Advise/Questions

My recommendation wouldf be to make an appointment with Dr. Weber and drive down to Moffitt for a 3rd opinion.  IMO he's one of the best if not the best.  I just don't know about those options you've been given.

Brian

My recommendation wouldf be to make an appointment with Dr. Weber and drive down to Moffitt for a 3rd opinion.  IMO he's one of the best if not the best.  I just don't know about those options you've been given.

Brian

My recommendation wouldf be to make an appointment with Dr. Weber and drive down to Moffitt for a 3rd opinion.  IMO he's one of the best if not the best.  I just don't know about those options you've been given.

Brian

If your UAB doc is referring to BRAF inhibitors…which are taken orally…that advice may well be correct. Your mutation, is not the BRAF V600E mutation that approximately 50% of melanoma patients have and are those who gain the best response from the BRAF inhibitors.  Yervoy (ipi)…possibly in combination with other drugs….would be a good first line, standard of care.  It has about a 20% response rate in most melanoma patients.  It is given IV as an infusion.  The anti-PD1 products (Nivolumab – also known as Opdivo and Pembrolizumab – also known as Keytruda), have a little better than 30% response rate, and are FDA approved for patients who have tried and failed Yervoy as well as the BRAF inhibitors if BRAF positive.  Weird, I know…but that is the deal.  There are clincal trials that give Nivo with ipi, and the response rates are even better.  I live in Chattanooga and have participated in a Nivo trial at Moffitt in Tampa since 2010.  Needless to say, I am a fan of Weber and Moffitt.  However, Tampa is a little more than an afternoon drive from Birmingham….I assume you live near there…and UAB is a center of excellence as well.  I sought second opinions there when I was first diagnosed and some of the docs (Dr. Urist for one) are well respected and trained in melanoma.  However, when I sought initial treatment – NONE of the drugs (BRAF inhibitors, Yervoy, nor the anti-PD1 products) had FDA approval.  Things are different now.  If you want a clinical trial or a second opinion….go to Tampa.  If you want to follow the standard of care…which is very reasonable….start with Yervoy and progress to the anti-PD1 drugs if need be.  Just my opinion….from your neck of the woods. If you have questions about the various treatment options, this site, folks on this forum and searching my blog can give you additional information.  Wishing you my best.  Celeste

If your UAB doc is referring to BRAF inhibitors…which are taken orally…that advice may well be correct. Your mutation, is not the BRAF V600E mutation that approximately 50% of melanoma patients have and are those who gain the best response from the BRAF inhibitors.  Yervoy (ipi)…possibly in combination with other drugs….would be a good first line, standard of care.  It has about a 20% response rate in most melanoma patients.  It is given IV as an infusion.  The anti-PD1 products (Nivolumab – also known as Opdivo and Pembrolizumab – also known as Keytruda), have a little better than 30% response rate, and are FDA approved for patients who have tried and failed Yervoy as well as the BRAF inhibitors if BRAF positive.  Weird, I know…but that is the deal.  There are clincal trials that give Nivo with ipi, and the response rates are even better.  I live in Chattanooga and have participated in a Nivo trial at Moffitt in Tampa since 2010.  Needless to say, I am a fan of Weber and Moffitt.  However, Tampa is a little more than an afternoon drive from Birmingham….I assume you live near there…and UAB is a center of excellence as well.  I sought second opinions there when I was first diagnosed and some of the docs (Dr. Urist for one) are well respected and trained in melanoma.  However, when I sought initial treatment – NONE of the drugs (BRAF inhibitors, Yervoy, nor the anti-PD1 products) had FDA approval.  Things are different now.  If you want a clinical trial or a second opinion….go to Tampa.  If you want to follow the standard of care…which is very reasonable….start with Yervoy and progress to the anti-PD1 drugs if need be.  Just my opinion….from your neck of the woods. If you have questions about the various treatment options, this site, folks on this forum and searching my blog can give you additional information.  Wishing you my best.  Celeste

If your UAB doc is referring to BRAF inhibitors…which are taken orally…that advice may well be correct. Your mutation, is not the BRAF V600E mutation that approximately 50% of melanoma patients have and are those who gain the best response from the BRAF inhibitors.  Yervoy (ipi)…possibly in combination with other drugs….would be a good first line, standard of care.  It has about a 20% response rate in most melanoma patients.  It is given IV as an infusion.  The anti-PD1 products (Nivolumab – also known as Opdivo and Pembrolizumab – also known as Keytruda), have a little better than 30% response rate, and are FDA approved for patients who have tried and failed Yervoy as well as the BRAF inhibitors if BRAF positive.  Weird, I know…but that is the deal.  There are clincal trials that give Nivo with ipi, and the response rates are even better.  I live in Chattanooga and have participated in a Nivo trial at Moffitt in Tampa since 2010.  Needless to say, I am a fan of Weber and Moffitt.  However, Tampa is a little more than an afternoon drive from Birmingham….I assume you live near there…and UAB is a center of excellence as well.  I sought second opinions there when I was first diagnosed and some of the docs (Dr. Urist for one) are well respected and trained in melanoma.  However, when I sought initial treatment – NONE of the drugs (BRAF inhibitors, Yervoy, nor the anti-PD1 products) had FDA approval.  Things are different now.  If you want a clinical trial or a second opinion….go to Tampa.  If you want to follow the standard of care…which is very reasonable….start with Yervoy and progress to the anti-PD1 drugs if need be.  Just my opinion….from your neck of the woods. If you have questions about the various treatment options, this site, folks on this forum and searching my blog can give you additional information.  Wishing you my best.  Celeste

