› Forums › General Melanoma Community › trouble finding doctor to prescribe yervoy ipi
- This topic has 30 replies, 11 voices, and was last updated 12 years, 10 months ago by
salliemae.
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- June 22, 2011 at 2:50 pm
Hi everyone,
Hi everyone,
I'm posting for my father-in-law, who has recently diagnosed stage IV melanoma, throughout lungs, on spine, liver, hip, some brain mets. He's 79 and was very active before the symptoms that eventually led to his diagnosis. He has had some traditional radiation on his spine and hip and was basically on "hospice-track" with his first, general oncologist. When we asked about yervoy, that doctor hemmed and hawed and finally got back to us that the practice didn't want to lay out the money for the drug, even though there's Medicare coverage, and BMS told me over the phone that there haven't been Medicare coverage problems that it's aware of.
So he went to a true specialist in this area. We are very glad that doctor agreed to see him, and quickly. That doctor has decided not to give him Yervoy because it takes 9-12 weeks to work and weighing in side effects given his age and frailty. If BRAF tests come back positive, that doctor has promised to try to get him in a trial with the V-drug that Genentech is testing, because it works fast.
The family is deciding whether to keep pursuing Yervoy. After all, his BRAF test may be negative. And my father-in-law is walking around the house and eating OK. He was very vigorous until recently. FOrgive me because I'm getting all this thirdhand, but have y'all ever heard of doctors refusing yervoy because of frailty? Have y'all also heard or experienced the 9 to 12 week delay? How much do the side effects really matter with a prognosis like this?
Finally,does anyone know doctors who really are prescribing Yervoy since approval?
Thanks in advance,
Salliemae
- Replies
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- June 22, 2011 at 3:01 pm
You may wish to go to the Yervoy site and read it over. Perhaps someone there can assist you further to work with medicare.
http://www.yervoy.com/patient/home.aspx
http://www.yervoy.com/patient/paying-for-yervoy.aspx
You are also correct, it may take some time to work, and it is not for everyone.
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- June 22, 2011 at 3:01 pm
You may wish to go to the Yervoy site and read it over. Perhaps someone there can assist you further to work with medicare.
http://www.yervoy.com/patient/home.aspx
http://www.yervoy.com/patient/paying-for-yervoy.aspx
You are also correct, it may take some time to work, and it is not for everyone.
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- June 22, 2011 at 3:44 pm
Hello Salliemae,
Very sorry to hear about your father. This group has been very informative on many things that are needed for the mel patient and the family and the support is great.
My husband was on the ipilimumab (yervoy) clinical trial. He started showing signs of regression of the visible tumors between weeks 4 and 7 of the 12 week trial. His only side effects were the itch and rash. He was very fortunate to not get the diarrhea. His overall regression is 39 – 40% with some reaching just over 50%. He is now in the maintenance phase. He also was on the arm that also received GM-CSF which are shots we inject every day for 14 days then a week off for the 12 week trial as well and they are also included in the maintenance phase.
Judy wife of Gene_S melanoma stage IV.
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- June 22, 2011 at 3:44 pm
Hello Salliemae,
Very sorry to hear about your father. This group has been very informative on many things that are needed for the mel patient and the family and the support is great.
My husband was on the ipilimumab (yervoy) clinical trial. He started showing signs of regression of the visible tumors between weeks 4 and 7 of the 12 week trial. His only side effects were the itch and rash. He was very fortunate to not get the diarrhea. His overall regression is 39 – 40% with some reaching just over 50%. He is now in the maintenance phase. He also was on the arm that also received GM-CSF which are shots we inject every day for 14 days then a week off for the 12 week trial as well and they are also included in the maintenance phase.
Judy wife of Gene_S melanoma stage IV.
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- June 22, 2011 at 4:36 pm
One thing I just don't understand is why wait to give the BRAF drugs. They have little to no side effects and if a person is BRAF positive they can show an almost immediate turnaround. If it doesn't work then so be it, but I think it's better than waiting weeks or months for BRAF testing results when time is of the essence.
