Hi All--
We were recently accepted to a clinical trial at NIH for a drug called Nelfinavir. Have any of you heard of this drug or are trying it? Here is a quick synopsis from the trial sheet we were provided:
"The purpose of this study is to test the safety of a drug already approved by the FDA called nelfinavir at different dose levels. We want to find out what effects, good and/or bad, it has on you and your cancer. Nelfinavir is a drug used to treat patients infected with HIV (Human Immmunodeficiecy Virus), the cause of AIDS, in combination with other drugs. We have done research that shows nelfinavir has anti-cancer activity that is different from its ability to treat HIV. The experimental part of this research is using nelfinavir to treat cancer instead of HIV/AIDS. We would like to use it in treating patients with cancers that have relapsed following or failed to respond to standard therapy. The patient’s current disease state must be one for which there is no known curative therapy or therapy proven to prolong survival with an acceptable quality of life. This study will also look at how the drug works by measuring activity of different proteins associated with cancer in the blood of all patients. In addition to the effect nelfinavir has on cancer growth, we want to measure how it is broken down by the body so we can best select the dosage and conditions that will maximize its anti-cancer effects. Therefore, we will use midazolam, another FDA-approved drug used as a mild anti-anxiety drug, to measure how the body processes nelfinavir. This drug will only be given twice throughout the study. We will also measure the activity of cancer-related proteins in a small amount of your blood. This sample will be taken before you start treatment, on the eighth day of treatment, and then again after the completion of 6 weeks of treatment. MTD (maximally tolerated dose) refers to the highest dose of the drug that will not cause serious side effects. We are trying to find the MTD for nelfinavir in this trial. There is no upper age limit in this trial. However, there is no experience with nelfinavir in subjects over 65 years of age."
Please, please, please let me know your thoughts! Thank you!
Nelfinavir (Viracept) - NIH
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Fictional
Re: Nelfinavir (Viracept) - NIH
Hi. I don't know if you've already definitely agreed to go ahead with this. It sounds like it would be completely unknown whether it would have some efficacy against ASPS. I would ask the oncologist who suggested it whether there is any known effect in patients with cancer - and if so which cancers. If there is really no data in people yet, it might be risky with advanced disease to enter that trial. Of course it also could be beneficial, but at least in my mind - we have wanted to make as informed decision as possible choosing which medication to have our daughter take.
If you have some flexibility with travel, you might consider a trial that specifically includes alveolar soft part sarcoma or a trial that has been shown in preliminary data to have some benefit in ASPS - disease stability, reduced PET activity, or tumor cell death or shrinkage. The list is small in terms of potentially helpful agents with some clinical record of success, but it is not non-existent...I think it would include Sutent (but may have risk because of brain mets), perifosine (stability), PXD101, ARQ197, possibly Gemzar (anecdotal), possibly high dose Celebrex.
Even R1507 has some potential - known to be effective in many cancers, but also there is some suggestion it might be beneficial in ASPS if you consider David Vistica's ASPS in vitro model and the effect of blocking IGF.
If you have some flexibility with travel, you might consider a trial that specifically includes alveolar soft part sarcoma or a trial that has been shown in preliminary data to have some benefit in ASPS - disease stability, reduced PET activity, or tumor cell death or shrinkage. The list is small in terms of potentially helpful agents with some clinical record of success, but it is not non-existent...I think it would include Sutent (but may have risk because of brain mets), perifosine (stability), PXD101, ARQ197, possibly Gemzar (anecdotal), possibly high dose Celebrex.
Even R1507 has some potential - known to be effective in many cancers, but also there is some suggestion it might be beneficial in ASPS if you consider David Vistica's ASPS in vitro model and the effect of blocking IGF.
Re: Nelfinavir (Viracept) - NIH
I think that I have seen some scientific rationale for the inclusion of the ASPS patients into this trial, may be Yossi can help us out on it.
But I also have an objection to the inclusion of the physically well doing young person into the clinical trial with the criteria "there is no known ....therapy proven to prolong survival with an acceptable quality of life". Recent article from MSK (can be found in our library) says that long term survivors had numerous metastasectomies (or something like this it is not a quote), people do survive for a long time with the metastatic ASPS but it needs to be aggressively resected. Since there is no growth in the brain mets I would have een more agressive in finding the second surgical opinion for the removal of the primary with the consecutive lung mets resection, even clinical trial has more chances to work if the tumor load is reduced. It is not necessary that other surgeons will have the same opinion regarding resectability of the primary tumor.
