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Newly diagnosed Stage III – seeking advice what to do?

Forums General Melanoma Community Newly diagnosed Stage III – seeking advice what to do?

  • Post
    Mark_DC
    Participant

      Dear Forum members,

      Thank you for creating this forum — have been reading the last few weeks since my Stage III diagnosis and surgery to remove melanoma on my leg (on crutches and home two weeks). Sad that I have to join you (!) but also amazed at your stories and also all the help you are offering each other. Through you I have learnt so much about this disease (Celeste's guide to all the abbreviations helped lots, she may not have realised, plus others' links to videos and talks).

      I am sorry to start my first post with a question, and not with cheering on fellow sufferers as they await their scans, have been praying for them and thinking of them though, the last few weeks. Has been hard for me to write and I have been putting this off, but I need your help and respect your advice.

      Melanoma on my lower left leg in 2014 recurred in February 2016 (am now T2aN2cM0). Fortunately my SNLB was negative both in 2014 and again in February. Had not expected this to recur πŸ™ Was assuming that it had been removed in 2014, odds were in my favour I thought! Now because it has recurred I am considered IIIB, although my lymph nodes are negative thankfully and no mets detected on CT and MRI. Live in DC and am being treated by Dr. Gibney (and I think Dr. Atkins too).

      My question is, what should I do now? Should I take adjuvant therapy? I have been offered:

      – Clinical trial between pembro and interferon (both adjuvant)

      – Ipi as adjuvant

      – Watchful waiting

      It is very hard for me to decide. To me, the downside of the clinical trial is the interferon arm — forum members seem to be pretty negative about this, about its efficacy and the side effects. What if I get placed on the interferon arm? Yet I know some of you are taking this route. And if it helps, then it could be worth it. Until recently, I would have preferred a clinical trial vs. ipi but this is not available. I understand there is a trial of pembro vs placebo, but not close to me (I could travel if needed, and know that many of you do).

      I was going to take ipi as adjuvant, but when I sought a second opinion at the doctor noted the side effects, including in the worst case death (1 percent). The second opinion also cautioned me that side effects from ipi (maybe even from pembro) could limit my clinical trial options in case I move to Stage IV, which I kind of fear is likely given my progression from I to III. I might be prevented from taking some combination therapy clinical trials at Stage IV. I know some of you are taking this route though, so would welcome your advice, why did you decide this over watch and wait?

      Final option seems tempting, my job involves international travel, and taking immunotherapy would kind of rule this out according to my second opinion doctor. If things flare up he thinks I need to be close to my doctor.

      But I also dont want to duck out and take the "easy" option. I have a good job and I will not be penalized for taking treatment, I do not have to travel, it will mean taking a back seat for a while, but thats OK, my job will want me to do whats best for my health. I should make every effort to fight this thing and ideally kill it off. But is there a good way to do this? Do the medicines really work for III (my second opinion doctor suggested the immunothrapies worked better against solid tumours than cancerous cells in the bloodstream, because the tumours themselves have immune cells or something like that). Should I instead watch and wait, hope not to go to Stage IV, but if I do go to IV then try to fight it like many of you on this forum have? Or should I be pro-active now (but only if it helps, right?)

      I meet my doctors on Wednesday and we need to make the decision then or shortly thereafter. I am very confused and would welcome any advice. They seem to recommend the clinical trial, but I am not so keen on interferon although on the plus side it does seem a known quantity — I might be depressed for a year and buy one year, but side effects not disastrous, right?

      I again thank you for reading this and also the many useful posts on this forum, and also the amazing stories, happy and sad, which always move me.

      Good luck

      Mark

       

       

       

       

    Viewing 26 reply threads
    • Replies
        jennunicorn
        Participant

          Hi Mark,

          Sorry you are having to deal with this crappy cancer. I am stage IIIB and had similar choices to you. Back in December when I had to make my choice, there were no clical trials happening, so my options were Ipi or watch and wait.  I chose to do Ipi. My personal reasoning for that choice was due to my age and overall health. I am 29 and generally a healthy person. I figured if any side effects came up I would deal with them as they came. I did the four main doses at the adjuvant 10mg/kg without any major side effects. I will be doing the maintanence doses, next infusion is in May. The side effects I did experience and are still ongoing are fatigue, eczema flare ups (I have eczema already, so Ipi just made it extra hyped up), mildly itchy skin, joint pain (which is not new for me so feels similar to the eczema situation that it's being flared up by the Ipi) and dry eyes. All very manageable stuff. Others have had more serious side effects but have been dealt with and treated by their doctors. This choice isn't easy, we know. It's very personal and can feel very overwhelming. 

          If I had the choice of a clinical trial I would have most likely gone with it. My reasoning on that is because being at stage 3, it feels easier to choose a trial, mostly because I feel like I've got time and health to contribute. It feels less scary and time sensitive than stage 4, if that makes sense. Interferon side effects, from what I have read, are kind of brutal and it's pretty obvious when someone goes on a trial like pembro vs. interferon which drug you're getting. You could always drop out of the trial if you feel you got interferon and don't want to put yourself through that. Or, you could travel to get the pembro vs. placebo, which I personally would rather do if I were to choose a trial. Placebo sounds scary, but at stage 3 that's basically saying pembro vs watch and wait, there's no difference between placebo and watch and wait. 

          Those are my two cents, I know this is a crazy confusing time. I am sure you'll get some more good advice to help you decide. 

          All the best,

          jennunicorn
          Participant

            Hi Mark,

            Sorry you are having to deal with this crappy cancer. I am stage IIIB and had similar choices to you. Back in December when I had to make my choice, there were no clical trials happening, so my options were Ipi or watch and wait.  I chose to do Ipi. My personal reasoning for that choice was due to my age and overall health. I am 29 and generally a healthy person. I figured if any side effects came up I would deal with them as they came. I did the four main doses at the adjuvant 10mg/kg without any major side effects. I will be doing the maintanence doses, next infusion is in May. The side effects I did experience and are still ongoing are fatigue, eczema flare ups (I have eczema already, so Ipi just made it extra hyped up), mildly itchy skin, joint pain (which is not new for me so feels similar to the eczema situation that it's being flared up by the Ipi) and dry eyes. All very manageable stuff. Others have had more serious side effects but have been dealt with and treated by their doctors. This choice isn't easy, we know. It's very personal and can feel very overwhelming. 

            If I had the choice of a clinical trial I would have most likely gone with it. My reasoning on that is because being at stage 3, it feels easier to choose a trial, mostly because I feel like I've got time and health to contribute. It feels less scary and time sensitive than stage 4, if that makes sense. Interferon side effects, from what I have read, are kind of brutal and it's pretty obvious when someone goes on a trial like pembro vs. interferon which drug you're getting. You could always drop out of the trial if you feel you got interferon and don't want to put yourself through that. Or, you could travel to get the pembro vs. placebo, which I personally would rather do if I were to choose a trial. Placebo sounds scary, but at stage 3 that's basically saying pembro vs watch and wait, there's no difference between placebo and watch and wait. 

            Those are my two cents, I know this is a crazy confusing time. I am sure you'll get some more good advice to help you decide. 

            All the best,

              Mark_DC
              Participant

                Dear Jenn (JennUnicorn smiley) – thank you for replying, yours was one of the cases I was thinking about, since I knew you were on ipi. I have also been following your progress and I think biopsies and scans and thinking of you!

                After my second opinion I was having second thoughts about ipi. I have to check with Dr. Gibney / Atkins too as Dr Atkins' recent video was maybe questioning ipi, not sure.

                I still dont know what to do.

                You say you would do a trial if you had been offered the choice. My trial would be pembro vs interferon (if I stay in DC) — it seems a weird trial because although randomised, once the coin is flipped I will know which one I am receiving, because the treatments are given differently. So then people receiving interferon may be disappointed and could drop out or not complete treatment. I would not want to sign up for trial knowing I would drop out if assigned interferon, probably this is morally wrong. Could I at least try inteferon and see if I manage, but if it makes me down and has no use then not sure.

                There is a trial of pembro vs placebo but Georgetown and Johns Hopkins are not yet in this one, so I would have to fly to Chicago or something for this, plus have to sign up for this (have not contacted the trial people yet, was only aware of this Wednesday). I might then lose my Georgetown team which would not be great, right? πŸ™ I think if offered in DC i would take pembro vs placebo, as you say its like watch and wait in the "worst" case, with a lot of careful watching! Plus I would be contributing something.

                Now you have confused me a little because your ipi side effects seem OK. After my second opinion I was leaning against ipi. I am 51, not super fit but not overweight, need to exercise but have an allergy to gyms (like cycling instead but now going outside in the sun scares me). I could give it a chance, I do intend to exercise more.

