[DONE] Sree on Cediranib
Re: Sree on Cediranib
Oh, by the way, my niece is a pharmacist. She looked up the retail price of Sutent....Its approx. $11,000 per cycle.
Re: Sree on Cediranib
Arch, what are the sizes of the mets? I guess there is no appeal process when one is kicked off the trial so let just move on. Does Sree have the US insurance from his work place or he is with the visitor visa in US. The cost of Sutent is very high fore sure but it looks like the best option and you should contact Pfizer re. compassionate basis cost assistance - I recently posted the link in the Finanical assistance area http://www.cureasps.org/forum/viewtopic.php?f=40&t=576 look there if you can find the way to get the reduced price.
Another thing is to look for the different trial using different TKI + something like pazopanib I found one but it looks like the previous cediranib might be excluding factor, ask them http://clinicaltrials.gov/ct2/show/NCT00732420
or look into this study http://clinicaltrials.gov/ct2/show/NCT01205230 they investigate the effect of a few doses of the additional drug oral ketoconazole on the pharmacokinetics of the pazopanib and this is the type of the study that Brittany is still on - the advantage is that the efficacy is not its primary quest but the pharmacokinetics so people are less likely to be kicked off the trial when single mets is progressing and allowed to treat that met and go on if there is an overall clinical benefit for the patient. I am not sure how long is this study going to last and what are discontinuation criteria, but as I understand the patient stays on the drug until the clinical benefit continues (at least that what Brittany' s oncologist from Canadian clinical trial said, Bonni - can you comment on that).
I know about the case when another slow growing sarcoma patient greatly benefited from participation in pazopanib trial and is still on that drug with the partial response/stable disease.
Anyways, there will be a period of time between the discontinuation of cediranib and the next treatment (if any), so if there are any mets in the concerning locations, you might want to use the break to cryo them?
Another possibility is to start IFN-alpha 2 if you read the post in the personal updates by the curesearch or gemcitabine continuously. There were some published articles re. IFN and Ivan's oncologist was agreed to prescribe it any time if we decided to do that, I am now thinking that we maybe should have after the surgery when the new mets were all small as it seems that it does not block the bigger mets but may be works for the small ones.
Another thing is to look for the different trial using different TKI + something like pazopanib I found one but it looks like the previous cediranib might be excluding factor, ask them http://clinicaltrials.gov/ct2/show/NCT00732420
or look into this study http://clinicaltrials.gov/ct2/show/NCT01205230 they investigate the effect of a few doses of the additional drug oral ketoconazole on the pharmacokinetics of the pazopanib and this is the type of the study that Brittany is still on - the advantage is that the efficacy is not its primary quest but the pharmacokinetics so people are less likely to be kicked off the trial when single mets is progressing and allowed to treat that met and go on if there is an overall clinical benefit for the patient. I am not sure how long is this study going to last and what are discontinuation criteria, but as I understand the patient stays on the drug until the clinical benefit continues (at least that what Brittany' s oncologist from Canadian clinical trial said, Bonni - can you comment on that).
I know about the case when another slow growing sarcoma patient greatly benefited from participation in pazopanib trial and is still on that drug with the partial response/stable disease.
Anyways, there will be a period of time between the discontinuation of cediranib and the next treatment (if any), so if there are any mets in the concerning locations, you might want to use the break to cryo them?
Another possibility is to start IFN-alpha 2 if you read the post in the personal updates by the curesearch or gemcitabine continuously. There were some published articles re. IFN and Ivan's oncologist was agreed to prescribe it any time if we decided to do that, I am now thinking that we maybe should have after the surgery when the new mets were all small as it seems that it does not block the bigger mets but may be works for the small ones.
Olga
Re: Sree on Cediranib
Hello Wendi,
I hope that this is not the case that they are loosing sight :/ I was also told when i was looking into this drug 20% ...
Stability is also important! Even if it is not a cure! Wonder if they read these forums and if so what they have to say about this?
I feel like calling them tomorrow this has actually made me very mad!
