MRF-Logo2019-Horizontal-RGB
New here, looking for advice & support.
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

New here, looking for advice & support.

› Forums › Cutaneous Melanoma Community › New here, looking for advice & support.

  • Post
    • September 21, 2012 at 11:38 am
    swissfarm7
    Participant

      Hi, all!  Two months into my husband's journey with melanoma, I could use some contact with others on the same path.  This past summer was quite the roller coaster.  In June, we traveled with our five boys to Europe, spending most of our time in Hans's native Switzerland.  No sooner did we return home than Hans received a cancer diagnosis.  From the Swiss Alps one week to the Seattle Cancer Care Alliance the next ~ talk about a rough landing! 😉 

      Hi, all!  Two months into my husband's journey with melanoma, I could use some contact with others on the same path.  This past summer was quite the roller coaster.  In June, we traveled with our five boys to Europe, spending most of our time in Hans's native Switzerland.  No sooner did we return home than Hans received a cancer diagnosis.  From the Swiss Alps one week to the Seattle Cancer Care Alliance the next ~ talk about a rough landing! 😉 

      Hans had a wide local excision and sentinel lymph node biopsy in late July.  Melanoma was present in one of two nodes, and the following month he had a lymph node dissection.  He recovered well and none of the nodes showed further evidence of melanoma.  Hans isn't a details kinda guy while I'm a Type A researcher, preparing to write a doctoral thesis (or so it seems!) on a subject I never wanted to know about.  He took the results to mean he'd "beat" cancer.  If only!  Talking with the medical oncologist the other day brought him face to face with the reality that he's Stage IIIB (T4bN1aM0 to be specific). 

      So.  Now what?  The question anyone in this situation faces.  Hans of course has to follow a surveillance regimen, with regular dermatological visits and CT scans.  This is where my first question comes in.  I've read in several places that Stage III patients should have scans every 3-4 months for the first couple of years after diagnosis.  Our oncologist suggests every 6 months, staggered with the dermatology appointments, due to the exposure from frequent scans.  (Our surgical oncologist also mentioned that they're doing scans less often now.)  What's your thought on this, and what sort of management plan have you followed?

      The oncologist addressed adjuvant therapies, and naturally interferon was mentioned.  He presented the pros and cons and stressed that there's no right or wrong choice.  We're aware that the potential benefits aren't quantifiable, and that the treatment, while tolerated differently by different people, can have a profound effect on one's lifestyle.  We're really outdoor-oriented, athletic people; more significantly, we own and operate an organic dairy farm.  Needless to say, a year of suppressed activity would be challenging for Hans ~ and the rest of us.  His kneejerk reaction was, "No way!".  And I totally get that.  But as a guy in the prime of life (he's 45) with five children, the youngest of whom is 7 years old, something that potentially delays the progression of an aggressive, insidious disease may be better than nothing, kwim?  So, much as I worry, reading about the toxicity of interferon; much as I hate the thought of how it may affect him (and us); and much as I hate that we'll never know if it did any good anyway ~ I'm leaning toward it.  As for Hans, I think he just plain doesn't know what to do.  Really, how on earth does one make this decision?!

      There is a clinical trial comparing interferon to ipi that Hans may be eligible for ~ although he wouldn't know going in, of course, which drug he'd receive.  While some aspects of the trial would be free, others would not, and our insurance won't cover research trials.  As it is, our insurer has actually denied coverage for all the treatment Hans has received thus far.  A long and ridiculous story, but suffice it to say I'm in an ongoing effort to appeal their decision.   Only mentioning it in the context of the trial and our need to consider financial aspects. 

      Good grief, this become quite the novel.  Thanks to those who have read this far, and to anyone who can offer words of encouragement or advice.  I'm so weary of hearing well-meaning but uninformed people exclaim, "At least it's only skin cancer!".  Sigh.

      Cheers,

      Colleen

    Viewing 11 reply threads
    • Replies
        • September 21, 2012 at 4:14 pm
        washoegal
        Participant

          Colleen,

          Sorry you are here.  Glad at least you enjoyed a wonderful vacation before you got hit with the bomb. 

