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Stage 3B Diagnosis

Forums General Melanoma Community Stage 3B Diagnosis

  • Post
    arthur
    Participant

      On July 11th I found out I had melanoma, the tumor was 6.5 mm thick and ulcerated. My oncologist ordered a CT/PET scan, MRI and a chest x-ray (the melanoma was on my right shoulder) all of which came back with no sign of metastatic disease. On August 6th I had my sentinel lymph node biopsy and excision of the local area, the surgeon got clear margins but one of the three lymph nodes removed had micrometastases. My surgery to remove more lymph nodes is tomorrow at the time of me writing this. Last week when I met with my oncologist he staged me at 3B given this information.

      On July 11th I found out I had melanoma, the tumor was 6.5 mm thick and ulcerated. My oncologist ordered a CT/PET scan, MRI and a chest x-ray (the melanoma was on my right shoulder) all of which came back with no sign of metastatic disease. On August 6th I had my sentinel lymph node biopsy and excision of the local area, the surgeon got clear margins but one of the three lymph nodes removed had micrometastases. My surgery to remove more lymph nodes is tomorrow at the time of me writing this. Last week when I met with my oncologist he staged me at 3B given this information. We talked about treatment options since due to the thickness of the primary melanoma I'm at a high risk of recurrence.

      I'm eligible to enter a clinical trial for ipilimumab, but I feel like Interferon would be the better choice for me. I'm 22 years old and in good shape and my oncologist feels I could handle the interferon much better which would allow me to "live" instead of spending the next year turtling up at my parent's house because of the ipilimumab since according to my oncologist it would "be rough". I'm pissed off this happened to me more than anything, I had to drop all my classes this semester and take medical leave from work(due to the surgery literally obliterating my shoulder lol), as I mentioned I'm only 22 and I've never once tanned in my life, just had some sun burn's from when I was younger but don't remember them ever being that bad. I'm looking for feedback from people who have taken either interferon or ipilimumab, anything you have to share would be greatly appreciated. Thanks for reading and feel free to ask my anything.

    Viewing 31 reply threads
    • Replies
        Vermont_Donna
        Participant

          HI,

          i did 11 months of interferon low dose injections and had extreme fatigue, requiring me to not work, sleep 15 hours a day and take Ritalin (yes prescribed by my oncologist). I had a reoccurence 11 months after I completed the 11 months. (I couldnt make it through the month of high dose.).

          I did four doses of ipilimumab at 3mg/kg and have been NED ever since…two years four months. I had less fatigue, way less than with the interferon. I did have some days of extreme nausea and took two anti nausea drugs but it was a way better treatment in terms of side effects and success.

          I'm off to work so dont have time to wrtie more. I am sure you will get more responses.

          Hang in there,

          Vermont_Donna, stage 3a, NED

          Vermont_Donna
          Participant

            HI,

            i did 11 months of interferon low dose injections and had extreme fatigue, requiring me to not work, sleep 15 hours a day and take Ritalin (yes prescribed by my oncologist). I had a reoccurence 11 months after I completed the 11 months. (I couldnt make it through the month of high dose.).

            I did four doses of ipilimumab at 3mg/kg and have been NED ever since…two years four months. I had less fatigue, way less than with the interferon. I did have some days of extreme nausea and took two anti nausea drugs but it was a way better treatment in terms of side effects and success.

            I'm off to work so dont have time to wrtie more. I am sure you will get more responses.

            Hang in there,

            Vermont_Donna, stage 3a, NED

            Vermont_Donna
            Participant

              HI,

              i did 11 months of interferon low dose injections and had extreme fatigue, requiring me to not work, sleep 15 hours a day and take Ritalin (yes prescribed by my oncologist). I had a reoccurence 11 months after I completed the 11 months. (I couldnt make it through the month of high dose.).

              I did four doses of ipilimumab at 3mg/kg and have been NED ever since…two years four months. I had less fatigue, way less than with the interferon. I did have some days of extreme nausea and took two anti nausea drugs but it was a way better treatment in terms of side effects and success.

              I'm off to work so dont have time to wrtie more. I am sure you will get more responses.

              Hang in there,

              Vermont_Donna, stage 3a, NED

              Gene_S
              Participant

                Hi,

                I am sorry that at such a young age you are going through this but this is a great site to get information regarding melanoma.

                First let me say my husband started off at Stage IIIC with a 10.5 mm lesion and it was ulcerated as well.  He is quite a bit older but did the surgeries and the watch and wait because he would not do interferon which is all they offered at that time.  He always said he would rather live then be sick for a year from the interferon.