Frank
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- June 22, 2011 at 4:36 pm
One thing I just don't understand is why wait to give the BRAF drugs. They have little to no side effects and if a person is BRAF positive they can show an almost immediate turnaround. If it doesn't work then so be it, but I think it's better than waiting weeks or months for BRAF testing results when time is of the essence.
Frank
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- June 22, 2011 at 9:36 pm
Hi Frank,
I have been thinking the same with regards to why waiting. It is true that they work pretty quickly, IF there is response. Here are a few factors to think about. First of all, which inhibitor are you going to give (BRAF or MEK). There are different side effects of taking each of these. Given the probability of the tumor being BRAF positive (on average 0.5, but higher for young people) and response rates, the probability of responding is 0.2 to 0.3 (assuming no test was done). Response is higher for BRAF inhibitors than MEK inhibitors. They are not readily available yet, and when they are it will no doubt be cheap. Just randomly placing somebody on a drug will possibly exclude them from certain trials.
Hopefully in the near future, these targeted drugs will become the new standard and side effects are well understood and managed. Maybe by then, the test for BRAF status may be a lot quicker.
I also hope that something similar can be found for folk testing BRAF negative to quickly help them reduce tumours.
Ipi is a hope for all of us to then keep things stable afterwards.
Peter, Stage IV
on GSK1120212 (after waiting a few weeks for the BRAF tests while tumours were aggressively growing)
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- June 22, 2011 at 9:36 pm
Hi Frank,
I have been thinking the same with regards to why waiting. It is true that they work pretty quickly, IF there is response. Here are a few factors to think about. First of all, which inhibitor are you going to give (BRAF or MEK). There are different side effects of taking each of these. Given the probability of the tumor being BRAF positive (on average 0.5, but higher for young people) and response rates, the probability of responding is 0.2 to 0.3 (assuming no test was done). Response is higher for BRAF inhibitors than MEK inhibitors. They are not readily available yet, and when they are it will no doubt be cheap. Just randomly placing somebody on a drug will possibly exclude them from certain trials.
Hopefully in the near future, these targeted drugs will become the new standard and side effects are well understood and managed. Maybe by then, the test for BRAF status may be a lot quicker.
I also hope that something similar can be found for folk testing BRAF negative to quickly help them reduce tumours.
Ipi is a hope for all of us to then keep things stable afterwards.
Peter, Stage IV
on GSK1120212 (after waiting a few weeks for the BRAF tests while tumours were aggressively growing)
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- June 23, 2011 at 4:08 am
You know I thought about that too but I read something before that by taking it and not having the mutation can cause serious neg.outcomes…this is not the website I was looking for but did notice it addresses the issue a little…http://www.deepdyve.com/lp/pubmed-central/pl-x4032-a-selective-braf-v600e-kinase-inhibitor-activates-the-erk-sLfsqA60kd
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- June 23, 2011 at 4:08 am
You know I thought about that too but I read something before that by taking it and not having the mutation can cause serious neg.outcomes…this is not the website I was looking for but did notice it addresses the issue a little…http://www.deepdyve.com/lp/pubmed-central/pl-x4032-a-selective-braf-v600e-kinase-inhibitor-activates-the-erk-sLfsqA60kd
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- June 23, 2011 at 1:07 am
It is unfortunate that your father in law and family have been thrown into this abyss, and for that you have my greatest empathy.
I'm going to shoot straight with you, because right now the last thing your father in law or your family needs is a bunch of platitudes
Contrary to media reports and public opinion, Yervoy is not a silver bullet. for melanoma.
When it does work, and if it works, it takes a period of time to do so , is effective for only a small group of patients and it is not known why it works for some and not others.
If that sounds familiar, that is because that is the historical story with almost all medical approaches to melanoma.
Yervoy HAS worked for some, do not misunderstand that; and I am glad it has, JerryfromCapeCod is one of the poster boys for that.
Yervoy is also a complex drug that frankly, not all doctors are equipped or skilled enough to properly administer and monitor.
Read the prescribing information: http://packageinserts.bms.com/medguide/medguide_yervoy.pdf if you doubt that.
One slipup by a doctor inexperienced with this drug could render your father in law in worse medical shape than before……………so I wouldn't be so pushy about just letting any Tom, Dick or Harry doctor shoot him up.
