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Deciding on Treatment

Forums General Melanoma Community Deciding on Treatment

  • Post
    Jessmoon
    Participant

      My 35 year old husband was just diagnosed with metastatic melanoma with normal PET scan and sentinal node biopsy.  Yesterday we were presented with treatment options.  1.  Interferon or 2.  Enrolling in a study in which he would receive Interferon or Yervoy.  I am so concerned about the side effects of both medications.  Can anyone share their experiences with either medication? 

      My 35 year old husband was just diagnosed with metastatic melanoma with normal PET scan and sentinal node biopsy.  Yesterday we were presented with treatment options.  1.  Interferon or 2.  Enrolling in a study in which he would receive Interferon or Yervoy.  I am so concerned about the side effects of both medications.  Can anyone share their experiences with either medication? 

    Viewing 13 reply threads
    • Replies
        eaca
        Participant

          I'm so sorry you have to be here, but welcome to this board – you've come to the right place to get lots of good info from a host of people who have been there before.  It would be useful to get better advice if you could fill in the profile for your husband including details of the pathology – how deep, where, etc?  There are lots of posts on the board about these medications, if you put in a search for them. 

          You'll soon see that there are mixed views particularly on Interferon, with some quite adamantly against it.  However, just remember that you need to make the choice based on what's right for your husband, not what's right for anyone else.  Listen to your drs and read all you can to make up your own mind and then don't look back.

          I've recently started peg-interferon treatment and am having very few side effects so far.  Good luck with your choice and I wish you and your husband all the best,

          Elisa

          eaca
          Participant

            I'm so sorry you have to be here, but welcome to this board – you've come to the right place to get lots of good info from a host of people who have been there before.  It would be useful to get better advice if you could fill in the profile for your husband including details of the pathology – how deep, where, etc?  There are lots of posts on the board about these medications, if you put in a search for them. 

            You'll soon see that there are mixed views particularly on Interferon, with some quite adamantly against it.  However, just remember that you need to make the choice based on what's right for your husband, not what's right for anyone else.  Listen to your drs and read all you can to make up your own mind and then don't look back.

            I've recently started peg-interferon treatment and am having very few side effects so far.  Good luck with your choice and I wish you and your husband all the best,

            Elisa

            Tim–MRF
            Guest

              Elisa's response is spot on.  First, more information would be helpful.  You say he had normal PET scan and sentinal node biopsy.  If his sentineal node was clear, that suggests he is Stage I or Stage II.  Yet the diagnosis is metastatic melanoma.  I wonder what that means, if it hasn't spread to the lymph nodes or to other organs?

              If he is Stage I or Stage II, one option in either case is to take no treatment at all.  In fact, that is what a lot of people do, but based on the details.  If the primary tumor was particularly thick or had a high mitotic rate or had invasive strands, etc. then the balance tips a bit toward doing some type of treatment.

              The long-term data on interferon are that in a large group of people over a number of years it shows no improvement in survival statistics and some small improvement in the delay before any recurrence (for those patients who do have a recurrence).  I know people, some of whom are active on this board, who swear that interferon saved their life.  And that may very well be the case.

              Yervoy has been shown to extend life in patients with advanced Stage IV melanoma.  They are testing it now to see if it has benefit for people whose melanoma was caught earlier.  A number of researchers believe that this is where the greatest benefit will be found.

              You will likely get better advice if you can come back with more detail.  Regardless, you will find a lot of information and support here.  I am sorry you and your husband are having to go through this, but can assure you that there is no better group with whom to walk this journey than the people you will find on this board.

              Tim–MRF

              Tim–MRF
              Guest

                Elisa's response is spot on.  First, more information would be helpful.  You say he had normal PET scan and sentinal node biopsy.  If his sentineal node was clear, that suggests he is Stage I or Stage II.  Yet the diagnosis is metastatic melanoma.  I wonder what that means, if it hasn't spread to the lymph nodes or to other organs?