I hope that this is not the case that they are loosing sight :/ I was also told when i was looking into this drug 20% ...
Stability is also important! Even if it is not a cure! Wonder if they read these forums and if so what they have to say about this?
I feel like calling them tomorrow this has actually made me very mad!
wendik wrote:Dr. Spinoza at NIH told Matt that the protocol allows for 20% growth.....I don't get whats up with Dr. Kummar. I think she's so concerned with her numbers that she's losing sight that this drug is keeping MANY patients basically stable. Another reason to be leery of trials.Those in charge seem to forget that their patients are human. It's as if the DRUG is the patient....Sorry, I'm just a BIT jaded.
“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 on Cediranib
Sree got home from NIH late last night and this is what I understood from him.
The radiologist compares a scan with the previous scan(taken 8 weeks ago), changes of 1-2mm are still reported as stable because its within the realms of error.
Its difficult to report a 1 mm change as a growth, because it depends on where the CT slice was etc..etc.Even yesterday's scan report says his mets are stable. But the doctors have compared the last 5 restaging scans and they see 2-3 nodules in his lungs that have been growing slowing. Allthough they too were not sure in the earlier scans, they are now sure that it is progression. We only wish we were better prepared for this, especially since Cediranib is such a strong VEGF inhibitor and rebound could be strong.
If a drug has kept all tumors stable except 2-3, can we treat those 3 mets with cryo or something and then get back into the trial ? That's something that I will check with Dr.Kummar. I am not sure if the trial allows it, but no harm checking with them.
Olga, the largest met is 1.6cm and there are some around 1 cm. He has many many smaller ones which showed up during the 6 months after his second laser surgery and before he started cediranib. He has medical insurance thru' work, hopefully that will make things a little easier.
Thank you Wendy,Amanda,Ivan, Olga and Mario for your support. Wendy, I hope Matt is doing well. Let me know how your sutent approval goes.
I will keep all of you updated on how things go for us.
Take care.
Arch
The radiologist compares a scan with the previous scan(taken 8 weeks ago), changes of 1-2mm are still reported as stable because its within the realms of error.
Its difficult to report a 1 mm change as a growth, because it depends on where the CT slice was etc..etc.Even yesterday's scan report says his mets are stable. But the doctors have compared the last 5 restaging scans and they see 2-3 nodules in his lungs that have been growing slowing. Allthough they too were not sure in the earlier scans, they are now sure that it is progression. We only wish we were better prepared for this, especially since Cediranib is such a strong VEGF inhibitor and rebound could be strong.
If a drug has kept all tumors stable except 2-3, can we treat those 3 mets with cryo or something and then get back into the trial ? That's something that I will check with Dr.Kummar. I am not sure if the trial allows it, but no harm checking with them.
Olga, the largest met is 1.6cm and there are some around 1 cm. He has many many smaller ones which showed up during the 6 months after his second laser surgery and before he started cediranib. He has medical insurance thru' work, hopefully that will make things a little easier.
Thank you Wendy,Amanda,Ivan, Olga and Mario for your support. Wendy, I hope Matt is doing well. Let me know how your sutent approval goes.
I will keep all of you updated on how things go for us.
Take care.
Arch
Re: Sree on Cediranib
Hi Amanda,
There are a few people who have been on cediranib for longer than a year, I was checking if anyone on this trial at NCI have stayed for longer than a year.
Clare,Paul and even Brittany started with 45mg cediranib and I guess they were/are all part of phase-1 trials which probably allowed them to treat a growing met and still continue on the trial..just wondering if that might have helped them.
The starting dose at the NCI trial is 30mg and since its in phase-2, I guess there's not much flexibility.
Arch
There are a few people who have been on cediranib for longer than a year, I was checking if anyone on this trial at NCI have stayed for longer than a year.
Clare,Paul and even Brittany started with 45mg cediranib and I guess they were/are all part of phase-1 trials which probably allowed them to treat a growing met and still continue on the trial..just wondering if that might have helped them.
