Differences of Opinion and Treatment – Feedback welcomed, and appreciated.

Hi – I'm also a patient at Sloan (I see Dr Dickson).  There are a few others here that are also Sloan patients.

I have elected NOT to do interferon.  My primary was on my upper back.  Found 10/10 the week I resigned from my job in North Carolina to move up to New Jersey with a new company.  The med onc at UNC-Chapel Hill (where I had my first surgery done) suggested interferon.  Her comments to me were – it shows NO known benefit but who knows … maybe you'll be one of the odd cases it helps.  Plus, something is better than nothing.  Original staging – 3b (4.5 mm w/ ulceration, only sentinal lymph node involvement)

I then met with a med onc in Hackensack which tried to get me in a trial but then when they decided my lymph node tumor was micro vs macro I couldn't get in their trial.  I was told to come in Monday to start interferon.

There was a blizzard that sunday so I decided to get a 3rd opinion at sloan.  When trying to get in the Ipi trial in Jan '11 they found a dozen small nodules on my lungs.  I was past the time limit to get in ipi trial and they did VAT's in March which confirmed melanoma. 

I am BRAF +, but my scan in April didn't show enough measurable growth to be in the that trial… ugh!  Luckily so far my scans in June and now last week show No Evidence of Disease!  I've elected to continue a watch and wait vs starting ipi or any other drugs to try and 'kill off' any cells that may be floating around in me.

It's a tough decision to make…  I do feel like I'm in great hands at Sloan.  The link to my blog is below if you want to see more of my story…  or if you want to chat some about it just let me know! 

Sorry for the LONG response!  Just wanted to give you some back ground… 

Erin

Hi – I'm also a patient at Sloan (I see Dr Dickson).  There are a few others here that are also Sloan patients.

I have elected NOT to do interferon.  My primary was on my upper back.  Found 10/10 the week I resigned from my job in North Carolina to move up to New Jersey with a new company.  The med onc at UNC-Chapel Hill (where I had my first surgery done) suggested interferon.  Her comments to me were – it shows NO known benefit but who knows … maybe you'll be one of the odd cases it helps.  Plus, something is better than nothing.  Original staging – 3b (4.5 mm w/ ulceration, only sentinal lymph node involvement)

I then met with a med onc in Hackensack which tried to get me in a trial but then when they decided my lymph node tumor was micro vs macro I couldn't get in their trial.  I was told to come in Monday to start interferon.

There was a blizzard that sunday so I decided to get a 3rd opinion at sloan.  When trying to get in the Ipi trial in Jan '11 they found a dozen small nodules on my lungs.  I was past the time limit to get in ipi trial and they did VAT's in March which confirmed melanoma. 

I am BRAF +, but my scan in April didn't show enough measurable growth to be in the that trial… ugh!  Luckily so far my scans in June and now last week show No Evidence of Disease!  I've elected to continue a watch and wait vs starting ipi or any other drugs to try and 'kill off' any cells that may be floating around in me.

It's a tough decision to make…  I do feel like I'm in great hands at Sloan.  The link to my blog is below if you want to see more of my story…  or if you want to chat some about it just let me know! 

Sorry for the LONG response!  Just wanted to give you some back ground… 

Erin

Hi – I am also a patient at Sloan (I see Dr Dickson).  There are a few others here that are also Sloan patients. I have elected NOT to do interferon. My primary was on my upper back. Found 10/10 the week I resigned from my job in North Carolina to move up to New Jersey with a new company. The med onc at UNC-Chapel Hill (where I had my first surgery done) suggested interferon. Her comments to me were – it shows NO known benefit but who knows … maybe you’ll be one of the odd cases it helps. Plus, something is better than nothing. Original staging – 3b (4.5 mm w/ ulceration, only sentinel lymph node involvement

I then met with a med onc in Hackensack which tried to get me in a trial but then when they decided my lymph node tumor was micro vs macro I couldn’t get in their trial. I was told to come in Monday to start interferon. There was a blizzard that sunday so I decided to get a 3rd opinion at sloan. When trying to get in the Ipi trial in Jan 11 they found a dozen small nodules on my lungs. I was past the time limit to get in ipi trial and they did VATs in March which confirmed melanoma.

I am BRAF +, but my scan in April didn’t show enough measurable growth to be in the that trial… ugh! Luckily so far my scans in June and now last week show No Evidence of Disease! I’ve elected to continue a watch and wait vs starting ipi or any other drugs to try and kill off any cells that may be floating around in me.