                I appreciate your advice and time, and have been following your posts. If you have any more ideas do please write as I am very uncertain. I guess I would choose pembro vs placebo trial if it was available to me, but should I do this if I have to travel? (irony is I travel a lot but internationally, not in the states (am british), so chicago is quite foreign to me!)

                thank you Mark

                jennunicorn
                Participant

                  If I had to deal with the travel aspect in order to do a trial I wanted, I would probably not go for it. I know a trial is a lot more detailed than just a basic treatment, so I am not sure if there would be extra travel time involved for doing a trial and how stressful on your body it would be having to go back and forth so much.

                  I know that my story of having this "easy" time with Ipi and comparing that to some other stories makes it confusing and difficult. It's like gambling, we have no clue how our bodies will react to anything. But, your local team would be there for you at any sign of any side effect and if anything came up you'd let them know right away and they'd get your side effect treated and taken care of. It's kind of annoying in the sense that any time something happens you think "is this a side effect? or did I just eat something that upset my stomach?". I have had those moments a lot, and nothing major has come of any stomach upset issues or anything else. I always let my onc know though.

                  I completely agree with not wanting to go into a trial knowing that as soon as you "know" you're on interferon you'd drop out… because why would anyone want to go through that? It's really rough and does nothing, so weird that they are even using that as a comparative anymore. 

                  It really comes down to, what does your gut tell you? My boyfriend was really scared for me to do Ipi, he wanted me to watch and wait. I wasn't sure what to do, I was torn and scared but I just had to relax and sort of invision what I saw myself doing and I knew that watch and wait would make me very anxious and would have me saying "I wish I was doing something".  I don't know if you're a meditating kind of guy, but trying to relax and clear your mind can sometimes help us hone in on what decisions we should make for ourselves. 

                  It's not easy, it's all very personal and confusing and scary and makes you want to run in the other direction and forget all about this stuff sometimes… well, for it does haha. 

                  I'll keep you in my thoughts and whatever decision you make just know that is the right one for you!

                  jennunicorn
                  Participant

                    If I had to deal with the travel aspect in order to do a trial I wanted, I would probably not go for it. I know a trial is a lot more detailed than just a basic treatment, so I am not sure if there would be extra travel time involved for doing a trial and how stressful on your body it would be having to go back and forth so much.

                    I know that my story of having this "easy" time with Ipi and comparing that to some other stories makes it confusing and difficult. It's like gambling, we have no clue how our bodies will react to anything. But, your local team would be there for you at any sign of any side effect and if anything came up you'd let them know right away and they'd get your side effect treated and taken care of. It's kind of annoying in the sense that any time something happens you think "is this a side effect? or did I just eat something that upset my stomach?". I have had those moments a lot, and nothing major has come of any stomach upset issues or anything else. I always let my onc know though.

                    I completely agree with not wanting to go into a trial knowing that as soon as you "know" you're on interferon you'd drop out… because why would anyone want to go through that? It's really rough and does nothing, so weird that they are even using that as a comparative anymore. 

                    It really comes down to, what does your gut tell you? My boyfriend was really scared for me to do Ipi, he wanted me to watch and wait. I wasn't sure what to do, I was torn and scared but I just had to relax and sort of invision what I saw myself doing and I knew that watch and wait would make me very anxious and would have me saying "I wish I was doing something".  I don't know if you're a meditating kind of guy, but trying to relax and clear your mind can sometimes help us hone in on what decisions we should make for ourselves. 

                    It's not easy, it's all very personal and confusing and scary and makes you want to run in the other direction and forget all about this stuff sometimes… well, for it does haha. 

                    I'll keep you in my thoughts and whatever decision you make just know that is the right one for you!

                    jennunicorn
                    Participant

                      If I had to deal with the travel aspect in order to do a trial I wanted, I would probably not go for it. I know a trial is a lot more detailed than just a basic treatment, so I am not sure if there would be extra travel time involved for doing a trial and how stressful on your body it would be having to go back and forth so much.

                      I know that my story of having this "easy" time with Ipi and comparing that to some other stories makes it confusing and difficult. It's like gambling, we have no clue how our bodies will react to anything. But, your local team would be there for you at any sign of any side effect and if anything came up you'd let them know right away and they'd get your side effect treated and taken care of. It's kind of annoying in the sense that any time something happens you think "is this a side effect? or did I just eat something that upset my stomach?". I have had those moments a lot, and nothing major has come of any stomach upset issues or anything else. I always let my onc know though.

                      I completely agree with not wanting to go into a trial knowing that as soon as you "know" you're on interferon you'd drop out… because why would anyone want to go through that? It's really rough and does nothing, so weird that they are even using that as a comparative anymore. 

                      It really comes down to, what does your gut tell you? My boyfriend was really scared for me to do Ipi, he wanted me to watch and wait. I wasn't sure what to do, I was torn and scared but I just had to relax and sort of invision what I saw myself doing and I knew that watch and wait would make me very anxious and would have me saying "I wish I was doing something".  I don't know if you're a meditating kind of guy, but trying to relax and clear your mind can sometimes help us hone in on what decisions we should make for ourselves. 

                      It's not easy, it's all very personal and confusing and scary and makes you want to run in the other direction and forget all about this stuff sometimes… well, for it does haha. 

                      I'll keep you in my thoughts and whatever decision you make just know that is the right one for you!

                      Mark_DC
                      Participant

                        Dear Jenn (JennUnicorn smiley) – thank you for replying, yours was one of the cases I was thinking about, since I knew you were on ipi. I have also been following your progress and I think biopsies and scans and thinking of you!

                        After my second opinion I was having second thoughts about ipi. I have to check with Dr. Gibney / Atkins too as Dr Atkins' recent video was maybe questioning ipi, not sure.

                        I still dont know what to do.

                        You say you would do a trial if you had been offered the choice. My trial would be pembro vs interferon (if I stay in DC) — it seems a weird trial because although randomised, once the coin is flipped I will know which one I am receiving, because the treatments are given differently. So then people receiving interferon may be disappointed and could drop out or not complete treatment. I would not want to sign up for trial knowing I would drop out if assigned interferon, probably this is morally wrong. Could I at least try inteferon and see if I manage, but if it makes me down and has no use then not sure.

                        There is a trial of pembro vs placebo but Georgetown and Johns Hopkins are not yet in this one, so I would have to fly to Chicago or something for this, plus have to sign up for this (have not contacted the trial people yet, was only aware of this Wednesday). I might then lose my Georgetown team which would not be great, right? πŸ™ I think if offered in DC i would take pembro vs placebo, as you say its like watch and wait in the "worst" case, with a lot of careful watching! Plus I would be contributing something.

                        Now you have confused me a little because your ipi side effects seem OK. After my second opinion I was leaning against ipi. I am 51, not super fit but not overweight, need to exercise but have an allergy to gyms (like cycling instead but now going outside in the sun scares me). I could give it a chance, I do intend to exercise more.

                        I appreciate your advice and time, and have been following your posts. If you have any more ideas do please write as I am very uncertain. I guess I would choose pembro vs placebo trial if it was available to me, but should I do this if I have to travel? (irony is I travel a lot but internationally, not in the states (am british), so chicago is quite foreign to me!)

                        thank you Mark

                        Mark_DC
                        Participant

                          Dear Jenn (JennUnicorn smiley) – thank you for replying, yours was one of the cases I was thinking about, since I knew you were on ipi. I have also been following your progress and I think biopsies and scans and thinking of you!

                          After my second opinion I was having second thoughts about ipi. I have to check with Dr. Gibney / Atkins too as Dr Atkins' recent video was maybe questioning ipi, not sure.

                          I still dont know what to do.

                          You say you would do a trial if you had been offered the choice. My trial would be pembro vs interferon (if I stay in DC) — it seems a weird trial because although randomised, once the coin is flipped I will know which one I am receiving, because the treatments are given differently. So then people receiving interferon may be disappointed and could drop out or not complete treatment. I would not want to sign up for trial knowing I would drop out if assigned interferon, probably this is morally wrong. Could I at least try inteferon and see if I manage, but if it makes me down and has no use then not sure.

                          There is a trial of pembro vs placebo but Georgetown and Johns Hopkins are not yet in this one, so I would have to fly to Chicago or something for this, plus have to sign up for this (have not contacted the trial people yet, was only aware of this Wednesday). I might then lose my Georgetown team which would not be great, right? πŸ™ I think if offered in DC i would take pembro vs placebo, as you say its like watch and wait in the "worst" case, with a lot of careful watching! Plus I would be contributing something.

