Advice for first immunotherapy drug to try

Hi Mike,

Sorry for your struggle.  I will soon be 52 and have been dealing with melanoma for 13 years…over 6 of them Stage IV (with brain and lung mets)…and 6 of those NED….so there is hope!!

1.  You MUST seek help from a melanoma specialist.  The landscape of care options has changed radically since 2010 and not all local oncs have kept up.

2.  You need to know your BRAF status.  BRAF inhibitors (targeted therapy) FDA approved in 2011, work incredibly well and quickly if you are BRAF positve (even in the brain)…though for some their action is of limited duration because the tumor learns to work around the imposition.  However, some are maintained very well on these meds for years.  They should always be combined with a MEK inhibitor to decrease side effects, increase response and decrease tumor work around.

3.  Immunotherapy include (and all are FDA approved for Stage IV mel patients):

IL-2 with about a 10% response rate

anti-PD1 – Nivolumab/Opdivo or Pembrolizumab/Keytruda with about a 40% response rate

anti-CTLA4 – ipilimumab/Yervoy – about a 15% response rate

Ipi/nivo combo – about a 50 plus percent response rate

4.  Radiation…not that long ago…we didn't think that radiation worked very well in melanoma.  Then we realized that that was true when it was used alone…when it was used in combination with immunotherapy it was great and worked synergistically.  Here's a post covering a lot of data:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/review-of-abscopal-responses-after.html

We have learned that SRS (stereotactic radiation) can be used to effectively treat a large number of brain mets…effectively and without the deleterious effects of WBR.  WBR, despite the damage it causes to the brain, doesn't provide improved survival for those of us with brain mets.  Here is a recent post about treating brain mets with SRS and immunotherapy ASAP:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html

Hopefully that will help you start on your journey.  Please see a melanoma specialist and get a treatment plan in place that will get you on the path to health.  This forum houses an amazing group of surviviors and supporters.  Ask questions.  You will get answers.

I wish you well.  Celeste

Hi Mike,

Sorry for your struggle.  I will soon be 52 and have been dealing with melanoma for 13 years…over 6 of them Stage IV (with brain and lung mets)…and 6 of those NED….so there is hope!!

1.  You MUST seek help from a melanoma specialist.  The landscape of care options has changed radically since 2010 and not all local oncs have kept up.

2.  You need to know your BRAF status.  BRAF inhibitors (targeted therapy) FDA approved in 2011, work incredibly well and quickly if you are BRAF positve (even in the brain)…though for some their action is of limited duration because the tumor learns to work around the imposition.  However, some are maintained very well on these meds for years.  They should always be combined with a MEK inhibitor to decrease side effects, increase response and decrease tumor work around.

3.  Immunotherapy include (and all are FDA approved for Stage IV mel patients):

IL-2 with about a 10% response rate

anti-PD1 – Nivolumab/Opdivo or Pembrolizumab/Keytruda with about a 40% response rate

anti-CTLA4 – ipilimumab/Yervoy – about a 15% response rate

Ipi/nivo combo – about a 50 plus percent response rate

4.  Radiation…not that long ago…we didn't think that radiation worked very well in melanoma.  Then we realized that that was true when it was used alone…when it was used in combination with immunotherapy it was great and worked synergistically.  Here's a post covering a lot of data:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/review-of-abscopal-responses-after.html

We have learned that SRS (stereotactic radiation) can be used to effectively treat a large number of brain mets…effectively and without the deleterious effects of WBR.  WBR, despite the damage it causes to the brain, doesn't provide improved survival for those of us with brain mets.  Here is a recent post about treating brain mets with SRS and immunotherapy ASAP:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html

Hopefully that will help you start on your journey.  Please see a melanoma specialist and get a treatment plan in place that will get you on the path to health.  This forum houses an amazing group of surviviors and supporters.  Ask questions.  You will get answers.