          You are in the spot most of us have been.  It's such a personal decision as to where to go now, I hate to weigh in too strongly.  I can only tell you my experiences and my reasoning.  I am stage 3a.

          First off you questioning about scanning.  The first Onc I went to did it every 6 months, he moved across country, the second Onc scanned every 3 months.  So there you go, both facilities are considered top notch Melanoma centers.

          As far as whether or not to do adjunctive therapy, here was my reasoning.  I was told Interferon only helped in 3-7% of the cases.  But it did not extend the survival time.  HUH?  At the time I was diagnosed there was only the year long version offered, I could not see giving up 1 good year for those odds.  They were not doing the peglated version at that time.  So it was the old watch and wait …. not as bad as it sounds.  Ipi is not a walk in the park.  If you do a search here you can read some of the reactions people have had.  Once you get your insurance on board they should pay for any usual test even if you are in a trial.

          I am now 2.5 years cancer free.  As you read here, that doesn't mean I am out of the woods yet (I suppose you never are), but I certainly have every reason the believe that I will remain cancer free.

          Good Luck,

          Mary

            • September 21, 2012 at 6:42 pm
            swissfarm7
            Participant

              Thank you, Mary, for your reply; I appreciate your input.  Glad to hear things are looking good for you on the cancer (or anti-cancer, more accurately!) front. 

              Cheers,

              Colleen

              (Btw, all, my apologies for the duplicate of my original post!)

              • September 21, 2012 at 6:42 pm
              swissfarm7
              Participant

                Thank you, Mary, for your reply; I appreciate your input.  Glad to hear things are looking good for you on the cancer (or anti-cancer, more accurately!) front. 

                Cheers,

                Colleen

                (Btw, all, my apologies for the duplicate of my original post!)

                • September 21, 2012 at 6:42 pm
                swissfarm7
                Participant

                  Thank you, Mary, for your reply; I appreciate your input.  Glad to hear things are looking good for you on the cancer (or anti-cancer, more accurately!) front. 

                  Cheers,

                  Colleen

                  (Btw, all, my apologies for the duplicate of my original post!)

                • September 21, 2012 at 4:14 pm
                washoegal
                Participant

                  Colleen,

                  Sorry you are here.  Glad at least you enjoyed a wonderful vacation before you got hit with the bomb. 

                  You are in the spot most of us have been.  It's such a personal decision as to where to go now, I hate to weigh in too strongly.  I can only tell you my experiences and my reasoning.  I am stage 3a.

                  First off you questioning about scanning.  The first Onc I went to did it every 6 months, he moved across country, the second Onc scanned every 3 months.  So there you go, both facilities are considered top notch Melanoma centers.

                  As far as whether or not to do adjunctive therapy, here was my reasoning.  I was told Interferon only helped in 3-7% of the cases.  But it did not extend the survival time.  HUH?  At the time I was diagnosed there was only the year long version offered, I could not see giving up 1 good year for those odds.  They were not doing the peglated version at that time.  So it was the old watch and wait …. not as bad as it sounds.  Ipi is not a walk in the park.  If you do a search here you can read some of the reactions people have had.  Once you get your insurance on board they should pay for any usual test even if you are in a trial.

                  I am now 2.5 years cancer free.  As you read here, that doesn't mean I am out of the woods yet (I suppose you never are), but I certainly have every reason the believe that I will remain cancer free.

                  Good Luck,

                  Mary

                  • September 21, 2012 at 4:14 pm
                  washoegal
                  Participant

                    Colleen,

                    Sorry you are here.  Glad at least you enjoyed a wonderful vacation before you got hit with the bomb. 

                    You are in the spot most of us have been.  It's such a personal decision as to where to go now, I hate to weigh in too strongly.  I can only tell you my experiences and my reasoning.  I am stage 3a.

                    First off you questioning about scanning.  The first Onc I went to did it every 6 months, he moved across country, the second Onc scanned every 3 months.  So there you go, both facilities are considered top notch Melanoma centers.

                    As far as whether or not to do adjunctive therapy, here was my reasoning.  I was told Interferon only helped in 3-7% of the cases.  But it did not extend the survival time.  HUH?  At the time I was diagnosed there was only the year long version offered, I could not see giving up 1 good year for those odds.  They were not doing the peglated version at that time.  So it was the old watch and wait …. not as bad as it sounds.  Ipi is not a walk in the park.  If you do a search here you can read some of the reactions people have had.  Once you get your insurance on board they should pay for any usual test even if you are in a trial.