BRAF? Absolutely, but it has not been shown to be durable at this point, but it for sure melts some tumors …………..for a while; but then again, that's the rub with many melanoma treatments………………for some, and for a while with durable remission still held by an elusive minority while other die in their face.
To close, the last part of your post was most troubling to me………"The family is deciding whether to keep pursuing Yervoy"…………………..well, what about your father in law?
After all HE is the guy that's going to get shot up with drugs and deal with the physical consequences…………, not the "family"
His chance, his choice, nobody else.
Charlie S
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- June 23, 2011 at 4:17 am
here is a nice link about PLX 4032 http://www.jctm.caltech.edu/downloads/Nature%20article%20Lo%20&%20Ribas.pdf
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- June 23, 2011 at 4:17 am
here is a nice link about PLX 4032 http://www.jctm.caltech.edu/downloads/Nature%20article%20Lo%20&%20Ribas.pdf
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- June 23, 2011 at 1:07 am
It is unfortunate that your father in law and family have been thrown into this abyss, and for that you have my greatest empathy.
I'm going to shoot straight with you, because right now the last thing your father in law or your family needs is a bunch of platitudes
Contrary to media reports and public opinion, Yervoy is not a silver bullet. for melanoma.
When it does work, and if it works, it takes a period of time to do so , is effective for only a small group of patients and it is not known why it works for some and not others.
If that sounds familiar, that is because that is the historical story with almost all medical approaches to melanoma.
Yervoy HAS worked for some, do not misunderstand that; and I am glad it has, JerryfromCapeCod is one of the poster boys for that.
Yervoy is also a complex drug that frankly, not all doctors are equipped or skilled enough to properly administer and monitor.
Read the prescribing information: http://packageinserts.bms.com/medguide/medguide_yervoy.pdf if you doubt that.
One slipup by a doctor inexperienced with this drug could render your father in law in worse medical shape than before……………so I wouldn't be so pushy about just letting any Tom, Dick or Harry doctor shoot him up.
BRAF? Absolutely, but it has not been shown to be durable at this point, but it for sure melts some tumors …………..for a while; but then again, that's the rub with many melanoma treatments………………for some, and for a while with durable remission still held by an elusive minority while other die in their face.
To close, the last part of your post was most troubling to me………"The family is deciding whether to keep pursuing Yervoy"…………………..well, what about your father in law?
After all HE is the guy that's going to get shot up with drugs and deal with the physical consequences…………, not the "family"
His chance, his choice, nobody else.
Charlie S
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- June 23, 2011 at 2:39 pm
Thank you so much for all the thoughtful replies. We just received the news that my father-in-law is not BRAF positive.
What now? He is experiencing some fluid retention. He doesn't have a whole lot of time. he has been offered Temodar chemo and I think wants to try it. do y'all have any thoughts on that?
Do they test for other genetic mutations when they test for BRAF? Someone mentioned MEK.
This has all happened so fast and there's been no opportunity to pursue ANY kind of defense.
I welcome any thoughts, and thanks again.
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- June 23, 2011 at 3:20 pm
My husband, while quite a bit younger than your father in law, has similar spread: bones, lungs, liver, and tumor from the original lymph node infection area under his arm. We did wait for BRAF results, which came back positive in our case. Unfortunately, he didn't qualify for the trial because of liver function issues.
Yervoy was not given to us as an option by our Oncologist and I know that's because they didn't think he had enough time to take it, stand the side effects and get results before it was too late. My husband's spread has been extremely aggressive.
Our only viable option at the time was chemo. The doctor's hope was that it would shrink enough tumor burden that he might be able to quailfy for another trial.
He was put on a combo of carboplatin and paclitaxel. After the first round, my husband saw significant tumor shrinkage. So much, in fact, that his doctor wants to keep him on the chemo a while longer.
So, all this to say that chemo may be a viable option for your father in law. It might work really well, or it might at least stabilize things and buy the doctors some time to find other treatments for him.
If you introduce something like Yervoy, it might limit future treatment options if he responds to the chemotherapy.
What are your father in law's thoughts on the matter?
