: Sree's recent diagnosis
Hello Arch
Its been a while and i wanted to say hello and see how you and Sree are doing? I think about you both often and i hope i hear back soon...
Its been a while and i wanted to say hello and see how you and Sree are doing? I think about you both often and i hope i hear back soon...
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Sree's recent diagnosis
Dear Amanda,
I read your updates and am happy to hear the good results from your recent scans. Its now been two years since this nightmare started, I hope you can now relax a bit and not worry too much about this thing.
As you know Sree's disease has had a more active course(growth in lung mets)not giving us a break...after he left the cediranib trial, he has started sutent (37.5mg daily without breaks). He will be scanned end of this month, the fatigue from the actual treatment and from worrying about the next course of action has pretty much kept us occupied. We are holding on to faith and a positive attitude and as you say, trying to live our live and not the cancer. He may require some dose alterations, as 37.5mg daily seems to be a little too harsh.
Its been a long, cold winter here in Michigan and we are waiting for spring. Sending positive vibes your way for healing and best wishes for your gall bladder surgery.
Take care
Arch
I read your updates and am happy to hear the good results from your recent scans. Its now been two years since this nightmare started, I hope you can now relax a bit and not worry too much about this thing.
As you know Sree's disease has had a more active course(growth in lung mets)not giving us a break...after he left the cediranib trial, he has started sutent (37.5mg daily without breaks). He will be scanned end of this month, the fatigue from the actual treatment and from worrying about the next course of action has pretty much kept us occupied. We are holding on to faith and a positive attitude and as you say, trying to live our live and not the cancer. He may require some dose alterations, as 37.5mg daily seems to be a little too harsh.
Its been a long, cold winter here in Michigan and we are waiting for spring. Sending positive vibes your way for healing and best wishes for your gall bladder surgery.
Take care
Arch
Re: Sree's recent diagnosis
Dear Arch,
I trust nothing about this evil cancer it does what it wants when it wants and then stops as fast as it came and just shuts off in some that they said wouldnt be here and are. So there wit this cancer is a light though how is choses who it does this with is a mystery and for how long. So for myself i panic every three months like everyone else and usualy cry. But, after the scan for a few weeks yes i feel better ...
I am sorry this is fighting you two so hard! From what i have read dont many change to a lower dose? I am sad that you two are going thru this and that Sree is feeling so bad. I wish my step mother was here to post about living life with cancer she was very very sick and doing it. I can just pass on what she said to me that helped me. What drinks can Sree drink? Are there any restrictions on what he eats? Isnt Lindsy on a new med after usuing What Sree is on and it seems to be going well. Have you looked into that yet?
My step mother was given a drink and i am going to look for the name it was not cheap and came in a small container.. i will ask today what it was and maybe Sree can use that it seemed to help her.
I hope that the sun is shining today and that the cold is less! This also takes a toll on people that are going thrutreatments mentaly and physicly I believe. To hot to cold does seem to make a difference in how a person feels.
I sat in the sun by the window in a rocking chair * I know corny sounding but i did* lol The sun helped and it was not warm outside when i did this and that helped.
I am in hopes the scans wil show shrinkage and that they wil also lower Sree meds to a place where it is stil working yet lets him live his life with out feeling so badly.. sending you alll healing light and hope!
Post as soon as you get results or you have my number of you ever need to talk
I trust nothing about this evil cancer it does what it wants when it wants and then stops as fast as it came and just shuts off in some that they said wouldnt be here and are. So there wit this cancer is a light though how is choses who it does this with is a mystery and for how long. So for myself i panic every three months like everyone else and usualy cry. But, after the scan for a few weeks yes i feel better ...
I am sorry this is fighting you two so hard! From what i have read dont many change to a lower dose? I am sad that you two are going thru this and that Sree is feeling so bad. I wish my step mother was here to post about living life with cancer she was very very sick and doing it. I can just pass on what she said to me that helped me. What drinks can Sree drink? Are there any restrictions on what he eats? Isnt Lindsy on a new med after usuing What Sree is on and it seems to be going well. Have you looked into that yet?
My step mother was given a drink and i am going to look for the name it was not cheap and came in a small container.. i will ask today what it was and maybe Sree can use that it seemed to help her.
I hope that the sun is shining today and that the cold is less! This also takes a toll on people that are going thrutreatments mentaly and physicly I believe. To hot to cold does seem to make a difference in how a person feels.
I sat in the sun by the window in a rocking chair * I know corny sounding but i did* lol The sun helped and it was not warm outside when i did this and that helped.
I am in hopes the scans wil show shrinkage and that they wil also lower Sree meds to a place where it is stil working yet lets him live his life with out feeling so badly.. sending you alll healing light and hope!
Post as soon as you get results or you have my number of you ever need to talk
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Sree's recent diagnosis
Dear Amanda,
Thanks for your kind words and support. There are no diet restrictions for Sree except grapefruit(which he doesn't eat even otherwise).