It’s a tough decision to make… I do feel like I’m in great hands at Sloan. The link to my blog is below if you want to see more of my story… or if you want to chat some about it just let me know!

Sorry for the LONG response! Just wanted to give you some back ground…

Erin

Hi – I am also a patient at Sloan (I see Dr Dickson).  There are a few others here that are also Sloan patients. I have elected NOT to do interferon. My primary was on my upper back. Found 10/10 the week I resigned from my job in North Carolina to move up to New Jersey with a new company. The med onc at UNC-Chapel Hill (where I had my first surgery done) suggested interferon. Her comments to me were – it shows NO known benefit but who knows … maybe you’ll be one of the odd cases it helps. Plus, something is better than nothing. Original staging – 3b (4.5 mm w/ ulceration, only sentinel lymph node involvement

I then met with a med onc in Hackensack which tried to get me in a trial but then when they decided my lymph node tumor was micro vs macro I couldn’t get in their trial. I was told to come in Monday to start interferon. There was a blizzard that sunday so I decided to get a 3rd opinion at sloan. When trying to get in the Ipi trial in Jan 11 they found a dozen small nodules on my lungs. I was past the time limit to get in ipi trial and they did VATs in March which confirmed melanoma.

I am BRAF +, but my scan in April didn’t show enough measurable growth to be in the that trial… ugh! Luckily so far my scans in June and now last week show No Evidence of Disease! I’ve elected to continue a watch and wait vs starting ipi or any other drugs to try and kill off any cells that may be floating around in me.

It’s a tough decision to make… I do feel like I’m in great hands at Sloan. The link to my blog is below if you want to see more of my story… or if you want to chat some about it just let me know!

Sorry for the LONG response! Just wanted to give you some back ground…

Erin

Welcome to our forum. As you may have read, I am not a fan of interferon for melanoma. It is a very old drug, and I believe that there are better alternatives these days.

I have been reading about melanoma treatments since early 2007, and I still haven't found any convincing reasons why one should have interferon treatment. It is wise to be aware of the fact that it has significant toxicity and some people may have severe side effects.

Have you considered Leukine (GM-CSF)? A clinical trial is always a good option to think about.

Hope this helps.

Frank from Australia

Welcome to our forum. As you may have read, I am not a fan of interferon for melanoma. It is a very old drug, and I believe that there are better alternatives these days.

I have been reading about melanoma treatments since early 2007, and I still haven't found any convincing reasons why one should have interferon treatment. It is wise to be aware of the fact that it has significant toxicity and some people may have severe side effects.

Have you considered Leukine (GM-CSF)? A clinical trial is always a good option to think about.

Hope this helps.

Frank from Australia

I am constantly perplexed by doctors and people assigning a percentage of risk in the absence of science. 

What is it exactly that leads you , or your doctors to think you, as a person, have a 85% of relapse?

I've been at this for a long time, and would like to know where that number comes from……………….because, I do not think it can be supported by science.

Above all, medical decisions should be informed, and the number your doctor reports is not supported by any science I am aware of.

Should there be an oversight on my part, I welcome enlightenment..

This is a polite way for me to say that I think your doctor is full of shit.

Charlie S

Stage IV since 1996

Stage III nine years prior

I am constantly perplexed by doctors and people assigning a percentage of risk in the absence of science. 

What is it exactly that leads you , or your doctors to think you, as a person, have a 85% of relapse?

I've been at this for a long time, and would like to know where that number comes from……………….because, I do not think it can be supported by science.

Above all, medical decisions should be informed, and the number your doctor reports is not supported by any science I am aware of.

Should there be an oversight on my part, I welcome enlightenment..

This is a polite way for me to say that I think your doctor is full of shit.

Charlie S

Stage IV since 1996

Stage III nine years prior

Hi,

I did a year of Interferon.  I was diagnosed at 3B back in 7/09.  I went to 5 different melanoma specialists, each pushing their own trial.  I went to Sloan and saw Dr. Wolchok.  He is brilliant.  He advised against Interferon and wanted me to do a trial of Ipi (now Yervoy).  There was a 50% chance I would get the drug.  Considering my melanoma was in a spot where the sun don't shine, I didn't think my luck was all that great, and most likely, I wouldn't get the drug.  More importantly, my family wasn't comfortable with the gamble, and I couldn't bear to listen to them say, "You should have…"

So, I chose to do the Interferon.  Yes, the percentages weren't that great, but I figured someone had to be in the percentages it worked for…why not me!  I did the full year and it wasn't terrible.  I was tired.  I lost my taste.  Some brain fog, but I managed.  I didn't miss a day of work.