                    I am now 2.5 years cancer free.  As you read here, that doesn't mean I am out of the woods yet (I suppose you never are), but I certainly have every reason the believe that I will remain cancer free.

                    Good Luck,

                    Mary

                    • September 21, 2012 at 4:18 pm
                    washoegal
                    Participant

                      Colleen,

                      Sorry you are here.  Glad at least you enjoyed a wonderful vacation before you got hit with the bomb. 

                      You are in the spot most of us have been.  It's such a personal decision as to where to go now, I hate to weigh in too strongly.  I can only tell you my experiences and my reasoning.  I am stage 3a.

                      First off you questioning about scanning.  The first Onc I went to did it every 6 months, he moved across country, the second Onc scanned every 3 months.  So there you go, both facilities are considered top notch Melanoma centers.

                      As far as whether or not to do adjunctive therapy, here was my reasoning.  I was told Interferon only helped in 3-7% of the cases.  But it did not extend the survival time.  HUH?  At the time I was diagnosed there was only the year long version offered, I could not see giving up 1 good year for those odds.  They were not doing the peglated version at that time.  So it was the old watch and wait …. not as bad as it sounds.  Ipi is not a walk in the park.  If you do a search here you can read some of the reactions people have had.  Once you get your insurance on board they should pay for any usual test even if you are in a trial.

                      I am now 2.5 years cancer free.  As you read here, that doesn't mean I am out of the woods yet (I suppose you never are), but I certainly have every reason the believe that I will remain cancer free.

                      Good Luck,

                      Mary

                      • September 21, 2012 at 4:18 pm
                      washoegal
                      Participant

                        Colleen,

                        Sorry you are here.  Glad at least you enjoyed a wonderful vacation before you got hit with the bomb. 

                        You are in the spot most of us have been.  It's such a personal decision as to where to go now, I hate to weigh in too strongly.  I can only tell you my experiences and my reasoning.  I am stage 3a.

                        First off you questioning about scanning.  The first Onc I went to did it every 6 months, he moved across country, the second Onc scanned every 3 months.  So there you go, both facilities are considered top notch Melanoma centers.

                        As far as whether or not to do adjunctive therapy, here was my reasoning.  I was told Interferon only helped in 3-7% of the cases.  But it did not extend the survival time.  HUH?  At the time I was diagnosed there was only the year long version offered, I could not see giving up 1 good year for those odds.  They were not doing the peglated version at that time.  So it was the old watch and wait …. not as bad as it sounds.  Ipi is not a walk in the park.  If you do a search here you can read some of the reactions people have had.  Once you get your insurance on board they should pay for any usual test even if you are in a trial.

                        I am now 2.5 years cancer free.  As you read here, that doesn't mean I am out of the woods yet (I suppose you never are), but I certainly have every reason the believe that I will remain cancer free.

                        Good Luck,

                        Mary

                        • September 21, 2012 at 4:18 pm
                        washoegal
                        Participant

                          Colleen,

                          Sorry you are here.  Glad at least you enjoyed a wonderful vacation before you got hit with the bomb. 

                          You are in the spot most of us have been.  It's such a personal decision as to where to go now, I hate to weigh in too strongly.  I can only tell you my experiences and my reasoning.  I am stage 3a.

                          First off you questioning about scanning.  The first Onc I went to did it every 6 months, he moved across country, the second Onc scanned every 3 months.  So there you go, both facilities are considered top notch Melanoma centers.

                          As far as whether or not to do adjunctive therapy, here was my reasoning.  I was told Interferon only helped in 3-7% of the cases.  But it did not extend the survival time.  HUH?  At the time I was diagnosed there was only the year long version offered, I could not see giving up 1 good year for those odds.  They were not doing the peglated version at that time.  So it was the old watch and wait …. not as bad as it sounds.  Ipi is not a walk in the park.  If you do a search here you can read some of the reactions people have had.  Once you get your insurance on board they should pay for any usual test even if you are in a trial.

