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A Real Research of Interferon / Roferon Side Effects. Arghhh!

Forums General Melanoma Community A Real Research of Interferon / Roferon Side Effects. Arghhh!

  • Post
    ClaudeM
    Participant

      Diagnosis: Nodular Melanoma, Breslow 5mm, Clark IV, no ulceration, no periphereal lymphoadenopathy. T4NoMo.

      I was on Biological therapy with interferon alpha 2b. I went through the induction phase. 5 days a week 30 MIU  INTRON A intravenous.

      Diagnosis: Nodular Melanoma, Breslow 5mm, Clark IV, no ulceration, no periphereal lymphoadenopathy. T4NoMo.

      I was on Biological therapy with interferon alpha 2b. I went through the induction phase. 5 days a week 30 MIU  INTRON A intravenous.

      Wow was that a living hell or what? My liver was so damaged by the end of the month that my doctor thought i had Hepatitis. My ast/alt were like 450, and 420.

      The second phase was better, but still pretty damn bad. 18 MIU INTRON A 3 days a week for eleven months, subcutanously with Multi Dose Pen.

      I remember I thought that eventually it will get better , headache, nausea, fever, leg pain but it's didn't. I mean, the fever was not so severe as it was in the begining but everything else just stayed the same.

      Now i am doing a research of real life stories of how everyone handled their dose of "liquid hell".

      Please, if you went through a therapy with Interferon, Roferon, Peginterferon, tell me how you dealt with it. What were the side effects? Did anyone found a way to deal with some of them?

      Also, if you are about to start this treatment , please contact me and i will help you with all i know about it.

      It's good to be here on this site, i don't know why i haven't found it sooner.

    Viewing 27 reply threads
    • Replies
        POW
        Participant

          It sounds as though you were lucky and your melanoma was discovered fairly early (stage II). That's great news. I assume that you chose to take interferon in an attempt to reduce the chances of a recurrance. I sure hope it works for you. Only time will tell.

          However, I see no point in soliciting horror stories about interferon (or any other melanoma treatment, for that matter). Interferon has been around for more than 20 years. Interferon is known to have some pretty miserble side effects, but not everybody gets every side effect or experiences the same level of discomfort. Like all types of chemotherapy, different people experience different side effects. The important point is that nobody takes interferon unless they have to or, in a case like yours, because they want to do everything they possibly can to prevent a recurrance. 

          If the patient knows that there could be some nasty but non-fatal side effects but there are no other treatment options available, why scare or discourage them with a detailed description of "liquid hell"? What choice to they have? Let the melanoma run rampant? And as difficult as you say your treatment was, you did not stop taking the interferon, did you? You could have stopped at any time. So you must have thought that the trade-off was worth it. Most people who take interferon agree with you.

          One of the best things about the new melanoma treatments that have been approved recently or that are now in clinical trials is that they have fewer side effects and work better than does interferon. Hopefully, one of these days we will have a treatment that provides a complete and affordable cure for everyone. But until then, interferon remains a valid choice in some situations. You had a rough time; I am sorry you had to go through that. But you're still here, alive and kicking and you will probably remain melanoma-free for the rest of your life. I think you will be a happier person if  you concentrate on your good fortune. 

          POW
          Participant

            It sounds as though you were lucky and your melanoma was discovered fairly early (stage II). That's great news. I assume that you chose to take interferon in an attempt to reduce the chances of a recurrance. I sure hope it works for you. Only time will tell.

            However, I see no point in soliciting horror stories about interferon (or any other melanoma treatment, for that matter). Interferon has been around for more than 20 years. Interferon is known to have some pretty miserble side effects, but not everybody gets every side effect or experiences the same level of discomfort. Like all types of chemotherapy, different people experience different side effects. The important point is that nobody takes interferon unless they have to or, in a case like yours, because they want to do everything they possibly can to prevent a recurrance. 

            If the patient knows that there could be some nasty but non-fatal side effects but there are no other treatment options available, why scare or discourage them with a detailed description of "liquid hell"? What choice to they have? Let the melanoma run rampant? And as difficult as you say your treatment was, you did not stop taking the interferon, did you? You could have stopped at any time. So you must have thought that the trade-off was worth it. Most people who take interferon agree with you.