But I also have an objection to the inclusion of the physically well doing young person into the clinical trial with the criteria "there is no known ....therapy proven to prolong survival with an acceptable quality of life". Recent article from MSK (can be found in our library) says that long term survivors had numerous metastasectomies (or something like this it is not a quote), people do survive for a long time with the metastatic ASPS but it needs to be aggressively resected. Since there is no growth in the brain mets I would have een more agressive in finding the second surgical opinion for the removal of the primary with the consecutive lung mets resection, even clinical trial has more chances to work if the tumor load is reduced. It is not necessary that other surgeons will have the same opinion regarding resectability of the primary tumor.
Olga
Re: Nelfinavir (Viracept) - NIH
Hey Olga--
Thank you for your reply. I'm not sure if Anthony's quality of life right now is acceptable. He doesn't do much but sleep all day and barely eat. He is unhappy with his current state and I think would mention that it's unacceptable...he was a strong, vibrant, 24 year old rocker before this horrible disease got a hold of him.
I think Anthony just wants something, anything at this point. He is sick of not getting treatment and just getting worse. So I'm not sure what to do. I guess this post is more emtional...and I apologize for that. I think what we would like to do is meet the doctor at NIH and get some questions answered and while we are out in the Northeast also visit Sloan and Dana Faber. However, for some reason, we can't get Dana Faber to call us back.
Also, Olga, should we continue to concentrate on first getting his primary removed??!!?! We can speak with Shrump when we are at NIH again about it, but his oncologist here stated that it would have to be amputated, which Anthony is not interested in at this moment.
So, I'm definitely between a rock and a hard place. Thank you 'F' for your feedback as well. Please let us know if you agree with our approach.
Thank you!
Thank you for your reply. I'm not sure if Anthony's quality of life right now is acceptable. He doesn't do much but sleep all day and barely eat. He is unhappy with his current state and I think would mention that it's unacceptable...he was a strong, vibrant, 24 year old rocker before this horrible disease got a hold of him.
I think Anthony just wants something, anything at this point. He is sick of not getting treatment and just getting worse. So I'm not sure what to do. I guess this post is more emtional...and I apologize for that. I think what we would like to do is meet the doctor at NIH and get some questions answered and while we are out in the Northeast also visit Sloan and Dana Faber. However, for some reason, we can't get Dana Faber to call us back.
Also, Olga, should we continue to concentrate on first getting his primary removed??!!?! We can speak with Shrump when we are at NIH again about it, but his oncologist here stated that it would have to be amputated, which Anthony is not interested in at this moment.
So, I'm definitely between a rock and a hard place. Thank you 'F' for your feedback as well. Please let us know if you agree with our approach.
Thank you!
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Fictional
Re: Nelfinavir (Viracept) - NIH
You are in a difficult place and I don't want you to think I am presuming to have any authority to know what the best steps are. What I'd like to do is share what information I have in case anything I know might be in some way helpful.
I have gone through all the patient registry at alveolarspsarcoma.net - even accessing some of the old site with archived search engines whenever possible, and it was depressing reading about how many different chemo trials were initiated at random and failed for ASPS patients. ASPS is a very different tumor from most. For that reason, I would be careful about leaping into a clinical study unless there is some indication it might be particularly well suited for ASPS or the doctor recommending it has some experience with the drug already.
There have been some gains in understanding the biology of ASPS - and if this can inform your decisions it may help. Feel free anyone to chime in here, but the basic facts we know about ASPS is that it is a very vascular tumor (so anti-angiogenesis agents should help - certainly for big tumors with feeding vessels), it is relatively chemo-resistant and radiation-resistant, it has a slower dividing time than many other cancers, and that c-met is involved early the course of the tumor. It also seems it is important for patients to have a good working immune system to fight off the cancer (so don't take anything that is a powerful immunosuppressant). From our daughter's molecular typing of her ASPS primary, we learned 100% of cells of the primary were COX-positive, so her cancer may be responsive to Cox-inhibition or Celebrex. We know that surgical resection when the disease is not widely disseminated can be curative, and we know that radiation (e.g. gamma knife or other) can stabilize or sometimes kill off tumors (but not always) as well. For tumors posing imminent danger, RFA and cryoablation may also be beneficial, but there may be some risk for dissemination of the tumor elsewhere in the body at a later date.
