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The interferon or peg-interferon choice at Stage II

Forums General Melanoma Community The interferon or peg-interferon choice at Stage II

  • Post
    eaca
    Participant

      I just had a consultation with my medical oncologist today during which we discussed the Interferon decision.  The options for me are:  Wait and Watch; classic Interferon treatment; Pegylated Interferon; try to get on a trial at MD Anderson combining Peg-Interferon and peptide vaccine (gp100).  I've read up here on what others have had to say on Interferon or not, but there doesn't seem to be too much experience with the pegylated version or the vaccine.  I'm 'only' stage II, but relatively high risk because of the mitotic rate of my primary.  In

      I just had a consultation with my medical oncologist today during which we discussed the Interferon decision.  The options for me are:  Wait and Watch; classic Interferon treatment; Pegylated Interferon; try to get on a trial at MD Anderson combining Peg-Interferon and peptide vaccine (gp100).  I've read up here on what others have had to say on Interferon or not, but there doesn't seem to be too much experience with the pegylated version or the vaccine.  I'm 'only' stage II, but relatively high risk because of the mitotic rate of my primary.  In the end I know this will come down to a very personal choice, but I thought I'd put it out there for any thoughts others might have.

      After my relief over being clear after surgery, I'm now feeling confused and worried again.  Big choices to be made.  Thanks in advance for any input!

      Elisa

    Viewing 19 reply threads
    • Replies
        triciad
        Participant

          Elisa,

          I don't have any info on the Pegylated Interferon, but I did a full year on regular Interferon.  I almost made it to 2 years NED, but unfortunately, I just had a recurrence close to my original site.  I had surgery this week to remove the small intransit, so I'm good to go again.  I went from Stage 3B to Stage 3C.  I've had a really rough year with little sleep due to caring for my elderly parents (one with alzheimers) and my sick dog, so I don't blame the Interferon.  I know 2 people who are 5+ years NED who did Interferon,

          It's a very personal choice and affects everyone differently.  Good luck with your decision and never look back!

          Tricia

          triciad
          Participant

            Elisa,

            I don't have any info on the Pegylated Interferon, but I did a full year on regular Interferon.  I almost made it to 2 years NED, but unfortunately, I just had a recurrence close to my original site.  I had surgery this week to remove the small intransit, so I'm good to go again.  I went from Stage 3B to Stage 3C.  I've had a really rough year with little sleep due to caring for my elderly parents (one with alzheimers) and my sick dog, so I don't blame the Interferon.  I know 2 people who are 5+ years NED who did Interferon,

            It's a very personal choice and affects everyone differently.  Good luck with your decision and never look back!

            Tricia

              eaca
              Participant

                Tricia,

                So sorry to hear about your recurrence and your rough year, but glad that you're good to go again. Thanks for your input on your Interferon experience.  I guess one never knows what would have happened if you hadn't done it – it's the road not taken dilemma that means we can really never look back or second guess the choices we've made.

                I sincerely hope this year is much better for you than your last!

                Elisa

                eaca
                Participant

                  Tricia,

                  So sorry to hear about your recurrence and your rough year, but glad that you're good to go again. Thanks for your input on your Interferon experience.  I guess one never knows what would have happened if you hadn't done it – it's the road not taken dilemma that means we can really never look back or second guess the choices we've made.

                  I sincerely hope this year is much better for you than your last!

                  Elisa

                Cooper
                Participant

                  Do some research before you agree.  Interferon is a very harsh drug and can mess with your immune system.  Melanoma is a very immune system related disease, you need yours to be in top shape.  Peg interferon is a 5 year program and is said to be even harsher (and more money making for the industry)  Look at the research and you won't see much showing this drug prevents a comeback or makes you live longer without it.

                  Cooper
                  Participant

                    Do some research before you agree.  Interferon is a very harsh drug and can mess with your immune system.  Melanoma is a very immune system related disease, you need yours to be in top shape.  Peg interferon is a 5 year program and is said to be even harsher (and more money making for the industry)  Look at the research and you won't see much showing this drug prevents a comeback or makes you live longer without it.

                    DeniseK
                    Participant

                      Hi Elisa,

                      I just got back from the Northern California Melanoma Center in San Francisco.  They are specialists and know about all the treatments available.  I had an ulcerated 14mm clarks V tumor and I'm staged 2C.  Is your mitotic rate really 25?  That's crazy!  They told me mine was high at 4mm!!  Anyway they too are recommending the Interferon.  Although Dr. Spitler doesn't like to recommend it in our case it's been proven to help.  It has something to do with the ulcerated tumors chemistry.  They're recommending that I do Interferon or 5 years PEG Interferon.  I did research on this and the PEG interferon was only passed by the FDA 6-4, also in the 1 study that they did NOONE made it the 5 years!  It's just as toxic as the regular interferon!  The thing is that the PEG is a time release shot so it stays in your system for a whole week.  With the classic Interferon you have to do 1 month of daily infusions and 11 months of 3 x's a week self injections.  I'm sure you already know this.  I am opting for the Classic Interferon.  I personally can't imagine being sick for 5 years.  Although it affects everyone differently I would rather be done with it in 1 year.  It's a very personal decision and you have to weigh the pro's and con's for your own situation.  The way I look at it is…..If I'm going to be sick from Interferon for 5 years I better be guaranteed that I'll be cancer free.  Let us know what you decide.  Either way it's your choice.  There are alot of people on here that are really against Interferon and will try to sway your decision to not do it but I got a recommendation from specialists, even they said they don't recommend interferon usually but in our case it's different. 