            One of the best things about the new melanoma treatments that have been approved recently or that are now in clinical trials is that they have fewer side effects and work better than does interferon. Hopefully, one of these days we will have a treatment that provides a complete and affordable cure for everyone. But until then, interferon remains a valid choice in some situations. You had a rough time; I am sorry you had to go through that. But you're still here, alive and kicking and you will probably remain melanoma-free for the rest of your life. I think you will be a happier person if  you concentrate on your good fortune. 

            POW
            Participant

              It sounds as though you were lucky and your melanoma was discovered fairly early (stage II). That's great news. I assume that you chose to take interferon in an attempt to reduce the chances of a recurrance. I sure hope it works for you. Only time will tell.

              However, I see no point in soliciting horror stories about interferon (or any other melanoma treatment, for that matter). Interferon has been around for more than 20 years. Interferon is known to have some pretty miserble side effects, but not everybody gets every side effect or experiences the same level of discomfort. Like all types of chemotherapy, different people experience different side effects. The important point is that nobody takes interferon unless they have to or, in a case like yours, because they want to do everything they possibly can to prevent a recurrance. 

              If the patient knows that there could be some nasty but non-fatal side effects but there are no other treatment options available, why scare or discourage them with a detailed description of "liquid hell"? What choice to they have? Let the melanoma run rampant? And as difficult as you say your treatment was, you did not stop taking the interferon, did you? You could have stopped at any time. So you must have thought that the trade-off was worth it. Most people who take interferon agree with you.

              One of the best things about the new melanoma treatments that have been approved recently or that are now in clinical trials is that they have fewer side effects and work better than does interferon. Hopefully, one of these days we will have a treatment that provides a complete and affordable cure for everyone. But until then, interferon remains a valid choice in some situations. You had a rough time; I am sorry you had to go through that. But you're still here, alive and kicking and you will probably remain melanoma-free for the rest of your life. I think you will be a happier person if  you concentrate on your good fortune. 

              ClaudeM
              Participant

                Thanks for your response. You seem to have misunderstoon my intentions.

                I totally agree with your points. Biological therapy with interferon is optional and I could've stopped at any time but i haven't. Any patient with a high risk of recurrence will probably do whatever it takes to prolongue his health. I've seen it for my self while i was in the hospital. People were even drinking petroleum oil because they heard it cures cancer.

                My intention is not to solicit horror stories or discourage people from trying it out; on contrary, i am trying to get in touch with people who went through this because i would like to hear how they dealt with side effects. This is only to collect enough data to help other people that are currently on IFN or about to start their treatment.

                I sure would've liked if i had some instructions , tips or remedies to reduce my side effects. Instead all i had was some scientific papers from nih.gov and my doctor telling me "it will get better i time, use paracetamol for fever and ibuprofen for pain".

                I am just trying to help others and let them know that they are not alone, from my experience. I sure was. It's really difficult to find good information on dealing with side effects. Even an experienced "googler" will have a rough time.

                Thank you for your kind words

                POW
                Participant

                  Claude, I can see that your heart is in the right place. And it sure would be nice to have a list of all the side effects and all the recommended ways to treat them all in one place. Unfortunately, it's not that simple.

                  Different people have different side effects. A treatment that helps one person may not help another. And, most importantly, some things that can be used to treat one person's side effects might interfere with another person's melanoma treatment or, even worse, create an adverse reaction. So, as always with melanoma, things must be handled on a case-to-case basis.

                  I think the best thing for you to do is to advise patients suffering from side effects to post a message on this forum and/or on the Melamona International Foundation forum asking how other patients handled their specific side-effect. Then go to their oncologist with the suggestions and see what is most appropriate for that patient at that time. We often get specific questions like that on this forum and fellow patients have made very helpful recommendations for everything from ipi rashes to constipation to autoimmune reactions. 

                  If you read these forums as often as possible and share the benefit of your personal experience with interferon side effects, that would be a very kind and humane thing to do.

                  lanasri
                  Participant

                    Ugh!  Sorry for all these duplicates….it appeared that none of them were taking!

                    Cooper
                    Participant

                      Here are the conclusions from some REAL RESearch by Paul Chapman at Sloan Kettering on interferon:

                      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," meaning that HD IFN did not increase the chance of cure. On the other hand, HD IFN was associated with longer recurrence-free survival in both trials. However, in the pooled analysis [3], the median time to relapse was longer in the HD IFN group by less than 1 year.

                       

                      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).

