looking for hope from others plz

Hi, 

My name is Emily and my 34 year old husband has stage 4 mel in his bones and a few spots on his lung as well. We have also done the tafinlar/mek pills ( they worked for about 5 months) yesterday he did his 4th yervoy we rescan in 4 weeks. We began our battle last Sept with stage 4 and here we are still fighting… he feels good today and that's all I can ask for. I'm thinking we will start pd1 very soon. Sorry I'm not any real help as far as long term survivor, I am however ever offering my support if you need me I'm here or on FB ( Emily Ryder Turner). 

Emily

Hi, 

My name is Emily and my 34 year old husband has stage 4 mel in his bones and a few spots on his lung as well. We have also done the tafinlar/mek pills ( they worked for about 5 months) yesterday he did his 4th yervoy we rescan in 4 weeks. We began our battle last Sept with stage 4 and here we are still fighting… he feels good today and that's all I can ask for. I'm thinking we will start pd1 very soon. Sorry I'm not any real help as far as long term survivor, I am however ever offering my support if you need me I'm here or on FB ( Emily Ryder Turner). 

Emily

Hi, 

My name is Emily and my 34 year old husband has stage 4 mel in his bones and a few spots on his lung as well. We have also done the tafinlar/mek pills ( they worked for about 5 months) yesterday he did his 4th yervoy we rescan in 4 weeks. We began our battle last Sept with stage 4 and here we are still fighting… he feels good today and that's all I can ask for. I'm thinking we will start pd1 very soon. Sorry I'm not any real help as far as long term survivor, I am however ever offering my support if you need me I'm here or on FB ( Emily Ryder Turner). 

Emily

I'm sorry you are going through such a tough time CS.  Your husband's high fever isn't a typical reaction to Ipi but I have heard of it happening.  I hope someone will chime in with a similar experience and can offer some advice on what they did.  Ipi is really tough to judge its effectiveness due to the delayed response it often has. Are there any other abnormal readings other than the fever (liver numbers or diarhea)?  Are you guys being seen by a melanoma specialist?  Are your current doctors giving you any idea what they think the next step should be?  Probably the most obvious next step would be to switch to Anti-PD1 (Keytruda) but as you may know that requires to fail Ipi first.  I would think that having a severe reaction to Ipi may qualify as a Ipi failure so I'd be talking to my doctors about that possibility.  The other option would be a clinical trial such as TIL or a trial combining anti-PD1 with another agent.  If you are interested in that option you could provide your general location so others might be able to let you know of trials near you that may be available.  Hang in there.

Brian

I'm sorry you are going through such a tough time CS.  Your husband's high fever isn't a typical reaction to Ipi but I have heard of it happening.  I hope someone will chime in with a similar experience and can offer some advice on what they did.  Ipi is really tough to judge its effectiveness due to the delayed response it often has. Are there any other abnormal readings other than the fever (liver numbers or diarhea)?  Are you guys being seen by a melanoma specialist?  Are your current doctors giving you any idea what they think the next step should be?  Probably the most obvious next step would be to switch to Anti-PD1 (Keytruda) but as you may know that requires to fail Ipi first.  I would think that having a severe reaction to Ipi may qualify as a Ipi failure so I'd be talking to my doctors about that possibility.  The other option would be a clinical trial such as TIL or a trial combining anti-PD1 with another agent.  If you are interested in that option you could provide your general location so others might be able to let you know of trials near you that may be available.  Hang in there.

Brian

I'm sorry you are going through such a tough time CS.  Your husband's high fever isn't a typical reaction to Ipi but I have heard of it happening.  I hope someone will chime in with a similar experience and can offer some advice on what they did.  Ipi is really tough to judge its effectiveness due to the delayed response it often has. Are there any other abnormal readings other than the fever (liver numbers or diarhea)?  Are you guys being seen by a melanoma specialist?  Are your current doctors giving you any idea what they think the next step should be?  Probably the most obvious next step would be to switch to Anti-PD1 (Keytruda) but as you may know that requires to fail Ipi first.  I would think that having a severe reaction to Ipi may qualify as a Ipi failure so I'd be talking to my doctors about that possibility.  The other option would be a clinical trial such as TIL or a trial combining anti-PD1 with another agent.  If you are interested in that option you could provide your general location so others might be able to let you know of trials near you that may be available.  Hang in there.

