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How long have you had mel, and what stage are you at now?

Forums General Melanoma Community How long have you had mel, and what stage are you at now?

  • Post
    thebunches
    Participant

    How long have you had mel, and what stage are you at now?

    How long have you had mel, and what stage are you at now?

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  • Replies
      thebunches
      Participant

      We go to the surg onc on Monday for my husband's first consult after seeing the derm, and he is probably either a Stage I or Stage III. I don't know which of us is more afraid. I think we can handle Stage I…but my husband says if it's more advanced, he doesn't want to live with chemo or anything like that. I don't know what to do. I want to fight this with everything we've got, but I also want to respect his wishes.

      So my question is… how long have you had mel, and at what Stage are you now?

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      thebunches
      Participant

      We go to the surg onc on Monday for my husband's first consult after seeing the derm, and he is probably either a Stage I or Stage III. I don't know which of us is more afraid. I think we can handle Stage I…but my husband says if it's more advanced, he doesn't want to live with chemo or anything like that. I don't know what to do. I want to fight this with everything we've got, but I also want to respect his wishes.

      So my question is… how long have you had mel, and at what Stage are you now?

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        Lauri England
        Participant

        I was diagnosed with Melanoma June 2, 2010.  I am currently in my 7th month of Interferon.  I was diagnosed Stage IIIC.  It is a scarry thing but they have options for treatments once you know what stage you are.  There are many success stories out here about stage 4 even.  It is worth the fight.  smiley

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        Lauri England
        Participant

        I was diagnosed with Melanoma June 2, 2010.  I am currently in my 7th month of Interferon.  I was diagnosed Stage IIIC.  It is a scarry thing but they have options for treatments once you know what stage you are.  There are many success stories out here about stage 4 even.  It is worth the fight.  smiley

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        nicoli
        Participant

        Diagnosed December 2009 with stage 3b melanoma on the scalp. Still stage 3b despite local recurrances.

        Many, many people survive for years with this disease. Treatments can be tough but if a little old grandma like me can handle the treatments, so can your husband. And when the doctor gives him his survival statistics, don't believe them!

        According to the "statistics" I have a 30% chance of being alive 5 years from diagnosis. But I figure SOMEBODY has to be in that 30%, may as well be ME! 

        I will take whatever treatment they give me. I don't want this da** disease to win. I have things to do and kids to parent and grandchildren to grandparent. My family wants me to fight and I will show them how it's done so that if anyone of my kids gets a disease like this they can draw strenght from my fight. I will not let them down!!

        Nicki, Stage 3 scalp

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        nicoli
        Participant

        Diagnosed December 2009 with stage 3b melanoma on the scalp. Still stage 3b despite local recurrances.

        Many, many people survive for years with this disease. Treatments can be tough but if a little old grandma like me can handle the treatments, so can your husband. And when the doctor gives him his survival statistics, don't believe them!

        According to the "statistics" I have a 30% chance of being alive 5 years from diagnosis. But I figure SOMEBODY has to be in that 30%, may as well be ME! 

        I will take whatever treatment they give me. I don't want this da** disease to win. I have things to do and kids to parent and grandchildren to grandparent. My family wants me to fight and I will show them how it's done so that if anyone of my kids gets a disease like this they can draw strenght from my fight. I will not let them down!!

        Nicki, Stage 3 scalp

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        Cynthia C
        Participant

        Diagnosed at IIIb March 2001 (ulcerated lower leg lesion and 2 positive groin lymph nodes). I only lasted through 8 doses of interferon with no further treatment. I have had no recurrences.

        Cynthia in Colorado

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        Cynthia C
        Participant

        Diagnosed at IIIb March 2001 (ulcerated lower leg lesion and 2 positive groin lymph nodes). I only lasted through 8 doses of interferon with no further treatment. I have had no recurrences.

