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Yervoy or interferon for adjuctive treatment

Forums General Melanoma Community Yervoy or interferon for adjuctive treatment

  • Post
    Dalym44
    Participant

      Hello, I was diagnosed in December of 2015 at the age of 27, with melanoma on my wrist. In January I needed to have a complete lymph node dissection. Currently I am stage IIIA. I have been recommended to start interferon or Yervoy to reduce the risk of reccurence. I would like to get an opinion from anyone on their experiences of using yervoy at stage 3. Also my PET scan came back negative and my chest x rays are clear. 

      One other question I have remained out of work due to my surgical drains. I was curious whether I should request some additional time to adjust to which ever treatments I choose, or whether the side effects may not begin for a while??

       

      thank you 

    Viewing 5 reply threads
    • Replies
        jennunicorn
        Participant

          Sorry you are having to go through this, I am 29 and was diagnosed stage 3b in November 2015, it's not easy dealing with all this at such a young and healthy age.

          I highly recommend watching this video:

          It is incredibly informative about stage 3 and gives options as far as treatments go.

          Most top melanoma oncologists still recommend watch and wait. But, now that Yervoy is FDA approved that is a great option on the table. You should try and find a melanoma specialst in your area (if you're not already seeing one), it is very important since melanoma is not like other cancers and having an oncologist that truely understands melanoma and is up to date on all research and treatments is important.

          If you research about Interferon, you will notice that studies show very very little help for a patient who does Interferon adjuvant therapy. There is just no reason why anyone should put themselves through the crappy side effects of a drug that will do nothing to help you.

          Yervoy is better in that it has shown more help than Interferon. It is not a huge amount percentage wise, but the treatment time is shorter and it's the newest FDA approved drug for our stage.. was just approved in October 2015. It does great things for a lot of people in stage 4. And now they are testing other great drugs that have helped a lot of stage 4 patients for stage 3 adjuvant therapy as well.

          I have done the 4 main doses of Yervoy (10mg/kg) and I got through them with mild side effects. Mostly fatigue. And some other manageable ones as well, dry mouth/eyes, mildly itchy skin. Most common side effects are diarrhea and skin itching/rash. 

          There are some clinical trials that just started for stage 3 as well, they were not available to me when I made my decision in December, otherwise I would have highly considered doing a clinical trial. Not sure if you're in an area of a medical facility participating in trials, but that could be something to look into as well. All of these things are gone over in the video. It is a long video, but it is really good to get informed before you make any decisions. 

          All decisions about our health are very personal and everyone will choose their option based on knowing themselves and their bodies the best. 

          It is hard to say when side effects would start for any individual since drugs effect everyone differently. I had fatigue right away but didn't have many other side effects until after the second and third infusion (they are three weeks apart). Some people work full time through treatment, others might work part time, just depends on the individual. I went down to part time because I was able to with my job and I didn't want to wear myself out. I could have continued full time, but I personally wanted to give my body time to rest and get through this time without too much extra stress.

          I hope this was helpful for you, I'm sure others will add some more good info for you too. This is a good place to be for knowledge and support.

          All the best,

          jennunicorn
          Participant

            Sorry you are having to go through this, I am 29 and was diagnosed stage 3b in November 2015, it's not easy dealing with all this at such a young and healthy age.

            I highly recommend watching this video:

            It is incredibly informative about stage 3 and gives options as far as treatments go.

            Most top melanoma oncologists still recommend watch and wait. But, now that Yervoy is FDA approved that is a great option on the table. You should try and find a melanoma specialst in your area (if you're not already seeing one), it is very important since melanoma is not like other cancers and having an oncologist that truely understands melanoma and is up to date on all research and treatments is important.

            If you research about Interferon, you will notice that studies show very very little help for a patient who does Interferon adjuvant therapy. There is just no reason why anyone should put themselves through the crappy side effects of a drug that will do nothing to help you.

            Yervoy is better in that it has shown more help than Interferon. It is not a huge amount percentage wise, but the treatment time is shorter and it's the newest FDA approved drug for our stage.. was just approved in October 2015. It does great things for a lot of people in stage 4. And now they are testing other great drugs that have helped a lot of stage 4 patients for stage 3 adjuvant therapy as well.

            I have done the 4 main doses of Yervoy (10mg/kg) and I got through them with mild side effects. Mostly fatigue. And some other manageable ones as well, dry mouth/eyes, mildly itchy skin. Most common side effects are diarrhea and skin itching/rash. 