                If he is Stage I or Stage II, one option in either case is to take no treatment at all.  In fact, that is what a lot of people do, but based on the details.  If the primary tumor was particularly thick or had a high mitotic rate or had invasive strands, etc. then the balance tips a bit toward doing some type of treatment.

                The long-term data on interferon are that in a large group of people over a number of years it shows no improvement in survival statistics and some small improvement in the delay before any recurrence (for those patients who do have a recurrence).  I know people, some of whom are active on this board, who swear that interferon saved their life.  And that may very well be the case.

                Yervoy has been shown to extend life in patients with advanced Stage IV melanoma.  They are testing it now to see if it has benefit for people whose melanoma was caught earlier.  A number of researchers believe that this is where the greatest benefit will be found.

                You will likely get better advice if you can come back with more detail.  Regardless, you will find a lot of information and support here.  I am sorry you and your husband are having to go through this, but can assure you that there is no better group with whom to walk this journey than the people you will find on this board.

                Tim–MRF

                bblapril
                Participant

                  My Husband is 42 and currently doing the Interferon Alpha 2b treatments.  So far the side effects have not been bad for him.  He does get tired and irritable but for the most part is ok.  His treatment schedule is 4 days one week then off for two weeks and repeat for six months.  He is half way through treatment now.

                  Best of luck with your decision and treatment.  My thoughts are with you!

                  bblapril
                  Participant

                    My Husband is 42 and currently doing the Interferon Alpha 2b treatments.  So far the side effects have not been bad for him.  He does get tired and irritable but for the most part is ok.  His treatment schedule is 4 days one week then off for two weeks and repeat for six months.  He is half way through treatment now.

                    Best of luck with your decision and treatment.  My thoughts are with you!

                    triciad
                    Participant

                       

                      Here's a resposting of my response to someone regarding interferon.

                      Interferon can definitely be a beast.  I finished my yearlong treatments on October 30, 2010.   I'm stage 3C.  It wasn't a great year, but it was doable for me.  I was able to teach first grade throughout the entire treatment; however, interferon effects people differently.  I also had the summer off (months 9+10), but I did a lot of "work" around the house.  Here are some of the things that helped me get through it.

                      – drink PLENTY of water – at least 64 ounces/day.

                      – eat whatever you can keep down – even if it's a whole Sara Lee poundcake – your body needs the fuel

                      – lemons, slurpees, pasta helped me alot

                      – anything with vinegar made me sick

                      – definitely lost taste for food and appetite, but you have to get whatever down that will stay down.

                      – I gave myself my shots around 7:00 with 2 Tylenol and 1 Benadryl…then went to bed

                      – slept until 6:30 each morning, so at least 11 hours of sleep/day

                      I gave my shots on Tuesdays, Thursdays, and Saturdays.  This way during the week, Wed and Friday were a little rougher, but Monday and Tuesdays were pretty good.  The bottom line is that I gave myself over to Interferon for the year.  I didn't go out much, especially to night functions.  I knew it was too tough on my body, and I wanted to give my body every chance to make the full year.  I did…with no regrets.  Now, whatever happens is in God's hands, but I gave it my all.

                      Best of luck with your decision regarding treatment.  Please feel free to email me if you have any additional questions.  God bless!

                      Tricia

                      triciad
                      Participant

                         

                        Here's a resposting of my response to someone regarding interferon.

                        Interferon can definitely be a beast.  I finished my yearlong treatments on October 30, 2010.   I'm stage 3C.  It wasn't a great year, but it was doable for me.  I was able to teach first grade throughout the entire treatment; however, interferon effects people differently.  I also had the summer off (months 9+10), but I did a lot of "work" around the house.  Here are some of the things that helped me get through it.

                        – drink PLENTY of water – at least 64 ounces/day.

                        – eat whatever you can keep down – even if it's a whole Sara Lee poundcake – your body needs the fuel

                        – lemons, slurpees, pasta helped me alot

                        – anything with vinegar made me sick

                        – definitely lost taste for food and appetite, but you have to get whatever down that will stay down.