                      Cooper
                      Participant

                        Here are the conclusions from some REAL RESearch by Paul Chapman at Sloan Kettering on interferon:

                        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," meaning that HD IFN did not increase the chance of cure. On the other hand, HD IFN was associated with longer recurrence-free survival in both trials. However, in the pooled analysis [3], the median time to relapse was longer in the HD IFN group by less than 1 year.

                         

                        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).

                        Cooper
                        Participant

                          Here are the conclusions from some REAL RESearch by Paul Chapman at Sloan Kettering on interferon:

                          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," meaning that HD IFN did not increase the chance of cure. On the other hand, HD IFN was associated with longer recurrence-free survival in both trials. However, in the pooled analysis [3], the median time to relapse was longer in the HD IFN group by less than 1 year.

                           

                          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).

                          Bubbles
                          Participant

                            Dear Claude (and POW),

                            I hesitate to say "welcome"…but, hope you can find some usefulness in this forum.  As a person having dealt with melanoma (currently Stage IV, NED) for the past TEN years, all I can say is….I am sorry…that you have joined our ranks.  I would NEVER tell you that your are LUCKY (as POW did) to only be Stage II.  IT SUCKS!!!  No other way around it!  On the other hand….as a person who has never utilized interferon…in any of its forms…I say:  You can call it any damn thing you like!!  Liquid poison, or any other beautiful high falutin nombre!!!  I have found few who have actually partaken, who would argue with that categorization!  Anonymous has it right, there is scant scientific evidence that interferon will have much effect to prevent progression…though, there are plenty on this board who have life experience to prove otherwise.  Additionally, while I will never consider anyone diagnosed with any stage of melanoma LUCKY, you have caught things early, and that is a source of HOPE.  An undervalued therapy.  But, one I hold to. Stay vigilent.  Keep an eye on clinical trials, as things are evolving rapidly.  Find a melanoma specialist.   Say whatever you like.  Search for the answers you seek.  I wish you well.  Celeste

                            Cooper
                            Participant

                              What Celeste (Bubbles) didn't read in the research posted is that if you are going to have a recur you will whether or not you take interferon.  Cases that didn't aren't because of the interferon but because the person wasn't going to have progression anyway.  And the major thing to take away from Dr. Chapman is overall survival doesn't increase with interferon.  So until these new drugs get into stage 3 treatment we're stuck!  The longterm side effects can be bad and permanent and don't forget the depression you may get too.  The hope is for change soon!

                              Bubbles
                              Participant

                                Actually, Cooper. I have read the report noted…and many others.  I researched very carefully whether or not I wanted to take interferon when I was first diagnosed with melanoma 10 years ago and at various points since.  While it is most unlikely that interferon does much to prevent disease progression in melanoma….we simultaneously can not definitively say…in those who take it but do NOT progress….that it played NO role….however, small that may be.  And, yes….we can report that over many studies…and years…and lives….overall survival of melanoma is NOT improved by interferon.  (Although there is a recent meta-analysis out a few months ago that showed a very small statistically significant….though clinically NOT…result that interferon, DID, lengthen life….just to keep things confusing!)  But, the ultimate point you made is correct.  Interferon does little.  Has horrid side effects. (Things I noted in my prior comment.) And even worse, we have little or nothing available to patients who are anything less than Stage IV, and even then usually WITH disease.  As a Stage IV, NED patient I was lucky enough to get into an arm of the BMS anti-PD1 (now Nivolumab) trial at Moffitt more than 2 1/2 years ago.  At one point they DID open slots to patients with Stage III disease.  Given my luck and experience, as well as the continuing good results coming out of my study, my arm in particular…I am a firm advocate for treatments like ipi and anti-PD1 (from BMS and Merck) becoming available for patients BEFORE they have advanced to Stage IV.  It just makes sense.  My full story and a great deal of research related to all of this is on my blog.  I continue to work for these treatment options to be available for more patients.  I think if we ALL push our medical centers, researchers, physicians….we have a chance.  Sooner….rather than later.   Yours, c

                                ClaudeM
                                Participant

                                  Wow. Thanks for all the replies.

                                  @POW Yes, i guess you are right. It varies from person to person and one solution should not be applied for everyone. However, i think that there could be a list of suggestions on how to deal with it which someone can show to their doctor and ask for advice. I will try to help other on individual basis on this site. I think this is a great site. Thanks and i'll see you around i guess.

