looking for some experience, strength and hope. just diagnosed with lung mets recurrence

A lot of strides have been made in melanoma treatment, especially over the past year. Two new drugs have been approved for Stage IV melanoma just over the past year: Yervoy and Zelboraf. I hope that just knowing that takes a load off your mind. There also are some promising clinical trials going on right now. Some folks are responding well to IL-2 treatments.

There's a PD1 trial by Merck that is promising. Someone here recently posted a note about lung mets shrinking while on the drug.

Here's an inspiring story of someone with lung mets: http://www.melanoma.org/community/patient-stories/bob-heffernan

Folks with lung mets have also responded to Yervoy and Zelboraf.

But, the thing to remember is that each of us are individuals — some do better on certain drugs than others do.

There are not guarantees, of course, but there are options now that didn't exist in 1995!!! Options are good!!!!

A lot of strides have been made in melanoma treatment, especially over the past year. Two new drugs have been approved for Stage IV melanoma just over the past year: Yervoy and Zelboraf. I hope that just knowing that takes a load off your mind. There also are some promising clinical trials going on right now. Some folks are responding well to IL-2 treatments.

There's a PD1 trial by Merck that is promising. Someone here recently posted a note about lung mets shrinking while on the drug.

Here's an inspiring story of someone with lung mets: http://www.melanoma.org/community/patient-stories/bob-heffernan

Folks with lung mets have also responded to Yervoy and Zelboraf.

But, the thing to remember is that each of us are individuals — some do better on certain drugs than others do.

There are not guarantees, of course, but there are options now that didn't exist in 1995!!! Options are good!!!!

A lot of strides have been made in melanoma treatment, especially over the past year. Two new drugs have been approved for Stage IV melanoma just over the past year: Yervoy and Zelboraf. I hope that just knowing that takes a load off your mind. There also are some promising clinical trials going on right now. Some folks are responding well to IL-2 treatments.

There's a PD1 trial by Merck that is promising. Someone here recently posted a note about lung mets shrinking while on the drug.

Here's an inspiring story of someone with lung mets: http://www.melanoma.org/community/patient-stories/bob-heffernan

Folks with lung mets have also responded to Yervoy and Zelboraf.

But, the thing to remember is that each of us are individuals — some do better on certain drugs than others do.

There are not guarantees, of course, but there are options now that didn't exist in 1995!!! Options are good!!!!

Like you, a chest x-ray prescribed after a dry cough led to the finding of two large masses.  Mine are in the right hylum and the subcarinal space.

Good advice is given above concerning drugs available.  I personally have experience with IL2.  I was a mixed responder to IL2, with one tumor shrinking and the other growing.  It was a relief to have one of them shrink by 60%.  It improved my quality of life.  It's a tough treatment with two one-week periods in the hospital being observed as you get the IL2.  Do not write this off just because it's rough.  It provides a durable response to those who do respond.  I would recommend that you have it administered at a Melanoma center of excellence by an experienced Melanoma oncologist.

I've moved on to ipi now.  Too early to tell on that.

I would also recommend that you find the very best thoracic surgeon that you can to give you an opinion on a thoracotomy and removal of the masses.  They may tell you that the masses are non-resectable, but at least you will know.  Cutting them out gets you to NED (no evidence of disease) or at least reduces the tumor burden for the drugs.

Good luck

cltml

Like you, a chest x-ray prescribed after a dry cough led to the finding of two large masses.  Mine are in the right hylum and the subcarinal space.

Good advice is given above concerning drugs available.  I personally have experience with IL2.  I was a mixed responder to IL2, with one tumor shrinking and the other growing.  It was a relief to have one of them shrink by 60%.  It improved my quality of life.  It's a tough treatment with two one-week periods in the hospital being observed as you get the IL2.  Do not write this off just because it's rough.  It provides a durable response to those who do respond.  I would recommend that you have it administered at a Melanoma center of excellence by an experienced Melanoma oncologist.

I've moved on to ipi now.  Too early to tell on that.

I would also recommend that you find the very best thoracic surgeon that you can to give you an opinion on a thoracotomy and removal of the masses.  They may tell you that the masses are non-resectable, but at least you will know.  Cutting them out gets you to NED (no evidence of disease) or at least reduces the tumor burden for the drugs.

Good luck

cltml

Like you, a chest x-ray prescribed after a dry cough led to the finding of two large masses.  Mine are in the right hylum and the subcarinal space.