                        – I gave myself my shots around 7:00 with 2 Tylenol and 1 Benadryl…then went to bed

                        – slept until 6:30 each morning, so at least 11 hours of sleep/day

                        I gave my shots on Tuesdays, Thursdays, and Saturdays.  This way during the week, Wed and Friday were a little rougher, but Monday and Tuesdays were pretty good.  The bottom line is that I gave myself over to Interferon for the year.  I didn't go out much, especially to night functions.  I knew it was too tough on my body, and I wanted to give my body every chance to make the full year.  I did…with no regrets.  Now, whatever happens is in God's hands, but I gave it my all.

                        Best of luck with your decision regarding treatment.  Please feel free to email me if you have any additional questions.  God bless!

                        Tricia

                        Jessmoon
                        Participant

                          I'm sorry I didn't give more information on my husband. He has a very atypical presentation.  He didn't have a mole, but just a small bump on his shin.  This was excised completely (approx 1cm x 1cm), and two pathologists agree that it is metastatic melanoma.  Our oncologist states we may never know where it started.  They have not staged him yet-waiting on results of MRI of brain that was completed today.  We all know, PET scans are not 100% and unfortunately sometimes Melanoma can travel through veins, not always through the lymph nodes. 

                          Jessmoon
                          Participant

                            I'm sorry I didn't give more information on my husband. He has a very atypical presentation.  He didn't have a mole, but just a small bump on his shin.  This was excised completely (approx 1cm x 1cm), and two pathologists agree that it is metastatic melanoma.  Our oncologist states we may never know where it started.  They have not staged him yet-waiting on results of MRI of brain that was completed today.  We all know, PET scans are not 100% and unfortunately sometimes Melanoma can travel through veins, not always through the lymph nodes. 

                            Jessmoon
                            Participant

                              I'm sorry I didn't give more information on my husband. He has a very atypical presentation.  He didn't have a mole, but just a small bump on his shin.  This was excised completely (approx 1cm x 1cm), and two pathologists agree that it is metastatic melanoma.  Our oncologist states we may never know where it started.  They have not staged him yet-waiting on results of MRI of brain that was completed today.  We all know, PET scans are not 100% and unfortunately sometimes Melanoma can travel through veins, not always through the lymph nodes. 

                                JoshF
                                Participant

                                  JessMoon-

                                  I'm sorry you have to be here but welcome. I'm fairly new to this as I recently joined after being diagnosed in early 2011. I'm glad I read about your situation. I had a similar presentation of melanoma in my right cheek. It was a small bump that my derm felt was a cyst….surprise!!!! Pathology said it was metastatic mel.  Anyway, long story short….I had been checked over looking for leison by derm, oncologist, primary care doc….NOTHING!!! PET/CT Scan…negative. In the meantime, my aunt found an oncologist who treats and researchs only melanoma.  He gathered all info, path slides etc… He came back and said he felt that my case was a rare case of primary dermal melanoma. It's a distinct sub-type of melanoma that begins in dermis rather than epidermis. He ordered surgery….wide excision and sentinel node biopsy. Clear margins were obtained and lymph biopsy was negative. Leison was 5.7mm wide and again suggestive of metastatic melanoma.My doc said doing a course of chemo or immuno treatment would probably be more harmful than good. There have been studies to show that this type of melanoma presents itself as melanoma….remember there is no epidermis invloved so that in itself would be odd to a pathologist. Frank from Australia responded to a post I did and sent me an article on this type of melanoma. I will go back to find it and send to you. I know not "finding a p[rimary" scares you…I'm still freaked out and deal with intense anxiety. I look forward to follow up appts…have one today….think he will order my 6 month scan…more anxiety!!!!

                                  Questions for you:

                                  Is your oncologists an expert in dealing with melanoma?

                                  How long was bump there? Does your husband have a lot of moles? Any previously removed?

                                  I think less than 7-8% of cases they never find a primary….I'm pulling for you…keep me posted. You're family is in my prayers.