Michelle, wife of Don
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- June 23, 2011 at 3:20 pm
My husband, while quite a bit younger than your father in law, has similar spread: bones, lungs, liver, and tumor from the original lymph node infection area under his arm. We did wait for BRAF results, which came back positive in our case. Unfortunately, he didn't qualify for the trial because of liver function issues.
Yervoy was not given to us as an option by our Oncologist and I know that's because they didn't think he had enough time to take it, stand the side effects and get results before it was too late. My husband's spread has been extremely aggressive.
Our only viable option at the time was chemo. The doctor's hope was that it would shrink enough tumor burden that he might be able to quailfy for another trial.
He was put on a combo of carboplatin and paclitaxel. After the first round, my husband saw significant tumor shrinkage. So much, in fact, that his doctor wants to keep him on the chemo a while longer.
So, all this to say that chemo may be a viable option for your father in law. It might work really well, or it might at least stabilize things and buy the doctors some time to find other treatments for him.
If you introduce something like Yervoy, it might limit future treatment options if he responds to the chemotherapy.
What are your father in law's thoughts on the matter?
Michelle, wife of Don
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- June 24, 2011 at 1:20 pm
and there's also the ACT (Adoptive Cell Transfer)/TIL (Tumor Infiltrating Lymhocytes) clinical trials — at NCI, MD Anderson and Moffitt. Wild Type are fine for those.
This search link captures at least some if not most of those.
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- June 24, 2011 at 1:20 pm
and there's also the ACT (Adoptive Cell Transfer)/TIL (Tumor Infiltrating Lymhocytes) clinical trials — at NCI, MD Anderson and Moffitt. Wild Type are fine for those.
This search link captures at least some if not most of those.
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- June 23, 2011 at 2:39 pm
Thank you so much for all the thoughtful replies. We just received the news that my father-in-law is not BRAF positive.
What now? He is experiencing some fluid retention. He doesn't have a whole lot of time. he has been offered Temodar chemo and I think wants to try it. do y'all have any thoughts on that?
Do they test for other genetic mutations when they test for BRAF? Someone mentioned MEK.
This has all happened so fast and there's been no opportunity to pursue ANY kind of defense.
I welcome any thoughts, and thanks again.
-
- June 23, 2011 at 2:39 pm
Thank you so much for all the thoughtful replies. We just received the news that my father-in-law is not BRAF positive.
What now? He is experiencing some fluid retention. He doesn't have a whole lot of time. he has been offered Temodar chemo and I think wants to try it. do y'all have any thoughts on that?
Do they test for other genetic mutations when they test for BRAF? Someone mentioned MEK.
This has all happened so fast and there's been no opportunity to pursue ANY kind of defense.
I welcome any thoughts, and thanks again.
-
- June 23, 2011 at 2:39 pm
Thank you so much for all the thoughtful replies. We just received the news that my father-in-law is not BRAF positive.
What now? He is experiencing some fluid retention. He doesn't have a whole lot of time. he has been offered Temodar chemo and I think wants to try it. do y'all have any thoughts on that?
Do they test for other genetic mutations when they test for BRAF? Someone mentioned MEK.
This has all happened so fast and there's been no opportunity to pursue ANY kind of defense.
I welcome any thoughts, and thanks again.
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- June 23, 2011 at 10:17 pm
You can email my oncologist, Dr. Jeffrey Weber. He is one of the experts on Yervoy. He usually responds to emails the same day. His address is: [email protected]
God Bless,
Jim M.
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- June 23, 2011 at 11:55 pm
yes, yervoy is so expensive and many hospital pharmacies don't want to stock it…i am having this problem now…clinical trial.gov might be a place to start investigating…yervoy combined with a chemo drug might be a good idea. i think they are gearing up combinations of yervoy and other drugs in trials
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- June 23, 2011 at 11:55 pm
yes, yervoy is so expensive and many hospital pharmacies don't want to stock it…i am having this problem now…clinical trial.gov might be a place to start investigating…yervoy combined with a chemo drug might be a good idea. i think they are gearing up combinations of yervoy and other drugs in trials
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- June 23, 2011 at 10:17 pm
You can email my oncologist, Dr. Jeffrey Weber. He is one of the experts on Yervoy. He usually responds to emails the same day. His address is: [email protected]
God Bless,
Jim M.
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