                      Good luck and keep in touch it sounds like we'll be doing this together!!  πŸ™‚ 

                      Denise

                      DeniseK
                      Participant

                        Hi Elisa,

                        I just got back from the Northern California Melanoma Center in San Francisco.  They are specialists and know about all the treatments available.  I had an ulcerated 14mm clarks V tumor and I'm staged 2C.  Is your mitotic rate really 25?  That's crazy!  They told me mine was high at 4mm!!  Anyway they too are recommending the Interferon.  Although Dr. Spitler doesn't like to recommend it in our case it's been proven to help.  It has something to do with the ulcerated tumors chemistry.  They're recommending that I do Interferon or 5 years PEG Interferon.  I did research on this and the PEG interferon was only passed by the FDA 6-4, also in the 1 study that they did NOONE made it the 5 years!  It's just as toxic as the regular interferon!  The thing is that the PEG is a time release shot so it stays in your system for a whole week.  With the classic Interferon you have to do 1 month of daily infusions and 11 months of 3 x's a week self injections.  I'm sure you already know this.  I am opting for the Classic Interferon.  I personally can't imagine being sick for 5 years.  Although it affects everyone differently I would rather be done with it in 1 year.  It's a very personal decision and you have to weigh the pro's and con's for your own situation.  The way I look at it is…..If I'm going to be sick from Interferon for 5 years I better be guaranteed that I'll be cancer free.  Let us know what you decide.  Either way it's your choice.  There are alot of people on here that are really against Interferon and will try to sway your decision to not do it but I got a recommendation from specialists, even they said they don't recommend interferon usually but in our case it's different. 

                        Good luck and keep in touch it sounds like we'll be doing this together!!  πŸ™‚ 

                        Denise

                          Charlie S
                          Participant

                            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.

                            Charlie S
                            Participant

                              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.

                              DeniseK
                              Participant

                                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

                                DeniseK
                                Participant

                                  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

                                  Charlie S
                                  Participant

                                    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

                                     

                                    DeniseK
                                    Participant

                                      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

                                      DeniseK
                                      Participant

                                        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

                                        DeniseK
                                        Participant

                                          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

                                          DeniseK
                                          Participant

                                            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

                                            Charlie S
                                            Participant

                                              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

                                               

                                              eaca
                                              Participant

                                                Denise,

                                                Thank you so much for your very useful reply and the information on ulceration and interferon.  I looked up some of the studies and they confirm what my Dr. said regarding her recommendation to do interferon.  It seems that particularly for those of us still in stage II and with ulceration the results are significant.

                                                Yes, my mitotic rate of 25 does scare me, because I just keep thinking this stuff might be multiplying like crazy somewhere inside of me even though they haven't found any more of it.  But then again, your depth of 14mm is pretty scary too πŸ˜‰

                                                As an interesting aside, the Dr. who has published a lot of the research on the Interferon trials is Dr. Eggermont who is French and since I spend several months of the year in France, my Dr. said she would refer me to him on my next trip, so I could discuss my situation with him.

                                                Anyhow, yes, I think we will be doing this together – I'll probably be starting a couple of weeks after you.  Still leaning towards trying the PEG version though, as my Dr. indicated that the side-effects were generally less and fewer sticks per week appeals to me.  She said two to five years, but that can be reassessed depending on reaction and tolerance.

                                                Hope you're doing better after getting the information from SF.  I'm certainly happy to be living in the backyard of one of the best melanoma centers in the country.  I'll be looking forward to your updates and wish you well!

                                                Elisa

                                                DeniseK
                                                Participant

                                                  Hi Elisa,

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

                                                  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

                                                  DeniseK
                                                  Participant

                                                    Hi Elisa,

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

                                                    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

                                                    Cooper
                                                    Participant

                                                      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.

                                                      Cooper
                                                      Participant

                                                        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.

                                                        eaca
                                                        Participant

                                                          Anonymous,

                                                          I appreciate your concern and taking the time to post your opinions here (even if the form isn't always expressed in the most sensitive way).  There is a lot of information flying around out there and it's often hard to sort the useful from the misleading, as well as to figure out what would apply most specifically to your own case.  However, I find your sweeping generalisations a little disturbing, because you don't site any data to back them up.  How can you say that Interferon "is not effective in Hepatitis C or melanoma" when obviously for some it has been effective and for others not.  Study results give conflicting information, but often it's a question of how you cut and slice the data – you can read into it what you want.  It would be interesting to hear why you say "there are strong political and financial reasons it is still prescribed…".  What reasons and can you give me links to back up these assertions?