                                   

                                  Josh

                                  JoshF
                                  Participant

                                    JessMoon-

                                    I'm sorry you have to be here but welcome. I'm fairly new to this as I recently joined after being diagnosed in early 2011. I'm glad I read about your situation. I had a similar presentation of melanoma in my right cheek. It was a small bump that my derm felt was a cyst….surprise!!!! Pathology said it was metastatic mel.  Anyway, long story short….I had been checked over looking for leison by derm, oncologist, primary care doc….NOTHING!!! PET/CT Scan…negative. In the meantime, my aunt found an oncologist who treats and researchs only melanoma.  He gathered all info, path slides etc… He came back and said he felt that my case was a rare case of primary dermal melanoma. It's a distinct sub-type of melanoma that begins in dermis rather than epidermis. He ordered surgery….wide excision and sentinel node biopsy. Clear margins were obtained and lymph biopsy was negative. Leison was 5.7mm wide and again suggestive of metastatic melanoma.My doc said doing a course of chemo or immuno treatment would probably be more harmful than good. There have been studies to show that this type of melanoma presents itself as melanoma….remember there is no epidermis invloved so that in itself would be odd to a pathologist. Frank from Australia responded to a post I did and sent me an article on this type of melanoma. I will go back to find it and send to you. I know not "finding a p[rimary" scares you…I'm still freaked out and deal with intense anxiety. I look forward to follow up appts…have one today….think he will order my 6 month scan…more anxiety!!!!

                                    Questions for you:

                                    Is your oncologists an expert in dealing with melanoma?

                                    How long was bump there? Does your husband have a lot of moles? Any previously removed?

                                    I think less than 7-8% of cases they never find a primary….I'm pulling for you…keep me posted. You're family is in my prayers.

                                     

                                    Josh

                                  Jessmoon
                                  Participant

                                    I'm sorry I didn't give more information on my husband. He has a very atypical presentation.  He didn't have a mole, but just a small bump on his shin.  This was excised completely (approx 1cm x 1cm), and two pathologists agree that it is metastatic melanoma.  Our oncologist states we may never know where it started.  They have not staged him yet-waiting on results of MRI of brain that was completed today.  We all know, PET scans are not 100% and unfortunately sometimes Melanoma can travel through veins, not always through the lymph nodes. 

                                    Hereiam
                                    Participant

                                      Hi,

                                      I am very sorry about your husband, I really hope he is doing well.
                                      I can share an experience of my aunt (diagnosed with melanoma stage 3 in 2007). Unfortunately, she was sensitive to interferon and it did no good to her. She had various side-effects, like, fatigue, nausea, hard to concentrate, feeling very depressive, hair falling out. Of course, as anyone here mentioned, Interferon is something to which any patient reacts differently, so your husband might feel no side-effects to it. Anyhow, my aunt couldn`t do chemo or radio, so her onc advised her to try virotherapy (in Latvia it is done with Rigvir) and she actually corresponded good to it. She had more energy and her feelings were more balansed. All I wanted to say is, that you should consult your doctors about various treatment methods, and possibly choose the one, which harms your husband`s body the least. Cuz during the therapy, protection of the healthy cells of the body is as important as killing malignant cells.

                                      Praying for your husband`s recovery!

                                      Hereiam
                                      Participant

                                        Hi,

                                        I am very sorry about your husband, I really hope he is doing well.
                                        I can share an experience of my aunt (diagnosed with melanoma stage 3 in 2007). Unfortunately, she was sensitive to interferon and it did no good to her. She had various side-effects, like, fatigue, nausea, hard to concentrate, feeling very depressive, hair falling out. Of course, as anyone here mentioned, Interferon is something to which any patient reacts differently, so your husband might feel no side-effects to it. Anyhow, my aunt couldn`t do chemo or radio, so her onc advised her to try virotherapy (in Latvia it is done with Rigvir) and she actually corresponded good to it. She had more energy and her feelings were more balansed. All I wanted to say is, that you should consult your doctors about various treatment methods, and possibly choose the one, which harms your husband`s body the least. Cuz during the therapy, protection of the healthy cells of the body is as important as killing malignant cells.

                                        Praying for your husband`s recovery!

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