                He started  Ipi (yervoy) in March of 2011 after he became stage IV and a unresectable lesion pushing on the spine at the C 1 – 2 cervical spine.  He was still working and worked for a good while after starting the Ipi until he could retire with his 30 years of service.  The clinical trial he is in is 10mg/kg the first being 4 doses in 12 weeks and then every 12 weeks and GM-CSF self injections on for 14 days then off for 7.  He has been NED (no evidence of disease) since last September.  His biggest problem is the itching which is minor  and some fatigue for a day or 2 after the infusions.  Much better than possibly being very sick for 12 months of interferon.  If you wish to read more you can check his profile.

                Judy (loving wife of Gene Stage IV and now NED)

                Gene_S
                Participant

                  Hi,

                  I am sorry that at such a young age you are going through this but this is a great site to get information regarding melanoma.

                  First let me say my husband started off at Stage IIIC with a 10.5 mm lesion and it was ulcerated as well.  He is quite a bit older but did the surgeries and the watch and wait because he would not do interferon which is all they offered at that time.  He always said he would rather live then be sick for a year from the interferon.

                  He started  Ipi (yervoy) in March of 2011 after he became stage IV and a unresectable lesion pushing on the spine at the C 1 – 2 cervical spine.  He was still working and worked for a good while after starting the Ipi until he could retire with his 30 years of service.  The clinical trial he is in is 10mg/kg the first being 4 doses in 12 weeks and then every 12 weeks and GM-CSF self injections on for 14 days then off for 7.  He has been NED (no evidence of disease) since last September.  His biggest problem is the itching which is minor  and some fatigue for a day or 2 after the infusions.  Much better than possibly being very sick for 12 months of interferon.  If you wish to read more you can check his profile.

                  Judy (loving wife of Gene Stage IV and now NED)

                  Gene_S
                  Participant

                    Hi,

                    I am sorry that at such a young age you are going through this but this is a great site to get information regarding melanoma.

                    First let me say my husband started off at Stage IIIC with a 10.5 mm lesion and it was ulcerated as well.  He is quite a bit older but did the surgeries and the watch and wait because he would not do interferon which is all they offered at that time.  He always said he would rather live then be sick for a year from the interferon.

                    He started  Ipi (yervoy) in March of 2011 after he became stage IV and a unresectable lesion pushing on the spine at the C 1 – 2 cervical spine.  He was still working and worked for a good while after starting the Ipi until he could retire with his 30 years of service.  The clinical trial he is in is 10mg/kg the first being 4 doses in 12 weeks and then every 12 weeks and GM-CSF self injections on for 14 days then off for 7.  He has been NED (no evidence of disease) since last September.  His biggest problem is the itching which is minor  and some fatigue for a day or 2 after the infusions.  Much better than possibly being very sick for 12 months of interferon.  If you wish to read more you can check his profile.

                    Judy (loving wife of Gene Stage IV and now NED)

                    POW
                    Participant

                      I'm a little confused by your statement that if you take ipi you would have to spend a year "turtling up" at your parents' house. The standard ipi regemin is 4 infusions over the course of 12 weeks; not one year. Low dose interferon, on the other hand, is given over the course of one year and it's side effects are worse (for most people) than are ipi's side effects. Could you perhaps have confused the two when your oncologist was talking about them? I suggest that you double-check that with your doctor.

                      That being said, the reason that so many people were excited when ipi (Yervoy) was FDA approved 2 years ago is that clinical trials showed that it works much better and with fewer side effects than does interferon for Stage IV melanoma. It doesn't work for everybody (30% maybe? I forget the exact number) but nothing works for everybody. Nobody knows yet whether giving ipi to Stage III patients will reduce the number of recurrances; that is the point of the ipi vs. interferon clinical trial. 

                      If you have the opportunity to be in the ipi vs. interferon clinical trial, I think you would be wise to grab it. Either arm of the trial (ipi or interferon) may well prevent your melanoma from recurring. As a Stage III patient, there is no other way you could get ipi unless you have unresectable tumors. Furthermore, being part of a clnicial trial means that you will be seen at frequent intervals by a team of melanoma experts for several years to come. That is worth the price of admission right there. And you will be participating in a study that could result in really important data for future melanoma patients. 