                                                          I'm all for being well-informed and getting multiple opinions, but I'm also careful about asking where those opinions come from and what's driving them.  If you can give me any further insights through other links or explain your own experience behind these opinions, I would appreciate it.

                                                          Wishing you the best in your fight with this disease,

                                                          Elisa

                                                          eaca
                                                          Participant

                                                            Anonymous,

                                                            I appreciate your concern and taking the time to post your opinions here (even if the form isn't always expressed in the most sensitive way).  There is a lot of information flying around out there and it's often hard to sort the useful from the misleading, as well as to figure out what would apply most specifically to your own case.  However, I find your sweeping generalisations a little disturbing, because you don't site any data to back them up.  How can you say that Interferon "is not effective in Hepatitis C or melanoma" when obviously for some it has been effective and for others not.  Study results give conflicting information, but often it's a question of how you cut and slice the data – you can read into it what you want.  It would be interesting to hear why you say "there are strong political and financial reasons it is still prescribed…".  What reasons and can you give me links to back up these assertions?

                                                            I'm all for being well-informed and getting multiple opinions, but I'm also careful about asking where those opinions come from and what's driving them.  If you can give me any further insights through other links or explain your own experience behind these opinions, I would appreciate it.

                                                            Wishing you the best in your fight with this disease,

                                                            Elisa

                                                            eaca
                                                            Participant

                                                              Denise,

                                                              I would definitely like to stay in touch and support each other in this fight and while going through our respective experiences and decisions.  I appreciate your comments and support and will be thinking of you in the next days and weeks.

                                                              Take care,

                                                              Elisa

                                                              eaca
                                                              Participant

                                                                Denise,

                                                                I would definitely like to stay in touch and support each other in this fight and while going through our respective experiences and decisions.  I appreciate your comments and support and will be thinking of you in the next days and weeks.

                                                                Take care,

                                                                Elisa

                                                                eaca
                                                                Participant

                                                                  Denise,

                                                                  Thank you so much for your very useful reply and the information on ulceration and interferon.  I looked up some of the studies and they confirm what my Dr. said regarding her recommendation to do interferon.  It seems that particularly for those of us still in stage II and with ulceration the results are significant.

                                                                  Yes, my mitotic rate of 25 does scare me, because I just keep thinking this stuff might be multiplying like crazy somewhere inside of me even though they haven't found any more of it.  But then again, your depth of 14mm is pretty scary too πŸ˜‰

                                                                  As an interesting aside, the Dr. who has published a lot of the research on the Interferon trials is Dr. Eggermont who is French and since I spend several months of the year in France, my Dr. said she would refer me to him on my next trip, so I could discuss my situation with him.

                                                                  Anyhow, yes, I think we will be doing this together – I'll probably be starting a couple of weeks after you.  Still leaning towards trying the PEG version though, as my Dr. indicated that the side-effects were generally less and fewer sticks per week appeals to me.  She said two to five years, but that can be reassessed depending on reaction and tolerance.

                                                                  Hope you're doing better after getting the information from SF.  I'm certainly happy to be living in the backyard of one of the best melanoma centers in the country.  I'll be looking forward to your updates and wish you well!

                                                                  Elisa

                                                                Cooper
                                                                Participant

                                                                  Facts are found on Pubmed.com.  Check out who sponsors the study before believing a study..  The FDA long ago stopped using interferon as the "gold" standard for testing because it was found ineffective.  The Amer. Soc of CLinical Oncology meeting last year stated:  "interferon does not extend overall survival."  Institutions of great world acclaim don't prescribe it at all.  You can find in many places that Leukine was promoted at N.Ca.Melanoma Ctr. but 2010 study found it only effective for stage 4 not stage 3 in certain circumstances.  Interferon has dropped as a remedy for Hep C.  The facts are out there.
                                                                  What is there to be sensitive about when there is research to explore.

                                                                  Cooper
                                                                  Participant

                                                                    Facts are found on Pubmed.com.  Check out who sponsors the study before believing a study..  The FDA long ago stopped using interferon as the "gold" standard for testing because it was found ineffective.  The Amer. Soc of CLinical Oncology meeting last year stated:  "interferon does not extend overall survival."  Institutions of great world acclaim don't prescribe it at all.  You can find in many places that Leukine was promoted at N.Ca.Melanoma Ctr. but 2010 study found it only effective for stage 4 not stage 3 in certain circumstances.  Interferon has dropped as a remedy for Hep C.  The facts are out there.
                                                                    What is there to be sensitive about when there is research to explore.

                                                                      Melanoma Mom
                                                                      Participant

                                                                        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.