                          I am now 2.5 years cancer free.  As you read here, that doesn't mean I am out of the woods yet (I suppose you never are), but I certainly have every reason the believe that I will remain cancer free.

                          Good Luck,

                          Mary

                          • September 22, 2012 at 1:22 pm
                          Nicky
                          Participant

                            Hi Colleen, I'm sorry that you and your husband and children are having to go through this journey.  I'm also Stage IIIb, diagnosed at 35 years and fortunately have been beating it for nearly 12 years now.  You can read my patnet under Nicky which shows they type of treatment that I had.  Everyone is different however and if you are a researcher you will arm yourself with the latest research and clinical trials out there and keep up the fight to get him the best treatment.  You have heaps of support here, this website was and is a huge support to me.  I had scans approx every 6 months for the first few years. Take care Colleen, I'm wishing you all the best. 

                            • September 22, 2012 at 1:22 pm
                            Nicky
                            Participant

                              Hi Colleen, I'm sorry that you and your husband and children are having to go through this journey.  I'm also Stage IIIb, diagnosed at 35 years and fortunately have been beating it for nearly 12 years now.  You can read my patnet under Nicky which shows they type of treatment that I had.  Everyone is different however and if you are a researcher you will arm yourself with the latest research and clinical trials out there and keep up the fight to get him the best treatment.  You have heaps of support here, this website was and is a huge support to me.  I had scans approx every 6 months for the first few years. Take care Colleen, I'm wishing you all the best. 

                              • September 22, 2012 at 1:22 pm
                              Nicky
                              Participant

                                Hi Colleen, I'm sorry that you and your husband and children are having to go through this journey.  I'm also Stage IIIb, diagnosed at 35 years and fortunately have been beating it for nearly 12 years now.  You can read my patnet under Nicky which shows they type of treatment that I had.  Everyone is different however and if you are a researcher you will arm yourself with the latest research and clinical trials out there and keep up the fight to get him the best treatment.  You have heaps of support here, this website was and is a huge support to me.  I had scans approx every 6 months for the first few years. Take care Colleen, I'm wishing you all the best. 

                                • September 22, 2012 at 1:22 pm
                                Nicky
                                Participant

                                  Hi Colleen, I'm sorry that you and your husband and children are having to go through this journey.  I'm also Stage IIIb, diagnosed at 35 years and fortunately have been beating it for nearly 12 years now.  You can read my patnet under Nicky which shows they type of treatment that I had.  Everyone is different however and if you are a researcher you will arm yourself with the latest research and clinical trials out there and keep up the fight to get him the best treatment.  You have heaps of support here, this website was and is a huge support to me.  I had scans approx every 6 months for the first few years. Take care Colleen, I'm wishing you all the best. 

                                  • September 22, 2012 at 1:22 pm
                                  Nicky
                                  Participant

                                    Hi Colleen, I'm sorry that you and your husband and children are having to go through this journey.  I'm also Stage IIIb, diagnosed at 35 years and fortunately have been beating it for nearly 12 years now.  You can read my patnet under Nicky which shows they type of treatment that I had.  Everyone is different however and if you are a researcher you will arm yourself with the latest research and clinical trials out there and keep up the fight to get him the best treatment.  You have heaps of support here, this website was and is a huge support to me.  I had scans approx every 6 months for the first few years. Take care Colleen, I'm wishing you all the best. 

                                    • September 22, 2012 at 1:22 pm
                                    Nicky
                                    Participant

                                      Hi Colleen, I'm sorry that you and your husband and children are having to go through this journey.  I'm also Stage IIIb, diagnosed at 35 years and fortunately have been beating it for nearly 12 years now.  You can read my patnet under Nicky which shows they type of treatment that I had.  Everyone is different however and if you are a researcher you will arm yourself with the latest research and clinical trials out there and keep up the fight to get him the best treatment.  You have heaps of support here, this website was and is a huge support to me.  I had scans approx every 6 months for the first few years. Take care Colleen, I'm wishing you all the best. 

                                  Viewing 11 reply threads

                                  Tagged: 

                                  • You must be logged in to reply to this topic.
                                  About the MRF Patient Forum

                                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                  The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                  Popular Topics