Good advice is given above concerning drugs available.  I personally have experience with IL2.  I was a mixed responder to IL2, with one tumor shrinking and the other growing.  It was a relief to have one of them shrink by 60%.  It improved my quality of life.  It's a tough treatment with two one-week periods in the hospital being observed as you get the IL2.  Do not write this off just because it's rough.  It provides a durable response to those who do respond.  I would recommend that you have it administered at a Melanoma center of excellence by an experienced Melanoma oncologist.

I've moved on to ipi now.  Too early to tell on that.

I would also recommend that you find the very best thoracic surgeon that you can to give you an opinion on a thoracotomy and removal of the masses.  They may tell you that the masses are non-resectable, but at least you will know.  Cutting them out gets you to NED (no evidence of disease) or at least reduces the tumor burden for the drugs.

Good luck

cltml

I could have written part of your post.  My melanoma was originally back in 1998 and when it advanced to my lungs, it too was found with an x-ray ordered by my PCP. Your current symtoms are exactly what I experienced but are now in the distant past.  I also have prostate cancer but from what I have been able to determine through VA, no Agent Orange exposure.

Anyway, the previous posts offer excellent ideas, the only thing I can add is to get tested for BRAF.

Best of luck.

Dick

I could have written part of your post.  My melanoma was originally back in 1998 and when it advanced to my lungs, it too was found with an x-ray ordered by my PCP. Your current symtoms are exactly what I experienced but are now in the distant past.  I also have prostate cancer but from what I have been able to determine through VA, no Agent Orange exposure.

Anyway, the previous posts offer excellent ideas, the only thing I can add is to get tested for BRAF.

Best of luck.

Dick

I could have written part of your post.  My melanoma was originally back in 1998 and when it advanced to my lungs, it too was found with an x-ray ordered by my PCP. Your current symtoms are exactly what I experienced but are now in the distant past.  I also have prostate cancer but from what I have been able to determine through VA, no Agent Orange exposure.

Anyway, the previous posts offer excellent ideas, the only thing I can add is to get tested for BRAF.

Best of luck.

Dick

I also had that cough before I was dx'ed…mine was in  the mediasteinem  at the top of my lungs, pressing against the superior vena cava…..I am stage 4 and  NED for 2 years and 2 days.  Maybe  radiation and then doing Yervoy…it was recently found to do some miracles.

I had radiation, Temodar and then surgery. I found a trial at Moffitt and   then   I did two 12 weeks of MDX-1106 (BMS Anti PD-1) and  peptides trial.  I continue now  with anti pd 1 infusion every 3 months as a booster to keep it away. I will do this booster phase for a total of 2 years. My doc says if I remain NED  we will consider keeping me on it indefinately. No biig side effects at all….a walk in the park actually.

My friend is doing the same trial but is considered a sister trial and is not NED -but it has shrunk large melanomas in her chest, under her arm  etc etc….she is doing awesome!

I also had that cough before I was dx'ed…mine was in  the mediasteinem  at the top of my lungs, pressing against the superior vena cava…..I am stage 4 and  NED for 2 years and 2 days.  Maybe  radiation and then doing Yervoy…it was recently found to do some miracles.

I had radiation, Temodar and then surgery. I found a trial at Moffitt and   then   I did two 12 weeks of MDX-1106 (BMS Anti PD-1) and  peptides trial.  I continue now  with anti pd 1 infusion every 3 months as a booster to keep it away. I will do this booster phase for a total of 2 years. My doc says if I remain NED  we will consider keeping me on it indefinately. No biig side effects at all….a walk in the park actually.

My friend is doing the same trial but is considered a sister trial and is not NED -but it has shrunk large melanomas in her chest, under her arm  etc etc….she is doing awesome!

I also had that cough before I was dx'ed…mine was in  the mediasteinem  at the top of my lungs, pressing against the superior vena cava…..I am stage 4 and  NED for 2 years and 2 days.  Maybe  radiation and then doing Yervoy…it was recently found to do some miracles.

I had radiation, Temodar and then surgery. I found a trial at Moffitt and   then   I did two 12 weeks of MDX-1106 (BMS Anti PD-1) and  peptides trial.  I continue now  with anti pd 1 infusion every 3 months as a booster to keep it away. I will do this booster phase for a total of 2 years. My doc says if I remain NED  we will consider keeping me on it indefinately. No biig side effects at all….a walk in the park actually.

My friend is doing the same trial but is considered a sister trial and is not NED -but it has shrunk large melanomas in her chest, under her arm  etc etc….she is doing awesome!