                          Now you have confused me a little because your ipi side effects seem OK. After my second opinion I was leaning against ipi. I am 51, not super fit but not overweight, need to exercise but have an allergy to gyms (like cycling instead but now going outside in the sun scares me). I could give it a chance, I do intend to exercise more.

                          I appreciate your advice and time, and have been following your posts. If you have any more ideas do please write as I am very uncertain. I guess I would choose pembro vs placebo trial if it was available to me, but should I do this if I have to travel? (irony is I travel a lot but internationally, not in the states (am british), so chicago is quite foreign to me!)

                          thank you Mark

                        jennunicorn
                        Participant

                          Hi Mark,

                          Sorry you are having to deal with this crappy cancer. I am stage IIIB and had similar choices to you. Back in December when I had to make my choice, there were no clical trials happening, so my options were Ipi or watch and wait.  I chose to do Ipi. My personal reasoning for that choice was due to my age and overall health. I am 29 and generally a healthy person. I figured if any side effects came up I would deal with them as they came. I did the four main doses at the adjuvant 10mg/kg without any major side effects. I will be doing the maintanence doses, next infusion is in May. The side effects I did experience and are still ongoing are fatigue, eczema flare ups (I have eczema already, so Ipi just made it extra hyped up), mildly itchy skin, joint pain (which is not new for me so feels similar to the eczema situation that it's being flared up by the Ipi) and dry eyes. All very manageable stuff. Others have had more serious side effects but have been dealt with and treated by their doctors. This choice isn't easy, we know. It's very personal and can feel very overwhelming. 

                          If I had the choice of a clinical trial I would have most likely gone with it. My reasoning on that is because being at stage 3, it feels easier to choose a trial, mostly because I feel like I've got time and health to contribute. It feels less scary and time sensitive than stage 4, if that makes sense. Interferon side effects, from what I have read, are kind of brutal and it's pretty obvious when someone goes on a trial like pembro vs. interferon which drug you're getting. You could always drop out of the trial if you feel you got interferon and don't want to put yourself through that. Or, you could travel to get the pembro vs. placebo, which I personally would rather do if I were to choose a trial. Placebo sounds scary, but at stage 3 that's basically saying pembro vs watch and wait, there's no difference between placebo and watch and wait. 

                          Those are my two cents, I know this is a crazy confusing time. I am sure you'll get some more good advice to help you decide. 

                          All the best,

                          MoiraM
                          Participant

                            Putting the side effects of Ipi into context

                            I am Stage 3C. I am too phobic of hospitals and doctors for surgery. I was therefore offered Ipi and took it.

                            I know Ipi can have bad side effects but I do think that the side-effects are much better managed by clinic teams now that Ipi is part of everyday treatment. I think that the 1% death figure that you mention is probably based on out-of-date figures. Most clinical teams would take patients off Ipi if they showed the signs of severe negative effects.

                            In the UK, the standard dosage of Ipi is 3mg/kg. Patients have four infusions at 3 week intervals. There are no maintenance doses.

                            I am considered to have had bad side effects. My pituitary gland no longer works and I need thyroxine and cortisol hormone replacement in the form of daily pills. However I was never admitted to hospital and I only missed a few days of work.

                            Your situation

                            1. You have no evidence of disease at the moment. You have no way of knowing if any therapy is working! You would still have to 'watch and wait'.

                            2. I am intrigued by your doctor's comment about imuunotherapies maybe requiring solid tumours to induce the desired effect in the body. One of my doctors commented that the positive effects of Ipi were better if the 'tumour burden is low'. Maybe there is a 'Goldilocks zone' for Ipi!

                            3. Ipi response rates are low. Historically 15%. Could be slightly higher now that more data is available.

                            4. I would not touch interferon with a bargepole. I want a decent quality of life while I am living with this disease.

                            5. With therapies moving on so fast, maybe, as you say, there would be something better in the future.

                            My attitude

                            I understand your desire for 'a cure'. Personally, I find the notion of a cure counterproductive. I think of melanoma like a war going on in my body. The good guys are my immune system. The bad guys are the melanoma cells. I only do things that have a good chance of (a) knocking off bad guys, (b) keeping the good guys in good shape and (c) not causing too much collateral damage. I also always consider my quality of life. Good time now is more valuble than good time later that may never arrive.

                              Mark_DC
                              Participant

                                Dear Moira, thanks for writing. Am British too (but living in the US!)

                                Which option would you recommend though? I also dont think there is a cure but kind of a struggle which we have to live through. How should I do your (a) (b) and (c)? Go for the pembro vs interferon trial (but you dont like interferon), try to arrange for pembro vs placebo trial (not offered in DC), or like you go for ipi. Or do nothing (watch and wait)?

                                How much surgery would you have needed? I have had two excisions on my lower left leg, the first two years ago was OK, the second recently was a larger excision with skin graft so knocked me out a little — leg in a splint for one week plus, didnt want to damage the wound since last time it did not heal so great so was lying down for a week overdoing it, after two weeks was able to walk without crutches. I dont like hospitals but have found the doctors and hospitals in DC really caring. Wish could help you with this.

                                I have no idea how to decide and meet my doctors wednesday! But appreciate your help and others who post on this Board, has helped me lots the last four plus weeks.

                                good luck Mark

                                 

                                Mark_DC
                                Participant

                                  Dear Moira, thanks for writing. Am British too (but living in the US!)

                                  Which option would you recommend though? I also dont think there is a cure but kind of a struggle which we have to live through. How should I do your (a) (b) and (c)? Go for the pembro vs interferon trial (but you dont like interferon), try to arrange for pembro vs placebo trial (not offered in DC), or like you go for ipi. Or do nothing (watch and wait)?

                                  How much surgery would you have needed? I have had two excisions on my lower left leg, the first two years ago was OK, the second recently was a larger excision with skin graft so knocked me out a little — leg in a splint for one week plus, didnt want to damage the wound since last time it did not heal so great so was lying down for a week overdoing it, after two weeks was able to walk without crutches. I dont like hospitals but have found the doctors and hospitals in DC really caring. Wish could help you with this.

                                  I have no idea how to decide and meet my doctors wednesday! But appreciate your help and others who post on this Board, has helped me lots the last four plus weeks.

                                  good luck Mark

                                   

                                  MoiraM
                                  Participant

                                    I would not do anything that might involve going on interferon.

                                    I did have the primary (on my right forearm) excised because that could be done without a hospital admisson. They went straight for a wide excision with a skin graft but they still did not get the required margins. I refused to let them have another go. At diagnosis, I had two tumours in lymph nodes in my right armpit (seen on CT, lit up like a Xmas tree on a PET). There is also a lump on my inner abdomen wall and some tiny lumps in my lungs but these did not light up in the PET scan so are not melanoma. So after the CT scan I was stage 4 and then, after the PET scan, I was 'downgraded' to stage 3C.

                                    If I had followed the standard path I would have had a complete lymph node dissection of the area. This could not be done without being admitted to hospital. Even if I had agreed to do it, there was only a 20% chance of the melanoma not coming back and a much higher chance of my right arm and hand being affected by lymphoedma, which would have meant more hospital visits and possible admissions to manage.

                                    It was a rollercoaster. When I was stage 4 I had a treatment plan I could live with (Ipi then anti-kinase drugs). As soon as I was back to stage 3c I could not have the Ipi because Ipi is not available for stage 3C melanoma.

                                    Throughout all this I was seeing a clinical psychologist. I was diagnosed sane (thank goodness) but with a 'morbid phobia'. The melanoma team decided that the melanoma was unresectable due to my phobia. Back to Ipi.

                                    Ipi suited me partocularly well because I only had to do the four treatments as there is no maintenance regime on the NHS in the UK. I would have chosen it over pembro/nivo because you have to keep going to the clinic for pembro/nivo treatments. As it was pembro/nivo was not available a year ago on the NHS. It is now.

                                    You have asked my opinion so here it is. Go live your life and do the watchful waiting. You are going to have to do that anyway, even if you do treatment. None of the treatments have a 100% response rate and you will still be going for regular scans.

                                    If it comes back (and, yes, it might) there might be something  far better on the table. Even if there isn't you will be able to monitor the success of the treatment by tumour shrinkage.

                                    I am not you. Think it through. Make sure you are happy with your decision. If you can't make the decision when the doctors want you to, ask if you can have more time.

                                     

                                    MoiraM
                                    Participant

                                      I would not do anything that might involve going on interferon.

                                      I did have the primary (on my right forearm) excised because that could be done without a hospital admisson. They went straight for a wide excision with a skin graft but they still did not get the required margins. I refused to let them have another go. At diagnosis, I had two tumours in lymph nodes in my right armpit (seen on CT, lit up like a Xmas tree on a PET). There is also a lump on my inner abdomen wall and some tiny lumps in my lungs but these did not light up in the PET scan so are not melanoma. So after the CT scan I was stage 4 and then, after the PET scan, I was 'downgraded' to stage 3C.