I will keep all of you updated on his scan results..as usual, we are anxious, worried....
Another update, I'm in regular touch with Sree's doctor in India and his doctor is currently in Dresden with Prof Rolle, learning the laser surgery! So it might be available soon in our local hospital at Bangalore,India! Just wanted to share this, for the sake of anyone from India reading this forum.
Arch
Thanks for your kind words and support. There are no diet restrictions for Sree except grapefruit(which he doesn't eat even otherwise).
I will keep all of you updated on his scan results..as usual, we are anxious, worried....
Another update, I'm in regular touch with Sree's doctor in India and his doctor is currently in Dresden with Prof Rolle, learning the laser surgery! So it might be available soon in our local hospital at Bangalore,India! Just wanted to share this, for the sake of anyone from India reading this forum.
Arch
Re: Sree's recent diagnosis
Arch - this is an amazing news about other drs trying to learn from Dr.Rolle and implement this technology elsewhere. He has so much knowledge and agree to share it unlike many other that are trying to keep their professional secretes to themselves. Dr.Rolle is so much different in that sense and I am sure that he is the best teacher, he explained to us so many things about the lungs just passing by Ivan's room on the every day rounds - he just loves to teach.
Do you know if his laser is approved in India for thoracic surgery indication as an acceptable tool?
Do you know if his laser is approved in India for thoracic surgery indication as an acceptable tool?
Olga
Re: Sree's recent diagnosis
I'm not sure about the approvals in India, I will however update this forum with the facility address, doctor's name etc when it becomes available.
I remember Prof Rolle told us that he has once come to India to perform a laser surgery on a patient, so I assume approvals are in place since it was performed in India ?
I remember Prof Rolle told us that he has once come to India to perform a laser surgery on a patient, so I assume approvals are in place since it was performed in India ?
Re: Sree - Dx 2008
Sree is currently on the Dasatinib trial at the University of Michigan. He hasn't had any scans since starting the trial, so we don't know how it affects his tumors yet.
After coming off Cediranib, we did see significant growth in his lung mets, sutent could not stop the progression(tried it for 2 months) and he is now on dasatinib.
After coming off Cediranib, we did see significant growth in his lung mets, sutent could not stop the progression(tried it for 2 months) and he is now on dasatinib.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Sree - Dx 2008
Dear Arch,
Thank you for your thoughtful update on Sree. It is so very good to hear from you again. You have really been missed on the Board. I am so sorry for the significant rebound growth that Sree experienced in his lung mets following discontinuation of his Cediranib Trial, and for the continued disease progression that he had during the two months that he was taking Sutent, but I am glad to hear that he is now participating in a new clinical trial with the promising new TKI drug Dasatanib. There are currently two other ASPS patients who I am personally aware of who are also in a Dasatanib Trial, but they are both in a Trial in California. Eric has thoughtfully posted his Dasatanib experience information in the "Other ASPS Clinical Trials" section on this Board, and I am in contact with another patient who does not wish to participate on the Board, but is willing to allow me to post updates on her behalf. Perhaps Olga can relocate your entry to the Dasatanib topic and you can post further updates and information there about Sree's Dasatanib experience and results. I Hope that Sree is tolerating the Dasatanib well with no debilitating side effects, and I am so very Hopeful that he will have a very successful response to the Dasatanib and that his next scans will show stabilization of his disease and shrinkage of his lung mets. Please take care dear Arch, and keep in touch with the Board as you are able.
Sending special hugs, deepest caring, healing wishes for Sree, and continued Hope,
Bonni
Thank you for your thoughtful update on Sree. It is so very good to hear from you again. You have really been missed on the Board. I am so sorry for the significant rebound growth that Sree experienced in his lung mets following discontinuation of his Cediranib Trial, and for the continued disease progression that he had during the two months that he was taking Sutent, but I am glad to hear that he is now participating in a new clinical trial with the promising new TKI drug Dasatanib. There are currently two other ASPS patients who I am personally aware of who are also in a Dasatanib Trial, but they are both in a Trial in California. Eric has thoughtfully posted his Dasatanib experience information in the "Other ASPS Clinical Trials" section on this Board, and I am in contact with another patient who does not wish to participate on the Board, but is willing to allow me to post updates on her behalf. Perhaps Olga can relocate your entry to the Dasatanib topic and you can post further updates and information there about Sree's Dasatanib experience and results. I Hope that Sree is tolerating the Dasatanib well with no debilitating side effects, and I am so very Hopeful that he will have a very successful response to the Dasatanib and that his next scans will show stabilization of his disease and shrinkage of his lung mets. Please take care dear Arch, and keep in touch with the Board as you are able.
Sending special hugs, deepest caring, healing wishes for Sree, and continued Hope,
Bonni