The interferon or peg-interferon choice at Stage II

There is no way that any one cancer center knows  about ALL treatments available.  It is just inconceivable given the current state of science.

As a reference, look back five years ago treatment wise and imagine you want to sign up for five years into the future.

I'm not against anything but being stupid, and to sign up for five years into the future with a treatment that really is for Hep-C and just hi-jacked for melanoma is quite ill advised.

There is no way that any one cancer center knows  about ALL treatments available.  It is just inconceivable given the current state of science.

As a reference, look back five years ago treatment wise and imagine you want to sign up for five years into the future.

I'm not against anything but being stupid, and to sign up for five years into the future with a treatment that really is for Hep-C and just hi-jacked for melanoma is quite ill advised.

I guess what I meant to say is that they know all the treatments available in my area.  I'm sure they're very well informed though on most of the treatments available.  What's a shame is that you have to be well, kind of a jerk about it!  We're all here for support and help in making life decisions.  If our doctors/specialists are recommending a treatment I'm sure it's in our best interest to consider all our options.  By insinuating someone is stupid in their life decision isn't very supportive or helpful.  Maybe you should consider your comments before posting them!  Do we need to be reminded of the old saying…..If you don't have anything nice to say then don't say it! 

I realize this is your opinion but keep in mind there are kinder ways to put your words.  The fact that you posted anonymously only shows that you know your comment wouldn't be received well. 

If you yourself has Melanoma or know someone who does then you must know all too well that we need all the support we can get.  Please take care!

Denise

I guess what I meant to say is that they know all the treatments available in my area.  I'm sure they're very well informed though on most of the treatments available.  What's a shame is that you have to be well, kind of a jerk about it!  We're all here for support and help in making life decisions.  If our doctors/specialists are recommending a treatment I'm sure it's in our best interest to consider all our options.  By insinuating someone is stupid in their life decision isn't very supportive or helpful.  Maybe you should consider your comments before posting them!  Do we need to be reminded of the old saying…..If you don't have anything nice to say then don't say it! 

I realize this is your opinion but keep in mind there are kinder ways to put your words.  The fact that you posted anonymously only shows that you know your comment wouldn't be received well. 

If you yourself has Melanoma or know someone who does then you must know all too well that we need all the support we can get.  Please take care!

Denise

Denise:

It was only by the mis click of my mouse that I posted as Anon rather than my name to your original post,, so let me be cllear about my frame of reference..

I am Stage IV with active disease, have been since 1996 and was Stage III nine years prior to that……………makes my total melanoma playground experience at 24 years.

More than ten of those years I have been a  participant in this forum.  The love of my life died in my arms from melanoma almost five years ago.  I have had in excess of 300 injections/infusions of different drugs, 14major  surgeries, participated in seven clinical trials, When first diagnosed there was no MRI or PET,,,,,,,,,CT scans were still in clinical trials.  I participated in the original  clinical trials for   lax cell therapy and IL2, polypeptide vaccines, polyvalent vaccines and monoclonal vaccines among others.

I have been in the homes, hospitals , clinics, and hospice of melanoma patients.  And yes, I am opinionated.  And yes, to some, putting it politely I can be a jerk when it comes to melanoma…………..many would call me an asshole.

But you know what?  I have been there and done that for 24 years of melanoma history in the trenches and I am  always going to give an honest appraisal of that experience for the sole reason being of hoping that others can learn.

So, yes, your statment that your docs know "all" the treatments,,,,,,,,,,,,,,,,well,that just is not true…………………..no more than "we got it all" is.

I don't insinuate anyone is stupid, but the mantra, when Jeff Patterson first created this website in honor of his sis in law was clear and solid " KNOWLEDGE IS POWER"

I am compassionate, filled with empathy, but will not abide with the concept that doctors know all about a disease they know lilittle about..

And yes, this is my opnion, but I have earned it, and my only job here is to hope that people learn from it……………and with melanoma, some people can be hard heads.

I want you to do well Denise, but please don't be too fast to dismiss or embrace something that requires study and due consideration.

