Questions on Stage 2c Melanoma

Hello David,

Sorry to hear you're dealing with this horrible disease but, rest assured, you are not alone. It's a scary time, and you're on the right path (educating yourself) aside from seeking the best medical attention that's available.

I was diagnosed with Stage 3 Melanoma (T4B) in May, 2015. My tumor was 7.1 mm, ulcerated and vascular invasion was "present". I, too, had a resection done, a Sentinel Node Biopsy, and skin graft with assurance that my margins are clear. After having blood work, CT and PET scans, I had a PICC line inserted and started Interferon Alpha-2b in August. The side effects that I encountered was nausea, diarrhea, chills and fever. The chills started while I was getting my infusions, and continued for hours after getting home. I was instructed to take (2) Tylenol, 4 hours after getting the infustion but I didn't feel any of its effect. The chills would segue into a low-grade fever, which lasted 2-4 hours and then would finally break. During the infusion, continuing throught the chills/fever time frame, I would feel nauseous even though I was taking anti-nausea medicines. I would even get them along with the infusion, but still have to have a "special cocktail" added on the days I wasn't able to receive Interferon. In my case, I would have 2-3 infusions and then have to receive fluids/anti-nausea medicines only. My blood work would be within range, but because I was so sick (vomiting/diarrhea) I was losing weight, dehydrated and very weak. Sadly, I wasn't able to complete the 20 treatments, which was to be followed by 48 weeks of 3 Interferon shots/per week. Since there is no alternative (for me) at this time, I'm doing the "watch and see", along with seeing my Oncologist & Dermatologist, alternating with CT/PET scans, every 3 months.

Not being able to complete the treatment was depressing for me, until I was reminded that only 7% realize long-term success, as well as the studies showed that the mortality rate was the same for both groups (those that received the drug vs those that didn't). After hearing that last little note, my spirits were raised considerably. I am glad that I at least tried doing it, as I would have always second-guessed myself if I didn't – but that is me.

That being said, I am sure you'll arrive at the best decision for you. Just keep in mind that not everyone experiences the stated side-effects, and I was told that many found they subsided as the treatments progress (not in my case).

I wish you the very best, David. God Bless.

Hello David,

Sorry to hear you're dealing with this horrible disease but, rest assured, you are not alone. It's a scary time, and you're on the right path (educating yourself) aside from seeking the best medical attention that's available.

I was diagnosed with Stage 3 Melanoma (T4B) in May, 2015. My tumor was 7.1 mm, ulcerated and vascular invasion was "present". I, too, had a resection done, a Sentinel Node Biopsy, and skin graft with assurance that my margins are clear. After having blood work, CT and PET scans, I had a PICC line inserted and started Interferon Alpha-2b in August. The side effects that I encountered was nausea, diarrhea, chills and fever. The chills started while I was getting my infusions, and continued for hours after getting home. I was instructed to take (2) Tylenol, 4 hours after getting the infustion but I didn't feel any of its effect. The chills would segue into a low-grade fever, which lasted 2-4 hours and then would finally break. During the infusion, continuing throught the chills/fever time frame, I would feel nauseous even though I was taking anti-nausea medicines. I would even get them along with the infusion, but still have to have a "special cocktail" added on the days I wasn't able to receive Interferon. In my case, I would have 2-3 infusions and then have to receive fluids/anti-nausea medicines only. My blood work would be within range, but because I was so sick (vomiting/diarrhea) I was losing weight, dehydrated and very weak. Sadly, I wasn't able to complete the 20 treatments, which was to be followed by 48 weeks of 3 Interferon shots/per week. Since there is no alternative (for me) at this time, I'm doing the "watch and see", along with seeing my Oncologist & Dermatologist, alternating with CT/PET scans, every 3 months.

Not being able to complete the treatment was depressing for me, until I was reminded that only 7% realize long-term success, as well as the studies showed that the mortality rate was the same for both groups (those that received the drug vs those that didn't). After hearing that last little note, my spirits were raised considerably. I am glad that I at least tried doing it, as I would have always second-guessed myself if I didn't – but that is me.

That being said, I am sure you'll arrive at the best decision for you. Just keep in mind that not everyone experiences the stated side-effects, and I was told that many found they subsided as the treatments progress (not in my case).

I wish you the very best, David. God Bless.

Hello David,

Sorry to hear you're dealing with this horrible disease but, rest assured, you are not alone. It's a scary time, and you're on the right path (educating yourself) aside from seeking the best medical attention that's available.