                                      If I had followed the standard path I would have had a complete lymph node dissection of the area. This could not be done without being admitted to hospital. Even if I had agreed to do it, there was only a 20% chance of the melanoma not coming back and a much higher chance of my right arm and hand being affected by lymphoedma, which would have meant more hospital visits and possible admissions to manage.

                                      It was a rollercoaster. When I was stage 4 I had a treatment plan I could live with (Ipi then anti-kinase drugs). As soon as I was back to stage 3c I could not have the Ipi because Ipi is not available for stage 3C melanoma.

                                      Throughout all this I was seeing a clinical psychologist. I was diagnosed sane (thank goodness) but with a 'morbid phobia'. The melanoma team decided that the melanoma was unresectable due to my phobia. Back to Ipi.

                                      Ipi suited me partocularly well because I only had to do the four treatments as there is no maintenance regime on the NHS in the UK. I would have chosen it over pembro/nivo because you have to keep going to the clinic for pembro/nivo treatments. As it was pembro/nivo was not available a year ago on the NHS. It is now.

                                      You have asked my opinion so here it is. Go live your life and do the watchful waiting. You are going to have to do that anyway, even if you do treatment. None of the treatments have a 100% response rate and you will still be going for regular scans.

                                      If it comes back (and, yes, it might) there might be something  far better on the table. Even if there isn't you will be able to monitor the success of the treatment by tumour shrinkage.

                                      I am not you. Think it through. Make sure you are happy with your decision. If you can't make the decision when the doctors want you to, ask if you can have more time.

                                       

                                      MoiraM
                                      Participant

                                        I would not do anything that might involve going on interferon.

                                        I did have the primary (on my right forearm) excised because that could be done without a hospital admisson. They went straight for a wide excision with a skin graft but they still did not get the required margins. I refused to let them have another go. At diagnosis, I had two tumours in lymph nodes in my right armpit (seen on CT, lit up like a Xmas tree on a PET). There is also a lump on my inner abdomen wall and some tiny lumps in my lungs but these did not light up in the PET scan so are not melanoma. So after the CT scan I was stage 4 and then, after the PET scan, I was 'downgraded' to stage 3C.

                                        If I had followed the standard path I would have had a complete lymph node dissection of the area. This could not be done without being admitted to hospital. Even if I had agreed to do it, there was only a 20% chance of the melanoma not coming back and a much higher chance of my right arm and hand being affected by lymphoedma, which would have meant more hospital visits and possible admissions to manage.

                                        It was a rollercoaster. When I was stage 4 I had a treatment plan I could live with (Ipi then anti-kinase drugs). As soon as I was back to stage 3c I could not have the Ipi because Ipi is not available for stage 3C melanoma.

                                        Throughout all this I was seeing a clinical psychologist. I was diagnosed sane (thank goodness) but with a 'morbid phobia'. The melanoma team decided that the melanoma was unresectable due to my phobia. Back to Ipi.

                                        Ipi suited me partocularly well because I only had to do the four treatments as there is no maintenance regime on the NHS in the UK. I would have chosen it over pembro/nivo because you have to keep going to the clinic for pembro/nivo treatments. As it was pembro/nivo was not available a year ago on the NHS. It is now.

                                        You have asked my opinion so here it is. Go live your life and do the watchful waiting. You are going to have to do that anyway, even if you do treatment. None of the treatments have a 100% response rate and you will still be going for regular scans.

                                        If it comes back (and, yes, it might) there might be something  far better on the table. Even if there isn't you will be able to monitor the success of the treatment by tumour shrinkage.

                                        I am not you. Think it through. Make sure you are happy with your decision. If you can't make the decision when the doctors want you to, ask if you can have more time.

                                         

                                        Mark_DC
                                        Participant

                                          Dear Moira, thanks for writing. Am British too (but living in the US!)

                                          Which option would you recommend though? I also dont think there is a cure but kind of a struggle which we have to live through. How should I do your (a) (b) and (c)? Go for the pembro vs interferon trial (but you dont like interferon), try to arrange for pembro vs placebo trial (not offered in DC), or like you go for ipi. Or do nothing (watch and wait)?

                                          How much surgery would you have needed? I have had two excisions on my lower left leg, the first two years ago was OK, the second recently was a larger excision with skin graft so knocked me out a little — leg in a splint for one week plus, didnt want to damage the wound since last time it did not heal so great so was lying down for a week overdoing it, after two weeks was able to walk without crutches. I dont like hospitals but have found the doctors and hospitals in DC really caring. Wish could help you with this.

                                          I have no idea how to decide and meet my doctors wednesday! But appreciate your help and others who post on this Board, has helped me lots the last four plus weeks.

                                          good luck Mark

                                           

                                        MoiraM
                                        Participant

                                          Putting the side effects of Ipi into context

                                          I am Stage 3C. I am too phobic of hospitals and doctors for surgery. I was therefore offered Ipi and took it.

                                          I know Ipi can have bad side effects but I do think that the side-effects are much better managed by clinic teams now that Ipi is part of everyday treatment. I think that the 1% death figure that you mention is probably based on out-of-date figures. Most clinical teams would take patients off Ipi if they showed the signs of severe negative effects.

                                          In the UK, the standard dosage of Ipi is 3mg/kg. Patients have four infusions at 3 week intervals. There are no maintenance doses.

                                          I am considered to have had bad side effects. My pituitary gland no longer works and I need thyroxine and cortisol hormone replacement in the form of daily pills. However I was never admitted to hospital and I only missed a few days of work.

                                          Your situation

                                          1. You have no evidence of disease at the moment. You have no way of knowing if any therapy is working! You would still have to 'watch and wait'.

                                          2. I am intrigued by your doctor's comment about imuunotherapies maybe requiring solid tumours to induce the desired effect in the body. One of my doctors commented that the positive effects of Ipi were better if the 'tumour burden is low'. Maybe there is a 'Goldilocks zone' for Ipi!

                                          3. Ipi response rates are low. Historically 15%. Could be slightly higher now that more data is available.

                                          4. I would not touch interferon with a bargepole. I want a decent quality of life while I am living with this disease.

                                          5. With therapies moving on so fast, maybe, as you say, there would be something better in the future.

                                          My attitude

                                          I understand your desire for 'a cure'. Personally, I find the notion of a cure counterproductive. I think of melanoma like a war going on in my body. The good guys are my immune system. The bad guys are the melanoma cells. I only do things that have a good chance of (a) knocking off bad guys, (b) keeping the good guys in good shape and (c) not causing too much collateral damage. I also always consider my quality of life. Good time now is more valuble than good time later that may never arrive.

                                          MoiraM
                                          Participant

                                            Putting the side effects of Ipi into context

                                            I am Stage 3C. I am too phobic of hospitals and doctors for surgery. I was therefore offered Ipi and took it.

                                            I know Ipi can have bad side effects but I do think that the side-effects are much better managed by clinic teams now that Ipi is part of everyday treatment. I think that the 1% death figure that you mention is probably based on out-of-date figures. Most clinical teams would take patients off Ipi if they showed the signs of severe negative effects.

                                            In the UK, the standard dosage of Ipi is 3mg/kg. Patients have four infusions at 3 week intervals. There are no maintenance doses.

                                            I am considered to have had bad side effects. My pituitary gland no longer works and I need thyroxine and cortisol hormone replacement in the form of daily pills. However I was never admitted to hospital and I only missed a few days of work.

                                            Your situation

                                            1. You have no evidence of disease at the moment. You have no way of knowing if any therapy is working! You would still have to 'watch and wait'.

                                            2. I am intrigued by your doctor's comment about imuunotherapies maybe requiring solid tumours to induce the desired effect in the body. One of my doctors commented that the positive effects of Ipi were better if the 'tumour burden is low'. Maybe there is a 'Goldilocks zone' for Ipi!

                                            3. Ipi response rates are low. Historically 15%. Could be slightly higher now that more data is available.

                                            4. I would not touch interferon with a bargepole. I want a decent quality of life while I am living with this disease.

                                            5. With therapies moving on so fast, maybe, as you say, there would be something better in the future.

                                            My attitude

                                            I understand your desire for 'a cure'. Personally, I find the notion of a cure counterproductive. I think of melanoma like a war going on in my body. The good guys are my immune system. The bad guys are the melanoma cells. I only do things that have a good chance of (a) knocking off bad guys, (b) keeping the good guys in good shape and (c) not causing too much collateral damage. I also always consider my quality of life. Good time now is more valuble than good time later that may never arrive.