One thing you might consider now is that if there are no contraindications, talk to Anthony's oncologist or even family doctor about going on Celebrex high dose (400 BID) now as you weigh the pros and cons of different clinical trials. It is available at the pharmacy now and he could start it today. It should be covered by most health insurances. The cancer-fighting dose (400 BID) might trigger a call from the pharmacy, but if you say its for cancer, they should approve it. You could also buy green tea capsules from Amazon (ProHealth, no caffeine) during this waiting time - it does not require prescription as it is a "health food supplement". Celebrex + green tea have mild anti-angiogenesis activity, but they are not thought to have much in the way of side effects and probably wouldn't preclude entering most clinical trials.
Celebrex these days is attracting a lot of attention as an add-on in cancer therapy because of its effects on many vascular tumors (breast ca, lung ca, prostate ca, colon ca etc) and low short term toxicity. Celebrex may have cardiac toxicity at high doses if taken over 6 months though - but in the short term it is easy to take. 1 patient in this forum had her ASPS lung nodules slough off after 2 years on Celebrex (plus 1 year or so of Vinblastine), and another patient mentioned lung nodule stability for months on Celebrex, in addition to our experience with ARQ197 + Celebrex (some entirely necrotic/fibrotic nodules, some partially affected, some not affected at all). Celebrex is also often given for pain (like a strong Advil with fewer stomach side effects), so some patients are prescribed this for postop pain anyway. Importantly, too, Celebrex should not be a contraindication to surgery should he need to go emergently to an operation. There are some anti-angiogenesis drugs that require being off for 4-6 weeks before operation - and this should be anticipated in the treatment plan.
You might also consider a consultation with a radiation oncologist / surgeon about the brain mets. Many trials would want these treated before entering a general clinical trial. There are size limitations about gamma knife.
If you could get to the point of some disease stability, then a surgeon might be more willing to take out the primary. But regardless, I would still send CDs of scans and medical records to Fritz Eilber to see if he would be willing to operate and whether he could avoid amputation. If Fritz is in town, he might look at them within a few days of receipt. Even if he said no, it would reassure you that every stone was being left unturned on the primary front.
You would not need all the records for this sort of curbside opinion. A summary note, CD of most recent films with the primary, and reports detailing other sites of metastases would probably be enough for him to say whether it would be worth seeing him for a surgical 2nd opinion.
I have gone through all the patient registry at alveolarspsarcoma.net - even accessing some of the old site with archived search engines whenever possible, and it was depressing reading about how many different chemo trials were initiated at random and failed for ASPS patients. ASPS is a very different tumor from most. For that reason, I would be careful about leaping into a clinical study unless there is some indication it might be particularly well suited for ASPS or the doctor recommending it has some experience with the drug already.
There have been some gains in understanding the biology of ASPS - and if this can inform your decisions it may help. Feel free anyone to chime in here, but the basic facts we know about ASPS is that it is a very vascular tumor (so anti-angiogenesis agents should help - certainly for big tumors with feeding vessels), it is relatively chemo-resistant and radiation-resistant, it has a slower dividing time than many other cancers, and that c-met is involved early the course of the tumor. It also seems it is important for patients to have a good working immune system to fight off the cancer (so don't take anything that is a powerful immunosuppressant). From our daughter's molecular typing of her ASPS primary, we learned 100% of cells of the primary were COX-positive, so her cancer may be responsive to Cox-inhibition or Celebrex. We know that surgical resection when the disease is not widely disseminated can be curative, and we know that radiation (e.g. gamma knife or other) can stabilize or sometimes kill off tumors (but not always) as well. For tumors posing imminent danger, RFA and cryoablation may also be beneficial, but there may be some risk for dissemination of the tumor elsewhere in the body at a later date.