Cheers,

Charlie S

Thank you so much Charlie!  I appreciate what you've been through, my heart goes out to you and your beloved wife!  Your insight is appreciated to the fullest!  It makes a difference when you know who your talking to and the knowledge they have.  I've only been dealing with this for not even 2 months!!  I can't imagine what you've been through!  Have you or your wife tried Interferon?  My cousin's daughter died in 2007 after being diagnosed 2C initially.  She did the watch and wait.  After a year she passed out at work.  Melanoma had consumed her whole body!  Her family wishes they would have opted for more treatments.  So you see I have a personal agenda too!!  I can't watch and wait!  There aren't anymore options for my stage!!  At least within a local area for me.  I can't afford to travel to other states, I can't afford to be sick!!  I've found out that the most important thing to this is to remain positive!!  Hope is never lost until all is lost!! 

Thanks again Charlie!!

Denise

Also I wanted to include that when I went to San Fran Dr. Weber said that my pathology report says sparse infiltration .2mm to one lymph node.  I was told by my surgeon that it's considered negative because it's sparse!!  Dr. Weber said that this would be considered positive!!  So my diagnosis could be considered 3C!  He said it's controversial!  I can't imagine the fact that there were cells in a lymph node would matter, sparse or not!!  Anyway my diagnosis could be 2C or 3C I guess it would depend on who you talk to!!  ARE YOU KIDDING ME!!  Someone else told me on this site that sparse is positive!  The fact that it was in transit whether sparse or not!!  The way I look at it is I have to beat this!  I don't have a choice!!  You've been fighting for a long time Charlie and you of all people know that we have to fight!!  I WILL NEVER GIVE UP!! 

Denise

Also I wanted to include that when I went to San Fran Dr. Weber said that my pathology report says sparse infiltration .2mm to one lymph node.  I was told by my surgeon that it's considered negative because it's sparse!!  Dr. Weber said that this would be considered positive!!  So my diagnosis could be considered 3C!  He said it's controversial!  I can't imagine the fact that there were cells in a lymph node would matter, sparse or not!!  Anyway my diagnosis could be 2C or 3C I guess it would depend on who you talk to!!  ARE YOU KIDDING ME!!  Someone else told me on this site that sparse is positive!  The fact that it was in transit whether sparse or not!!  The way I look at it is I have to beat this!  I don't have a choice!!  You've been fighting for a long time Charlie and you of all people know that we have to fight!!  I WILL NEVER GIVE UP!! 

Denise

Thank you so much Charlie!  I appreciate what you've been through, my heart goes out to you and your beloved wife!  Your insight is appreciated to the fullest!  It makes a difference when you know who your talking to and the knowledge they have.  I've only been dealing with this for not even 2 months!!  I can't imagine what you've been through!  Have you or your wife tried Interferon?  My cousin's daughter died in 2007 after being diagnosed 2C initially.  She did the watch and wait.  After a year she passed out at work.  Melanoma had consumed her whole body!  Her family wishes they would have opted for more treatments.  So you see I have a personal agenda too!!  I can't watch and wait!  There aren't anymore options for my stage!!  At least within a local area for me.  I can't afford to travel to other states, I can't afford to be sick!!  I've found out that the most important thing to this is to remain positive!!  Hope is never lost until all is lost!! 

Thanks again Charlie!!

Denise

Denise:

It was only by the mis click of my mouse that I posted as Anon rather than my name to your original post,, so let me be cllear about my frame of reference..

I am Stage IV with active disease, have been since 1996 and was Stage III nine years prior to that……………makes my total melanoma playground experience at 24 years.

More than ten of those years I have been a  participant in this forum.  The love of my life died in my arms from melanoma almost five years ago.  I have had in excess of 300 injections/infusions of different drugs, 14major  surgeries, participated in seven clinical trials, When first diagnosed there was no MRI or PET,,,,,,,,,CT scans were still in clinical trials.  I participated in the original  clinical trials for   lax cell therapy and IL2, polypeptide vaccines, polyvalent vaccines and monoclonal vaccines among others.

I have been in the homes, hospitals , clinics, and hospice of melanoma patients.  And yes, I am opinionated.  And yes, to some, putting it politely I can be a jerk when it comes to melanoma…………..many would call me an asshole.

But you know what?  I have been there and done that for 24 years of melanoma history in the trenches and I am  always going to give an honest appraisal of that experience for the sole reason being of hoping that others can learn.

So, yes, your statment that your docs know "all" the treatments,,,,,,,,,,,,,,,,well,that just is not true…………………..no more than "we got it all" is.

