Stage IIC–Sylatron (peginterferon alfa-2b) decision

Ann,

I am so sorry you are going through this.  I am also sorry your Oncologist has jumped the gun on the interferon.  You are right there is much to discuss first. 

My first question is: is your oncologist a Melanoma specialist or a general oncologist?  If you are not see a Melanoma specialist you need to get a second opinion quickly.  

My next question is: You did not mention depth of your tumor or if a Sentinal Lymph Node Biopsy (SLNB)  was done.  What is the depth? 

Interferon is definately a controversial treatment for Melanoma.  It is a very personal decision.  I chose not to do it so I can't tell you about the side affects.  I can only tell you my personal reasons why I chose not to.  I happy to share the if you wish. 

Good luck,

Mary

Stage 3

Ann,

I am so sorry you are going through this.  I am also sorry your Oncologist has jumped the gun on the interferon.  You are right there is much to discuss first. 

My first question is: is your oncologist a Melanoma specialist or a general oncologist?  If you are not see a Melanoma specialist you need to get a second opinion quickly.  

My next question is: You did not mention depth of your tumor or if a Sentinal Lymph Node Biopsy (SLNB)  was done.  What is the depth? 

Interferon is definately a controversial treatment for Melanoma.  It is a very personal decision.  I chose not to do it so I can't tell you about the side affects.  I can only tell you my personal reasons why I chose not to.  I happy to share the if you wish. 

Good luck,

Mary

Stage 3

Ann,

I am so sorry you are going through this.  I am also sorry your Oncologist has jumped the gun on the interferon.  You are right there is much to discuss first. 

My first question is: is your oncologist a Melanoma specialist or a general oncologist?  If you are not see a Melanoma specialist you need to get a second opinion quickly.  

My next question is: You did not mention depth of your tumor or if a Sentinal Lymph Node Biopsy (SLNB)  was done.  What is the depth? 

Interferon is definately a controversial treatment for Melanoma.  It is a very personal decision.  I chose not to do it so I can't tell you about the side affects.  I can only tell you my personal reasons why I chose not to.  I happy to share the if you wish. 

Good luck,

Mary

Stage 3

Ann,

I was just looking at your profile and saw you are from Moody.  My son lives in Leeds and is the the head groundskeeper for Red Diamond in Moody.  We will hopefully get there soon, maybe we can meet each other. 

I did not do interfuron so I can't comment on an opinion but I would have been upset with the oncologist sending this to you without the discussion.  If you call the mel specialist at UAB and explain that you have to make the decision quickly they might make an appointment more quickly. 

Linda

"Hopefull" still NED Stage 4  – Brain MRI on Monday, crainectomy 7 weeks ago

Ann,

I was just looking at your profile and saw you are from Moody.  My son lives in Leeds and is the the head groundskeeper for Red Diamond in Moody.  We will hopefully get there soon, maybe we can meet each other. 

I did not do interfuron so I can't comment on an opinion but I would have been upset with the oncologist sending this to you without the discussion.  If you call the mel specialist at UAB and explain that you have to make the decision quickly they might make an appointment more quickly. 

Linda

"Hopefull" still NED Stage 4  – Brain MRI on Monday, crainectomy 7 weeks ago

Ann,

I was just looking at your profile and saw you are from Moody.  My son lives in Leeds and is the the head groundskeeper for Red Diamond in Moody.  We will hopefully get there soon, maybe we can meet each other. 

I did not do interfuron so I can't comment on an opinion but I would have been upset with the oncologist sending this to you without the discussion.  If you call the mel specialist at UAB and explain that you have to make the decision quickly they might make an appointment more quickly. 

Linda

"Hopefull" still NED Stage 4  – Brain MRI on Monday, crainectomy 7 weeks ago

Ann, I was 64 when diagnosed. I had surgery to remove a passel of lymph nodes and all tests after that showed no evidence of disease. I got some radiation and was also given the choice: interferon or wait & see. Interferon was explained to me the same way Mary described it. My attitude was do everything possible, no matter the odds. As it turned out all this coincided with some changes at work which led me to retire and I was fortunate to be able to do so. The first month of interferon was a bit hard but nothing like others have described. I threw up the first day and after that I was just "beat to my socks" (Fats Domino lyric for being very tired). It would have been difficult to work. The 11 months of self shots also made me tired but nothing else. All scans were clear during that year. The oncologist and nurses seemed very surprised and impressed that I did the full year. I wanted to quit because of the fatigue, but they could give me no stats on the effectiveness of truncated therapy. Six months after my last shot, scans showed spots in my lungs and liver. So with that  information coloring my hindsight, I would rather not have done the interferon. But not knowing that, I still might do it. Maybe those few months of NED got me to the FDA approval of Yervoy, which didn't work for me but is working for others. Maybe the pd1 trial I am on now gets me to the cure. That was my decision process. Yours will be right for you.