                      I am very sorry that you are facing this scary disease. But treatments for melanoma have improved greatly in the last 3 or 4 years are are getting better all the time. Keep your immune system as strong as it can be by eating a very healthful diet, getting regular exercise, and perhaps taking a few nurtitional supplements that are known to promote a healthy immune system (but check with your oncologist about that first). Then go ahead and live your life with optimism and enjoyment. A diagnosis of melanoma is NOT a death sentence anymore!

                      POW
                      Participant

                        I'm a little confused by your statement that if you take ipi you would have to spend a year "turtling up" at your parents' house. The standard ipi regemin is 4 infusions over the course of 12 weeks; not one year. Low dose interferon, on the other hand, is given over the course of one year and it's side effects are worse (for most people) than are ipi's side effects. Could you perhaps have confused the two when your oncologist was talking about them? I suggest that you double-check that with your doctor.

                        That being said, the reason that so many people were excited when ipi (Yervoy) was FDA approved 2 years ago is that clinical trials showed that it works much better and with fewer side effects than does interferon for Stage IV melanoma. It doesn't work for everybody (30% maybe? I forget the exact number) but nothing works for everybody. Nobody knows yet whether giving ipi to Stage III patients will reduce the number of recurrances; that is the point of the ipi vs. interferon clinical trial. 

                        If you have the opportunity to be in the ipi vs. interferon clinical trial, I think you would be wise to grab it. Either arm of the trial (ipi or interferon) may well prevent your melanoma from recurring. As a Stage III patient, there is no other way you could get ipi unless you have unresectable tumors. Furthermore, being part of a clnicial trial means that you will be seen at frequent intervals by a team of melanoma experts for several years to come. That is worth the price of admission right there. And you will be participating in a study that could result in really important data for future melanoma patients. 

                        I am very sorry that you are facing this scary disease. But treatments for melanoma have improved greatly in the last 3 or 4 years are are getting better all the time. Keep your immune system as strong as it can be by eating a very healthful diet, getting regular exercise, and perhaps taking a few nurtitional supplements that are known to promote a healthy immune system (but check with your oncologist about that first). Then go ahead and live your life with optimism and enjoyment. A diagnosis of melanoma is NOT a death sentence anymore!

                        POW
                        Participant

                          I'm a little confused by your statement that if you take ipi you would have to spend a year "turtling up" at your parents' house. The standard ipi regemin is 4 infusions over the course of 12 weeks; not one year. Low dose interferon, on the other hand, is given over the course of one year and it's side effects are worse (for most people) than are ipi's side effects. Could you perhaps have confused the two when your oncologist was talking about them? I suggest that you double-check that with your doctor.

                          That being said, the reason that so many people were excited when ipi (Yervoy) was FDA approved 2 years ago is that clinical trials showed that it works much better and with fewer side effects than does interferon for Stage IV melanoma. It doesn't work for everybody (30% maybe? I forget the exact number) but nothing works for everybody. Nobody knows yet whether giving ipi to Stage III patients will reduce the number of recurrances; that is the point of the ipi vs. interferon clinical trial. 

                          If you have the opportunity to be in the ipi vs. interferon clinical trial, I think you would be wise to grab it. Either arm of the trial (ipi or interferon) may well prevent your melanoma from recurring. As a Stage III patient, there is no other way you could get ipi unless you have unresectable tumors. Furthermore, being part of a clnicial trial means that you will be seen at frequent intervals by a team of melanoma experts for several years to come. That is worth the price of admission right there. And you will be participating in a study that could result in really important data for future melanoma patients. 

                          I am very sorry that you are facing this scary disease. But treatments for melanoma have improved greatly in the last 3 or 4 years are are getting better all the time. Keep your immune system as strong as it can be by eating a very healthful diet, getting regular exercise, and perhaps taking a few nurtitional supplements that are known to promote a healthy immune system (but check with your oncologist about that first). Then go ahead and live your life with optimism and enjoyment. A diagnosis of melanoma is NOT a death sentence anymore!

                          gloria
                          Participant

                            I, too, think you have confused the two treatments.  Ipi (yervoy) is definitely a much easier treatment with better odds for success.  If I were offered interferon, I would not do it and would prefer "watch and wait" over interferon.  I agree with finding a trial.  There are many out there and many advantages to being closely monitored, especially at your young age.  You don't mention your location?  That might help someone to recommend a treatment facility and trial.

                            gloria
                            Participant

                              I, too, think you have confused the two treatments.  Ipi (yervoy) is definitely a much easier treatment with better odds for success.  If I were offered interferon, I would not do it and would prefer "watch and wait" over interferon.  I agree with finding a trial.  There are many out there and many advantages to being closely monitored, especially at your young age.  You don't mention your location?  That might help someone to recommend a treatment facility and trial.