I don't insinuate anyone is stupid, but the mantra, when Jeff Patterson first created this website in honor of his sis in law was clear and solid " KNOWLEDGE IS POWER"

I am compassionate, filled with empathy, but will not abide with the concept that doctors know all about a disease they know lilittle about..

And yes, this is my opnion, but I have earned it, and my only job here is to hope that people learn from it……………and with melanoma, some people can be hard heads.

I want you to do well Denise, but please don't be too fast to dismiss or embrace something that requires study and due consideration.

Cheers,

Charlie S

Hi Elisa,

As I said you'll get conflicting answers regarding Interferon on this site. 

I won't be starting treatment for a couple of weeks.  I hope we can keep in touch and help each other through any rough times we may have!  I still haven't seen an oncologist except the San Fran trip.  My surgeon hasn't referred me as of yet.  My primary care doctor saw my mole/tumor and sent me to a surgeon for the biopsy.  Once confirmed mm he did surgery less than a week later.  I had my PET Scan and Brain MRI one month later then my surgeon wanted me to talk to some specialists so now I'm going to see a local oncologist with a ton of information and ready to start treatments.  One thing they told me in San Fran is to have your Vitamin D levels checked along with your other blood work.  We get Vitamin D from the sun and since we also get Melanoma from the sun they've found that people with MM often have low levels.  Vitamin D is a cancer fighting vitamin so it's important to have your levels checked and take a supplement if it's low. 

Take care,

Denise

Hi Elisa,

As I said you'll get conflicting answers regarding Interferon on this site. 

I won't be starting treatment for a couple of weeks.  I hope we can keep in touch and help each other through any rough times we may have!  I still haven't seen an oncologist except the San Fran trip.  My surgeon hasn't referred me as of yet.  My primary care doctor saw my mole/tumor and sent me to a surgeon for the biopsy.  Once confirmed mm he did surgery less than a week later.  I had my PET Scan and Brain MRI one month later then my surgeon wanted me to talk to some specialists so now I'm going to see a local oncologist with a ton of information and ready to start treatments.  One thing they told me in San Fran is to have your Vitamin D levels checked along with your other blood work.  We get Vitamin D from the sun and since we also get Melanoma from the sun they've found that people with MM often have low levels.  Vitamin D is a cancer fighting vitamin so it's important to have your levels checked and take a supplement if it's low. 

Take care,

Denise

Well here's the thing, interferon is a very old treatment about to bite the dust. Yervoy could certainly take its place soon.  It is not effective  in Hepatitis C or melanoma. But there are strong political and financial reasons it is still prescribed and this pushed Peg Interferon through last year.  The melanoma centers known for excellence and financially independent that don't prescribe it include the MAYO Clinic, Sloan Kettering, and Johns Hopkins.  The N. Ca. Melanoma center was very strong for Leukine for years and not interferon, until it failed in trials a year ago..  A well informed patient lives longer and happier.  I'd get another opinion on the pathology with that high mitotic rate like at UCSF or Ca. Pacific.

Well here's the thing, interferon is a very old treatment about to bite the dust. Yervoy could certainly take its place soon.  It is not effective  in Hepatitis C or melanoma. But there are strong political and financial reasons it is still prescribed and this pushed Peg Interferon through last year.  The melanoma centers known for excellence and financially independent that don't prescribe it include the MAYO Clinic, Sloan Kettering, and Johns Hopkins.  The N. Ca. Melanoma center was very strong for Leukine for years and not interferon, until it failed in trials a year ago..  A well informed patient lives longer and happier.  I'd get another opinion on the pathology with that high mitotic rate like at UCSF or Ca. Pacific.

Anyone who posts as anonymous and isn't brave enough to stand behind their word isn't worth the time of day. You are a troll, Mr. Anonymous.

And Melanoma Mom is not ANONYMOUS?  Rather hypocritical wouldn't you say.  Okay, I'll be Melanoma Pop and then I'm not a troll anymore who simply wants to see people do some research before they take a treatment.

And Melanoma Mom is not ANONYMOUS?  Rather hypocritical wouldn't you say.  Okay, I'll be Melanoma Pop and then I'm not a troll anymore who simply wants to see people do some research before they take a treatment.

No, it's not anonymous, actually. I have a profile you or anyone can look at, I have shared info about my teenage son battling melanoma. Thus, I am Melanoma Mom. I am also a stage 4 thyroid cancer survivor. 

It is obvious that your way is the only way and anyone who chooses otherwise will face your wrath. 