One thing you might consider now is that if there are no contraindications, talk to Anthony's oncologist or even family doctor about going on Celebrex high dose (400 BID) now as you weigh the pros and cons of different clinical trials. It is available at the pharmacy now and he could start it today. It should be covered by most health insurances. The cancer-fighting dose (400 BID) might trigger a call from the pharmacy, but if you say its for cancer, they should approve it. You could also buy green tea capsules from Amazon (ProHealth, no caffeine) during this waiting time - it does not require prescription as it is a "health food supplement". Celebrex + green tea have mild anti-angiogenesis activity, but they are not thought to have much in the way of side effects and probably wouldn't preclude entering most clinical trials.
Celebrex these days is attracting a lot of attention as an add-on in cancer therapy because of its effects on many vascular tumors (breast ca, lung ca, prostate ca, colon ca etc) and low short term toxicity. Celebrex may have cardiac toxicity at high doses if taken over 6 months though - but in the short term it is easy to take. 1 patient in this forum had her ASPS lung nodules slough off after 2 years on Celebrex (plus 1 year or so of Vinblastine), and another patient mentioned lung nodule stability for months on Celebrex, in addition to our experience with ARQ197 + Celebrex (some entirely necrotic/fibrotic nodules, some partially affected, some not affected at all). Celebrex is also often given for pain (like a strong Advil with fewer stomach side effects), so some patients are prescribed this for postop pain anyway. Importantly, too, Celebrex should not be a contraindication to surgery should he need to go emergently to an operation. There are some anti-angiogenesis drugs that require being off for 4-6 weeks before operation - and this should be anticipated in the treatment plan.
You might also consider a consultation with a radiation oncologist / surgeon about the brain mets. Many trials would want these treated before entering a general clinical trial. There are size limitations about gamma knife.
If you could get to the point of some disease stability, then a surgeon might be more willing to take out the primary. But regardless, I would still send CDs of scans and medical records to Fritz Eilber to see if he would be willing to operate and whether he could avoid amputation. If Fritz is in town, he might look at them within a few days of receipt. Even if he said no, it would reassure you that every stone was being left unturned on the primary front.
You would not need all the records for this sort of curbside opinion. A summary note, CD of most recent films with the primary, and reports detailing other sites of metastases would probably be enough for him to say whether it would be worth seeing him for a surgical 2nd opinion.
Re: Nelfinavir (Viracept) - NIH
I really think that the resection of the primary is the best thing that could be done if it does not involve the amputation. If the need for the amputation was only stated by the local surgeon, then you know nothing at this time about what the real options can be. The normal evaluation of the situation has to be based on a few surgical opinions. There are newer techniques avail. in an attempt to improve resectability, such as isolated limb chemoperfusion, proton radiation therapy, using an open MRI during the surgery to map the tumor etc. Different doctors can have different perks they use for it and it needs to be investigated properly. There are cases when the amputation is still not avoidable but you do not know that yet. Ask Anthony to read what we post, try not to iterate it to him as the message could be lost in translation. He can have a surgery for the primary and still go to a trial as a next step as he has lung metastases to be used as a mark for the measurements.
Olga
Re: Nelfinavir (Viracept) - NIH
kstull I have sent you a private message with Dr. Goldberg's contact info. He used to be at Dana Farber. He usually responds quickly to email. He is an expert on ASPS.
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Fictional
Re: Nelfinavir (Viracept) - NIH
John is a very nice guy and extremely conscientious - he was the pediatric oncologist that we were referred to at Dana Farber, but he took a job in Florida this school year. We also found that he was very responsive by email. We only saw him once but we kept in contact by email a lot until this summer. I should probably tell him about the recent good news we had about ARQ197.
John had a interest in ASPS, but he is relatively a "kid" - a clinical instructor who just finished his research postdoc in Fisher's lab. He took a job to be Assistant Prof at USF (that is the lowest level professor position...I was this in Neurology once) and to direct the early trials program there.
I don't know if John is still focusing his interest in ASPS - that was when he was at Dana Farber because Demetri saw adult sarcomas and Fisher was doing basis science in sarcomas, and he was given pediatric sarcomas, and had an interest in the ASPS biology.