                                                                        Cooper
                                                                        Participant

                                                                          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.

                                                                          Cooper
                                                                          Participant

                                                                            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.

                                                                            Melanoma Mom
                                                                            Participant

                                                                              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.

                                                                              Melanoma Mom
                                                                              Participant

                                                                                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.

                                                                                Melanoma Mom
                                                                                Participant

                                                                                  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.

                                                                                  eaca
                                                                                  Participant

                                                                                    Anonymous,

                                                                                    Yes, there is lots of research to explore.  And referring to the places you mention I have found the following with the help of some links from other members of this forum:

                                                                                    From the American Society of Clinical Oncology:

                                                                                    – Ulceration of primary melanoma and responsiveness to adjuvant interferon therapy: Analysis of the adjuvant trials EORTC18952 and EORTC18991 in 2,644 patients (2009)  http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=32368

                                                                                    "Conclusions: The post hoc analyses of EORTC1892 and EORTC18991 indicate strongly that patients with an ulcerated primary are far more sensitive to Interferon than patients with non-ulcerated primaries."

                                                                                    – EORTC 18991 phase III trial: Long-term adjuvant pegylated interferon-alpha2b (PEG-IFN) versus observation in resected stage III melanoma: Long-term results at 7.6-years follow-up (2011)  http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=102&abstractID=83141

                                                                                    "Conclusions:  … In the smaller subgroup of patients with sentinel node positive and with ulcerated melanoma, the benefit seemed to be the most striking and consistent regarding all endpoints, and was maintained at long term follow-up."

                                                                                    From the Pubmed.com site:

                                                                                    – Pegylated interferon alpha-2b as adjuvant treatment of Stage III malignant melanoma: an evidence-based review (2010)  http://www.ncbi.nlm.nih.gov/pubmed/21042541

                                                                                    "… Interferon alpha-2b remains to date the most promising approach available…"

                                                                                    – Long-term pegylated interferon-alpha and its potential in the treatment of melanoma (2009)  http://www.ncbi.nlm.nih.gov/pubmed/19707406

                                                                                    "…In the adjuvant setting, PegIFNalpha-2b has significant prolonged distant metastases free survival in patients with microscopic nodal involvement (stage TxN1aM0) and therefore is a promising treatment option in this patient population. In the palliative setting, monotherapy with PegIFNalpha-2alpha can induce complete remissions in a minority of stage IV melanoma patients. The combination of monochemotherapy is feasible and may result in lasting complete remissions. Ongoing research must focus on the identification of patients who mostly benefit, so that unnecessary toxicity would be avoided. Combining PegIFNs and chemotherapy or targeted agents deserves further exploration."

                                                                                    – Adjuvant therapy with pegylated interferon alpha-2b versus observation alone in resected state III melanoma: final results of EORTC 18991, a randomised phase III trial (2008)  http://www.ncbi.nlm.nih.gov/pubmed/18620949

                                                                                    "Interpretation: Adjuvant pegylated interferon alfa-2b for stage III melanoma has a significant, sustained effect on recurrence-free survival."

                                                                                    And I could go on.  I am also very aware that I could quote passages from these and other studies that also shed doubt on the efficacy of interferon regarding overall survival rates.  However, my point is that the "facts" point in many different directions and one of those might well be that interferon is effective in particular patient groups. I don't see anything to support the one-sided conclusions that you have stated.  I see controversy and hypotheses, not clear-cut answers.

                                                                                    And there is always reason to be sensitive to the effect of your words on others, even when there is research to explore.

                                                                                    Elisa

                                                                                    eaca
                                                                                    Participant

                                                                                      Anonymous,

                                                                                      Yes, there is lots of research to explore.  And referring to the places you mention I have found the following with the help of some links from other members of this forum:

                                                                                      From the American Society of Clinical Oncology:

                                                                                      – Ulceration of primary melanoma and responsiveness to adjuvant interferon therapy: Analysis of the adjuvant trials EORTC18952 and EORTC18991 in 2,644 patients (2009)  http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=32368

                                                                                      "Conclusions: The post hoc analyses of EORTC1892 and EORTC18991 indicate strongly that patients with an ulcerated primary are far more sensitive to Interferon than patients with non-ulcerated primaries."

                                                                                      – EORTC 18991 phase III trial: Long-term adjuvant pegylated interferon-alpha2b (PEG-IFN) versus observation in resected stage III melanoma: Long-term results at 7.6-years follow-up (2011)  http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=102&abstractID=83141

                                                                                      "Conclusions:  … In the smaller subgroup of patients with sentinel node positive and with ulcerated melanoma, the benefit seemed to be the most striking and consistent regarding all endpoints, and was maintained at long term follow-up."