                                            JohnA
                                            Participant

                                              Mark – sorry to hear of this struggle, I know it's a tough spot to be in.

                                              I've read the other very thoughtful responses and the only thing I have to add it is the experience my wife has had over the past 15 months.

                                              She's diagnosed with mucosal melanoma, which behaves differently and recurs at different rates than cutaneous, so please take that into account when reading my comments.

                                              She's 47 and we have a 1st grader, and knowing the recurrence rates and OS (5-yr estimates are mostly around 20%, but that was before immunotherapy) – so she wanted to 'be agressive' and did an adjuvant therapy that involved chemo (cisplatin and temodar).  It was very hard on her and took 6-months to feel normal again afterward.  There was not an adjuvant option for ipi to us when we were deciding.

                                              There was 1 study to support use of chemo(a phase ii clinical trial). At this point, now that he cancer has distant recurrence, she feels like the chemo probably did little or nothing (of course, who knows, maybe it bought her 12 months?) But now she's feeling run down and not really wanting to do the Ipi-Nivo combo, but that's the one that has data to support it's efficacy!

                                              So, bottom line is I guess I'd wonder what data there are to support use of Ipi as adjuvant therapy. If none, then I might want until it is warranted to use it as it's currently approved.

                                              Of course, we made a different decision, and that one might have paid off in other circumstances, you just never know. We asked 6 docs and 2 said don't do the chemo (wait and use Ipi-Nivo if it recurs), 2 said do it (why not, it might give you a few % better chance), and 2 said they could be convinced either way – we even convinced one of them during our visit by siting data.  

                                              The point is that when there's a lack of data, you can't make a 'right' or 'wrong' decision, there are often very good reasons to do either, and in our case at least, it was my wife's decision in the end since no one else to take the therapy for her.

                                              I know you'll come to some clarity around this and find the right answer for you. Good luck-

                                                jennunicorn
                                                Participant

                                                  Just to clarify a bit, Ipi was FDA approved in Oct 2015 for stage 3s in the adjuvant setting at 10mg/kg dosing, so it was in trial for a long time and showed enough data to say that it is worth doing. 

                                                  Hope everything goes well with your wife, all of these decisions are very tough.

                                                  All the best,

                                                  jennunicorn
                                                  Participant

                                                    Just to clarify a bit, Ipi was FDA approved in Oct 2015 for stage 3s in the adjuvant setting at 10mg/kg dosing, so it was in trial for a long time and showed enough data to say that it is worth doing. 

                                                    Hope everything goes well with your wife, all of these decisions are very tough.

                                                    All the best,

                                                    jennunicorn
                                                    Participant

                                                      Just to clarify a bit, Ipi was FDA approved in Oct 2015 for stage 3s in the adjuvant setting at 10mg/kg dosing, so it was in trial for a long time and showed enough data to say that it is worth doing. 

                                                      Hope everything goes well with your wife, all of these decisions are very tough.

                                                      All the best,

                                                      JohnA
                                                      Participant

                                                        Great – thanks for clarifying!

                                                        JohnA
                                                        Participant

                                                          Great – thanks for clarifying!

                                                          JohnA
                                                          Participant

                                                            Great – thanks for clarifying!

                                                            Mark_DC
                                                            Participant

                                                              Dear JohnA, thanks for writing. Am sorry for your wife and your family too.

                                                              I have a 12th grader smiley – my goal when first diagnosed two years ago was to get her through calculus and for her to understand it. So I achieved that! πŸ™‚ Have also started to volunteer to teach kids math, this disease has made me a little more focussed on life.

                                                              I think you are unfortunately correct in that there is no right or wrong decision. As Jenn mentions though, ipi has been approved so has benefits (the second opinion scared me on the side effects) and I guess pembro vs placebo would likely only be positive. Its the pembro vs interferon which is available to me and which kind of scares me. Or is everyone too negative about interferon?

                                                              I hope your wife will have the strength to go for ipi-nivo. From reading this board my understanding is that shows the best signs of working (is this combination therapy, celeste would clarify), this or some trial with combination therapy. She tried her best by going for the chemo, OK that seems not to have worked (but could have bought time) but she tried, now I hope she will try again and that the ipi-nivo will work. I know if i go to stage IV then i will have to try ipi-nivo or combination therapy.

                                                              in the meantime, if you want to decide for me, do please write!

                                                              thank you and good luck Mark

                                                              Mark_DC
                                                              Participant

                                                                Dear JohnA, thanks for writing. Am sorry for your wife and your family too.

                                                                I have a 12th grader smiley – my goal when first diagnosed two years ago was to get her through calculus and for her to understand it. So I achieved that! πŸ™‚ Have also started to volunteer to teach kids math, this disease has made me a little more focussed on life.

                                                                I think you are unfortunately correct in that there is no right or wrong decision. As Jenn mentions though, ipi has been approved so has benefits (the second opinion scared me on the side effects) and I guess pembro vs placebo would likely only be positive. Its the pembro vs interferon which is available to me and which kind of scares me. Or is everyone too negative about interferon?

                                                                I hope your wife will have the strength to go for ipi-nivo. From reading this board my understanding is that shows the best signs of working (is this combination therapy, celeste would clarify), this or some trial with combination therapy. She tried her best by going for the chemo, OK that seems not to have worked (but could have bought time) but she tried, now I hope she will try again and that the ipi-nivo will work. I know if i go to stage IV then i will have to try ipi-nivo or combination therapy.

                                                                in the meantime, if you want to decide for me, do please write!

                                                                thank you and good luck Mark

                                                                Mark_DC
                                                                Participant

                                                                  Dear JohnA, thanks for writing. Am sorry for your wife and your family too.

                                                                  I have a 12th grader smiley – my goal when first diagnosed two years ago was to get her through calculus and for her to understand it. So I achieved that! πŸ™‚ Have also started to volunteer to teach kids math, this disease has made me a little more focussed on life.

                                                                  I think you are unfortunately correct in that there is no right or wrong decision. As Jenn mentions though, ipi has been approved so has benefits (the second opinion scared me on the side effects) and I guess pembro vs placebo would likely only be positive. Its the pembro vs interferon which is available to me and which kind of scares me. Or is everyone too negative about interferon?

                                                                  I hope your wife will have the strength to go for ipi-nivo. From reading this board my understanding is that shows the best signs of working (is this combination therapy, celeste would clarify), this or some trial with combination therapy. She tried her best by going for the chemo, OK that seems not to have worked (but could have bought time) but she tried, now I hope she will try again and that the ipi-nivo will work. I know if i go to stage IV then i will have to try ipi-nivo or combination therapy.

                                                                  in the meantime, if you want to decide for me, do please write!

                                                                  thank you and good luck Mark

                                                                  JohnA
                                                                  Participant

                                                                    Thanks Mark.  

                                                                    I could be wrong, since all of our research has focused on Mucosal, not cutaneous. However, I thought people were now pretty convinced that interferon does not impact overall survival?  Maybe it does better in cutaneous melanoma?

                                                                    This, as I understand is one reason why people are saying the immunotherapy drugs are the best thing to happen in years for metastatic melanoma – they are showing improved OS and PFS.

                                                                    Unless I'm wrong about this – and someone please correct me if I'm wrong – that would point me away from interferon if I were you.

                                                                    In our cancer tour to Dana Farber, Sloan Kettering, Cleveland Clinic, University of MI, and Md Anderson, we were sayign we wanted to be aggressive with treatment but one of the doctors said "Aggressive toward what? Being aggressive doesn't help if it's not directed toward the cancer." I'm paraphrasing, but you get the point.

                                                                    Good luck and thanks again for the advice and well-wishes, thanks to this group I'm still learning!

                                                                    Janner
                                                                    Participant

                                                                      Just for clarification, Interferon is not chemo but is also an immunotherapy drug.  It just doesn't have the same targets like the newer drugs.

                                                                      Janner
                                                                      Participant

                                                                        Just for clarification, Interferon is not chemo but is also an immunotherapy drug.  It just doesn't have the same targets like the newer drugs.

                                                                        Janner
                                                                        Participant

                                                                          Just for clarification, Interferon is not chemo but is also an immunotherapy drug.  It just doesn't have the same targets like the newer drugs.

                                                                          JohnA
                                                                          Participant

                                                                            Thanks Mark.  

                                                                            I could be wrong, since all of our research has focused on Mucosal, not cutaneous. However, I thought people were now pretty convinced that interferon does not impact overall survival?  Maybe it does better in cutaneous melanoma?

                                                                            This, as I understand is one reason why people are saying the immunotherapy drugs are the best thing to happen in years for metastatic melanoma – they are showing improved OS and PFS.

                                                                            Unless I'm wrong about this – and someone please correct me if I'm wrong – that would point me away from interferon if I were you.