            There are some clinical trials that just started for stage 3 as well, they were not available to me when I made my decision in December, otherwise I would have highly considered doing a clinical trial. Not sure if you're in an area of a medical facility participating in trials, but that could be something to look into as well. All of these things are gone over in the video. It is a long video, but it is really good to get informed before you make any decisions. 

            All decisions about our health are very personal and everyone will choose their option based on knowing themselves and their bodies the best. 

            It is hard to say when side effects would start for any individual since drugs effect everyone differently. I had fatigue right away but didn't have many other side effects until after the second and third infusion (they are three weeks apart). Some people work full time through treatment, others might work part time, just depends on the individual. I went down to part time because I was able to with my job and I didn't want to wear myself out. I could have continued full time, but I personally wanted to give my body time to rest and get through this time without too much extra stress.

            I hope this was helpful for you, I'm sure others will add some more good info for you too. This is a good place to be for knowledge and support.

            All the best,

              Dalym44
              Participant

                Thank you for the information Jenn it has been very imformative. I am in the Philadelphia region so I told I have many opportunities with university hospitals to find   Clinical trials in the area.

                i guess my biggest concern in deciding upon treatment is having side effects that are getting worst and where I begin having trouble maintaining a daily routine.

                Would you say that with transferring  to part time work you that you felt better about your overall  health conditions including stress?

                Dalym44
                Participant

                  Thank you for the information Jenn it has been very imformative. I am in the Philadelphia region so I told I have many opportunities with university hospitals to find   Clinical trials in the area.

                  i guess my biggest concern in deciding upon treatment is having side effects that are getting worst and where I begin having trouble maintaining a daily routine.

                  Would you say that with transferring  to part time work you that you felt better about your overall  health conditions including stress?

                  jennunicorn
                  Participant

                    As far as being able to maintain your daily routine, that would be much easier with a treatment like Yervoy as opposed to Interferon. From what I have read about Interferon, it makes most people feel like they have the flu for the duration of treatment, which I believe is a year. Very disruptive to anyones daily routine. Yervoy is using your own immune system to fight any cancer cells, so the side effects are much like auto-immune responses. 

                    Doing part time for me definitely helped me be able to rest and keep energy to do things that I normally do every day like walk my dog, go to the grocery store, run errands, etc. Since the fatigue has made it so that I get tired more easily than I used to, it helps to not spend all day at work and then try to get personal things done on top of it all.

                    jennunicorn
                    Participant

                      As far as being able to maintain your daily routine, that would be much easier with a treatment like Yervoy as opposed to Interferon. From what I have read about Interferon, it makes most people feel like they have the flu for the duration of treatment, which I believe is a year. Very disruptive to anyones daily routine. Yervoy is using your own immune system to fight any cancer cells, so the side effects are much like auto-immune responses. 

                      Doing part time for me definitely helped me be able to rest and keep energy to do things that I normally do every day like walk my dog, go to the grocery store, run errands, etc. Since the fatigue has made it so that I get tired more easily than I used to, it helps to not spend all day at work and then try to get personal things done on top of it all.

                      jennunicorn
                      Participant

                        As far as being able to maintain your daily routine, that would be much easier with a treatment like Yervoy as opposed to Interferon. From what I have read about Interferon, it makes most people feel like they have the flu for the duration of treatment, which I believe is a year. Very disruptive to anyones daily routine. Yervoy is using your own immune system to fight any cancer cells, so the side effects are much like auto-immune responses. 

                        Doing part time for me definitely helped me be able to rest and keep energy to do things that I normally do every day like walk my dog, go to the grocery store, run errands, etc. Since the fatigue has made it so that I get tired more easily than I used to, it helps to not spend all day at work and then try to get personal things done on top of it all.

                        Dalym44
                        Participant

                          Thank you for the information Jenn it has been very imformative. I am in the Philadelphia region so I told I have many opportunities with university hospitals to find   Clinical trials in the area.

                          i guess my biggest concern in deciding upon treatment is having side effects that are getting worst and where I begin having trouble maintaining a daily routine.

                          Would you say that with transferring  to part time work you that you felt better about your overall  health conditions including stress?

                        jennunicorn
                        Participant

                          Sorry you are having to go through this, I am 29 and was diagnosed stage 3b in November 2015, it's not easy dealing with all this at such a young and healthy age.

                          I highly recommend watching this video:

                          It is incredibly informative about stage 3 and gives options as far as treatments go.