                                                                                      From the Pubmed.com site:

                                                                                      – Pegylated interferon alpha-2b as adjuvant treatment of Stage III malignant melanoma: an evidence-based review (2010)  http://www.ncbi.nlm.nih.gov/pubmed/21042541

                                                                                      "… Interferon alpha-2b remains to date the most promising approach available…"

                                                                                      – Long-term pegylated interferon-alpha and its potential in the treatment of melanoma (2009)  http://www.ncbi.nlm.nih.gov/pubmed/19707406

                                                                                      "…In the adjuvant setting, PegIFNalpha-2b has significant prolonged distant metastases free survival in patients with microscopic nodal involvement (stage TxN1aM0) and therefore is a promising treatment option in this patient population. In the palliative setting, monotherapy with PegIFNalpha-2alpha can induce complete remissions in a minority of stage IV melanoma patients. The combination of monochemotherapy is feasible and may result in lasting complete remissions. Ongoing research must focus on the identification of patients who mostly benefit, so that unnecessary toxicity would be avoided. Combining PegIFNs and chemotherapy or targeted agents deserves further exploration."

                                                                                      – Adjuvant therapy with pegylated interferon alpha-2b versus observation alone in resected state III melanoma: final results of EORTC 18991, a randomised phase III trial (2008)  http://www.ncbi.nlm.nih.gov/pubmed/18620949

                                                                                      "Interpretation: Adjuvant pegylated interferon alfa-2b for stage III melanoma has a significant, sustained effect on recurrence-free survival."

                                                                                      And I could go on.  I am also very aware that I could quote passages from these and other studies that also shed doubt on the efficacy of interferon regarding overall survival rates.  However, my point is that the "facts" point in many different directions and one of those might well be that interferon is effective in particular patient groups. I don't see anything to support the one-sided conclusions that you have stated.  I see controversy and hypotheses, not clear-cut answers.

                                                                                      And there is always reason to be sensitive to the effect of your words on others, even when there is research to explore.

                                                                                      Elisa

                                                                                    Cooper
                                                                                    Participant

                                                                                      Interferon is only approved for stage 3C normally. I don't get why you'd get it for stage 2.  Watch and wait is much better way to go.

                                                                                      Cooper
                                                                                      Participant

                                                                                        Interferon is only approved for stage 3C normally. I don't get why you'd get it for stage 2.  Watch and wait is much better way to go.

                                                                                          DeniseK
                                                                                          Participant

                                                                                            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

                                                                                            DeniseK
                                                                                            Participant

                                                                                              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

                                                                                              Melanoma Mom
                                                                                              Participant

                                                                                                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. πŸ™‚

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

                                                                                                Elizabeth, "Melanoma Mom"

                                                                                                Melanoma Mom
                                                                                                Participant

                                                                                                  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. πŸ™‚

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

                                                                                                  Elizabeth, "Melanoma Mom"

                                                                                                  lhaley
                                                                                                  Participant

                                                                                                    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

                                                                                                    lhaley
                                                                                                    Participant

                                                                                                      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

                                                                                                      DeniseK
                                                                                                      Participant

                                                                                                        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!  πŸ™‚  Best of luck to you both too!!  We're in this together to fight and win!!  Keep us posted on you as well!! 

                                                                                                        Denise

                                                                                                        DeniseK
                                                                                                        Participant

                                                                                                          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!  πŸ™‚  Best of luck to you both too!!  We're in this together to fight and win!!  Keep us posted on you as well!! 

                                                                                                          Denise

                                                                                                        mother-to-be
                                                                                                        Participant

                                                                                                          Elisa,

                                                                                                          Thank you for posting all the articles on pegylated interferon.  I'm also considering pegylated and was hoping to hear from folks that followed this treatment.  I'm 3B, micrometz to 2 lymph nodes, high mitotic rate, 1.1 breslow, and ulcerated.  I'm in southern California and, so far, haven't found any trials for stage 3 folks.  Good luck on your decision–let us know!  Michelle

                                                                                                          mother-to-be
                                                                                                          Participant

                                                                                                            Elisa,

                                                                                                            Thank you for posting all the articles on pegylated interferon.  I'm also considering pegylated and was hoping to hear from folks that followed this treatment.  I'm 3B, micrometz to 2 lymph nodes, high mitotic rate, 1.1 breslow, and ulcerated.  I'm in southern California and, so far, haven't found any trials for stage 3 folks.  Good luck on your decision–let us know!  Michelle

                                                                                                            Courtneys Mama
                                                                                                            Participant

                                                                                                              Hi Elisa,

                                                                                                              My 16 year old daughter has a Stage 2C melanoma as well.  Her tumor was 7mm, ulcerated, invasive, high mitotic rate of 20.  She is a St. Jude patient and they put her on 4 weeks of high dose interferon, and another 48 weeks of peginterferon injections 1x per week.  Her options were the peg or to wait and watch, and reading how fast spreading this cancer is, waiting was not an option for us.  She started the Peg in July 2011 and is doing wonderful on it.  She has mild fatigue, a headache once in a while, irregular periods, but that is it.  She had problems with the high dose interferon, and she missed 1 week, but the peginterferon is going great.  I have read so many negative things about being sick all the time, but this is not true in her case.  She continues to go out with her friends and have a normal teenage life.  In the beginning she was scared about dying because she was doing research on the internet, but she has since stopped and is very happy, positive and determined to beat this awful disease!  