Because ASPS is so rare, it's hard to know whether there is such a thing as a clinical expert in ASPS (most see only a few cases over decades of their practice), and I suspect that either Judson or Maki have treated more patients with ASPS over the years because John hasn't been in clinical practice that long. For kids, Pappo may have the largest clinical experience - at least he wrote a paper about the largest series (he is now at Texas Heart Institute and is nice about conversing by email too). John recommended anti-angiogenesis factors and was interested in c-met, but at that time he didn't have some of the new agents in trials (peds onc tends to lag adult clinical trials). John was schooled in the Dana Farber philosophy of don't operate unless you really have to, however - very different from MSK (Sloan Kettering), MD Anderson, UCLA, or St Judes.
I don't know who would be the go-to person at MSK...maybe Maki? In the UK it would be Ian Judson - Judson was also nice about quickly answering a question re: email. I have heard some complaints about feeling like a "number" at MSK, but they have a policy that if you want a consult, they will arrange an appointment as soon as that day or the next week day (pretty good!...not months to get an appointment).
My oncologist told me that Judson's bias was surgery only (and not chemo) but I do know he had mentioned Sutent and I think his group is involved with the increasing dose trial of ARQ197 in ASPS.
John had a interest in ASPS, but he is relatively a "kid" - a clinical instructor who just finished his research postdoc in Fisher's lab. He took a job to be Assistant Prof at USF (that is the lowest level professor position...I was this in Neurology once) and to direct the early trials program there.
I don't know if John is still focusing his interest in ASPS - that was when he was at Dana Farber because Demetri saw adult sarcomas and Fisher was doing basis science in sarcomas, and he was given pediatric sarcomas, and had an interest in the ASPS biology.
Because ASPS is so rare, it's hard to know whether there is such a thing as a clinical expert in ASPS (most see only a few cases over decades of their practice), and I suspect that either Judson or Maki have treated more patients with ASPS over the years because John hasn't been in clinical practice that long. For kids, Pappo may have the largest clinical experience - at least he wrote a paper about the largest series (he is now at Texas Heart Institute and is nice about conversing by email too). John recommended anti-angiogenesis factors and was interested in c-met, but at that time he didn't have some of the new agents in trials (peds onc tends to lag adult clinical trials). John was schooled in the Dana Farber philosophy of don't operate unless you really have to, however - very different from MSK (Sloan Kettering), MD Anderson, UCLA, or St Judes.
I don't know who would be the go-to person at MSK...maybe Maki? In the UK it would be Ian Judson - Judson was also nice about quickly answering a question re: email. I have heard some complaints about feeling like a "number" at MSK, but they have a policy that if you want a consult, they will arrange an appointment as soon as that day or the next week day (pretty good!...not months to get an appointment).
My oncologist told me that Judson's bias was surgery only (and not chemo) but I do know he had mentioned Sutent and I think his group is involved with the increasing dose trial of ARQ197 in ASPS.
Re: Nelfinavir (Viracept) - NIH
I realize you were not impressed with the surgeon Dana Farber recommended you to, but since they recommended you to a surgeon I do not understand the "the Dana Farber philosophy of don't operate unless you really have to." Dr. Goldberg also recommended my son have surgery on his primary. Your response seems quite illogical.
Are you claiming Dr. Goldberg is not an expert? Because of his age? Or am I misinterpreting your comments?
Are you claiming Dr. Goldberg is not an expert? Because of his age? Or am I misinterpreting your comments?
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Fictional
Re: Nelfinavir (Viracept) - NIH
Sorry, I need to clarify.
They recommend removing primaries for ASPS, but they do not believe in thoracotomy for lung metastases unless a particular metastasis poses an impending danger to neighboring structures.
I would not consider Dr. Goldberg a clinical ASPS expert because he does not have much clinical experience. He only just finished his postdoctoral training. His postdoctoral training was working in a basic research lab. A clinical instructor is the first job one gets after training. John has not been in practice long enough to follow patients for a long time - something that matters in ASPS. John was very honest with us about his relative lack of clinical expertise in ASPS...but perhaps because both my husband and I are fellow doctors. We did fly out to see him because we heard he was an "expert" and were disappointed to find this was not the case (at least in our opinion). ASPS is very rare after all.
The peds sarcoma "expert" at Dana Farber is now Dr Albritton, who is primarily an epidemiologist, with no particular expertise in sarcoma. That is because John left and someone had to take over his clinic.