The starting dose at the NCI trial is 30mg and since its in phase-2, I guess there's not much flexibility.
Arch
Re: Sree on Cediranib
Dear Wendy,
Its so difficult for us to accept such a setback. But maybe some thing else will work even better. Maybe sutent will also induce some stability and since its not a trial drug, we would also have the flexibility to have surgery/cryo/rfa and be back on it.
I am right now praying for guidance, choosing the next treatment is a critical step. I will keep you also in my prayers.
Arch
Its so difficult for us to accept such a setback. But maybe some thing else will work even better. Maybe sutent will also induce some stability and since its not a trial drug, we would also have the flexibility to have surgery/cryo/rfa and be back on it.
I am right now praying for guidance, choosing the next treatment is a critical step. I will keep you also in my prayers.
Arch
Re: Sree on Cediranib
Arch, you guys should investigate if you can treat those 3 mets with cryo - get the copy of the last scan on a CD and send it to Dr.Littrup so after he answers you better know the options. There seems to be some mets that content mutations that are resistant to cediranib so they probably need to be treated locally? The quoted size is good for cryo, I would say - ideal.
Olga
Re: Sree on Cediranib
Arch,
Matt got the approval for Sutent today from United Healthcare. It seems the insurance companies ARE viewing this as a viable option. (Thank goodness) We don't yet know what his co-pay will be, but there are co-pay assistance organizations out there to help. I will let you all know what his copay is when we find out.
There is good information on the internet to support treatment with Sutent, and if you need the links to show your oncologist just let me know.
Maybe this will be a more effective treatment for "our guys".
Wendy
Matt got the approval for Sutent today from United Healthcare. It seems the insurance companies ARE viewing this as a viable option. (Thank goodness) We don't yet know what his co-pay will be, but there are co-pay assistance organizations out there to help. I will let you all know what his copay is when we find out.
There is good information on the internet to support treatment with Sutent, and if you need the links to show your oncologist just let me know.
Maybe this will be a more effective treatment for "our guys".
Wendy
Re: Sree on Cediranib
I keep thinking about this situation Sree being kicked off trial at the NCI. I was appalled at first by the decision since there is no obvious progression but as I kept thinking about it - she actually did a right thing, if she compared the last scan to the one that was done 5 scans ago and found out that the mets were slowly progressing - it was her duty to notify the patient that the treatment that he assumed be working is not helping so the patient will not waster the time and go look for other options before it is to late. I actually hate it when on some other clinical trials ASPS patients are reported to be stable and stay on the trial by the RECIST criteria when in fact the person is progressing the same rate as he was before of the trial, it is just ASPS often progresses at the slower pace then the cut off for RECIST. The practice like that does not do any good to a patient, it only helps to improve the reported results of trial. Of course the patient is enjoying the piece of mind in the meantime (which is important too) but he looses the real possibilities to locally control the mets that are resistant to the clinical trial drug.
I was disagree when Matt was kicked off trial because he could resect the new subcutaneous met and keep responding to the cediranib elsewhere as Brittany had but in Sree case the mets that need to be addressed are the control mets and they are a few.
I was disagree when Matt was kicked off trial because he could resect the new subcutaneous met and keep responding to the cediranib elsewhere as Brittany had but in Sree case the mets that need to be addressed are the control mets and they are a few.