                              gloria
                              Participant

                                I, too, think you have confused the two treatments.  Ipi (yervoy) is definitely a much easier treatment with better odds for success.  If I were offered interferon, I would not do it and would prefer "watch and wait" over interferon.  I agree with finding a trial.  There are many out there and many advantages to being closely monitored, especially at your young age.  You don't mention your location?  That might help someone to recommend a treatment facility and trial.

                                Gene_S
                                Participant

                                  You can help us to help you more if you fill in your profile.

                                  Please get copies of all your pathology, scans and everything for your own personal file in case you must go see a different doctor then you will have copies to show them.

                                  Please get a melanoma specialist as well as they are up to date on what is new, working and side effects of things you might take.

                                  Melanoma is no longer a death sentence as many on this board have lived for many years and they are very helpful to those checking out the site.  The help with answers and support and have a good insight as to what you are going through.

                                  I would not take interferon first at this point as many new drugs seem to be working better.

                                  Gene_S
                                  Participant

                                    You can help us to help you more if you fill in your profile.

                                    Please get copies of all your pathology, scans and everything for your own personal file in case you must go see a different doctor then you will have copies to show them.

                                    Please get a melanoma specialist as well as they are up to date on what is new, working and side effects of things you might take.

                                    Melanoma is no longer a death sentence as many on this board have lived for many years and they are very helpful to those checking out the site.  The help with answers and support and have a good insight as to what you are going through.

                                    I would not take interferon first at this point as many new drugs seem to be working better.

                                    Gene_S
                                    Participant

                                      You can help us to help you more if you fill in your profile.

                                      Please get copies of all your pathology, scans and everything for your own personal file in case you must go see a different doctor then you will have copies to show them.

                                      Please get a melanoma specialist as well as they are up to date on what is new, working and side effects of things you might take.

                                      Melanoma is no longer a death sentence as many on this board have lived for many years and they are very helpful to those checking out the site.  The help with answers and support and have a good insight as to what you are going through.

                                      I would not take interferon first at this point as many new drugs seem to be working better.

                                      Tim–MRF
                                      Guest

                                        Arthur:

                                        I join others in saying I am sorry you are going through this.  As you have already learned, nothing is entirely clear when it comes to melanoma.  Even the very best melanoma doctors have varying opinions on how to treat patients.

                                        To the extent you can, try to focus on the data.  Even that is somewhat unclear.  Many, many studies have been done on Interferon (also called Interferon alpha, IF-A) and its sister compound pegylated interferon (Sylatron).  At least two studies have looked at the summary of data from a lot of other studies.  One of these so-called meta-analyses showed that in a bunch of studies with many, many patients, interferon extended the time in which patients were disease free, but did not improve length of life.  Another large study concluded that interferon did improve disease- free survival and overall survival.  So these two big studies contradict each other.  I believe most researchers would argue that in large groups of people taking interferon, with all the numbers averaged out, the drug has minimal benefit in extending life.  That is not to say that some patients don't derive a great deal of benefit.  

                                        Yervoy, or ipilimumab, or just "ipi" is a newer drug and we have little data on using it for people who have had all of their melanoma removed.  The trial you mentioned is for exactly this kind of patient, what is called adjuvant therapy.  In studies of patients with active Stage IV disease, about 18% of patients see their tumors shrink.  It is widely thought that ipi will work better in the adjuvant setting (in other words in patients like you) but no-one knows if that will be the case or not.

                                        Side effects of both drugs can vary widely.  I have read posts on this board from people whose personality was so changed by interferon their marriage broke up and they lost their job.  I know others who have taken it and said it wasn't bad at all–just some weakness from time to time.  I have spoken with people who took ipi and had to stop after one or two treatments because of terrible side effects–colitis and rash.  I have known others who had very little difficulty going through the course of treatment.  

                                        While I am not a doctor and don't give medical advice, I would say that given the thickness of your tumor, that it was ulcerated, and that a node was positive, some kind of systemic therapy seems reasonable.  Interferon and ipi seem to be logical choices, though other choices are out there as well.  About half of melanoma patients have a mutation in a gene that codes for the enzyme BRAF.  If you have that mutation you are eligible for an adjuvant trial of Zelboraf (vemurafenib), a drug that inhibits BRAF.  I know that some vaccine studies were also being done for people in your situation, but I don't know if they are still open or not.