                                                                                                              I wish you the best.

                                                                                                              warm regards,  Tari

                                                                                                                eaca
                                                                                                                Participant

                                                                                                                  Tari,

                                                                                                                  I can't imagine having to face this disease at 16!  I'm glad that your daughter is reacting so well to the peg-interferon and that she can lead a relatively normal teenage life.  After the initial reaction to the first shot, I'm also finding the peg relatively easy to manage, at least so far. I hope your daughter continues to do well with the treatment and that she stays happy and healthy for a long, long time!

                                                                                                                  Best wishes,

                                                                                                                  Elisa

                                                                                                                  Cooper
                                                                                                                  Participant

                                                                                                                    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.

                                                                                                                    Courtneys Mama
                                                                                                                    Participant

                                                                                                                      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.

                                                                                                                      Cooper
                                                                                                                      Participant

                                                                                                                        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,"  

                                                                                                                        Cooper
                                                                                                                        Participant

                                                                                                                          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,"  

                                                                                                                          Courtneys Mama
                                                                                                                          Participant

                                                                                                                            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.

                                                                                                                            Courtneys Mama
                                                                                                                            Participant

                                                                                                                              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.

                                                                                                                              Cooper
                                                                                                                              Participant

                                                                                                                                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.

                                                                                                                                 

                                                                                                                                  

                                                                                                                                Courtneys Mama
                                                                                                                                Participant

                                                                                                                                  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.

                                                                                                                                  Courtneys Mama
                                                                                                                                  Participant

                                                                                                                                    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.

                                                                                                                                    Cooper
                                                                                                                                    Participant

                                                                                                                                      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.

                                                                                                                                       

                                                                                                                                        

                                                                                                                                      eaca
                                                                                                                                      Participant

                                                                                                                                        Cooper,

                                                                                                                                        If Merck's not investing, then how come they are sponsoring the trial that I am currently on?  From what I have read, what is being explored are the effects of using interferon earlier in the disease and with more specific subgroups, such as those with ulcerated primaries, as well as in combination with other therapies.  I don't see much evidence of it being abandoned completely, but more efforts to understand the specific cases in which it does have a chance of affecting this disease.  The article you quote from is already quite a few years old and there are still plenty of new interferon trials happening out there.

                                                                                                                                        Elisa

                                                                                                                                        eaca
                                                                                                                                        Participant

                                                                                                                                          Cooper,

                                                                                                                                          If Merck's not investing, then how come they are sponsoring the trial that I am currently on?  From what I have read, what is being explored are the effects of using interferon earlier in the disease and with more specific subgroups, such as those with ulcerated primaries, as well as in combination with other therapies.  I don't see much evidence of it being abandoned completely, but more efforts to understand the specific cases in which it does have a chance of affecting this disease.  The article you quote from is already quite a few years old and there are still plenty of new interferon trials happening out there.

                                                                                                                                          Elisa

                                                                                                                                          Courtneys Mama
                                                                                                                                          Participant

                                                                                                                                            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.

                                                                                                                                            Cooper
                                                                                                                                            Participant

                                                                                                                                              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.

                                                                                                                                              Courtneys Mama
                                                                                                                                              Participant

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

                                                                                                                                                Hugs, Tari

                                                                                                                                                Courtneys Mama
                                                                                                                                                Participant

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

                                                                                                                                                  Hugs, Tari

                                                                                                                                                  eaca
                                                                                                                                                  Participant

                                                                                                                                                    Tari,

                                                                                                                                                    I can't imagine having to face this disease at 16!  I'm glad that your daughter is reacting so well to the peg-interferon and that she can lead a relatively normal teenage life.  After the initial reaction to the first shot, I'm also finding the peg relatively easy to manage, at least so far. I hope your daughter continues to do well with the treatment and that she stays happy and healthy for a long, long time!

                                                                                                                                                    Best wishes,

                                                                                                                                                    Elisa

                                                                                                                                                    mother-to-be
                                                                                                                                                    Participant

                                                                                                                                                      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

                                                                                                                                                      Courtneys Mama
                                                                                                                                                      Participant

                                                                                                                                                        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

                                                                                                                                                        Courtneys Mama
                                                                                                                                                        Participant

                                                                                                                                                          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

                                                                                                                                                          eaca
                                                                                                                                                          Participant

                                                                                                                                                            Michelle,

                                                                                                                                                            Good luck to you on starting peg-interferon next week.  I've posted further information on my experience starting peg 3 weeks ago in a separate post that you can search for, if you're interested.  It's going very well so far.  I'm getting it through a trial, so can't help you with any advice about the insurance payment.