                                                                            In our cancer tour to Dana Farber, Sloan Kettering, Cleveland Clinic, University of MI, and Md Anderson, we were sayign we wanted to be aggressive with treatment but one of the doctors said "Aggressive toward what? Being aggressive doesn't help if it's not directed toward the cancer." I'm paraphrasing, but you get the point.

                                                                            Good luck and thanks again for the advice and well-wishes, thanks to this group I'm still learning!

                                                                            JohnA
                                                                            Participant

                                                                              Thanks Mark.  

                                                                              I could be wrong, since all of our research has focused on Mucosal, not cutaneous. However, I thought people were now pretty convinced that interferon does not impact overall survival?  Maybe it does better in cutaneous melanoma?

                                                                              This, as I understand is one reason why people are saying the immunotherapy drugs are the best thing to happen in years for metastatic melanoma – they are showing improved OS and PFS.

                                                                              Unless I'm wrong about this – and someone please correct me if I'm wrong – that would point me away from interferon if I were you.

                                                                              In our cancer tour to Dana Farber, Sloan Kettering, Cleveland Clinic, University of MI, and Md Anderson, we were sayign we wanted to be aggressive with treatment but one of the doctors said "Aggressive toward what? Being aggressive doesn't help if it's not directed toward the cancer." I'm paraphrasing, but you get the point.

                                                                              Good luck and thanks again for the advice and well-wishes, thanks to this group I'm still learning!

                                                                            JohnA
                                                                            Participant

                                                                              Mark – sorry to hear of this struggle, I know it's a tough spot to be in.

                                                                              I've read the other very thoughtful responses and the only thing I have to add it is the experience my wife has had over the past 15 months.

                                                                              She's diagnosed with mucosal melanoma, which behaves differently and recurs at different rates than cutaneous, so please take that into account when reading my comments.

                                                                              She's 47 and we have a 1st grader, and knowing the recurrence rates and OS (5-yr estimates are mostly around 20%, but that was before immunotherapy) – so she wanted to 'be agressive' and did an adjuvant therapy that involved chemo (cisplatin and temodar).  It was very hard on her and took 6-months to feel normal again afterward.  There was not an adjuvant option for ipi to us when we were deciding.

                                                                              There was 1 study to support use of chemo(a phase ii clinical trial). At this point, now that he cancer has distant recurrence, she feels like the chemo probably did little or nothing (of course, who knows, maybe it bought her 12 months?) But now she's feeling run down and not really wanting to do the Ipi-Nivo combo, but that's the one that has data to support it's efficacy!

                                                                              So, bottom line is I guess I'd wonder what data there are to support use of Ipi as adjuvant therapy. If none, then I might want until it is warranted to use it as it's currently approved.

                                                                              Of course, we made a different decision, and that one might have paid off in other circumstances, you just never know. We asked 6 docs and 2 said don't do the chemo (wait and use Ipi-Nivo if it recurs), 2 said do it (why not, it might give you a few % better chance), and 2 said they could be convinced either way – we even convinced one of them during our visit by siting data.  

                                                                              The point is that when there's a lack of data, you can't make a 'right' or 'wrong' decision, there are often very good reasons to do either, and in our case at least, it was my wife's decision in the end since no one else to take the therapy for her.

                                                                              I know you'll come to some clarity around this and find the right answer for you. Good luck-

                                                                              JohnA
                                                                              Participant

                                                                                Mark – sorry to hear of this struggle, I know it's a tough spot to be in.

                                                                                I've read the other very thoughtful responses and the only thing I have to add it is the experience my wife has had over the past 15 months.

                                                                                She's diagnosed with mucosal melanoma, which behaves differently and recurs at different rates than cutaneous, so please take that into account when reading my comments.

                                                                                She's 47 and we have a 1st grader, and knowing the recurrence rates and OS (5-yr estimates are mostly around 20%, but that was before immunotherapy) – so she wanted to 'be agressive' and did an adjuvant therapy that involved chemo (cisplatin and temodar).  It was very hard on her and took 6-months to feel normal again afterward.  There was not an adjuvant option for ipi to us when we were deciding.

                                                                                There was 1 study to support use of chemo(a phase ii clinical trial). At this point, now that he cancer has distant recurrence, she feels like the chemo probably did little or nothing (of course, who knows, maybe it bought her 12 months?) But now she's feeling run down and not really wanting to do the Ipi-Nivo combo, but that's the one that has data to support it's efficacy!

                                                                                So, bottom line is I guess I'd wonder what data there are to support use of Ipi as adjuvant therapy. If none, then I might want until it is warranted to use it as it's currently approved.

                                                                                Of course, we made a different decision, and that one might have paid off in other circumstances, you just never know. We asked 6 docs and 2 said don't do the chemo (wait and use Ipi-Nivo if it recurs), 2 said do it (why not, it might give you a few % better chance), and 2 said they could be convinced either way – we even convinced one of them during our visit by siting data.  

                                                                                The point is that when there's a lack of data, you can't make a 'right' or 'wrong' decision, there are often very good reasons to do either, and in our case at least, it was my wife's decision in the end since no one else to take the therapy for her.

                                                                                I know you'll come to some clarity around this and find the right answer for you. Good luck-

                                                                                vickiaa0529
                                                                                Participant

                                                                                  Hi

                                                                                  I am almost in the same situation as you. I am home recovering from a lymph node dissection on my groin. Right now I am wondering if I am ever going to feel normal again. I had an inginual node test positive for melanoma after being on scans for about a year. The surgeon said everything looked fine but I am waiting for the pathology report. Yes I am a nervouse wreck. I am not sure what will be offered as the next treatment as my Pet/CT scan was clear. I am not looking forward to any of this.

                                                                                   

                                                                                  Thanks again to everyone posting its a lot of info to take in!

                                                                                   

                                                                                  vickiaa0529
                                                                                  Participant

                                                                                    Hi

                                                                                    I am almost in the same situation as you. I am home recovering from a lymph node dissection on my groin. Right now I am wondering if I am ever going to feel normal again. I had an inginual node test positive for melanoma after being on scans for about a year. The surgeon said everything looked fine but I am waiting for the pathology report. Yes I am a nervouse wreck. I am not sure what will be offered as the next treatment as my Pet/CT scan was clear. I am not looking forward to any of this.

                                                                                     

                                                                                    Thanks again to everyone posting its a lot of info to take in!

                                                                                     

                                                                                    vickiaa0529
                                                                                    Participant

                                                                                      Hi

                                                                                      I am almost in the same situation as you. I am home recovering from a lymph node dissection on my groin. Right now I am wondering if I am ever going to feel normal again. I had an inginual node test positive for melanoma after being on scans for about a year. The surgeon said everything looked fine but I am waiting for the pathology report. Yes I am a nervouse wreck. I am not sure what will be offered as the next treatment as my Pet/CT scan was clear. I am not looking forward to any of this.

                                                                                       

                                                                                      Thanks again to everyone posting its a lot of info to take in!

                                                                                       

                                                                                      Mamapegela
                                                                                      Participant

                                                                                        Thank you for all of the information.  Mark I appreciate your spelling things out so clearly, am wishing the best for you and will be following your posts.

                                                                                         My journey has just begun, I had a primary site on my neck in Nov 2015, noticed a swollen lymph node on my neck this March which was biopsied and is positive for melanoma.  I am getting MRI brain, CT neck, chest and abd in a few days then will be going to meet the team at the University of Michigan melanoma clinic.  I am trying to get educated before my visit.  I know that I am currently a stage lllB and hopefully will not be anything other than that after the scans and surgery.

                                                                                        I would love to hear from anyone that has gone to U of M, also anyone who has had the neck dissection.

                                                                                        Thanks for all of the support.  It makes a huge difference.

                                                                                        Peggy

                                                                                        Mamapegela
                                                                                        Participant

                                                                                          Thank you for all of the information.  Mark I appreciate your spelling things out so clearly, am wishing the best for you and will be following your posts.

                                                                                           My journey has just begun, I had a primary site on my neck in Nov 2015, noticed a swollen lymph node on my neck this March which was biopsied and is positive for melanoma.  I am getting MRI brain, CT neck, chest and abd in a few days then will be going to meet the team at the University of Michigan melanoma clinic.  I am trying to get educated before my visit.  I know that I am currently a stage lllB and hopefully will not be anything other than that after the scans and surgery.

                                                                                          I would love to hear from anyone that has gone to U of M, also anyone who has had the neck dissection.

                                                                                          Thanks for all of the support.  It makes a huge difference.

                                                                                          Peggy

                                                                                          Mamapegela
                                                                                          Participant

                                                                                            Thank you for all of the information.  Mark I appreciate your spelling things out so clearly, am wishing the best for you and will be following your posts.