Very best wishes,

Dan

Ann, I was 64 when diagnosed. I had surgery to remove a passel of lymph nodes and all tests after that showed no evidence of disease. I got some radiation and was also given the choice: interferon or wait & see. Interferon was explained to me the same way Mary described it. My attitude was do everything possible, no matter the odds. As it turned out all this coincided with some changes at work which led me to retire and I was fortunate to be able to do so. The first month of interferon was a bit hard but nothing like others have described. I threw up the first day and after that I was just "beat to my socks" (Fats Domino lyric for being very tired). It would have been difficult to work. The 11 months of self shots also made me tired but nothing else. All scans were clear during that year. The oncologist and nurses seemed very surprised and impressed that I did the full year. I wanted to quit because of the fatigue, but they could give me no stats on the effectiveness of truncated therapy. Six months after my last shot, scans showed spots in my lungs and liver. So with that  information coloring my hindsight, I would rather not have done the interferon. But not knowing that, I still might do it. Maybe those few months of NED got me to the FDA approval of Yervoy, which didn't work for me but is working for others. Maybe the pd1 trial I am on now gets me to the cure. That was my decision process. Yours will be right for you.

Very best wishes,

Dan

Ann, I was 64 when diagnosed. I had surgery to remove a passel of lymph nodes and all tests after that showed no evidence of disease. I got some radiation and was also given the choice: interferon or wait & see. Interferon was explained to me the same way Mary described it. My attitude was do everything possible, no matter the odds. As it turned out all this coincided with some changes at work which led me to retire and I was fortunate to be able to do so. The first month of interferon was a bit hard but nothing like others have described. I threw up the first day and after that I was just "beat to my socks" (Fats Domino lyric for being very tired). It would have been difficult to work. The 11 months of self shots also made me tired but nothing else. All scans were clear during that year. The oncologist and nurses seemed very surprised and impressed that I did the full year. I wanted to quit because of the fatigue, but they could give me no stats on the effectiveness of truncated therapy. Six months after my last shot, scans showed spots in my lungs and liver. So with that  information coloring my hindsight, I would rather not have done the interferon. But not knowing that, I still might do it. Maybe those few months of NED got me to the FDA approval of Yervoy, which didn't work for me but is working for others. Maybe the pd1 trial I am on now gets me to the cure. That was my decision process. Yours will be right for you.

Very best wishes,

Dan

Do you know if you had Acral melanoma?  That's the type typically found on the soles of the feet.  I can't remember but it might have better/worse odds than other types of melanoma when it comes to Interferon but it is worth researching further.  The melanoma type is something that should be specified on your pathology report.  I suggest you get a copy of it for your own records.

Most people who have done Interferon on this board do Interferon Alpha 2B which is different that the type you received.  The Sylatron is done at lower doses for a much longer period of time.  You don't do the one month high dose induction phase or the 11 months of followup.  I've only seen a few individuals here do the Sylatron so please understand that your experiences with Interferon (if you choose to do it) might be quite different than most of those posted here.

Best wishes,

Janner

Do you know if you had Acral melanoma?  That's the type typically found on the soles of the feet.  I can't remember but it might have better/worse odds than other types of melanoma when it comes to Interferon but it is worth researching further.  The melanoma type is something that should be specified on your pathology report.  I suggest you get a copy of it for your own records.

Most people who have done Interferon on this board do Interferon Alpha 2B which is different that the type you received.  The Sylatron is done at lower doses for a much longer period of time.  You don't do the one month high dose induction phase or the 11 months of followup.  I've only seen a few individuals here do the Sylatron so please understand that your experiences with Interferon (if you choose to do it) might be quite different than most of those posted here.

Best wishes,

Janner

Do you know if you had Acral melanoma?  That's the type typically found on the soles of the feet.  I can't remember but it might have better/worse odds than other types of melanoma when it comes to Interferon but it is worth researching further.  The melanoma type is something that should be specified on your pathology report.  I suggest you get a copy of it for your own records.