                                        You have options, and a lot to think about.  Fortunately, we are seeing a lot of advances in treatments for melanoma and you have a lot of reasons to be hopeful that you can get through this next surgery, get into one of these trials, then get on with your life.

                                        Tim–MRF

                                         

                                         

                                        Tim–MRF
                                        Guest

                                          Arthur:

                                          I join others in saying I am sorry you are going through this.  As you have already learned, nothing is entirely clear when it comes to melanoma.  Even the very best melanoma doctors have varying opinions on how to treat patients.

                                          To the extent you can, try to focus on the data.  Even that is somewhat unclear.  Many, many studies have been done on Interferon (also called Interferon alpha, IF-A) and its sister compound pegylated interferon (Sylatron).  At least two studies have looked at the summary of data from a lot of other studies.  One of these so-called meta-analyses showed that in a bunch of studies with many, many patients, interferon extended the time in which patients were disease free, but did not improve length of life.  Another large study concluded that interferon did improve disease- free survival and overall survival.  So these two big studies contradict each other.  I believe most researchers would argue that in large groups of people taking interferon, with all the numbers averaged out, the drug has minimal benefit in extending life.  That is not to say that some patients don't derive a great deal of benefit.  

                                          Yervoy, or ipilimumab, or just "ipi" is a newer drug and we have little data on using it for people who have had all of their melanoma removed.  The trial you mentioned is for exactly this kind of patient, what is called adjuvant therapy.  In studies of patients with active Stage IV disease, about 18% of patients see their tumors shrink.  It is widely thought that ipi will work better in the adjuvant setting (in other words in patients like you) but no-one knows if that will be the case or not.

                                          Side effects of both drugs can vary widely.  I have read posts on this board from people whose personality was so changed by interferon their marriage broke up and they lost their job.  I know others who have taken it and said it wasn't bad at all–just some weakness from time to time.  I have spoken with people who took ipi and had to stop after one or two treatments because of terrible side effects–colitis and rash.  I have known others who had very little difficulty going through the course of treatment.  

                                          While I am not a doctor and don't give medical advice, I would say that given the thickness of your tumor, that it was ulcerated, and that a node was positive, some kind of systemic therapy seems reasonable.  Interferon and ipi seem to be logical choices, though other choices are out there as well.  About half of melanoma patients have a mutation in a gene that codes for the enzyme BRAF.  If you have that mutation you are eligible for an adjuvant trial of Zelboraf (vemurafenib), a drug that inhibits BRAF.  I know that some vaccine studies were also being done for people in your situation, but I don't know if they are still open or not.

                                          You have options, and a lot to think about.  Fortunately, we are seeing a lot of advances in treatments for melanoma and you have a lot of reasons to be hopeful that you can get through this next surgery, get into one of these trials, then get on with your life.

                                          Tim–MRF

                                           

                                           

                                          Tim–MRF
                                          Guest

                                            Arthur:

                                            I join others in saying I am sorry you are going through this.  As you have already learned, nothing is entirely clear when it comes to melanoma.  Even the very best melanoma doctors have varying opinions on how to treat patients.

                                            To the extent you can, try to focus on the data.  Even that is somewhat unclear.  Many, many studies have been done on Interferon (also called Interferon alpha, IF-A) and its sister compound pegylated interferon (Sylatron).  At least two studies have looked at the summary of data from a lot of other studies.  One of these so-called meta-analyses showed that in a bunch of studies with many, many patients, interferon extended the time in which patients were disease free, but did not improve length of life.  Another large study concluded that interferon did improve disease- free survival and overall survival.  So these two big studies contradict each other.  I believe most researchers would argue that in large groups of people taking interferon, with all the numbers averaged out, the drug has minimal benefit in extending life.  That is not to say that some patients don't derive a great deal of benefit.  

                                            Yervoy, or ipilimumab, or just "ipi" is a newer drug and we have little data on using it for people who have had all of their melanoma removed.  The trial you mentioned is for exactly this kind of patient, what is called adjuvant therapy.  In studies of patients with active Stage IV disease, about 18% of patients see their tumors shrink.  It is widely thought that ipi will work better in the adjuvant setting (in other words in patients like you) but no-one knows if that will be the case or not.

                                            Side effects of both drugs can vary widely.  I have read posts on this board from people whose personality was so changed by interferon their marriage broke up and they lost their job.  I know others who have taken it and said it wasn't bad at all–just some weakness from time to time.  I have spoken with people who took ipi and had to stop after one or two treatments because of terrible side effects–colitis and rash.  I have known others who had very little difficulty going through the course of treatment.  