                                  @anonymous I really did not ask for some copy-pasted scientific text telling me that my biological therapy with INTRON A was in vain. This thread was created for discussing the side effects of IFN with suggestions on how to treat them. I am very aware of my survival rate, as is anyone with Melanoma who's done some research. I am fully aware that time is not on my side and that the only question is whether i will live long enough to get it again. Biological therapy was the only option at hand, and someone who has such a serious condition will do anything.Anything. Better than sitting around and waiting for the inevitable.

                                  @lanasri Thanks for the link, ill join that discussion.

                                  @Celeste Thanks for your kind word. Maybe "lucky" was a bad word to use; what i actually meant is that i'ts a big luck that it didn't spread to lymph nodes or my blood system beeing that is over 4mm deep. I wish you well too. Thanks for the support.

                                  So this topic is mainly for discussing side effects. Many people don't understand or can't read "scientific papers and research's" from nih.gov. I would just like to hear some stories on how others felt with intention to help someone else who might read this topic.

                                  ClaudeM
                                  Participant

                                    Wow. Thanks for all the replies.

                                    @POW Yes, i guess you are right. It varies from person to person and one solution should not be applied for everyone. However, i think that there could be a list of suggestions on how to deal with it which someone can show to their doctor and ask for advice. I will try to help other on individual basis on this site. I think this is a great site. Thanks and i'll see you around i guess.

                                    @anonymous I really did not ask for some copy-pasted scientific text telling me that my biological therapy with INTRON A was in vain. This thread was created for discussing the side effects of IFN with suggestions on how to treat them. I am very aware of my survival rate, as is anyone with Melanoma who's done some research. I am fully aware that time is not on my side and that the only question is whether i will live long enough to get it again. Biological therapy was the only option at hand, and someone who has such a serious condition will do anything.Anything. Better than sitting around and waiting for the inevitable.

                                    @lanasri Thanks for the link, ill join that discussion.

                                    @Celeste Thanks for your kind word. Maybe "lucky" was a bad word to use; what i actually meant is that i'ts a big luck that it didn't spread to lymph nodes or my blood system beeing that is over 4mm deep. I wish you well too. Thanks for the support.

                                    So this topic is mainly for discussing side effects. Many people don't understand or can't read "scientific papers and research's" from nih.gov. I would just like to hear some stories on how others felt with intention to help someone else who might read this topic.

                                    ClaudeM
                                    Participant

                                      Wow. Thanks for all the replies.

                                      @POW Yes, i guess you are right. It varies from person to person and one solution should not be applied for everyone. However, i think that there could be a list of suggestions on how to deal with it which someone can show to their doctor and ask for advice. I will try to help other on individual basis on this site. I think this is a great site. Thanks and i'll see you around i guess.

                                      @anonymous I really did not ask for some copy-pasted scientific text telling me that my biological therapy with INTRON A was in vain. This thread was created for discussing the side effects of IFN with suggestions on how to treat them. I am very aware of my survival rate, as is anyone with Melanoma who's done some research. I am fully aware that time is not on my side and that the only question is whether i will live long enough to get it again. Biological therapy was the only option at hand, and someone who has such a serious condition will do anything.Anything. Better than sitting around and waiting for the inevitable.

                                      @lanasri Thanks for the link, ill join that discussion.

                                      @Celeste Thanks for your kind word. Maybe "lucky" was a bad word to use; what i actually meant is that i'ts a big luck that it didn't spread to lymph nodes or my blood system beeing that is over 4mm deep. I wish you well too. Thanks for the support.

                                      So this topic is mainly for discussing side effects. Many people don't understand or can't read "scientific papers and research's" from nih.gov. I would just like to hear some stories on how others felt with intention to help someone else who might read this topic.

                                        ClaudeM
                                        Participant

                                          UPDATE:

                                          I finished creating my research / book with the help of steadyhealth and it's completely free.

                                          It's called "Dealing with Interferon Side Effects: Patient Stories". And it has…well, exactly what is says. Interviews from other patients who were on Interferon. 

                                          I also created and added another booklet called "Interferon-About" which is a collection of useful links i gathered through my research.

                                          I hope this is of some help to someone:

                                          http://www.steadyhealth.com/interferon-side-effects

                                          Thanks.

                                          Claude

                                          ClaudeM
                                          Participant

                                            UPDATE:

                                            I finished creating my research / book with the help of steadyhealth and it's completely free.