Most people who have done Interferon on this board do Interferon Alpha 2B which is different that the type you received.  The Sylatron is done at lower doses for a much longer period of time.  You don't do the one month high dose induction phase or the 11 months of followup.  I've only seen a few individuals here do the Sylatron so please understand that your experiences with Interferon (if you choose to do it) might be quite different than most of those posted here.

Best wishes,

Janner

Hello Ann,

Treatment decisions are terrible, the one time in our life that we really want our doctor to tell us what to do is the one time they tell us to make up our own mind, and we usually don't have enough information to go by.

There's no right or wrong decision whichever way you go but I just wanted to chime in that that the time I did on interferon was hardly the year from hell you often see written about here, usually from people who didn't do it.  It was no picnic but it was definitely "doable".  Also, as Janner mentioned, the interferon you were sent is not the regular regime and you should be just fine on that doseage if you decide to go that route.  My feeling when trying to decide on a treatment was how I would feel if this came back, which was most likely at my stage IIIC – would I wish I had done more?  I decided to do interferon as it was the "more".  It's true that it only helps about 9% of those who take it, and it was learned after I took it that it can onl delay recurrence however if you are IN that 9% then it's huge.  And, there's nothing wrong with delaying recurrence – isn't that the whole goal until someone finds a cure?  The new wonderdrug for stage IV can only help about the same number of people so our options are not great here.

Anyway, I'm not trying to sway you one way or another – just wanted to share my experience.  It's such a personal decision.  I wish you all the best.  Let us know what you decide. 

DebbieH, stage IIIC, NED 10+ years after interferon

Hello Ann,

Treatment decisions are terrible, the one time in our life that we really want our doctor to tell us what to do is the one time they tell us to make up our own mind, and we usually don't have enough information to go by.

There's no right or wrong decision whichever way you go but I just wanted to chime in that that the time I did on interferon was hardly the year from hell you often see written about here, usually from people who didn't do it.  It was no picnic but it was definitely "doable".  Also, as Janner mentioned, the interferon you were sent is not the regular regime and you should be just fine on that doseage if you decide to go that route.  My feeling when trying to decide on a treatment was how I would feel if this came back, which was most likely at my stage IIIC – would I wish I had done more?  I decided to do interferon as it was the "more".  It's true that it only helps about 9% of those who take it, and it was learned after I took it that it can onl delay recurrence however if you are IN that 9% then it's huge.  And, there's nothing wrong with delaying recurrence – isn't that the whole goal until someone finds a cure?  The new wonderdrug for stage IV can only help about the same number of people so our options are not great here.

Anyway, I'm not trying to sway you one way or another – just wanted to share my experience.  It's such a personal decision.  I wish you all the best.  Let us know what you decide. 

DebbieH, stage IIIC, NED 10+ years after interferon

Hello Ann,

Treatment decisions are terrible, the one time in our life that we really want our doctor to tell us what to do is the one time they tell us to make up our own mind, and we usually don't have enough information to go by.

There's no right or wrong decision whichever way you go but I just wanted to chime in that that the time I did on interferon was hardly the year from hell you often see written about here, usually from people who didn't do it.  It was no picnic but it was definitely "doable".  Also, as Janner mentioned, the interferon you were sent is not the regular regime and you should be just fine on that doseage if you decide to go that route.  My feeling when trying to decide on a treatment was how I would feel if this came back, which was most likely at my stage IIIC – would I wish I had done more?  I decided to do interferon as it was the "more".  It's true that it only helps about 9% of those who take it, and it was learned after I took it that it can onl delay recurrence however if you are IN that 9% then it's huge.  And, there's nothing wrong with delaying recurrence – isn't that the whole goal until someone finds a cure?  The new wonderdrug for stage IV can only help about the same number of people so our options are not great here.

Anyway, I'm not trying to sway you one way or another – just wanted to share my experience.  It's such a personal decision.  I wish you all the best.  Let us know what you decide. 

DebbieH, stage IIIC, NED 10+ years after interferon

Ann,

I found this on another site.  Seems like it was probably a pretty typlical response to the drug and might help you.

"Located in Minnesota, I'm Stage IIIa (T3N1aM0), having been diagnosed in April 2011 with malignant melanoma of a mole just in front of my right ear. I've had WLE and CLND on the right side of my neck (including a partial parotidectomy).