                                            While I am not a doctor and don't give medical advice, I would say that given the thickness of your tumor, that it was ulcerated, and that a node was positive, some kind of systemic therapy seems reasonable.  Interferon and ipi seem to be logical choices, though other choices are out there as well.  About half of melanoma patients have a mutation in a gene that codes for the enzyme BRAF.  If you have that mutation you are eligible for an adjuvant trial of Zelboraf (vemurafenib), a drug that inhibits BRAF.  I know that some vaccine studies were also being done for people in your situation, but I don't know if they are still open or not.

                                            You have options, and a lot to think about.  Fortunately, we are seeing a lot of advances in treatments for melanoma and you have a lot of reasons to be hopeful that you can get through this next surgery, get into one of these trials, then get on with your life.

                                            Tim–MRF

                                             

                                             

                                            JerryfromFauq
                                            Participant

                                              Where's the LIKE button?

                                              mel123
                                              Participant

                                                For what it's worth, I'm stage 3B, and I've had 6/8 infusions of Ipi (low dose as part of the clinical trial comparing it to interferon) and not one side effect. I ran 2 half marathons after starting the induction phase, one of them 2 days after a treatment, and continue to work out 4-6 days a week, and have had zero problems with it. Everyone can't say the same unfortunately, but I seriously doubt anyone has done interferon and felt that great. Most people don't make it through the entire year. If I had been given the interferon in the trial, I was willing to give it a shot, and they said since I'm pretty healthy otherwise, it would be easier on me, but I'd never choose it over the ipilimumab! I was totally on board with the interferon until my oncologist told me it has a 3-5% success rate. I'm older than you (35) but in the cancer world, still considered pretty young πŸ™‚

                                                I'm sure this has probably been said at least 5 times, I didn't read all the comments – but make sure you are seeing a melanoma specialist!! A lot of oncologists are not up to date on melanoma because it seems to be much different than other types of cancer. I really feel like your oncologist has the 2 meds backwards, based on my experience and everything I've read.

                                                All that being said, it's your decision and yours only, once you make it, don't feel bad about it. Best of luck to you! Feel free to contact me if you have questions!

                                                Melissa

                                                mel123
                                                Participant

                                                  For what it's worth, I'm stage 3B, and I've had 6/8 infusions of Ipi (low dose as part of the clinical trial comparing it to interferon) and not one side effect. I ran 2 half marathons after starting the induction phase, one of them 2 days after a treatment, and continue to work out 4-6 days a week, and have had zero problems with it. Everyone can't say the same unfortunately, but I seriously doubt anyone has done interferon and felt that great. Most people don't make it through the entire year. If I had been given the interferon in the trial, I was willing to give it a shot, and they said since I'm pretty healthy otherwise, it would be easier on me, but I'd never choose it over the ipilimumab! I was totally on board with the interferon until my oncologist told me it has a 3-5% success rate. I'm older than you (35) but in the cancer world, still considered pretty young πŸ™‚

                                                  I'm sure this has probably been said at least 5 times, I didn't read all the comments – but make sure you are seeing a melanoma specialist!! A lot of oncologists are not up to date on melanoma because it seems to be much different than other types of cancer. I really feel like your oncologist has the 2 meds backwards, based on my experience and everything I've read.

                                                  All that being said, it's your decision and yours only, once you make it, don't feel bad about it. Best of luck to you! Feel free to contact me if you have questions!

                                                  Melissa

                                                  mel123
                                                  Participant

                                                    For what it's worth, I'm stage 3B, and I've had 6/8 infusions of Ipi (low dose as part of the clinical trial comparing it to interferon) and not one side effect. I ran 2 half marathons after starting the induction phase, one of them 2 days after a treatment, and continue to work out 4-6 days a week, and have had zero problems with it. Everyone can't say the same unfortunately, but I seriously doubt anyone has done interferon and felt that great. Most people don't make it through the entire year. If I had been given the interferon in the trial, I was willing to give it a shot, and they said since I'm pretty healthy otherwise, it would be easier on me, but I'd never choose it over the ipilimumab! I was totally on board with the interferon until my oncologist told me it has a 3-5% success rate. I'm older than you (35) but in the cancer world, still considered pretty young πŸ™‚

                                                    I'm sure this has probably been said at least 5 times, I didn't read all the comments – but make sure you are seeing a melanoma specialist!! A lot of oncologists are not up to date on melanoma because it seems to be much different than other types of cancer. I really feel like your oncologist has the 2 meds backwards, based on my experience and everything I've read.

