Stage IV treatment options?

Gracie,

Glad to see you post, but not for the reason why.

Now that Ipi has been FDA approved try to get your Dr to request the trial be unblinded. When I had my recurrance the trial I was on had no problems with the request. If you haven't been on Ipi then you have another option.

Except for the year of GMCSF that I was on (trial) I have been having surgery with each tumor. There have been 7 different sites or occasions.  It's not the right decision for everyone but I seem to present 1 or 2 tumors at a time – so far.  My mel specialist has brought up systemic several times but he always takes my case to the tumor board and they have backed up my request. Now he also suggests surgery (except this last time when we thought I had a recurrance in 4 weeks).    I've never been told that surgery would keep me off of any trials or further treatments. Each time I always ask "if I do this…. what would it prevent me from in the future".  This last time I also did radiation in the area after the surgery because the tumor was sitting on a nerve.  

If you are thinking surgery get an opinion from a oncology surgeon that deals with a lot of melanoma. Get his slant on surgery vs systemic.  If your mel is wide spread then usually they go systemic. If one or 2 places then after they have watched for this long they might go with surgery.  Look up various trials for exclusions and see if surgery excludes.

Good luck!

Linda   Stage IV since 06, currently NED

Gracie,

Glad to see you post, but not for the reason why.

Now that Ipi has been FDA approved try to get your Dr to request the trial be unblinded. When I had my recurrance the trial I was on had no problems with the request. If you haven't been on Ipi then you have another option.

Except for the year of GMCSF that I was on (trial) I have been having surgery with each tumor. There have been 7 different sites or occasions.  It's not the right decision for everyone but I seem to present 1 or 2 tumors at a time – so far.  My mel specialist has brought up systemic several times but he always takes my case to the tumor board and they have backed up my request. Now he also suggests surgery (except this last time when we thought I had a recurrance in 4 weeks).    I've never been told that surgery would keep me off of any trials or further treatments. Each time I always ask "if I do this…. what would it prevent me from in the future".  This last time I also did radiation in the area after the surgery because the tumor was sitting on a nerve.  

If you are thinking surgery get an opinion from a oncology surgeon that deals with a lot of melanoma. Get his slant on surgery vs systemic.  If your mel is wide spread then usually they go systemic. If one or 2 places then after they have watched for this long they might go with surgery.  Look up various trials for exclusions and see if surgery excludes.

Good luck!

Linda   Stage IV since 06, currently NED

Hi Gracie,

Welcome to MPIP though I guess you've been here awhile.  Well, thanks for posting.

I have had several surgeries for melanoma related issues.  The only systemic treatments I've had are 12 months of Interferon and 12 months of GM-CSF in a trial.  These trial results were released in the last year or so and GM-CSF showed no benefit when used alone after being resected.

The way I can see surgery at Stage IV to keep you off trials/treratments is if the surgeries (lung and chest wall) render you NED (no evidence of disease).  At Stage IV, most treatments and trials require that you have an area of measurable disease so your response to the treatment can be assessed.  In fact, at this moment I can't think of any systemic treatment for Stage IV NED (though I don't know the requirements/exclusions for the recently approved drugs…Yervoy and Zelboraf.).  Others might chime in here.

I do know one woman (MaryD) who was Stage IV NED and wanted to do an adjuvant treatment.  This was maybe 1 1/2 years ago.  She did a lot of searching and finally settled on doing pulsed IL-2 (low dose) over a 6 month period.  She was in the hospital for 3 days/2 nights each month.  It's hard to say if she received any benefit since she was NED going into the treatments (and remains NED now).

I think a second opinion would be helpful.  When you make these big decisions and have time, you want to make the best decision with all the information you gather.  Once you make a decision, no looking back.

Keep us posted.

Stay Strong
King

Stage IV 7/05 Liver mets

Hi Gracie,

Welcome to MPIP though I guess you've been here awhile.  Well, thanks for posting.

I have had several surgeries for melanoma related issues.  The only systemic treatments I've had are 12 months of Interferon and 12 months of GM-CSF in a trial.  These trial results were released in the last year or so and GM-CSF showed no benefit when used alone after being resected.

The way I can see surgery at Stage IV to keep you off trials/treratments is if the surgeries (lung and chest wall) render you NED (no evidence of disease).  At Stage IV, most treatments and trials require that you have an area of measurable disease so your response to the treatment can be assessed.  In fact, at this moment I can't think of any systemic treatment for Stage IV NED (though I don't know the requirements/exclusions for the recently approved drugs…Yervoy and Zelboraf.).  Others might chime in here.

I do know one woman (MaryD) who was Stage IV NED and wanted to do an adjuvant treatment.  This was maybe 1 1/2 years ago.  She did a lot of searching and finally settled on doing pulsed IL-2 (low dose) over a 6 month period.  She was in the hospital for 3 days/2 nights each month.  It's hard to say if she received any benefit since she was NED going into the treatments (and remains NED now).

I think a second opinion would be helpful.  When you make these big decisions and have time, you want to make the best decision with all the information you gather.  Once you make a decision, no looking back.

Keep us posted.

Stay Strong
King

Stage IV 7/05 Liver mets