        Cynthia in Colorado

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        lhaley
        Participant

        Originally diagnosed in 1979.  Had several other primaries as years went by. Original metasticized under the scar line in 06 taking me to stage IV since it was so deep. This was never expected (we are each unique). Since then it's gone to the bladder, different area lymph nodes and now they are watching several other spots (2 tiny lung node, a few lymph nodes in abdomen area that were noted in report but not commented on – these were found when I went in with gallbladder issues, ugh). I have basically been treated with surgery and one year of a trial on lukine.  Each of us is different, some are more aggressive while there are people like me whose mel has been basically slow growing with spurts.  I'm expecting to go with a systemic treatment with any additional growth. Scans on Tuesday!!

        As your husband adjusts he will most likely adjust and change his mind. It all takes time.  There is hope, he is just worried!!

        Linda

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        lhaley
        Participant

        Originally diagnosed in 1979.  Had several other primaries as years went by. Original metasticized under the scar line in 06 taking me to stage IV since it was so deep. This was never expected (we are each unique). Since then it's gone to the bladder, different area lymph nodes and now they are watching several other spots (2 tiny lung node, a few lymph nodes in abdomen area that were noted in report but not commented on – these were found when I went in with gallbladder issues, ugh). I have basically been treated with surgery and one year of a trial on lukine.  Each of us is different, some are more aggressive while there are people like me whose mel has been basically slow growing with spurts.  I'm expecting to go with a systemic treatment with any additional growth. Scans on Tuesday!!

        As your husband adjusts he will most likely adjust and change his mind. It all takes time.  There is hope, he is just worried!!

        Linda

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        Jim M.
        Participant

        I was diagnosed stage 3C. I had an LND, radiation and a clinical trial with Ipi/ vaccines. I've had no recurrences and have been NED for 3.5 years.

         God Bless,

         Jim M.

         stage 3C

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        Jim M.
        Participant

        I was diagnosed stage 3C. I had an LND, radiation and a clinical trial with Ipi/ vaccines. I've had no recurrences and have been NED for 3.5 years.

         God Bless,

         Jim M.

         stage 3C

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        BethA in VA
        Participant

        I was diagnosed in 1993 and after surgery to remove mole and lymph nodes, I went 10 1/2 years NED.  Then in 2004,  I  had a recurrence and went to Stage 3B where I am today.  Clinical trials, surgery, close monitoring!  You can go thru some really rough times, and come out a winner.  Hang in there.  Don't start thinking of giving up yet.  Beth

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        BethA in VA
        Participant

        I was diagnosed in 1993 and after surgery to remove mole and lymph nodes, I went 10 1/2 years NED.  Then in 2004,  I  had a recurrence and went to Stage 3B where I am today.  Clinical trials, surgery, close monitoring!  You can go thru some really rough times, and come out a winner.  Hang in there.  Don't start thinking of giving up yet.  Beth

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      NicOz
      Participant
      Had it 3 years- diagnosed stage 4 with brain mets & unknown primary. And it’s been a busy 3 years, but well worth the argument with mel IMO. In 13 days my ‘baby’ turns 6 :) currently on GSK BRAF trial.

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      NicOz
      Participant
      Had it 3 years- diagnosed stage 4 with brain mets & unknown primary. And it’s been a busy 3 years, but well worth the argument with mel IMO. In 13 days my ‘baby’ turns 6 :) currently on GSK BRAF trial.

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        thebunches
        Participant

        NicOz, how did you cope with getting that news with a 3-year-old child at home? (Congrats on your three years, by the way! That's awesome!)

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        thebunches
        Participant

        NicOz, how did you cope with getting that news with a 3-year-old child at home? (Congrats on your three years, by the way! That's awesome!)

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      KatyWI
      Participant

      I've had it almost 10 years, diagnosed at IIIa and currently IV NED.

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      KatyWI
      Participant

      I've had it almost 10 years, diagnosed at IIIa and currently IV NED.

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      dian in spokane
      Participant

      I was diagnosed at stage I in 1983 and I am now stage IV

      Though I must say, this little poll is of no value. Each person is an individual and each individual's melanoma has a life of it's own. While your husband's prognosis will be much better if he is stage I rather than stage III, he'll still have cancer one way or the other.