                                                    All that being said, it's your decision and yours only, once you make it, don't feel bad about it. Best of luck to you! Feel free to contact me if you have questions!

                                                    Melissa

                                                    Becky
                                                    Participant

                                                      Hi

                                                      I can't help you with the decision but just want to give imput on interferon. At the time, it was the only option (besides wait and watch) for my son and so he decided to do the year of interferon. He was 21 at the time, a college senior. He did take a semester off and lived at home during the one month high dose. The follwoing semester he retured to college, worked part time and too a full load of classes, all while doing the 3 x a week injections. It was not easy but he would time the injections so that the side effects had the least effect on his "real life".

                                                      He is now 25 and 4 years NED. I know this sucks for you right now…but you are young and healthy so whatever you decide will be the best decision for you (there is no "right" answer)

                                                       

                                                      sbrooks90
                                                      Participant

                                                        Hi Arthur,

                                                        I am in the same position you are… except for the fact that I am awaiting my CLND. Currently at Stage IIIa and weighing my treatment options vs clinical trials etc. (I am in Canada and we do not have the extensive trials as the States)

                                                        I hope that with whatever option you choose… you do it with confidence and never doubt your choice πŸ™‚

                                                        Samuel

                                                        sbrooks90
                                                        Participant

                                                          Hi Arthur,

                                                          I am in the same position you are… except for the fact that I am awaiting my CLND. Currently at Stage IIIa and weighing my treatment options vs clinical trials etc. (I am in Canada and we do not have the extensive trials as the States)

                                                          I hope that with whatever option you choose… you do it with confidence and never doubt your choice πŸ™‚

                                                          Samuel

                                                          sbrooks90
                                                          Participant

                                                            Hi Arthur,

                                                            I am in the same position you are… except for the fact that I am awaiting my CLND. Currently at Stage IIIa and weighing my treatment options vs clinical trials etc. (I am in Canada and we do not have the extensive trials as the States)

                                                            I hope that with whatever option you choose… you do it with confidence and never doubt your choice πŸ™‚

                                                            Samuel

                                                            bj63
                                                            Participant

                                                              It's something for your and your doctor to decide, but I did the year of Intron A (Interferon alfa 2b) – eight weeks of daily high-dose IV's followed by self-injections (when I could tolerate it) – for a year.  Interferon was pretty much like having the flu for an entire year.  And my cancer came back anyway.

                                                              Ipilumimab wasn't available when I was Stage III in 2011.  My choices were Interferon or nothing.  But based on what I know now, I would opt for the Ipilumimab given the choice.  The overall efficacy of the Interferon is very low – low enough that there is still some debate among doctors about whether it even should be used as adjuvant therapy for Stage III patients.

                                                              Given that the Ipilumimab is only 4 IV's over a 12-week treatment vs. a five days per week, 52-week treatment with Interferon, you're going to be "turtling up" for much longer with the Interferon. So in short, I would strongly urge you to follow your doctor's recommendations.

                                                              bj63
                                                              Participant

                                                                It's something for your and your doctor to decide, but I did the year of Intron A (Interferon alfa 2b) – eight weeks of daily high-dose IV's followed by self-injections (when I could tolerate it) – for a year.  Interferon was pretty much like having the flu for an entire year.  And my cancer came back anyway.

                                                                Ipilumimab wasn't available when I was Stage III in 2011.  My choices were Interferon or nothing.  But based on what I know now, I would opt for the Ipilumimab given the choice.  The overall efficacy of the Interferon is very low – low enough that there is still some debate among doctors about whether it even should be used as adjuvant therapy for Stage III patients.

                                                                Given that the Ipilumimab is only 4 IV's over a 12-week treatment vs. a five days per week, 52-week treatment with Interferon, you're going to be "turtling up" for much longer with the Interferon. So in short, I would strongly urge you to follow your doctor's recommendations.

                                                                bj63
                                                                Participant

                                                                  It's something for your and your doctor to decide, but I did the year of Intron A (Interferon alfa 2b) – eight weeks of daily high-dose IV's followed by self-injections (when I could tolerate it) – for a year.  Interferon was pretty much like having the flu for an entire year.  And my cancer came back anyway.