                                                                                                                                                            Keep us posted on how you do.  Best wishes,

                                                                                                                                                            Elisa

                                                                                                                                                            eaca
                                                                                                                                                            Participant

                                                                                                                                                              Michelle,

                                                                                                                                                              Good luck to you on starting peg-interferon next week.  I've posted further information on my experience starting peg 3 weeks ago in a separate post that you can search for, if you're interested.  It's going very well so far.  I'm getting it through a trial, so can't help you with any advice about the insurance payment.

                                                                                                                                                              Keep us posted on how you do.  Best wishes,

                                                                                                                                                              Elisa

                                                                                                                                                              mother-to-be
                                                                                                                                                              Participant

                                                                                                                                                                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

                                                                                                                                                              Courtneys Mama
                                                                                                                                                              Participant

                                                                                                                                                                Hi Elisa,

                                                                                                                                                                My 16 year old daughter has a Stage 2C melanoma as well.  Her tumor was 7mm, ulcerated, invasive, high mitotic rate of 20.  She is a St. Jude patient and they put her on 4 weeks of high dose interferon, and another 48 weeks of peginterferon injections 1x per week.  Her options were the peg or to wait and watch, and reading how fast spreading this cancer is, waiting was not an option for us.  She started the Peg in July 2011 and is doing wonderful on it.  She has mild fatigue, a headache once in a while, irregular periods, but that is it.  She had problems with the high dose interferon, and she missed 1 week, but the peginterferon is going great.  I have read so many negative things about being sick all the time, but this is not true in her case.  She continues to go out with her friends and have a normal teenage life.  In the beginning she was scared about dying because she was doing research on the internet, but she has since stopped and is very happy, positive and determined to beat this awful disease!  

                                                                                                                                                                I wish you the best.

                                                                                                                                                                warm regards,  Tari

                                                                                                                                                                mdcameron
                                                                                                                                                                Participant

                                                                                                                                                                  Hi Elisa,

                                                                                                                                                                  I was just diagnosed with stage II b.  My dermatologist referred me to an oncologist at MD Anderson in Houston because I am only 32 years old and had a higher mitotic rate of 8.  Surgeon in Tulsa performed the WLE/SLNB on July 8, the lymph node biopsy was clear which was a relief.  My dermatologist still wanted me to see someone at MD Anderson so my husband and I traveled there earlier this week.  They did a CT scan, MRI, and blood work which we are still waiting on the results off all of them.  Dr. Hwu recommended I start on Interferon or the Pegylated Interferon to postpone possible recurrence.  This is where I am at a loss!  Do it or not to do it… that is the big question right?  I have 3 small children ages 8, 4, and 2 whom I want to be here for as long as possible.  Those of you who have any experience, I would be curious for your opinion if you were at my stage in life whether you would do the Interferon???  My Oncologist also had the dermatologist in her clinic look me over as well and she found another changing mole (much smaller) and i did a punch biopsy (still waiting those results as well).  Thank you for all the help in advance!  This is a super scary thing for anyone to go through!

                                                                                                                                                                  mdcameron
                                                                                                                                                                  Participant

                                                                                                                                                                    Hi Elisa,

                                                                                                                                                                    I was just diagnosed with stage II b.  My dermatologist referred me to an oncologist at MD Anderson in Houston because I am only 32 years old and had a higher mitotic rate of 8.  Surgeon in Tulsa performed the WLE/SLNB on July 8, the lymph node biopsy was clear which was a relief.  My dermatologist still wanted me to see someone at MD Anderson so my husband and I traveled there earlier this week.  They did a CT scan, MRI, and blood work which we are still waiting on the results off all of them.  Dr. Hwu recommended I start on Interferon or the Pegylated Interferon to postpone possible recurrence.  This is where I am at a loss!  Do it or not to do it… that is the big question right?  I have 3 small children ages 8, 4, and 2 whom I want to be here for as long as possible.  Those of you who have any experience, I would be curious for your opinion if you were at my stage in life whether you would do the Interferon???  My Oncologist also had the dermatologist in her clinic look me over as well and she found another changing mole (much smaller) and i did a punch biopsy (still waiting those results as well).  Thank you for all the help in advance!  This is a super scary thing for anyone to go through!

                                                                                                                                                                    mdcameron
                                                                                                                                                                    Participant

                                                                                                                                                                      Hi Elisa,

                                                                                                                                                                      I was just diagnosed with stage II b.  My dermatologist referred me to an oncologist at MD Anderson in Houston because I am only 32 years old and had a higher mitotic rate of 8.  Surgeon in Tulsa performed the WLE/SLNB on July 8, the lymph node biopsy was clear which was a relief.  My dermatologist still wanted me to see someone at MD Anderson so my husband and I traveled there earlier this week.  They did a CT scan, MRI, and blood work which we are still waiting on the results off all of them.  Dr. Hwu recommended I start on Interferon or the Pegylated Interferon to postpone possible recurrence.  This is where I am at a loss!  Do it or not to do it… that is the big question right?  I have 3 small children ages 8, 4, and 2 whom I want to be here for as long as possible.  Those of you who have any experience, I would be curious for your opinion if you were at my stage in life whether you would do the Interferon???  My Oncologist also had the dermatologist in her clinic look me over as well and she found another changing mole (much smaller) and i did a punch biopsy (still waiting those results as well).  Thank you for all the help in advance!  This is a super scary thing for anyone to go through!