In July 2011, I opted to try out Sylatron as adjuvant therapy as it was recently FDA approved. Note that my oncologist offered me 1 month of interferon with 11 months of 3x/week maintenance injections, but it seemed that the Sylatron would be much better tolerated (which appears to be the case).

As of tonight's injection, I've just completed my sixth month of Sylatron (peg-interferon alfa 2b): two months of a higher induction dose, followed by four months (so far) of a half dose (of the first two months) for maintenance.

The initial high dose inductions had pretty bad effects (fevers, chills, fatigue, lack of appetite, lack of motivation), but I was able to still continue my daily work arrangement at least 3 of the 5 working days. By time I completed the first two months, my body had definitely acclimated to the peg-interferon and most of the initial side effects have subsided (although the fatigue is perhaps the most persistent). At that time, I was back at work all 5 week days.

As time goes on (and now on the weekly maintenance dose), although I suffer some amount of fatigue about midway through my weekly injection cycle (mostly resulting in early bedtime and naps on weekends, as I inject myself on Wednesday evenings). I feel like I've achieved some amout of normalcy in my life again.

I have blood work (CBC and liver panels) done every 4 to 6 weeks. My results have so far been generally in the slightly below to low-normal ranges–no red flags for my oncologist."

.Mary

Stage 3

Ann,

I found this on another site.  Seems like it was probably a pretty typlical response to the drug and might help you.

"Located in Minnesota, I'm Stage IIIa (T3N1aM0), having been diagnosed in April 2011 with malignant melanoma of a mole just in front of my right ear. I've had WLE and CLND on the right side of my neck (including a partial parotidectomy).

In July 2011, I opted to try out Sylatron as adjuvant therapy as it was recently FDA approved. Note that my oncologist offered me 1 month of interferon with 11 months of 3x/week maintenance injections, but it seemed that the Sylatron would be much better tolerated (which appears to be the case).

As of tonight's injection, I've just completed my sixth month of Sylatron (peg-interferon alfa 2b): two months of a higher induction dose, followed by four months (so far) of a half dose (of the first two months) for maintenance.

The initial high dose inductions had pretty bad effects (fevers, chills, fatigue, lack of appetite, lack of motivation), but I was able to still continue my daily work arrangement at least 3 of the 5 working days. By time I completed the first two months, my body had definitely acclimated to the peg-interferon and most of the initial side effects have subsided (although the fatigue is perhaps the most persistent). At that time, I was back at work all 5 week days.

As time goes on (and now on the weekly maintenance dose), although I suffer some amount of fatigue about midway through my weekly injection cycle (mostly resulting in early bedtime and naps on weekends, as I inject myself on Wednesday evenings). I feel like I've achieved some amout of normalcy in my life again.

I have blood work (CBC and liver panels) done every 4 to 6 weeks. My results have so far been generally in the slightly below to low-normal ranges–no red flags for my oncologist."

.Mary

Stage 3

Ann,

I found this on another site.  Seems like it was probably a pretty typlical response to the drug and might help you.

"Located in Minnesota, I'm Stage IIIa (T3N1aM0), having been diagnosed in April 2011 with malignant melanoma of a mole just in front of my right ear. I've had WLE and CLND on the right side of my neck (including a partial parotidectomy).

In July 2011, I opted to try out Sylatron as adjuvant therapy as it was recently FDA approved. Note that my oncologist offered me 1 month of interferon with 11 months of 3x/week maintenance injections, but it seemed that the Sylatron would be much better tolerated (which appears to be the case).

As of tonight's injection, I've just completed my sixth month of Sylatron (peg-interferon alfa 2b): two months of a higher induction dose, followed by four months (so far) of a half dose (of the first two months) for maintenance.

The initial high dose inductions had pretty bad effects (fevers, chills, fatigue, lack of appetite, lack of motivation), but I was able to still continue my daily work arrangement at least 3 of the 5 working days. By time I completed the first two months, my body had definitely acclimated to the peg-interferon and most of the initial side effects have subsided (although the fatigue is perhaps the most persistent). At that time, I was back at work all 5 week days.

As time goes on (and now on the weekly maintenance dose), although I suffer some amount of fatigue about midway through my weekly injection cycle (mostly resulting in early bedtime and naps on weekends, as I inject myself on Wednesday evenings). I feel like I've achieved some amout of normalcy in my life again.

I have blood work (CBC and liver panels) done every 4 to 6 weeks. My results have so far been generally in the slightly below to low-normal ranges–no red flags for my oncologist."

.Mary

Stage 3

Scot

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