Please lets not get into attacks here- I am sharing information as well as opinion, and anyone is welcome to disagree.
They recommend removing primaries for ASPS, but they do not believe in thoracotomy for lung metastases unless a particular metastasis poses an impending danger to neighboring structures.
I would not consider Dr. Goldberg a clinical ASPS expert because he does not have much clinical experience. He only just finished his postdoctoral training. His postdoctoral training was working in a basic research lab. A clinical instructor is the first job one gets after training. John has not been in practice long enough to follow patients for a long time - something that matters in ASPS. John was very honest with us about his relative lack of clinical expertise in ASPS...but perhaps because both my husband and I are fellow doctors. We did fly out to see him because we heard he was an "expert" and were disappointed to find this was not the case (at least in our opinion). ASPS is very rare after all.
The peds sarcoma "expert" at Dana Farber is now Dr Albritton, who is primarily an epidemiologist, with no particular expertise in sarcoma. That is because John left and someone had to take over his clinic.
Please lets not get into attacks here- I am sharing information as well as opinion, and anyone is welcome to disagree.
Re: Nelfinavir (Viracept) - NIH
The best place to get a second opinion with the goal to back up the idea that primary and also if possible mets have to be resected in ASPS in order to acheve the long term survival is MSK, they wrote the latest article on it (this is the link to it in our library http://cureasps.org/library/6_ASPS_MSKCC_06.pdf ) so they actually have data available and the name, get a second opinion from them if the surgery for the primary and further for the lung metastases could be considered beneficial for this patient.
Olga
Re: Nelfinavir (Viracept) - NIH
Everyone--
Thank you for your comments. We will be meeting with Dr. Makie at Sloan on Friday. Also, we meet with Dr. Schrump today and he confirmed that the removal of Anthony's primary should not be our current priority. His cough gets progressively worse each day and his lung mets are growing...so he expressed that it should be our only concern is to get those under control. So I think I'll stop that fight for now and concentrate on the lung mets.
Which center was Fritz working for again? I believe our main oncologist has been trying to reach him, but with no hope. Is he at Dana Faber? Dr. Schrump also referred us to Dr. Benjamin at M.D. Anderson - so we may try there as well.
Also, NIH showed us another trial Pazopanib. This is going to be a trial for liver dysfunction on it, but has shown some progression in sarcomas in Phase 1 and Phase 2 trials in California. This was for lyposarcoma though.
So, if you all could continue to offer your opinions, we would greatly appreciate it! Thank you and hope to you all! Please continue referring us please!
Sincerely,
Kim and Anthony
Thank you for your comments. We will be meeting with Dr. Makie at Sloan on Friday. Also, we meet with Dr. Schrump today and he confirmed that the removal of Anthony's primary should not be our current priority. His cough gets progressively worse each day and his lung mets are growing...so he expressed that it should be our only concern is to get those under control. So I think I'll stop that fight for now and concentrate on the lung mets.
Which center was Fritz working for again? I believe our main oncologist has been trying to reach him, but with no hope. Is he at Dana Faber? Dr. Schrump also referred us to Dr. Benjamin at M.D. Anderson - so we may try there as well.
Also, NIH showed us another trial Pazopanib. This is going to be a trial for liver dysfunction on it, but has shown some progression in sarcomas in Phase 1 and Phase 2 trials in California. This was for lyposarcoma though.
So, if you all could continue to offer your opinions, we would greatly appreciate it! Thank you and hope to you all! Please continue referring us please!
Sincerely,
Kim and Anthony
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Fictional
Re: Nelfinavir (Viracept) - NIH
Fritz Eilber is at UCLA. His email is: fceilber@mednet.ucla.edu
His address: Division of Surgical Oncology, 54-140 CHS, UCLA Medical Center, 10833 Le Conte Avenue, Los Angeles, CA 90095-1782, USA
Phone: (310) 825-7086
Did you see my other post on Cediranib? Check out the pictures (Figure 1) in this annual report from the UK on sarcoma: http://www.icr.ac.uk/about_us/annual_re ... t/9718.pdf
It's pretty dramatic effects on multiple lung metastases in ASPS - and it says the patient was on the medication for 15 months.