                                            It's called "Dealing with Interferon Side Effects: Patient Stories". And it has…well, exactly what is says. Interviews from other patients who were on Interferon. 

                                            I also created and added another booklet called "Interferon-About" which is a collection of useful links i gathered through my research.

                                            I hope this is of some help to someone:

                                            http://www.steadyhealth.com/interferon-side-effects

                                            Thanks.

                                            Claude

                                            ClaudeM
                                            Participant

                                              UPDATE:

                                              I finished creating my research / book with the help of steadyhealth and it's completely free.

                                              It's called "Dealing with Interferon Side Effects: Patient Stories". And it has…well, exactly what is says. Interviews from other patients who were on Interferon. 

                                              I also created and added another booklet called "Interferon-About" which is a collection of useful links i gathered through my research.

                                              I hope this is of some help to someone:

                                              http://www.steadyhealth.com/interferon-side-effects

                                              Thanks.

                                              Claude

                                            Cooper
                                            Participant

                                              So sorry you did not want to know the scientific reality behind the treatment you are taking.  There are stage III therapies in trial, be sure to look at Clinical Trials for other options.  http://www.clinicaltrials.gov

                                              The labor of treating side effects could possibly be avoided.  And keeping a healthy immune system rather than knocking it down with this toxic drug can be an agressive treatment.

                                              ClaudeM
                                              Participant

                                                Thanks for your response. You seem to have misunderstoon my intentions.

                                                I totally agree with your points. Biological therapy with interferon is optional and I could've stopped at any time but i haven't. Any patient with a high risk of recurrence will probably do whatever it takes to prolongue his health. I've seen it for my self while i was in the hospital. People were even drinking petroleum oil because they heard it cures cancer.

                                                My intention is not to solicit horror stories or discourage people from trying it out; on contrary, i am trying to get in touch with people who went through this because i would like to hear how they dealt with side effects. This is only to collect enough data to help other people that are currently on IFN or about to start their treatment.

                                                I sure would've liked if i had some instructions , tips or remedies to reduce my side effects. Instead all i had was some scientific papers from nih.gov and my doctor telling me "it will get better i time, use paracetamol for fever and ibuprofen for pain".

                                                I am just trying to help others and let them know that they are not alone, from my experience. I sure was. It's really difficult to find good information on dealing with side effects. Even an experienced "googler" will have a rough time.

                                                Thank you for your kind words

                                                ClaudeM
                                                Participant

                                                  Thanks for your response. You seem to have misunderstoon my intentions.

                                                  I totally agree with your points. Biological therapy with interferon is optional and I could've stopped at any time but i haven't. Any patient with a high risk of recurrence will probably do whatever it takes to prolongue his health. I've seen it for my self while i was in the hospital. People were even drinking petroleum oil because they heard it cures cancer.

                                                  My intention is not to solicit horror stories or discourage people from trying it out; on contrary, i am trying to get in touch with people who went through this because i would like to hear how they dealt with side effects. This is only to collect enough data to help other people that are currently on IFN or about to start their treatment.

                                                  I sure would've liked if i had some instructions , tips or remedies to reduce my side effects. Instead all i had was some scientific papers from nih.gov and my doctor telling me "it will get better i time, use paracetamol for fever and ibuprofen for pain".

                                                  I am just trying to help others and let them know that they are not alone, from my experience. I sure was. It's really difficult to find good information on dealing with side effects. Even an experienced "googler" will have a rough time.

                                                  Thank you for your kind words

                                                  POW
                                                  Participant

                                                    Claude, I can see that your heart is in the right place. And it sure would be nice to have a list of all the side effects and all the recommended ways to treat them all in one place. Unfortunately, it's not that simple.

                                                    Different people have different side effects. A treatment that helps one person may not help another. And, most importantly, some things that can be used to treat one person's side effects might interfere with another person's melanoma treatment or, even worse, create an adverse reaction. So, as always with melanoma, things must be handled on a case-to-case basis.

                                                    I think the best thing for you to do is to advise patients suffering from side effects to post a message on this forum and/or on the Melamona International Foundation forum asking how other patients handled their specific side-effect. Then go to their oncologist with the suggestions and see what is most appropriate for that patient at that time. We often get specific questions like that on this forum and fellow patients have made very helpful recommendations for everything from ipi rashes to constipation to autoimmune reactions. 