Again, hiding behind "Anonymous" makes you a loud-talking coward. 

Feel free to respond, but I won't be reading it. Miserable people like you won't change. Thankfully I am not like you.

No, it's not anonymous, actually. I have a profile you or anyone can look at, I have shared info about my teenage son battling melanoma. Thus, I am Melanoma Mom. I am also a stage 4 thyroid cancer survivor. 

It is obvious that your way is the only way and anyone who chooses otherwise will face your wrath. 

Again, hiding behind "Anonymous" makes you a loud-talking coward. 

Feel free to respond, but I won't be reading it. Miserable people like you won't change. Thankfully I am not like you.

Anyone who posts as anonymous and isn't brave enough to stand behind their word isn't worth the time of day. You are a troll, Mr. Anonymous.

Stage 2C is what I am  It's a worse diagnosis than being 3A or 3B!  I think because of the depth and ulceration.  The Interferon has been proven to work better with the Ulcerated tumors!  I don't think I can sit back and watch and wait.  If I don't do the Interferon and I recur I'll always wonder if it would have worked!! 

Denise

Stage 2C is what I am  It's a worse diagnosis than being 3A or 3B!  I think because of the depth and ulceration.  The Interferon has been proven to work better with the Ulcerated tumors!  I don't think I can sit back and watch and wait.  If I don't do the Interferon and I recur I'll always wonder if it would have worked!! 

Denise

Denise,

I totally get where you are coming from! Our 14 year old son's growth was also extremely deep – 14mm like yours, and ulcerated. His nodes and scans were clear, thankfully, but they highly encouraged us at Dana-Farber to try Interferon. Our son has completed six months of treatment. 

I really wish the statistics were more favorable. It truly comes down to what your gut tells you to do … our son said that he wanted to try it, because if he didn't and the cancer came back, he would always question his decision. So at least he can feel he tried it. Only time will tell and of course, we will never know truly if the Interferon helped in any way. I believe in my heart he will remain NED. He is a strong, courageous boy who just rode 600 miles on his bike along the West coast and I believe he can conquer anything! But, that's a proud Mom speaking. 🙂

Best of luck and know that there are many of us supporting you on this road.

Elizabeth, "Melanoma Mom"

Denise,

I totally get where you are coming from! Our 14 year old son's growth was also extremely deep – 14mm like yours, and ulcerated. His nodes and scans were clear, thankfully, but they highly encouraged us at Dana-Farber to try Interferon. Our son has completed six months of treatment. 

I really wish the statistics were more favorable. It truly comes down to what your gut tells you to do … our son said that he wanted to try it, because if he didn't and the cancer came back, he would always question his decision. So at least he can feel he tried it. Only time will tell and of course, we will never know truly if the Interferon helped in any way. I believe in my heart he will remain NED. He is a strong, courageous boy who just rode 600 miles on his bike along the West coast and I believe he can conquer anything! But, that's a proud Mom speaking. 🙂

Best of luck and know that there are many of us supporting you on this road.

Elizabeth, "Melanoma Mom"

Denise,

I've been reading all of the comments back and forth on this topic, I didn't take interfuron but I have to comment.  There will be lots more people within the next month or two that normally would not be on interfuron, but will be now.  There is a trial that is for stage IV and possible stage III (just didn't pay attention to that fact when it was explained to me) that is for those that are NED. It's yervoy at 10 mg against interfuron. 

My Dr did discuss it with me but if I got the interfuron arm I just couldn't drive 5 hours round trip everyday for the first month. 

Over the years there have been many that have used interfuron,  and many, even if they have recurred feel that maybe it helped the recurrance be localized.  I totally get your feeling that you need to do something. I do hope your Dr has talked to you about getting on an antidepressant before you start.

Please ignore those that seem to not get the idea of a "support" board.  It's one thing to state an opinon but another to get to the point of harrassment.

Wishing you the best, please keep us up to date!

Linda

Stage IV  5 years, NED 6 weeks

Denise,

I've been reading all of the comments back and forth on this topic, I didn't take interfuron but I have to comment.  There will be lots more people within the next month or two that normally would not be on interfuron, but will be now.  There is a trial that is for stage IV and possible stage III (just didn't pay attention to that fact when it was explained to me) that is for those that are NED. It's yervoy at 10 mg against interfuron. 

My Dr did discuss it with me but if I got the interfuron arm I just couldn't drive 5 hours round trip everyday for the first month. 