I was diagnosed with Stage 3 Melanoma (T4B) in May, 2015. My tumor was 7.1 mm, ulcerated and vascular invasion was "present". I, too, had a resection done, a Sentinel Node Biopsy, and skin graft with assurance that my margins are clear. After having blood work, CT and PET scans, I had a PICC line inserted and started Interferon Alpha-2b in August. The side effects that I encountered was nausea, diarrhea, chills and fever. The chills started while I was getting my infusions, and continued for hours after getting home. I was instructed to take (2) Tylenol, 4 hours after getting the infustion but I didn't feel any of its effect. The chills would segue into a low-grade fever, which lasted 2-4 hours and then would finally break. During the infusion, continuing throught the chills/fever time frame, I would feel nauseous even though I was taking anti-nausea medicines. I would even get them along with the infusion, but still have to have a "special cocktail" added on the days I wasn't able to receive Interferon. In my case, I would have 2-3 infusions and then have to receive fluids/anti-nausea medicines only. My blood work would be within range, but because I was so sick (vomiting/diarrhea) I was losing weight, dehydrated and very weak. Sadly, I wasn't able to complete the 20 treatments, which was to be followed by 48 weeks of 3 Interferon shots/per week. Since there is no alternative (for me) at this time, I'm doing the "watch and see", along with seeing my Oncologist & Dermatologist, alternating with CT/PET scans, every 3 months.

Not being able to complete the treatment was depressing for me, until I was reminded that only 7% realize long-term success, as well as the studies showed that the mortality rate was the same for both groups (those that received the drug vs those that didn't). After hearing that last little note, my spirits were raised considerably. I am glad that I at least tried doing it, as I would have always second-guessed myself if I didn't – but that is me.

That being said, I am sure you'll arrive at the best decision for you. Just keep in mind that not everyone experiences the stated side-effects, and I was told that many found they subsided as the treatments progress (not in my case).

I wish you the very best, David. God Bless.

Hi David,

I'm sorry to hear about your diagnosis.  Stage IIC can be scary since you are at a high risk for recurrence (highter than stage IIIA, I believe) with limited adjuvant options.  Was your tumor tested for Braf? If you are Braf positive, Ottawa is listed as still recruiting for the Brim8 Vemurafenib adjuvant trial.   I'm not necessarily recommending that trial,  just pointing out it might be an option to consider if you are Braf positive (and knowing your Braf status could be potentially helpful down the road)

The good news is that there are now many effective options for treatment if you happen to have a recurrence. When my husband (IIIC  T4bn2cM0) was diagnosed that wasn't quite the case.  He participated in the adjuvant Ipi vs Interferon trial.  He was in an Ipi arm of the trial, but when considering if he would do the Interferon since there was only a recurrence free survival benefit, he said he would have considered it because there were things (Nivo/Pembro) in trials with anticipation of approval down the line. They have now been approved (both in the US and Canada)

Keep educating yourself

Best,

Kate

Hi David,

I'm sorry to hear about your diagnosis.  Stage IIC can be scary since you are at a high risk for recurrence (highter than stage IIIA, I believe) with limited adjuvant options.  Was your tumor tested for Braf? If you are Braf positive, Ottawa is listed as still recruiting for the Brim8 Vemurafenib adjuvant trial.   I'm not necessarily recommending that trial,  just pointing out it might be an option to consider if you are Braf positive (and knowing your Braf status could be potentially helpful down the road)

The good news is that there are now many effective options for treatment if you happen to have a recurrence. When my husband (IIIC  T4bn2cM0) was diagnosed that wasn't quite the case.  He participated in the adjuvant Ipi vs Interferon trial.  He was in an Ipi arm of the trial, but when considering if he would do the Interferon since there was only a recurrence free survival benefit, he said he would have considered it because there were things (Nivo/Pembro) in trials with anticipation of approval down the line. They have now been approved (both in the US and Canada)

Keep educating yourself

Best,

Kate

Hi David,

I'm sorry to hear about your diagnosis.  Stage IIC can be scary since you are at a high risk for recurrence (highter than stage IIIA, I believe) with limited adjuvant options.  Was your tumor tested for Braf? If you are Braf positive, Ottawa is listed as still recruiting for the Brim8 Vemurafenib adjuvant trial.   I'm not necessarily recommending that trial,  just pointing out it might be an option to consider if you are Braf positive (and knowing your Braf status could be potentially helpful down the road)

The good news is that there are now many effective options for treatment if you happen to have a recurrence. When my husband (IIIC  T4bn2cM0) was diagnosed that wasn't quite the case.  He participated in the adjuvant Ipi vs Interferon trial.  He was in an Ipi arm of the trial, but when considering if he would do the Interferon since there was only a recurrence free survival benefit, he said he would have considered it because there were things (Nivo/Pembro) in trials with anticipation of approval down the line. They have now been approved (both in the US and Canada)