There are many meds that look promising on paper, but few have shown as dramatic effects as in the photo. Paul also posted an update on Cediranib, so check out his experience in this forum, too.
Astra Zeneca expanded their clinical trials with Cediranib this year - so many more sites because it's looking more successful: http://clinicaltrials.gov/ct2/results?term=cediranib None of the studies are specifically for ASPS (too rare), but he would be eligible for several solid tumor studies I would think.
His address: Division of Surgical Oncology, 54-140 CHS, UCLA Medical Center, 10833 Le Conte Avenue, Los Angeles, CA 90095-1782, USA
Phone: (310) 825-7086
Did you see my other post on Cediranib? Check out the pictures (Figure 1) in this annual report from the UK on sarcoma: http://www.icr.ac.uk/about_us/annual_re ... t/9718.pdf
It's pretty dramatic effects on multiple lung metastases in ASPS - and it says the patient was on the medication for 15 months.
There are many meds that look promising on paper, but few have shown as dramatic effects as in the photo. Paul also posted an update on Cediranib, so check out his experience in this forum, too.
Astra Zeneca expanded their clinical trials with Cediranib this year - so many more sites because it's looking more successful: http://clinicaltrials.gov/ct2/results?term=cediranib None of the studies are specifically for ASPS (too rare), but he would be eligible for several solid tumor studies I would think.
Re: Nelfinavir (Viracept) - NIH
We are looking into this trial. There's a link to the full text of an article about how the drug works at the PubMed citation for the article (http://www.ncbi.nlm.nih.gov/pubmed/17132220): "Nelfinavir decreased VEGF mRNA expression and VEGF secretion under normoxia .... Nelfinavir also decreased the hypoxic induction of VEGF and the hypoxic induction of HIF-1alpha, which regulates VEGF promoter."
We have an appointment at NIH on Tuesday, unless that changes, I'll share anything I find out out Nelfinavir/asps -- I realize however that Anthony was there just a few months ago and there is likely nothing new to report about this trial.
Kim -- perhaps Anthony would reconsider this trial?
Also we are going to look into the Pazopanib trial that Kim mentioned -- my son has a lot of liver mets but we have no idea about whether he will qualify or not for this trial. The good news is that my son's mri from last Thursday showed no progression or new mets since his last brain mri (just six weeks ago) -- this latest mri was taken a little over a month after more cyberknife treatment to his brain. his history of brain metastasis is overwhelming.
my hopes and prayer for healing to all -- Beth
We have an appointment at NIH on Tuesday, unless that changes, I'll share anything I find out out Nelfinavir/asps -- I realize however that Anthony was there just a few months ago and there is likely nothing new to report about this trial.
Kim -- perhaps Anthony would reconsider this trial?
Also we are going to look into the Pazopanib trial that Kim mentioned -- my son has a lot of liver mets but we have no idea about whether he will qualify or not for this trial. The good news is that my son's mri from last Thursday showed no progression or new mets since his last brain mri (just six weeks ago) -- this latest mri was taken a little over a month after more cyberknife treatment to his brain. his history of brain metastasis is overwhelming.
my hopes and prayer for healing to all -- Beth
Re: Nelfinavir (Viracept) - NIH
Beth - may be since his brain mets are stable - he could be added to a cediranib pediatric trial as the exemption, since there is supporting evidence of the clinical benefit from Cediranib for ASPS patients. I collected the info I have and provided to our oncologist so they can negotiate something with the Astra Zeneca:
-The power point presentation that Pf.Judson done at the CTOS 2008 meeting - ppt file,
-The e-mail from the - Prof.Ian Judson - eml file (http://www.icr.ac.uk/research/research_ ... 2825.shtml),
-The text of the abstract regarding cediranib in ASPS that I have received from him, doc file.
-The power point presentation that Pf.Judson done at the CTOS 2008 meeting - ppt file,
-The e-mail from the - Prof.Ian Judson - eml file (http://www.icr.ac.uk/research/research_ ... 2825.shtml),
-The text of the abstract regarding cediranib in ASPS that I have received from him, doc file.
- Attachments
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- Presentation on CTOS 2008 re. Cediranib experience in 7 ASPS patients.doc
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- Cediranib in ASPS CTOS 2008 meeting.ppt
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