Well you gotta go with what your gut is telling you. That doc is right tumors could pop up while you are waiting to recover from surgery. They could pop up anytime. We just never know. I've not heard much about those trials of interferon or avastin. I've read about some stage 3 folks who did or at least tried to do interferon and it wasn't too good for them. If you want to get in one of the best results trials that you still qualify for since you haven't done a treatment then go to mofffitt and probably the pd1/yervoy trial would be good to ask about.

Artie

Well you gotta go with what your gut is telling you. That doc is right tumors could pop up while you are waiting to recover from surgery. They could pop up anytime. We just never know. I've not heard much about those trials of interferon or avastin. I've read about some stage 3 folks who did or at least tried to do interferon and it wasn't too good for them. If you want to get in one of the best results trials that you still qualify for since you haven't done a treatment then go to mofffitt and probably the pd1/yervoy trial would be good to ask about.

Artie

Well you gotta go with what your gut is telling you. That doc is right tumors could pop up while you are waiting to recover from surgery. They could pop up anytime. We just never know. I've not heard much about those trials of interferon or avastin. I've read about some stage 3 folks who did or at least tried to do interferon and it wasn't too good for them. If you want to get in one of the best results trials that you still qualify for since you haven't done a treatment then go to mofffitt and probably the pd1/yervoy trial would be good to ask about.

Artie

For all of you….What I suspect the doc at UAB was offering, is a choice from one, of a variety of trials that are combining ipi (Yervoy) with different meds…some old some new.  Here is a link to a post I made from a couple of presentations Weber made talking about that very thing:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/weber-presentation-on-present-ipi.html

As you can see from Weber's talk….ipi is being combined with Nivo, peg interferon, IDO inhibitors, Tvec and even BRAFi.  Of course, these are all in trials…though most are still recruiting and are ongoing in many locations.

Perhaps that helps explain the ipi combo's offered to you….and gives you a way to ask questions about the combo's in particular.  Ipi does have more side effects than the anti-PD1 products.  Plus, when you combine any therapy, side effects can increase as well.  I think that was also what your UAB doc was referring to when talking about your age and thinking about which combo to choose.  For instance, when ipi and nivo were first combined….a larger dose of ipi was given with a low dose of nivo.  Now, having learned more about the side effect profile of each drug as well as the effects they create when combined..the dosing is flipped…with a higher dose of nivo given with a lower dose of ipi.

Hope this helps.  Celeste

For all of you….What I suspect the doc at UAB was offering, is a choice from one, of a variety of trials that are combining ipi (Yervoy) with different meds…some old some new.  Here is a link to a post I made from a couple of presentations Weber made talking about that very thing:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/weber-presentation-on-present-ipi.html

As you can see from Weber's talk….ipi is being combined with Nivo, peg interferon, IDO inhibitors, Tvec and even BRAFi.  Of course, these are all in trials…though most are still recruiting and are ongoing in many locations.

Perhaps that helps explain the ipi combo's offered to you….and gives you a way to ask questions about the combo's in particular.  Ipi does have more side effects than the anti-PD1 products.  Plus, when you combine any therapy, side effects can increase as well.  I think that was also what your UAB doc was referring to when talking about your age and thinking about which combo to choose.  For instance, when ipi and nivo were first combined….a larger dose of ipi was given with a low dose of nivo.  Now, having learned more about the side effect profile of each drug as well as the effects they create when combined..the dosing is flipped…with a higher dose of nivo given with a lower dose of ipi.

Hope this helps.  Celeste

For all of you….What I suspect the doc at UAB was offering, is a choice from one, of a variety of trials that are combining ipi (Yervoy) with different meds…some old some new.  Here is a link to a post I made from a couple of presentations Weber made talking about that very thing:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/weber-presentation-on-present-ipi.html

As you can see from Weber's talk….ipi is being combined with Nivo, peg interferon, IDO inhibitors, Tvec and even BRAFi.  Of course, these are all in trials…though most are still recruiting and are ongoing in many locations.

Perhaps that helps explain the ipi combo's offered to you….and gives you a way to ask questions about the combo's in particular.  Ipi does have more side effects than the anti-PD1 products.  Plus, when you combine any therapy, side effects can increase as well.  I think that was also what your UAB doc was referring to when talking about your age and thinking about which combo to choose.  For instance, when ipi and nivo were first combined….a larger dose of ipi was given with a low dose of nivo.  Now, having learned more about the side effect profile of each drug as well as the effects they create when combined..the dosing is flipped…with a higher dose of nivo given with a lower dose of ipi.

Hope this helps.  Celeste