Olga
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Bonni Hess
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Re: Sree on Cediranib
Dear Arch,
I am so sorry to be so slow in responding to your heartbreaking update, but our computer here at our second Home in very cold and snowy rural Montana has been extremely tempermental the past several days (which Jim thinks may be somehow related to the over a foot of snow and frigid temperatures!) and I was frustratingly having great difficulty accessing the Discussion Forum. I am deeply saddened by Sree's apparent disease progression and his being taken off of the NIH Cediranib Trial, and I share your great sorrow, disappointment, and the frustration of the conflict between his scans showing stability, but the overall comparison between his five previous scans showing growth. Brittany's scans in Edmonton are compared to the scans from when she first started the Trial in 2009, so I don't understand why this wasn't done with Sree's scans so that any growth could have been detected earlier. I agree with Olga's recommendation regarding possibly pursuing Cryoablation with Dr. Littrup to destroy the largest mets prior to beginning another systemic treatment like Sutent, if Cryo can be arranged quickly before possible rebound from discontinuation of the Cediranib occurs. I think that it is very encouraging that Sree had an initial positive response to Cediranib with tumor shrinkage and disease stability because this may be a good indicator that another anti-angiogenic TKI like Sutent or Pazaponib might be effective for him. If it has not already been done recently at NIH, I would encourage Sree to have a brain MRI and bone scan done through his local oncologist to ensure that no new mets have developed in those areas during his time on Cediranib as vigilance in scanning is so vitally important in this difficult battle with this challenging disease. Please know that I am holding Sree, you, and your family very close in my heart and continued most caring thoughts, feel my arms reaching out to embrace you with warm hugs, take care, and keep the Board updated as you are able regarding the new treatment plans for Sree.
Sharing your pain with deepest caring, warm friendship, and continued Hope,
Bonni
I am so sorry to be so slow in responding to your heartbreaking update, but our computer here at our second Home in very cold and snowy rural Montana has been extremely tempermental the past several days (which Jim thinks may be somehow related to the over a foot of snow and frigid temperatures!) and I was frustratingly having great difficulty accessing the Discussion Forum. I am deeply saddened by Sree's apparent disease progression and his being taken off of the NIH Cediranib Trial, and I share your great sorrow, disappointment, and the frustration of the conflict between his scans showing stability, but the overall comparison between his five previous scans showing growth. Brittany's scans in Edmonton are compared to the scans from when she first started the Trial in 2009, so I don't understand why this wasn't done with Sree's scans so that any growth could have been detected earlier. I agree with Olga's recommendation regarding possibly pursuing Cryoablation with Dr. Littrup to destroy the largest mets prior to beginning another systemic treatment like Sutent, if Cryo can be arranged quickly before possible rebound from discontinuation of the Cediranib occurs. I think that it is very encouraging that Sree had an initial positive response to Cediranib with tumor shrinkage and disease stability because this may be a good indicator that another anti-angiogenic TKI like Sutent or Pazaponib might be effective for him. If it has not already been done recently at NIH, I would encourage Sree to have a brain MRI and bone scan done through his local oncologist to ensure that no new mets have developed in those areas during his time on Cediranib as vigilance in scanning is so vitally important in this difficult battle with this challenging disease. Please know that I am holding Sree, you, and your family very close in my heart and continued most caring thoughts, feel my arms reaching out to embrace you with warm hugs, take care, and keep the Board updated as you are able regarding the new treatment plans for Sree.
Sharing your pain with deepest caring, warm friendship, and continued Hope,
Bonni
Re: Sree on Cediranib
Thanks for your kind words and suggestions.
We are in the process of getting an evaluation from Dr.Littrup, apparently he's one medical leave himself.I don't know how long we should wait to get the cryo.In the meantime we had a discussion with our doctor at the University of Michigan and the doctor is suggesting to start sutent right away.
Sree did have a brain MRI in October, we asked for it and got it done locally. Nothing abnormal was found. Sree has not had a bone scan ever..we'll ask about that the next time we see his doctor.
We are in the process of getting an evaluation from Dr.Littrup, apparently he's one medical leave himself.I don't know how long we should wait to get the cryo.In the meantime we had a discussion with our doctor at the University of Michigan and the doctor is suggesting to start sutent right away.
Sree did have a brain MRI in October, we asked for it and got it done locally. Nothing abnormal was found. Sree has not had a bone scan ever..we'll ask about that the next time we see his doctor.
Re: Sree on Cediranib
Try Dr.Dupuy from Rode Island hosp. http://biomed.brown.edu/facultydirector ... 1100924038 I am not sure if he does cryo but he might do an RFA instead. He is as good with the RFA as Dr.Littrup with the cryo. It is to bad that he is not feeling well after his surgery.
Olga