      We have a lot of patients here who have been stage III and doing great for many years. Some of those folks have done interferon, and others have done clinical trials and yet others have had NO treatment beyond surgery. So if that's the course he chooses to take, there are a lot of folks here who've been successful with that option.

      It's a frightful diagnosis, but you will handle it one day at a time and surprise yourself with your own strength and courage.

      Good luck!

      dian in spokane

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      dian in spokane
      Participant

      I was diagnosed at stage I in 1983 and I am now stage IV

      Though I must say, this little poll is of no value. Each person is an individual and each individual's melanoma has a life of it's own. While your husband's prognosis will be much better if he is stage I rather than stage III, he'll still have cancer one way or the other.

      We have a lot of patients here who have been stage III and doing great for many years. Some of those folks have done interferon, and others have done clinical trials and yet others have had NO treatment beyond surgery. So if that's the course he chooses to take, there are a lot of folks here who've been successful with that option.

      It's a frightful diagnosis, but you will handle it one day at a time and surprise yourself with your own strength and courage.

      Good luck!

      dian in spokane

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        thebunches
        Participant

        Thanks, Dian! With the hundreds of thousands of people with mel, I know that the few who answer here are only the tip if the iceberg in "poll responses". However, it is nice to know that there are other people in the same boat, and that my husband doesn't have to throw in the towel after just this initial report.

        It is definitely a very scary diagnosis…but we are putting our faith in God and we know He will bring us through each and every day.

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        thebunches
        Participant

        Thanks, Dian! With the hundreds of thousands of people with mel, I know that the few who answer here are only the tip if the iceberg in "poll responses". However, it is nice to know that there are other people in the same boat, and that my husband doesn't have to throw in the towel after just this initial report.

        It is definitely a very scary diagnosis…but we are putting our faith in God and we know He will bring us through each and every day.

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      Janner
      Participant

      Not a helpful poll… because if you are not actively seeking treatment, you're not likely to be hanging out on this board.  There are certainly people who stick around, but the vast majority of people who are not actively doing treatment don't have much reason to stick around on sites like this.  So any poll you do here will be skewed towards people who have recurred and are actively seeking treatment.  Those people who never recur tend to drift away after the shock of the new diagnosis settles a bit.

      Janner

      Stage 1 since 1992, 3 MM primaries, no acitve treatment but can't quite leave this place either.

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      Janner
      Participant

      Not a helpful poll… because if you are not actively seeking treatment, you're not likely to be hanging out on this board.  There are certainly people who stick around, but the vast majority of people who are not actively doing treatment don't have much reason to stick around on sites like this.  So any poll you do here will be skewed towards people who have recurred and are actively seeking treatment.  Those people who never recur tend to drift away after the shock of the new diagnosis settles a bit.

      Janner

      Stage 1 since 1992, 3 MM primaries, no acitve treatment but can't quite leave this place either.

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      DeborahG
      Participant

      Diagnosed Stage II in July 1996.  Other than WLE and followup derm visits, no other treatment was offered.  Have had numerous biopsies on moles/lesions which have changed, but no more melanoma.

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      DeborahG
      Participant

      Diagnosed Stage II in July 1996.  Other than WLE and followup derm visits, no other treatment was offered.  Have had numerous biopsies on moles/lesions which have changed, but no more melanoma.

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      DeborahG
      Participant

      Diagnosed Stage II in July 1996.  Other than WLE and followup derm visits, no other treatment was offered.  Have had numerous biopsies on moles/lesions which have changed, but no more melanoma.

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      DeborahG
      Participant

      Diagnosed Stage II in July 1996.  Other than WLE and followup derm visits, no other treatment was offered.  Have had numerous biopsies on moles/lesions which have changed, but no more melanoma.

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      DeborahG
      Participant

      Diagnosed Stage II in July 1996.  Other than WLE and followup derm visits, no other treatment was offered.  Have had numerous biopsies on moles/lesions which have changed, but no more melanoma.

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      DeborahG
      Participant

      Diagnosed Stage II in July 1996.  Other than WLE and followup derm visits, no other treatment was offered.  Have had numerous biopsies on moles/lesions which have changed, but no more melanoma.