Keep educating yourself

Best,

Kate

Hi David, who are you being seen by at the General? Dr.Song is the lead Oncologist dealing with Melanoma and clincial trials at the General Hospital. I have been seeing Dr.Harvey Finkelstein(dermatologist) for the last 3 years as well, he has an office near Bayshore and also has hours at the General. I wouldn't get stuck on survival numbers at this point, they are outdated due to all of the immunotherapy advances over the last 4 to 5 years. The % on Interferon you have is a little high, it is more like 2 or 3% or as some Oncologist like to say it has modest benefits. I did the high dose phase back in 2012 and decided to stop after 20 treatments since the stats didn't show any difference in outcomes between high dose or high dose followed by one year at lower dose. Interferon knocked me on my ass, lost 20 pounds in three weeks and spent most of my week days at the hospital getting the treatments. It was like having the flu 24hrs a day, 7 days a week for 4 weeks. Others on the forum have not had as hard a time with Interferon.  I would advise you to go up to the 2nd floor of the General and ask some of the nurses what their experiences are with Patients that get Interferon. Node negative is a good thing, and in regards to Pet scans, keep in mind that there are a lot of what they call false positives with Pet scans. I have been part of a Clinicial trial for the last 2 years called checkmate 067 which deals with Immunotherapy drugs ipi and Nivo, part of the trial is to have regular ct scans every 6 weeks for the first year and then they started to stretch things out to every 3 months. I think is makes sense to have regular scans especially if that can bring some peace of mind to you. If your melanoma ever was to progress, catching it early is always better, the lower the tumor burden the better the outcomes for later stage patients. If you ever need any help or need to talk about things I am in the phone book in Russell, Ontario. Wishing you the best!!! Ed

Hi David, who are you being seen by at the General? Dr.Song is the lead Oncologist dealing with Melanoma and clincial trials at the General Hospital. I have been seeing Dr.Harvey Finkelstein(dermatologist) for the last 3 years as well, he has an office near Bayshore and also has hours at the General. I wouldn't get stuck on survival numbers at this point, they are outdated due to all of the immunotherapy advances over the last 4 to 5 years. The % on Interferon you have is a little high, it is more like 2 or 3% or as some Oncologist like to say it has modest benefits. I did the high dose phase back in 2012 and decided to stop after 20 treatments since the stats didn't show any difference in outcomes between high dose or high dose followed by one year at lower dose. Interferon knocked me on my ass, lost 20 pounds in three weeks and spent most of my week days at the hospital getting the treatments. It was like having the flu 24hrs a day, 7 days a week for 4 weeks. Others on the forum have not had as hard a time with Interferon.  I would advise you to go up to the 2nd floor of the General and ask some of the nurses what their experiences are with Patients that get Interferon. Node negative is a good thing, and in regards to Pet scans, keep in mind that there are a lot of what they call false positives with Pet scans. I have been part of a Clinicial trial for the last 2 years called checkmate 067 which deals with Immunotherapy drugs ipi and Nivo, part of the trial is to have regular ct scans every 6 weeks for the first year and then they started to stretch things out to every 3 months. I think is makes sense to have regular scans especially if that can bring some peace of mind to you. If your melanoma ever was to progress, catching it early is always better, the lower the tumor burden the better the outcomes for later stage patients. If you ever need any help or need to talk about things I am in the phone book in Russell, Ontario. Wishing you the best!!! Ed

Hi David, who are you being seen by at the General? Dr.Song is the lead Oncologist dealing with Melanoma and clincial trials at the General Hospital. I have been seeing Dr.Harvey Finkelstein(dermatologist) for the last 3 years as well, he has an office near Bayshore and also has hours at the General. I wouldn't get stuck on survival numbers at this point, they are outdated due to all of the immunotherapy advances over the last 4 to 5 years. The % on Interferon you have is a little high, it is more like 2 or 3% or as some Oncologist like to say it has modest benefits. I did the high dose phase back in 2012 and decided to stop after 20 treatments since the stats didn't show any difference in outcomes between high dose or high dose followed by one year at lower dose. Interferon knocked me on my ass, lost 20 pounds in three weeks and spent most of my week days at the hospital getting the treatments. It was like having the flu 24hrs a day, 7 days a week for 4 weeks. Others on the forum have not had as hard a time with Interferon.  I would advise you to go up to the 2nd floor of the General and ask some of the nurses what their experiences are with Patients that get Interferon. Node negative is a good thing, and in regards to Pet scans, keep in mind that there are a lot of what they call false positives with Pet scans. I have been part of a Clinicial trial for the last 2 years called checkmate 067 which deals with Immunotherapy drugs ipi and Nivo, part of the trial is to have regular ct scans every 6 weeks for the first year and then they started to stretch things out to every 3 months. I think is makes sense to have regular scans especially if that can bring some peace of mind to you. If your melanoma ever was to progress, catching it early is always better, the lower the tumor burden the better the outcomes for later stage patients. If you ever need any help or need to talk about things I am in the phone book in Russell, Ontario. Wishing you the best!!! Ed