                                                    If you read these forums as often as possible and share the benefit of your personal experience with interferon side effects, that would be a very kind and humane thing to do.

                                                    POW
                                                    Participant

                                                      Claude, I can see that your heart is in the right place. And it sure would be nice to have a list of all the side effects and all the recommended ways to treat them all in one place. Unfortunately, it's not that simple.

                                                      Different people have different side effects. A treatment that helps one person may not help another. And, most importantly, some things that can be used to treat one person's side effects might interfere with another person's melanoma treatment or, even worse, create an adverse reaction. So, as always with melanoma, things must be handled on a case-to-case basis.

                                                      I think the best thing for you to do is to advise patients suffering from side effects to post a message on this forum and/or on the Melamona International Foundation forum asking how other patients handled their specific side-effect. Then go to their oncologist with the suggestions and see what is most appropriate for that patient at that time. We often get specific questions like that on this forum and fellow patients have made very helpful recommendations for everything from ipi rashes to constipation to autoimmune reactions. 

                                                      If you read these forums as often as possible and share the benefit of your personal experience with interferon side effects, that would be a very kind and humane thing to do.

                                                      lanasri
                                                      Participant

                                                        Ugh!  Sorry for all these duplicates….it appeared that none of them were taking!

                                                        lanasri
                                                        Participant

                                                          Ugh!  Sorry for all these duplicates….it appeared that none of them were taking!

                                                          Bubbles
                                                          Participant

                                                            Dear Claude (and POW),

                                                            I hesitate to say "welcome"…but, hope you can find some usefulness in this forum.  As a person having dealt with melanoma (currently Stage IV, NED) for the past TEN years, all I can say is….I am sorry…that you have joined our ranks.  I would NEVER tell you that your are LUCKY (as POW did) to only be Stage II.  IT SUCKS!!!  No other way around it!  On the other hand….as a person who has never utilized interferon…in any of its forms…I say:  You can call it any damn thing you like!!  Liquid poison, or any other beautiful high falutin nombre!!!  I have found few who have actually partaken, who would argue with that categorization!  Anonymous has it right, there is scant scientific evidence that interferon will have much effect to prevent progression…though, there are plenty on this board who have life experience to prove otherwise.  Additionally, while I will never consider anyone diagnosed with any stage of melanoma LUCKY, you have caught things early, and that is a source of HOPE.  An undervalued therapy.  But, one I hold to. Stay vigilent.  Keep an eye on clinical trials, as things are evolving rapidly.  Find a melanoma specialist.   Say whatever you like.  Search for the answers you seek.  I wish you well.  Celeste

                                                            Bubbles
                                                            Participant

                                                              Dear Claude (and POW),

                                                              I hesitate to say "welcome"…but, hope you can find some usefulness in this forum.  As a person having dealt with melanoma (currently Stage IV, NED) for the past TEN years, all I can say is….I am sorry…that you have joined our ranks.  I would NEVER tell you that your are LUCKY (as POW did) to only be Stage II.  IT SUCKS!!!  No other way around it!  On the other hand….as a person who has never utilized interferon…in any of its forms…I say:  You can call it any damn thing you like!!  Liquid poison, or any other beautiful high falutin nombre!!!  I have found few who have actually partaken, who would argue with that categorization!  Anonymous has it right, there is scant scientific evidence that interferon will have much effect to prevent progression…though, there are plenty on this board who have life experience to prove otherwise.  Additionally, while I will never consider anyone diagnosed with any stage of melanoma LUCKY, you have caught things early, and that is a source of HOPE.  An undervalued therapy.  But, one I hold to. Stay vigilent.  Keep an eye on clinical trials, as things are evolving rapidly.  Find a melanoma specialist.   Say whatever you like.  Search for the answers you seek.  I wish you well.  Celeste

                                                              Cooper
                                                              Participant

                                                                What Celeste (Bubbles) didn't read in the research posted is that if you are going to have a recur you will whether or not you take interferon.  Cases that didn't aren't because of the interferon but because the person wasn't going to have progression anyway.  And the major thing to take away from Dr. Chapman is overall survival doesn't increase with interferon.  So until these new drugs get into stage 3 treatment we're stuck!  The longterm side effects can be bad and permanent and don't forget the depression you may get too.  The hope is for change soon!