Over the years there have been many that have used interfuron,  and many, even if they have recurred feel that maybe it helped the recurrance be localized.  I totally get your feeling that you need to do something. I do hope your Dr has talked to you about getting on an antidepressant before you start.

Please ignore those that seem to not get the idea of a "support" board.  It's one thing to state an opinon but another to get to the point of harrassment.

Wishing you the best, please keep us up to date!

Linda

Stage IV  5 years, NED 6 weeks

Thank you Elizabeth and Linda!

  This wasn't my post originally but when a fellow warrior is going through the same thing as I then I feel like I have a sister that I need to defend as well as myself!  It's a personal decision that isn't easy to face or deal with.  I've heard people say "oh your ONLY stage 2!"  Only stage 2??  It's Melanoma people!  I don't want to be stage anything!!  I definately don't want to be stage IV and if there's some hope with Interferon then I'm willing to take that!!  I have all the signs of a tumor that will "most likely" recur!  That being said who's to say that there aren't any stray cells that could attach themselves anywhere!  Also the PET scan doesn't detect tumors smaller than 5-6mm!!  I could be stage IV now!  Facing your mortality and "getting your affairs in order" is something that I never thought I'd have to deal with until at a much older age!  I'm not worried about myself!  I'm worried about everyone that I'd leave behind!  I've become a much more compassionate person in the last couple of months.  I've realized that there are more important things in life then dealing with someone who lacks compassion.  Although I appreciate everyones opinion there's a diference between offering an opinion and pushing one!! 

There's evidence out there that the Interferon works with ulcerated tumors.  There's no evidence of a political conspiracy theory.  Although I'm all for paranoid dilusions that could possibly have merit.  Let's face it there's probably a cure for cancer and the pharmacuetical companies are holding back!! 

At the end of the day it's me and my own decision's that I have to live with.  I don't think the Interferon is going to kill me but Melanoma will!!  Why not take your chances!!

Thank you for your support!  🙂  Best of luck to you both too!!  We're in this together to fight and win!!  Keep us posted on you as well!! 

Denise

Thank you Elizabeth and Linda!

  This wasn't my post originally but when a fellow warrior is going through the same thing as I then I feel like I have a sister that I need to defend as well as myself!  It's a personal decision that isn't easy to face or deal with.  I've heard people say "oh your ONLY stage 2!"  Only stage 2??  It's Melanoma people!  I don't want to be stage anything!!  I definately don't want to be stage IV and if there's some hope with Interferon then I'm willing to take that!!  I have all the signs of a tumor that will "most likely" recur!  That being said who's to say that there aren't any stray cells that could attach themselves anywhere!  Also the PET scan doesn't detect tumors smaller than 5-6mm!!  I could be stage IV now!  Facing your mortality and "getting your affairs in order" is something that I never thought I'd have to deal with until at a much older age!  I'm not worried about myself!  I'm worried about everyone that I'd leave behind!  I've become a much more compassionate person in the last couple of months.  I've realized that there are more important things in life then dealing with someone who lacks compassion.  Although I appreciate everyones opinion there's a diference between offering an opinion and pushing one!! 

There's evidence out there that the Interferon works with ulcerated tumors.  There's no evidence of a political conspiracy theory.  Although I'm all for paranoid dilusions that could possibly have merit.  Let's face it there's probably a cure for cancer and the pharmacuetical companies are holding back!! 

At the end of the day it's me and my own decision's that I have to live with.  I don't think the Interferon is going to kill me but Melanoma will!!  Why not take your chances!!

Thank you for your support!  🙂  Best of luck to you both too!!  We're in this together to fight and win!!  Keep us posted on you as well!! 

Denise

Latest word about interferon is that Merck who purchased Schering who makes interferon, won't be investing any further in the drug.  The studies have proven it to be ineffective at giving any overall survival advantage to patients and the toxicity and long term affects are still being discovered.

Anonymous,

show me where you found this information where they will not be investing in interferon. 

As of right now, there really are not any drugs that work on melanoma, so we are going to take whatever clinical trial is offered to us.  I will not just sit an wait for my daughter to pass.  That is not an option.  I will do everything I can.  Every drug works different on every person as well.

The information about Merck discontinuing their investment in interferon is known in the industry.  It is a very expensive drug!  But many aren't buying it anymore.