I was Stage 2c as well.  Diagnosed in May of 2011.  MIne was on the right leg, and had a depth of 9 mm.  I had a wide area incision and did the complete interferon treatment of of high dose/low dose over 12 months.  I am currently NED and my five year period should end in May of 2016.

I would advise you to follow the treatment plan your Dr is recomending since he is the expert.  If your Dr is recomending interferon I would do it.  That 7 percent maybe enough margin for you.  Why take a risk?

Interferon was not pleasant.  In fact it probably was the worst thing I ever did.  Everyone has different side effects, some people have none.  I had practically all them and yet with the side effects I finished!  The thought of my child not growing up with a father was what pushed me to finish.  Given the same choices again, there is no question I would do the interferon again.

Being stage 2c really kinda sucks.  You are in between the really serious cases and the more minor cases so Dr's are not sure what to do with you.  There are very few treatment options for us.  And for me when I was diagnosed there were not many treatment options besides surgery and interferon.  The Braf and Mek inhibitors were just coming to be. With the new discoverys being made I suspect our survival rate is higher than 50 %.  In 2011 that was only 40%.

A note on the percentages.  I about crapped my pants when almost five years ago I learned my five year survival rate was only 40%.  I worried a lot about that number, but here it is 5 years and I am still alive and stil NED.

Good luck and make the best choice for you

MikeWI

I was Stage 2c as well.  Diagnosed in May of 2011.  MIne was on the right leg, and had a depth of 9 mm.  I had a wide area incision and did the complete interferon treatment of of high dose/low dose over 12 months.  I am currently NED and my five year period should end in May of 2016.

I would advise you to follow the treatment plan your Dr is recomending since he is the expert.  If your Dr is recomending interferon I would do it.  That 7 percent maybe enough margin for you.  Why take a risk?

Interferon was not pleasant.  In fact it probably was the worst thing I ever did.  Everyone has different side effects, some people have none.  I had practically all them and yet with the side effects I finished!  The thought of my child not growing up with a father was what pushed me to finish.  Given the same choices again, there is no question I would do the interferon again.

Being stage 2c really kinda sucks.  You are in between the really serious cases and the more minor cases so Dr's are not sure what to do with you.  There are very few treatment options for us.  And for me when I was diagnosed there were not many treatment options besides surgery and interferon.  The Braf and Mek inhibitors were just coming to be. With the new discoverys being made I suspect our survival rate is higher than 50 %.  In 2011 that was only 40%.

A note on the percentages.  I about crapped my pants when almost five years ago I learned my five year survival rate was only 40%.  I worried a lot about that number, but here it is 5 years and I am still alive and stil NED.

Good luck and make the best choice for you

MikeWI

I was Stage 2c as well.  Diagnosed in May of 2011.  MIne was on the right leg, and had a depth of 9 mm.  I had a wide area incision and did the complete interferon treatment of of high dose/low dose over 12 months.  I am currently NED and my five year period should end in May of 2016.

I would advise you to follow the treatment plan your Dr is recomending since he is the expert.  If your Dr is recomending interferon I would do it.  That 7 percent maybe enough margin for you.  Why take a risk?

Interferon was not pleasant.  In fact it probably was the worst thing I ever did.  Everyone has different side effects, some people have none.  I had practically all them and yet with the side effects I finished!  The thought of my child not growing up with a father was what pushed me to finish.  Given the same choices again, there is no question I would do the interferon again.

Being stage 2c really kinda sucks.  You are in between the really serious cases and the more minor cases so Dr's are not sure what to do with you.  There are very few treatment options for us.  And for me when I was diagnosed there were not many treatment options besides surgery and interferon.  The Braf and Mek inhibitors were just coming to be. With the new discoverys being made I suspect our survival rate is higher than 50 %.  In 2011 that was only 40%.

A note on the percentages.  I about crapped my pants when almost five years ago I learned my five year survival rate was only 40%.  I worried a lot about that number, but here it is 5 years and I am still alive and stil NED.

Good luck and make the best choice for you

MikeWI