                                                                  Ipilumimab wasn't available when I was Stage III in 2011.  My choices were Interferon or nothing.  But based on what I know now, I would opt for the Ipilumimab given the choice.  The overall efficacy of the Interferon is very low – low enough that there is still some debate among doctors about whether it even should be used as adjuvant therapy for Stage III patients.

                                                                  Given that the Ipilumimab is only 4 IV's over a 12-week treatment vs. a five days per week, 52-week treatment with Interferon, you're going to be "turtling up" for much longer with the Interferon. So in short, I would strongly urge you to follow your doctor's recommendations.

                                                                  blden2186
                                                                  Participant
                                                                    I did the month of interferon and had quite bad fatigue but made it through. I am now doing the 3x a week shots of intron A. One of the reasons we went this route was the specialist thought it was important for me to be able to have radiation to my leg. There are some treatments that don’t allow for radiation .
                                                                    blden2186
                                                                    Participant
                                                                      I did the month of interferon and had quite bad fatigue but made it through. I am now doing the 3x a week shots of intron A. One of the reasons we went this route was the specialist thought it was important for me to be able to have radiation to my leg. There are some treatments that don’t allow for radiation .
                                                                      blden2186
                                                                      Participant
                                                                        I did the month of interferon and had quite bad fatigue but made it through. I am now doing the 3x a week shots of intron A. One of the reasons we went this route was the specialist thought it was important for me to be able to have radiation to my leg. There are some treatments that don’t allow for radiation .
                                                                        JerryfromFauq
                                                                        Participant

                                                                          Where's the LIKE button?

                                                                          JerryfromFauq
                                                                          Participant

                                                                            Where's the LIKE button?

                                                                            Becky
                                                                            Participant

                                                                              Hi

                                                                              I can't help you with the decision but just want to give imput on interferon. At the time, it was the only option (besides wait and watch) for my son and so he decided to do the year of interferon. He was 21 at the time, a college senior. He did take a semester off and lived at home during the one month high dose. The follwoing semester he retured to college, worked part time and too a full load of classes, all while doing the 3 x a week injections. It was not easy but he would time the injections so that the side effects had the least effect on his "real life".

                                                                              He is now 25 and 4 years NED. I know this sucks for you right now…but you are young and healthy so whatever you decide will be the best decision for you (there is no "right" answer)

                                                                               

                                                                              Becky
                                                                              Participant

                                                                                Hi

                                                                                I can't help you with the decision but just want to give imput on interferon. At the time, it was the only option (besides wait and watch) for my son and so he decided to do the year of interferon. He was 21 at the time, a college senior. He did take a semester off and lived at home during the one month high dose. The follwoing semester he retured to college, worked part time and too a full load of classes, all while doing the 3 x a week injections. It was not easy but he would time the injections so that the side effects had the least effect on his "real life".

                                                                                He is now 25 and 4 years NED. I know this sucks for you right now…but you are young and healthy so whatever you decide will be the best decision for you (there is no "right" answer)

                                                                                 

                                                                                Cindy VT
                                                                                Participant

                                                                                  Dear Donna,

                                                                                   

                                                                                  I'm so glad to hear you are still here!  I remember you from the early 2006-07.  My high dose interferon was a failure at DHMC and I just decided not to do anything else.  I went the homeopathic route which my Oncologist said what ever works for me.  I was NED in 2010.  Unfortunately alot of other problems, stroke and 2 heart attacks, from percarditis.

                                                                                  Best of luck to you.

                                                                                  Cindy VT

                                                                                  Cindy VT
                                                                                  Participant

                                                                                    Dear Donna,

                                                                                     

                                                                                    I'm so glad to hear you are still here!  I remember you from the early 2006-07.  My high dose interferon was a failure at DHMC and I just decided not to do anything else.  I went the homeopathic route which my Oncologist said what ever works for me.  I was NED in 2010.  Unfortunately alot of other problems, stroke and 2 heart attacks, from percarditis.

                                                                                    Best of luck to you.

                                                                                    Cindy VT

                                                                                    Cindy VT
                                                                                    Participant

                                                                                      Dear Donna,

                                                                                       

                                                                                      I'm so glad to hear you are still here!  I remember you from the early 2006-07.  My high dose interferon was a failure at DHMC and I just decided not to do anything else.  I went the homeopathic route which my Oncologist said what ever works for me.  I was NED in 2010.  Unfortunately alot of other problems, stroke and 2 heart attacks, from percarditis.

                                                                                      Best of luck to you.

                                                                                      Cindy VT

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