                                                                Cooper
                                                                Participant

                                                                  What Celeste (Bubbles) didn't read in the research posted is that if you are going to have a recur you will whether or not you take interferon.  Cases that didn't aren't because of the interferon but because the person wasn't going to have progression anyway.  And the major thing to take away from Dr. Chapman is overall survival doesn't increase with interferon.  So until these new drugs get into stage 3 treatment we're stuck!  The longterm side effects can be bad and permanent and don't forget the depression you may get too.  The hope is for change soon!

                                                                  Bubbles
                                                                  Participant

                                                                    Actually, Cooper. I have read the report noted…and many others.  I researched very carefully whether or not I wanted to take interferon when I was first diagnosed with melanoma 10 years ago and at various points since.  While it is most unlikely that interferon does much to prevent disease progression in melanoma….we simultaneously can not definitively say…in those who take it but do NOT progress….that it played NO role….however, small that may be.  And, yes….we can report that over many studies…and years…and lives….overall survival of melanoma is NOT improved by interferon.  (Although there is a recent meta-analysis out a few months ago that showed a very small statistically significant….though clinically NOT…result that interferon, DID, lengthen life….just to keep things confusing!)  But, the ultimate point you made is correct.  Interferon does little.  Has horrid side effects. (Things I noted in my prior comment.) And even worse, we have little or nothing available to patients who are anything less than Stage IV, and even then usually WITH disease.  As a Stage IV, NED patient I was lucky enough to get into an arm of the BMS anti-PD1 (now Nivolumab) trial at Moffitt more than 2 1/2 years ago.  At one point they DID open slots to patients with Stage III disease.  Given my luck and experience, as well as the continuing good results coming out of my study, my arm in particular…I am a firm advocate for treatments like ipi and anti-PD1 (from BMS and Merck) becoming available for patients BEFORE they have advanced to Stage IV.  It just makes sense.  My full story and a great deal of research related to all of this is on my blog.  I continue to work for these treatment options to be available for more patients.  I think if we ALL push our medical centers, researchers, physicians….we have a chance.  Sooner….rather than later.   Yours, c

                                                                    Bubbles
                                                                    Participant

                                                                      Actually, Cooper. I have read the report noted…and many others.  I researched very carefully whether or not I wanted to take interferon when I was first diagnosed with melanoma 10 years ago and at various points since.  While it is most unlikely that interferon does much to prevent disease progression in melanoma….we simultaneously can not definitively say…in those who take it but do NOT progress….that it played NO role….however, small that may be.  And, yes….we can report that over many studies…and years…and lives….overall survival of melanoma is NOT improved by interferon.  (Although there is a recent meta-analysis out a few months ago that showed a very small statistically significant….though clinically NOT…result that interferon, DID, lengthen life….just to keep things confusing!)  But, the ultimate point you made is correct.  Interferon does little.  Has horrid side effects. (Things I noted in my prior comment.) And even worse, we have little or nothing available to patients who are anything less than Stage IV, and even then usually WITH disease.  As a Stage IV, NED patient I was lucky enough to get into an arm of the BMS anti-PD1 (now Nivolumab) trial at Moffitt more than 2 1/2 years ago.  At one point they DID open slots to patients with Stage III disease.  Given my luck and experience, as well as the continuing good results coming out of my study, my arm in particular…I am a firm advocate for treatments like ipi and anti-PD1 (from BMS and Merck) becoming available for patients BEFORE they have advanced to Stage IV.  It just makes sense.  My full story and a great deal of research related to all of this is on my blog.  I continue to work for these treatment options to be available for more patients.  I think if we ALL push our medical centers, researchers, physicians….we have a chance.  Sooner….rather than later.   Yours, c

                                                                      Cooper
                                                                      Participant

                                                                        So sorry you did not want to know the scientific reality behind the treatment you are taking.  There are stage III therapies in trial, be sure to look at Clinical Trials for other options.  http://www.clinicaltrials.gov

                                                                        The labor of treating side effects could possibly be avoided.  And keeping a healthy immune system rather than knocking it down with this toxic drug can be an agressive treatment.

                                                                        Cooper
                                                                        Participant

                                                                          So sorry you did not want to know the scientific reality behind the treatment you are taking.  There are stage III therapies in trial, be sure to look at Clinical Trials for other options.  http://www.clinicaltrials.gov

                                                                          The labor of treating side effects could possibly be avoided.  And keeping a healthy immune system rather than knocking it down with this toxic drug can be an agressive treatment.

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