                          Most top melanoma oncologists still recommend watch and wait. But, now that Yervoy is FDA approved that is a great option on the table. You should try and find a melanoma specialst in your area (if you're not already seeing one), it is very important since melanoma is not like other cancers and having an oncologist that truely understands melanoma and is up to date on all research and treatments is important.

                          If you research about Interferon, you will notice that studies show very very little help for a patient who does Interferon adjuvant therapy. There is just no reason why anyone should put themselves through the crappy side effects of a drug that will do nothing to help you.

                          Yervoy is better in that it has shown more help than Interferon. It is not a huge amount percentage wise, but the treatment time is shorter and it's the newest FDA approved drug for our stage.. was just approved in October 2015. It does great things for a lot of people in stage 4. And now they are testing other great drugs that have helped a lot of stage 4 patients for stage 3 adjuvant therapy as well.

                          I have done the 4 main doses of Yervoy (10mg/kg) and I got through them with mild side effects. Mostly fatigue. And some other manageable ones as well, dry mouth/eyes, mildly itchy skin. Most common side effects are diarrhea and skin itching/rash. 

                          There are some clinical trials that just started for stage 3 as well, they were not available to me when I made my decision in December, otherwise I would have highly considered doing a clinical trial. Not sure if you're in an area of a medical facility participating in trials, but that could be something to look into as well. All of these things are gone over in the video. It is a long video, but it is really good to get informed before you make any decisions. 

                          All decisions about our health are very personal and everyone will choose their option based on knowing themselves and their bodies the best. 

                          It is hard to say when side effects would start for any individual since drugs effect everyone differently. I had fatigue right away but didn't have many other side effects until after the second and third infusion (they are three weeks apart). Some people work full time through treatment, others might work part time, just depends on the individual. I went down to part time because I was able to with my job and I didn't want to wear myself out. I could have continued full time, but I personally wanted to give my body time to rest and get through this time without too much extra stress.

                          I hope this was helpful for you, I'm sure others will add some more good info for you too. This is a good place to be for knowledge and support.

                          All the best,

                          MoiraM
                          Participant

                            I am stage 3c and I have have Ipi (Yervoy) at the 3mg/kg dose. I am a responder.

                            I had an assortment of side effects. None of them were bad enough to keep me off work but I only work three days a week. I was never admitted to hospital and the actual therapy was very painless and easy.

                            Treatment 1 – nothing

                            Treatment 2 – small amount of diarrheoa and a suggestion of rash

                            Treatment 3 – rash, diarrhoea (controlled with Imodium) and weariness

                            Treatment 4 – rash, diarrhoea and damage to my pituitary gland (signaled by severe headaches, extreme tiredness and no appetite).

                            The side effects (rash and diarrhoea) reappeared two months after I had finished treatment and persisted for another six weeks.

                            If I was going back I would start taking a probiotic before the first treatment and keep taking it throughout.

                             

                             

                            MoiraM
                            Participant

                              I am stage 3c and I have have Ipi (Yervoy) at the 3mg/kg dose. I am a responder.

                              I had an assortment of side effects. None of them were bad enough to keep me off work but I only work three days a week. I was never admitted to hospital and the actual therapy was very painless and easy.

                              Treatment 1 – nothing

                              Treatment 2 – small amount of diarrheoa and a suggestion of rash

                              Treatment 3 – rash, diarrhoea (controlled with Imodium) and weariness

                              Treatment 4 – rash, diarrhoea and damage to my pituitary gland (signaled by severe headaches, extreme tiredness and no appetite).

                              The side effects (rash and diarrhoea) reappeared two months after I had finished treatment and persisted for another six weeks.

                              If I was going back I would start taking a probiotic before the first treatment and keep taking it throughout.

                               

                               

                              MoiraM
                              Participant

                                I am stage 3c and I have have Ipi (Yervoy) at the 3mg/kg dose. I am a responder.

                                I had an assortment of side effects. None of them were bad enough to keep me off work but I only work three days a week. I was never admitted to hospital and the actual therapy was very painless and easy.

                                Treatment 1 – nothing

                                Treatment 2 – small amount of diarrheoa and a suggestion of rash

                                Treatment 3 – rash, diarrhoea (controlled with Imodium) and weariness

                                Treatment 4 – rash, diarrhoea and damage to my pituitary gland (signaled by severe headaches, extreme tiredness and no appetite).

                                The side effects (rash and diarrhoea) reappeared two months after I had finished treatment and persisted for another six weeks.

                                If I was going back I would start taking a probiotic before the first treatment and keep taking it throughout.

                                 

                                 

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