I wish you well.  Celeste

Hi Mike,

Sorry for your struggle.  I will soon be 52 and have been dealing with melanoma for 13 years…over 6 of them Stage IV (with brain and lung mets)…and 6 of those NED….so there is hope!!

1.  You MUST seek help from a melanoma specialist.  The landscape of care options has changed radically since 2010 and not all local oncs have kept up.

2.  You need to know your BRAF status.  BRAF inhibitors (targeted therapy) FDA approved in 2011, work incredibly well and quickly if you are BRAF positve (even in the brain)…though for some their action is of limited duration because the tumor learns to work around the imposition.  However, some are maintained very well on these meds for years.  They should always be combined with a MEK inhibitor to decrease side effects, increase response and decrease tumor work around.

3.  Immunotherapy include (and all are FDA approved for Stage IV mel patients):

IL-2 with about a 10% response rate

anti-PD1 – Nivolumab/Opdivo or Pembrolizumab/Keytruda with about a 40% response rate

anti-CTLA4 – ipilimumab/Yervoy – about a 15% response rate

Ipi/nivo combo – about a 50 plus percent response rate

4.  Radiation…not that long ago…we didn't think that radiation worked very well in melanoma.  Then we realized that that was true when it was used alone…when it was used in combination with immunotherapy it was great and worked synergistically.  Here's a post covering a lot of data:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/review-of-abscopal-responses-after.html

We have learned that SRS (stereotactic radiation) can be used to effectively treat a large number of brain mets…effectively and without the deleterious effects of WBR.  WBR, despite the damage it causes to the brain, doesn't provide improved survival for those of us with brain mets.  Here is a recent post about treating brain mets with SRS and immunotherapy ASAP:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html

Hopefully that will help you start on your journey.  Please see a melanoma specialist and get a treatment plan in place that will get you on the path to health.  This forum houses an amazing group of surviviors and supporters.  Ask questions.  You will get answers.

I wish you well.  Celeste

Making sure you have a true melanoma expert in your corner is the most important thing, I will agree with others. Based on what you've said, seems like now is the time to get aggressive with the immunotherapy and the ipi/nivo combination therapy is the best thing going. Probably what most melanoma docs would advise for a person in your situation.  I would seek a second opinion as well on whole brain radiation, as the trend is to use stereotactic radiosurgery (SRS), cyberknife, or whatever name they want to call the targeted radiation to brain mets to treat even multiple lesions in the brain, where whole brain radiation might have formerly been used. You're a pretty young guy and stand the chance to live a very long life with successful immunotherapy treatment, something to think about it when considering radiating the whole brain.

Best of luck.

Making sure you have a true melanoma expert in your corner is the most important thing, I will agree with others. Based on what you've said, seems like now is the time to get aggressive with the immunotherapy and the ipi/nivo combination therapy is the best thing going. Probably what most melanoma docs would advise for a person in your situation.  I would seek a second opinion as well on whole brain radiation, as the trend is to use stereotactic radiosurgery (SRS), cyberknife, or whatever name they want to call the targeted radiation to brain mets to treat even multiple lesions in the brain, where whole brain radiation might have formerly been used. You're a pretty young guy and stand the chance to live a very long life with successful immunotherapy treatment, something to think about it when considering radiating the whole brain.

Best of luck.

Making sure you have a true melanoma expert in your corner is the most important thing, I will agree with others. Based on what you've said, seems like now is the time to get aggressive with the immunotherapy and the ipi/nivo combination therapy is the best thing going. Probably what most melanoma docs would advise for a person in your situation.  I would seek a second opinion as well on whole brain radiation, as the trend is to use stereotactic radiosurgery (SRS), cyberknife, or whatever name they want to call the targeted radiation to brain mets to treat even multiple lesions in the brain, where whole brain radiation might have formerly been used. You're a pretty young guy and stand the chance to live a very long life with successful immunotherapy treatment, something to think about it when considering radiating the whole brain.

Best of luck.