                                                                                             My journey has just begun, I had a primary site on my neck in Nov 2015, noticed a swollen lymph node on my neck this March which was biopsied and is positive for melanoma.  I am getting MRI brain, CT neck, chest and abd in a few days then will be going to meet the team at the University of Michigan melanoma clinic.  I am trying to get educated before my visit.  I know that I am currently a stage lllB and hopefully will not be anything other than that after the scans and surgery.

                                                                                            I would love to hear from anyone that has gone to U of M, also anyone who has had the neck dissection.

                                                                                            Thanks for all of the support.  It makes a huge difference.

                                                                                            Peggy

                                                                                              Jillymar
                                                                                              Participant

                                                                                                Hi Peggy,

                                                                                                i am currently a patient at the University of Michigan Cancer Center. I had a neck dissection surgery there in October 2015. I'm currently undergoing immunotherapy infusions. I can answer any questions you have about U of M. 

                                                                                                Mamapegela
                                                                                                Participant

                                                                                                  Thank you so much for reaching out.  I go for my first visit at U of M next week.  I am assuming that I will have the neck dissection at some point as I now have more enlarged nodes on CT in my neck.  Concerning the surgery: How did that surgery go for you?  Who did yours?  How long did you have to be off work?

                                                                                                  Sorry to bombard you with questions!  I have so many.  Really everything is a question mark right now.

                                                                                                    I am also assuming that I will be offered immunotherapy.  Are you on Yervoy?  

                                                                                                  Any suggestions or information that you can offer would be so appreciated. 

                                                                                                  Thank you,

                                                                                                  Peggy

                                                                                                  Mamapegela
                                                                                                  Participant

                                                                                                    Thank you so much for reaching out.  I go for my first visit at U of M next week.  I am assuming that I will have the neck dissection at some point as I now have more enlarged nodes on CT in my neck.  Concerning the surgery: How did that surgery go for you?  Who did yours?  How long did you have to be off work?

                                                                                                    Sorry to bombard you with questions!  I have so many.  Really everything is a question mark right now.

                                                                                                      I am also assuming that I will be offered immunotherapy.  Are you on Yervoy?  

                                                                                                    Any suggestions or information that you can offer would be so appreciated. 

                                                                                                    Thank you,

                                                                                                    Peggy

                                                                                                    Mamapegela
                                                                                                    Participant

                                                                                                      Thank you so much for reaching out.  I go for my first visit at U of M next week.  I am assuming that I will have the neck dissection at some point as I now have more enlarged nodes on CT in my neck.  Concerning the surgery: How did that surgery go for you?  Who did yours?  How long did you have to be off work?

                                                                                                      Sorry to bombard you with questions!  I have so many.  Really everything is a question mark right now.

                                                                                                        I am also assuming that I will be offered immunotherapy.  Are you on Yervoy?  

                                                                                                      Any suggestions or information that you can offer would be so appreciated. 

                                                                                                      Thank you,

                                                                                                      Peggy

                                                                                                      Jillymar
                                                                                                      Participant

                                                                                                        Hi Peggy,

                                                                                                        i am currently a patient at the University of Michigan Cancer Center. I had a neck dissection surgery there in October 2015. I'm currently undergoing immunotherapy infusions. I can answer any questions you have about U of M. 

                                                                                                        Jillymar
                                                                                                        Participant

                                                                                                          Hi Peggy,

                                                                                                          i am currently a patient at the University of Michigan Cancer Center. I had a neck dissection surgery there in October 2015. I'm currently undergoing immunotherapy infusions. I can answer any questions you have about U of M. 

                                                                                                        Polymath
                                                                                                        Participant

                                                                                                          Hi Mark,

                                                                                                          Sorry you have joined our club.  You have had many detailed and thoughtful answers to your question of which treatment option to go for at this stage.  My answer is simple.  Try the ipi therapy and don't worry about the side-effects.  Cross that bridge when you get there, and you may not need to.  Everyone responds differently and the assumption of adverse effects does no good.  The mind is a powerful thing.  Its the reason they have a placebo group in many trials. Compared to the options you are considering, I'll join others here in thinking Yervoy is the obvious choice.  Best to you in whatever your personal decision is.

                                                                                                          Gary

                                                                                                          Polymath
                                                                                                          Participant

                                                                                                            Hi Mark,

                                                                                                            Sorry you have joined our club.  You have had many detailed and thoughtful answers to your question of which treatment option to go for at this stage.  My answer is simple.  Try the ipi therapy and don't worry about the side-effects.  Cross that bridge when you get there, and you may not need to.  Everyone responds differently and the assumption of adverse effects does no good.  The mind is a powerful thing.  Its the reason they have a placebo group in many trials. Compared to the options you are considering, I'll join others here in thinking Yervoy is the obvious choice.  Best to you in whatever your personal decision is.

                                                                                                            Gary

                                                                                                            Polymath
                                                                                                            Participant

                                                                                                              Hi Mark,

                                                                                                              Sorry you have joined our club.  You have had many detailed and thoughtful answers to your question of which treatment option to go for at this stage.  My answer is simple.  Try the ipi therapy and don't worry about the side-effects.  Cross that bridge when you get there, and you may not need to.  Everyone responds differently and the assumption of adverse effects does no good.  The mind is a powerful thing.  Its the reason they have a placebo group in many trials. Compared to the options you are considering, I'll join others here in thinking Yervoy is the obvious choice.  Best to you in whatever your personal decision is.

                                                                                                              Gary

                                                                                                              keepthefaith11
                                                                                                              Participant
                                                                                                                My dad was diagnosed with Stage 3C back in December. He chose to go with the Yervoy. After two infusions he had a spiking fever of 104 then his liver enzymes went up by 10 times normal range. This was a severe reaction. They put him on steroids and within a week the enzymes were back to normal. Not a big deal at all. Even with enzymes that high he did not feel unwell at all. Actually he felt great once the fever went down. So even with severe side effects they are so good at controlling it now and knowing what to do, that there is actually probably little worry. He had to discontinue treatment which was unfortunate, but we feel at least he got 2 infusions. Better than nothing if he is a responder. If he could do it all over again, he would not change a thing.

                                                                                                                Just wanted to let you know about someone who had some serious side effects but still managed them really well. Best of luck to you!

                                                                                                                Annie

                                                                                                                keepthefaith11
                                                                                                                Participant
                                                                                                                  My dad was diagnosed with Stage 3C back in December. He chose to go with the Yervoy. After two infusions he had a spiking fever of 104 then his liver enzymes went up by 10 times normal range. This was a severe reaction. They put him on steroids and within a week the enzymes were back to normal. Not a big deal at all. Even with enzymes that high he did not feel unwell at all. Actually he felt great once the fever went down. So even with severe side effects they are so good at controlling it now and knowing what to do, that there is actually probably little worry. He had to discontinue treatment which was unfortunate, but we feel at least he got 2 infusions. Better than nothing if he is a responder. If he could do it all over again, he would not change a thing.

                                                                                                                  Just wanted to let you know about someone who had some serious side effects but still managed them really well. Best of luck to you!

                                                                                                                  Annie

                                                                                                                  keepthefaith11
                                                                                                                  Participant
                                                                                                                    My dad was diagnosed with Stage 3C back in December. He chose to go with the Yervoy. After two infusions he had a spiking fever of 104 then his liver enzymes went up by 10 times normal range. This was a severe reaction. They put him on steroids and within a week the enzymes were back to normal. Not a big deal at all. Even with enzymes that high he did not feel unwell at all. Actually he felt great once the fever went down. So even with severe side effects they are so good at controlling it now and knowing what to do, that there is actually probably little worry. He had to discontinue treatment which was unfortunate, but we feel at least he got 2 infusions. Better than nothing if he is a responder. If he could do it all over again, he would not change a thing.

                                                                                                                    Just wanted to let you know about someone who had some serious side effects but still managed them really well. Best of luck to you!

                                                                                                                    Annie

                                                                                                                    Cynthia C
                                                                                                                    Participant

                                                                                                                      Hello Mark!

                                                                                                                      I am 3b (T3bN2aM0), diagnosed at age 46 in 2000, primary on right lower leg, 2 positive lymph nodes in my right groin. All my groin lymph nodes were removed at the same time of the wide excision on my lower leg. I never did any scans at that time, just CXR and labs. The only treatment offered was interferon, I managed to do 8 doses and called it quits. So I guess I am in the wait and watch group. So fast forward 15 years. I still worry, but I don't let it affect my life. I do still see an oncologist about once a year. I did get a PET scan about 6 years ago just to ease my mind, it was completely negative. My post today is just to let you know that stage 3 does not necessarily progress to stage 4. I am sending positive thoughts to you and your family.