Brian

Oh, Crystale,

I am so sorry you and your husband are having to deal with melanoma and side effects from his treatments.  We must not be far apart geographically.  I live in Chattanooga.  As I'm sure you already know, Vandy as well as Sarah Cannon, like Brian mentioned, have good services to offer melanoma patients.  I know that it is hard to believe these meds can be effective when your husband is having such a difficult time despite the treatments he has used so far…but I wanted to give you some data that might give you hope that better days can be in store.

First of all, when using immunotherapy (like ipi and the anti-PD1 drugs) THEY don't have to cross the blood brain barrier, because the T-cells they put into action do!!!!  Furthermore, we are learning more and more about the receptors that are on the surface of brain tumors.  The receptors for a wide variety of checkpoint inhibitors are on brain tumors!!!  Here's what the experts say:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/more-reasons-to-treat-melanoma-brain.html

The real trick is finding the drug and treatment plan that will work for your husband.  Which I realize is not so easy!  But, here's a breakdown of various sources noting how treatments CAN work in the brain:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/cytotoxic-t-cells-and-brafi-work-on.html

Here's a breakdown of anti-PD1 works generally and in the brain, specifically:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

And here is an overview of treatment for brain mets:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html

I know this is a lot of information that may be daunting just now.  But, I wanted to show you that brain mets can be addressed.  Unfortunately, as you and your husband are sadly aware….it's still not easy.  But, there are some positive possibilities.  Hang in there.  Wishing you and your husband well.  Celeste

Oh, Crystale,

I am so sorry you and your husband are having to deal with melanoma and side effects from his treatments.  We must not be far apart geographically.  I live in Chattanooga.  As I'm sure you already know, Vandy as well as Sarah Cannon, like Brian mentioned, have good services to offer melanoma patients.  I know that it is hard to believe these meds can be effective when your husband is having such a difficult time despite the treatments he has used so far…but I wanted to give you some data that might give you hope that better days can be in store.

First of all, when using immunotherapy (like ipi and the anti-PD1 drugs) THEY don't have to cross the blood brain barrier, because the T-cells they put into action do!!!!  Furthermore, we are learning more and more about the receptors that are on the surface of brain tumors.  The receptors for a wide variety of checkpoint inhibitors are on brain tumors!!!  Here's what the experts say:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/more-reasons-to-treat-melanoma-brain.html

The real trick is finding the drug and treatment plan that will work for your husband.  Which I realize is not so easy!  But, here's a breakdown of various sources noting how treatments CAN work in the brain:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/cytotoxic-t-cells-and-brafi-work-on.html

Here's a breakdown of anti-PD1 works generally and in the brain, specifically:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

And here is an overview of treatment for brain mets:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html

I know this is a lot of information that may be daunting just now.  But, I wanted to show you that brain mets can be addressed.  Unfortunately, as you and your husband are sadly aware….it's still not easy.  But, there are some positive possibilities.  Hang in there.  Wishing you and your husband well.  Celeste

Oh, Crystale,

I am so sorry you and your husband are having to deal with melanoma and side effects from his treatments.  We must not be far apart geographically.  I live in Chattanooga.  As I'm sure you already know, Vandy as well as Sarah Cannon, like Brian mentioned, have good services to offer melanoma patients.  I know that it is hard to believe these meds can be effective when your husband is having such a difficult time despite the treatments he has used so far…but I wanted to give you some data that might give you hope that better days can be in store.

First of all, when using immunotherapy (like ipi and the anti-PD1 drugs) THEY don't have to cross the blood brain barrier, because the T-cells they put into action do!!!!  Furthermore, we are learning more and more about the receptors that are on the surface of brain tumors.  The receptors for a wide variety of checkpoint inhibitors are on brain tumors!!!  Here's what the experts say:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/more-reasons-to-treat-melanoma-brain.html

The real trick is finding the drug and treatment plan that will work for your husband.  Which I realize is not so easy!  But, here's a breakdown of various sources noting how treatments CAN work in the brain:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/cytotoxic-t-cells-and-brafi-work-on.html

Here's a breakdown of anti-PD1 works generally and in the brain, specifically:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

And here is an overview of treatment for brain mets:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html

I know this is a lot of information that may be daunting just now.  But, I wanted to show you that brain mets can be addressed.  Unfortunately, as you and your husband are sadly aware….it's still not easy.  But, there are some positive possibilities.  Hang in there.  Wishing you and your husband well.  Celeste