A few weeks ago, I had an intransit removed close to my original site.  I said, "I guess the Interferon didn't work for me."  My husband said, "Maybe it did because it didn't spread to any organs."  Who knows?

The bottom line is any treatment is a personal choice.  YOU have to be comfortable with the decision and you can never look back.  YOU have to be your own advocate and knowledge is power.  Learn everything you can about the various treatments, and then, make your decision.  The people on this board are incredibly generous and willing to share their experiences with you.  This is where I've learned everything about this disease. 

Good luck with your decision, and please feel free to email me if you have any other questions. 

Tricia

Hi,

I did a year of Interferon.  I was diagnosed at 3B back in 7/09.  I went to 5 different melanoma specialists, each pushing their own trial.  I went to Sloan and saw Dr. Wolchok.  He is brilliant.  He advised against Interferon and wanted me to do a trial of Ipi (now Yervoy).  There was a 50% chance I would get the drug.  Considering my melanoma was in a spot where the sun don't shine, I didn't think my luck was all that great, and most likely, I wouldn't get the drug.  More importantly, my family wasn't comfortable with the gamble, and I couldn't bear to listen to them say, "You should have…"

So, I chose to do the Interferon.  Yes, the percentages weren't that great, but I figured someone had to be in the percentages it worked for…why not me!  I did the full year and it wasn't terrible.  I was tired.  I lost my taste.  Some brain fog, but I managed.  I didn't miss a day of work.

A few weeks ago, I had an intransit removed close to my original site.  I said, "I guess the Interferon didn't work for me."  My husband said, "Maybe it did because it didn't spread to any organs."  Who knows?

The bottom line is any treatment is a personal choice.  YOU have to be comfortable with the decision and you can never look back.  YOU have to be your own advocate and knowledge is power.  Learn everything you can about the various treatments, and then, make your decision.  The people on this board are incredibly generous and willing to share their experiences with you.  This is where I've learned everything about this disease. 

Good luck with your decision, and please feel free to email me if you have any other questions. 

Tricia

I was dx as stage 3 with micromets to one lymph node in June, 2000. The remaining nodes were clean. The options I received for treatment at the time were a double-blinded study or Interferon. With 2 small kids at the time, I knew that I would never be able to forgive myself if I did the study and mm returned later in life. I was nauseous, had a headache for a year, and lost about 40 pounds but the year of treatment wasn't that bad. I was able to work my 30 hours a week as an accountant and keep up with my then 7 and 5 yr old kids. I realize some people have a horrible time doing Interferon. I was one of the lucky ones. I hit the 11 year mark as NED this past June. Was it the surgery alone? Was it the Interferon? I'll never know. I am positive that had I not chosen this treatment for me I would have some huge regrets if I ever see mm again.

I can tell you that whatever you decide, stand behind it 110%! When I was about 5 months into my year of Interferon, I found this BB. I then saw other options that HAD been available had I gone to a major mm treatment center. And I was mad that my onc had not given me this info. After a couple of days, I decided I would never win the "would of, could of, should of" game and figured I made the best possible choice for me with the info I had at that time.

Best of luck!

Cara Tindell

I was dx as stage 3 with micromets to one lymph node in June, 2000. The remaining nodes were clean. The options I received for treatment at the time were a double-blinded study or Interferon. With 2 small kids at the time, I knew that I would never be able to forgive myself if I did the study and mm returned later in life. I was nauseous, had a headache for a year, and lost about 40 pounds but the year of treatment wasn't that bad. I was able to work my 30 hours a week as an accountant and keep up with my then 7 and 5 yr old kids. I realize some people have a horrible time doing Interferon. I was one of the lucky ones. I hit the 11 year mark as NED this past June. Was it the surgery alone? Was it the Interferon? I'll never know. I am positive that had I not chosen this treatment for me I would have some huge regrets if I ever see mm again.

I can tell you that whatever you decide, stand behind it 110%! When I was about 5 months into my year of Interferon, I found this BB. I then saw other options that HAD been available had I gone to a major mm treatment center. And I was mad that my onc had not given me this info. After a couple of days, I decided I would never win the "would of, could of, should of" game and figured I made the best possible choice for me with the info I had at that time.

Best of luck!

Cara Tindell