                                                                                                                                                                      mdcameron
                                                                                                                                                                      Participant

                                                                                                                                                                        Hi Elisa,

                                                                                                                                                                        I was just diagnosed with stage II b.  My dermatologist referred me to an oncologist at MD Anderson in Houston because I am only 32 years old and had a higher mitotic rate of 8.  Surgeon in Tulsa performed the WLE/SLNB on July 8, the lymph node biopsy was clear which was a relief.  My dermatologist still wanted me to see someone at MD Anderson so my husband and I traveled there earlier this week.  They did a CT scan, MRI, and blood work which we are still waiting on the results off all of them.  Dr. Hwu recommended I start on Interferon or the Pegylated Interferon to postpone possible recurrence.  This is where I am at a loss!  Do it or not to do it… that is the big question right?  I have 3 small children ages 8, 4, and 2 whom I want to be here for as long as possible.  Those of you who have any experience, I would be curious for your opinion if you were at my stage in life whether you would do the Interferon???  My Oncologist also had the dermatologist in her clinic look me over as well and she found another changing mole (much smaller) and i did a punch biopsy (still waiting those results as well).  Thank you for all the help in advance!  This is a super scary thing for anyone to go through!

                                                                                                                                                                        mdcameron
                                                                                                                                                                        Participant

                                                                                                                                                                          Hi Elisa,

                                                                                                                                                                          I was just diagnosed with stage II b.  My dermatologist referred me to an oncologist at MD Anderson in Houston because I am only 32 years old and had a higher mitotic rate of 8.  Surgeon in Tulsa performed the WLE/SLNB on July 8, the lymph node biopsy was clear which was a relief.  My dermatologist still wanted me to see someone at MD Anderson so my husband and I traveled there earlier this week.  They did a CT scan, MRI, and blood work which we are still waiting on the results off all of them.  Dr. Hwu recommended I start on Interferon or the Pegylated Interferon to postpone possible recurrence.  This is where I am at a loss!  Do it or not to do it… that is the big question right?  I have 3 small children ages 8, 4, and 2 whom I want to be here for as long as possible.  Those of you who have any experience, I would be curious for your opinion if you were at my stage in life whether you would do the Interferon???  My Oncologist also had the dermatologist in her clinic look me over as well and she found another changing mole (much smaller) and i did a punch biopsy (still waiting those results as well).  Thank you for all the help in advance!  This is a super scary thing for anyone to go through!

                                                                                                                                                                          mdcameron
                                                                                                                                                                          Participant

                                                                                                                                                                            Hi Elisa,

                                                                                                                                                                            I was just diagnosed with stage II b.  My dermatologist referred me to an oncologist at MD Anderson in Houston because I am only 32 years old and had a higher mitotic rate of 8.  Surgeon in Tulsa performed the WLE/SLNB on July 8, the lymph node biopsy was clear which was a relief.  My dermatologist still wanted me to see someone at MD Anderson so my husband and I traveled there earlier this week.  They did a CT scan, MRI, and blood work which we are still waiting on the results off all of them.  Dr. Hwu recommended I start on Interferon or the Pegylated Interferon to postpone possible recurrence.  This is where I am at a loss!  Do it or not to do it… that is the big question right?  I have 3 small children ages 8, 4, and 2 whom I want to be here for as long as possible.  Those of you who have any experience, I would be curious for your opinion if you were at my stage in life whether you would do the Interferon???  My Oncologist also had the dermatologist in her clinic look me over as well and she found another changing mole (much smaller) and i did a punch biopsy (still waiting those results as well).  Thank you for all the help in advance!  This is a super scary thing for anyone to go through!

                                                                                                                                                                            JerryfromFauq
                                                                                                                                                                            Participant

                                                                                                                                                                              You should start a new Post.  most people don't go through pages of an old post get an new entry.  Wen Jen is good, I have met and like her.

                                                                                                                                                                              JerryfromFauq
                                                                                                                                                                              Participant

                                                                                                                                                                                You should start a new Post.  most people don't go through pages of an old post get an new entry.  Wen Jen is good, I have met and like her.

                                                                                                                                                                                JerryfromFauq
                                                                                                                                                                                Participant

                                                                                                                                                                                  You should start a new Post.  most people don't go through pages of an old post get an new entry.  Wen Jen is good, I have met and like her.

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                                                                                                                                                                              The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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