Here is an interesting statement by Paul Chapman, of Sloan Kettering in an article in PUbMed:

The two randomized trials, in which a total of 713 patients received either adjuvant HD IFN or observation, both showed similar results [1, 2]. To be eligible for these trials, melanoma patients had to have had either deep primaries (>4 mm) or regional lymph node involvement. They were started on the trials within 70 days after complete surgical excision. With follow-up now complete in the first trial (median of 12.6 years of follow-up of survivors) and a median follow-up of 6.6 years in the second trial, neither showed an overall survival benefit associated with adjuvant HD IFN treatment. This is reflected in the pooled analysis of these two studies, which was recently published [3]. This pooled analysis showed that the survival curves were virtually superimposable (p = .42). Both treatment arms show an approximately 50% survival rate at 5 years, and there was no effect on the "tail of the survival curve,"  

The information about Merck discontinuing their investment in interferon is known in the industry.  It is a very expensive drug!  But many aren't buying it anymore.

Here is an interesting statement by Paul Chapman, of Sloan Kettering in an article in PUbMed:

The two randomized trials, in which a total of 713 patients received either adjuvant HD IFN or observation, both showed similar results [1, 2]. To be eligible for these trials, melanoma patients had to have had either deep primaries (>4 mm) or regional lymph node involvement. They were started on the trials within 70 days after complete surgical excision. With follow-up now complete in the first trial (median of 12.6 years of follow-up of survivors) and a median follow-up of 6.6 years in the second trial, neither showed an overall survival benefit associated with adjuvant HD IFN treatment. This is reflected in the pooled analysis of these two studies, which was recently published [3]. This pooled analysis showed that the survival curves were virtually superimposable (p = .42). Both treatment arms show an approximately 50% survival rate at 5 years, and there was no effect on the "tail of the survival curve,"  

well my daughter's survival rate is approx 45% without the drug anyway….  she may be one of a few that peginterferon works on.  She is taking the drug well with very mild side effects.  If this drug can kill any remaining cancer in her system, then that's what she needs.  There is nothing else out there, and I will not just watch and wait… and there has not been anything else offered to us.  Everybody's body is different and I hope and pray that this will work on my daughter.  If I can get an additional 9 months of her being cancer free, I'll take it.

well my daughter's survival rate is approx 45% without the drug anyway….  she may be one of a few that peginterferon works on.  She is taking the drug well with very mild side effects.  If this drug can kill any remaining cancer in her system, then that's what she needs.  There is nothing else out there, and I will not just watch and wait… and there has not been anything else offered to us.  Everybody's body is different and I hope and pray that this will work on my daughter.  If I can get an additional 9 months of her being cancer free, I'll take it.

Again from the study by Paul Chapman, Chair of the Melanoma Program at Sloan Kettering Cancer Center:

"What does all this mean to the patient? It means that, among patients destined to recur, a year’s worth of HD IFN treatment can delay the time of recurrence in a small subset, although for half of these patients this delay will be less than 1 year. However, the overall chance of recurrence and the overall survival is not improved. This means that, if the patient is destined to relapse and die of melanoma, HD IFN does not affect this nor does it significantly delay the time of death."

HD IFN is associated with toxicities that result in decreased performance status in virtually all patients. In the most recent HD IFN trials, severe toxicities (grade 3–4) were frequently reported for fatigue, myalgias, and hepatotoxicity (Table 1). Although toxicities such as fatigue, fever, and flu-like symptoms are universal, they are under-reported in publications since generally only grade 3 or worse toxicities are reported. Depression appears to be very common, occurring in 40% of patients if patients are assessed carefully [4]. Patients reporting a depressed mood or insomnia before starting HD IFN have been shown to be at a higher risk for worsening of depression during treatment, particularly if they also have low levels of social support [5]. In some patients, serious cardiac, hepatic, and bone marrow toxicities are also seen, and because of the need to screen for and manage these toxicities, frequent follow-up and blood tests are necessary in patients on HD IFN. This represents both a financial cost as well as a further cost in quality of life (QoL).

  I don't believe it is shown to stimulate the immune system, instead it depletes with high toxicity.

well, I came on here to share my daughter's story, and her experience with peginterferon.  She is doing well thank you very much, and I will continue to hope and pray.

well, I came on here to share my daughter's story, and her experience with peginterferon.  She is doing well thank you very much, and I will continue to hope and pray.