                                                                                                                      Cynthia

                                                                                                                      Cynthia C
                                                                                                                      Participant

                                                                                                                        Hello Mark!

                                                                                                                        I am 3b (T3bN2aM0), diagnosed at age 46 in 2000, primary on right lower leg, 2 positive lymph nodes in my right groin. All my groin lymph nodes were removed at the same time of the wide excision on my lower leg. I never did any scans at that time, just CXR and labs. The only treatment offered was interferon, I managed to do 8 doses and called it quits. So I guess I am in the wait and watch group. So fast forward 15 years. I still worry, but I don't let it affect my life. I do still see an oncologist about once a year. I did get a PET scan about 6 years ago just to ease my mind, it was completely negative. My post today is just to let you know that stage 3 does not necessarily progress to stage 4. I am sending positive thoughts to you and your family.

                                                                                                                        Cynthia

                                                                                                                        Cynthia C
                                                                                                                        Participant

                                                                                                                          Hello Mark!

                                                                                                                          I am 3b (T3bN2aM0), diagnosed at age 46 in 2000, primary on right lower leg, 2 positive lymph nodes in my right groin. All my groin lymph nodes were removed at the same time of the wide excision on my lower leg. I never did any scans at that time, just CXR and labs. The only treatment offered was interferon, I managed to do 8 doses and called it quits. So I guess I am in the wait and watch group. So fast forward 15 years. I still worry, but I don't let it affect my life. I do still see an oncologist about once a year. I did get a PET scan about 6 years ago just to ease my mind, it was completely negative. My post today is just to let you know that stage 3 does not necessarily progress to stage 4. I am sending positive thoughts to you and your family.

                                                                                                                          Cynthia

                                                                                                                          WithinMySkin
                                                                                                                          Participant
                                                                                                                            Hello Mark! Welcome! Everyone here is fantastic, and it seems as though you’ve already done a ton of research. I’ve been pondering on your situation, as I’m IIIC, but on a different path. Even though I’m only stage III, I’ll be starting the Ipi/nivo treatment the end of this week. I have had multiple in-transits, and one presently growing, so my doctor is allowing me to go to the next stage treatment.

                                                                                                                            I have also tried interferon and it’s NOT easy. I got through 7 treatments before I had to start skipping doses due to my liver enzymes skyrocketing. Not to mention how crappy I felt. While on interferon, I had my most recent in-transit pop up…so in my mind, it didn’t do its job.

                                                                                                                            But your situation is a bit different. You haven’t had anything positive from your SLN biopsies, which is great news! I know you want to treat this beast, but with nothing in your SLN, I’d err on the side of caution. A SLNB isn’t foolproof, but you’ve had 2 now with both being negative. Again, a very good sign that it hasn’t traveled too far.

                                                                                                                            You keep mentioning your job, which you seem to love. Treatment via trial will definitely keep you from traveling for work. And trials are a TON of time and energy and money. The trial you mention that involves a placebo – why take off work to watch and wait? You can do that while doing what you love. So I’d say don’t do that trial. The one close by, youll KNOW if youre in the interferon segment. It may, if anything, delay a recurrence. But again, you won’t be able to work.

                                                                                                                            So then the question is will you be able to sleep at night if you DON’T do anything? What’s your level of anxiety about watching and waiting? I think that’s the big question. You may be able to work while on Ipi (not sure on this one) and do what you love while getting treatment. If you cant sleep at night knowing you’re not getting treatment, then definitely do the Ipi. Any side effects are minimal compared to peace of mind. On the other hand, if you’re ok with watching, then wait. I know it seems like a cop-out to wait, but treatments are changing and getting better constantly.

                                                                                                                            None of these decisions are easy to make, but nothing you choose is right or wrong. So you absolutely have to chose what’s right for YOU. The best piece of advice I’ve gotten is to believe in your medicine, whatever that may be. So chose what you can stand behind. I swear, most days cancer is more a mental battle than a physical one.

                                                                                                                            Keep us updated and the best of luck to you!!
                                                                                                                            Lauren

                                                                                                                            WithinMySkin
                                                                                                                            Participant
                                                                                                                              Hello Mark! Welcome! Everyone here is fantastic, and it seems as though you’ve already done a ton of research. I’ve been pondering on your situation, as I’m IIIC, but on a different path. Even though I’m only stage III, I’ll be starting the Ipi/nivo treatment the end of this week. I have had multiple in-transits, and one presently growing, so my doctor is allowing me to go to the next stage treatment.

                                                                                                                              I have also tried interferon and it’s NOT easy. I got through 7 treatments before I had to start skipping doses due to my liver enzymes skyrocketing. Not to mention how crappy I felt. While on interferon, I had my most recent in-transit pop up…so in my mind, it didn’t do its job.

                                                                                                                              But your situation is a bit different. You haven’t had anything positive from your SLN biopsies, which is great news! I know you want to treat this beast, but with nothing in your SLN, I’d err on the side of caution. A SLNB isn’t foolproof, but you’ve had 2 now with both being negative. Again, a very good sign that it hasn’t traveled too far.

                                                                                                                              You keep mentioning your job, which you seem to love. Treatment via trial will definitely keep you from traveling for work. And trials are a TON of time and energy and money. The trial you mention that involves a placebo – why take off work to watch and wait? You can do that while doing what you love. So I’d say don’t do that trial. The one close by, youll KNOW if youre in the interferon segment. It may, if anything, delay a recurrence. But again, you won’t be able to work.

                                                                                                                              So then the question is will you be able to sleep at night if you DON’T do anything? What’s your level of anxiety about watching and waiting? I think that’s the big question. You may be able to work while on Ipi (not sure on this one) and do what you love while getting treatment. If you cant sleep at night knowing you’re not getting treatment, then definitely do the Ipi. Any side effects are minimal compared to peace of mind. On the other hand, if you’re ok with watching, then wait. I know it seems like a cop-out to wait, but treatments are changing and getting better constantly.

                                                                                                                              None of these decisions are easy to make, but nothing you choose is right or wrong. So you absolutely have to chose what’s right for YOU. The best piece of advice I’ve gotten is to believe in your medicine, whatever that may be. So chose what you can stand behind. I swear, most days cancer is more a mental battle than a physical one.

                                                                                                                              Keep us updated and the best of luck to you!!
                                                                                                                              Lauren

                                                                                                                              WithinMySkin
                                                                                                                              Participant
                                                                                                                                Hello Mark! Welcome! Everyone here is fantastic, and it seems as though you’ve already done a ton of research. I’ve been pondering on your situation, as I’m IIIC, but on a different path. Even though I’m only stage III, I’ll be starting the Ipi/nivo treatment the end of this week. I have had multiple in-transits, and one presently growing, so my doctor is allowing me to go to the next stage treatment.

                                                                                                                                I have also tried interferon and it’s NOT easy. I got through 7 treatments before I had to start skipping doses due to my liver enzymes skyrocketing. Not to mention how crappy I felt. While on interferon, I had my most recent in-transit pop up…so in my mind, it didn’t do its job.

                                                                                                                                But your situation is a bit different. You haven’t had anything positive from your SLN biopsies, which is great news! I know you want to treat this beast, but with nothing in your SLN, I’d err on the side of caution. A SLNB isn’t foolproof, but you’ve had 2 now with both being negative. Again, a very good sign that it hasn’t traveled too far.

                                                                                                                                You keep mentioning your job, which you seem to love. Treatment via trial will definitely keep you from traveling for work. And trials are a TON of time and energy and money. The trial you mention that involves a placebo – why take off work to watch and wait? You can do that while doing what you love. So I’d say don’t do that trial. The one close by, youll KNOW if youre in the interferon segment. It may, if anything, delay a recurrence. But again, you won’t be able to work.

                                                                                                                                So then the question is will you be able to sleep at night if you DON’T do anything? What’s your level of anxiety about watching and waiting? I think that’s the big question. You may be able to work while on Ipi (not sure on this one) and do what you love while getting treatment. If you cant sleep at night knowing you’re not getting treatment, then definitely do the Ipi. Any side effects are minimal compared to peace of mind. On the other hand, if you’re ok with watching, then wait. I know it seems like a cop-out to wait, but treatments are changing and getting better constantly.

                                                                                                                                None of these decisions are easy to make, but nothing you choose is right or wrong. So you absolutely have to chose what’s right for YOU. The best piece of advice I’ve gotten is to believe in your medicine, whatever that may be. So chose what you can stand behind. I swear, most days cancer is more a mental battle than a physical one.

                                                                                                                                Keep us updated and the best of luck to you!!
                                                                                                                                Lauren

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