Again from the study by Paul Chapman, Chair of the Melanoma Program at Sloan Kettering Cancer Center:

"What does all this mean to the patient? It means that, among patients destined to recur, a year’s worth of HD IFN treatment can delay the time of recurrence in a small subset, although for half of these patients this delay will be less than 1 year. However, the overall chance of recurrence and the overall survival is not improved. This means that, if the patient is destined to relapse and die of melanoma, HD IFN does not affect this nor does it significantly delay the time of death."

HD IFN is associated with toxicities that result in decreased performance status in virtually all patients. In the most recent HD IFN trials, severe toxicities (grade 3–4) were frequently reported for fatigue, myalgias, and hepatotoxicity (Table 1). Although toxicities such as fatigue, fever, and flu-like symptoms are universal, they are under-reported in publications since generally only grade 3 or worse toxicities are reported. Depression appears to be very common, occurring in 40% of patients if patients are assessed carefully [4]. Patients reporting a depressed mood or insomnia before starting HD IFN have been shown to be at a higher risk for worsening of depression during treatment, particularly if they also have low levels of social support [5]. In some patients, serious cardiac, hepatic, and bone marrow toxicities are also seen, and because of the need to screen for and manage these toxicities, frequent follow-up and blood tests are necessary in patients on HD IFN. This represents both a financial cost as well as a further cost in quality of life (QoL).

  I don't believe it is shown to stimulate the immune system, instead it depletes with high toxicity.

Anonymous,

show me where you found this information where they will not be investing in interferon. 

As of right now, there really are not any drugs that work on melanoma, so we are going to take whatever clinical trial is offered to us.  I will not just sit an wait for my daughter to pass.  That is not an option.  I will do everything I can.  Every drug works different on every person as well.

Latest word about interferon is that Merck who purchased Schering who makes interferon, won't be investing any further in the drug.  The studies have proven it to be ineffective at giving any overall survival advantage to patients and the toxicity and long term affects are still being discovered.

Thank you so much Elisa!  I wish you the very best as well.  Keep us updated.

Hugs, Tari

Thank you so much Elisa!  I wish you the very best as well.  Keep us updated.

Hugs, Tari

Tari,

Thank you so much for your post.  I'm going to start peg interferon, probably next week, and appreciate you sharing your daughter's experience.  I'm glad to hear your daughter is doing well on the peg, but so sorry to hear that she and your family have to deal with this terrible disease.  She's obviously a very strong girl.   

I'm on the same page as you….my other option is to watch and wait and, with a newborn, it's just not an option for me.

Did you have any problems with your insurance covering the interferon?  I have BCBS PPO and my co pay is $5000 a month!  Needless to say, we're asking BCBS to reclassify the drug from a Tier 4 non formulary medication to another tier so that I will have a normal copay.

Thank you! Michelle

Hi Michelle,

Thank you for your kind words.  I am sad she is going through this.  She is strong and very positive.  I am so sorry that you are going through this… no one should have to, and if they do, I wish there was better medicine for melanoma.

We are very fortunate that Courtney is a St. Jude patient and we do not have any costs.  Courtney is on a 10 year clinical trial there.  If we had to pay, our insurance does not cover drugs. 

I wish you the very best with your peginterferon, and please keep us updated.

Take care,  Tari

Hi Michelle,

Thank you for your kind words.  I am sad she is going through this.  She is strong and very positive.  I am so sorry that you are going through this… no one should have to, and if they do, I wish there was better medicine for melanoma.

We are very fortunate that Courtney is a St. Jude patient and we do not have any costs.  Courtney is on a 10 year clinical trial there.  If we had to pay, our insurance does not cover drugs. 

I wish you the very best with your peginterferon, and please keep us updated.

Take care,  Tari

Tari,

Thank you so much for your post.  I'm going to start peg interferon, probably next week, and appreciate you sharing your daughter's experience.  I'm glad to hear your daughter is doing well on the peg, but so sorry to hear that she and your family have to deal with this terrible disease.  She's obviously a very strong girl.   

I'm on the same page as you….my other option is to watch and wait and, with a newborn, it's just not an option for me.

Did you have any problems with your insurance covering the interferon?  I have BCBS PPO and my co pay is $5000 a month!  Needless to say, we're asking BCBS to reclassify the drug from a Tier 4 non formulary medication to another tier so that I will have a normal copay.

Thank you! Michelle