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      Jamietk
      Participant

      Noticed new lesion in March of 2005. Was told it was nothing. Finally had it removed late August of 2005. First path report locally put me at very upper end of IB (2.0mm). Second path report at MDA put me at very lower end of IIA (2.1mm). Only treatment was WLE/SNB w/ negative nodes. I've been NED for 5 years and 8 months. About a year ago, my PA at MDA wrote a letter of recommendation for me for adoption purposes. His letter stated at that point, my chance of recurrence was about 2%-3%. I agree with everyone else. Most people who are low to moderate risk with no current treatment needs are off living their lives. I don't come here near as often, and most don't come here at all but  maybe once or twice a year to check in and share their NED status so other newbies can have hope. Best wishes.

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      Jamietk
      Participant

      Noticed new lesion in March of 2005. Was told it was nothing. Finally had it removed late August of 2005. First path report locally put me at very upper end of IB (2.0mm). Second path report at MDA put me at very lower end of IIA (2.1mm). Only treatment was WLE/SNB w/ negative nodes. I've been NED for 5 years and 8 months. About a year ago, my PA at MDA wrote a letter of recommendation for me for adoption purposes. His letter stated at that point, my chance of recurrence was about 2%-3%. I agree with everyone else. Most people who are low to moderate risk with no current treatment needs are off living their lives. I don't come here near as often, and most don't come here at all but  maybe once or twice a year to check in and share their NED status so other newbies can have hope. Best wishes.

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      TAC
      Participant

      Diagnosed Stage II in 2001, moved to Stage IIIb in 2002 and have remained Stage IIIb in spite of 6 recurrences…original lesion on left side of my face…all recurrences within 1 1/2" of original lesion….tried interferon, radiation, a vaccine and now Leukine….had recurrences with all treatments but all recurrences were surgically removed.

      Have also had kidney cancer (left kidney removed) and lung cancer (non-smoker, upper left lobe of lung removed). These cancers were not mets from melanoma but two distinctly types of cancer.

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      TAC
      Participant

      Diagnosed Stage II in 2001, moved to Stage IIIb in 2002 and have remained Stage IIIb in spite of 6 recurrences…original lesion on left side of my face…all recurrences within 1 1/2" of original lesion….tried interferon, radiation, a vaccine and now Leukine….had recurrences with all treatments but all recurrences were surgically removed.

      Have also had kidney cancer (left kidney removed) and lung cancer (non-smoker, upper left lobe of lung removed). These cancers were not mets from melanoma but two distinctly types of cancer.

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      RMcLegal
      Participant

      I was diagnosed at Stage IIIc in July 2003, did biochemotherapy that fall, and today am healthy and NED.  There are lots of treatment success stories out there.  I've blogged about the lighter side of the journey at http://www.hotelmelanoma.blogspot.com.  Best wishes.

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      RMcLegal
      Participant

      I was diagnosed at Stage IIIc in July 2003, did biochemotherapy that fall, and today am healthy and NED.  There are lots of treatment success stories out there.  I've blogged about the lighter side of the journey at http://www.hotelmelanoma.blogspot.com.  Best wishes.

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      jimjoeb
      Participant

      I'm at exactly the same point as your husband. I had my WLE and SLNB on Tuesday and will learn within a couple of weeks if I'm Stage I or III.

      I'm frightenend but determined to be positive and to fight. I have my moral and medical supporters lined up and we're ready to take it on.

      It was important for me to connect with my spiritual grounding as well. I know that's not meaningful for many but it does help me to know that God is with me whatever will come.

      Take care

      Joslyn

      Stage 1b Wannabe

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      jimjoeb
      Participant

      I'm at exactly the same point as your husband. I had my WLE and SLNB on Tuesday and will learn within a couple of weeks if I'm Stage I or III.

      I'm frightenend but determined to be positive and to fight. I have my moral and medical supporters lined up and we're ready to take it on.

      It was important for me to connect with my spiritual grounding as well. I know that's not meaningful for many but it does help me to know that God is with me whatever will come.

      Take care

      Joslyn

      Stage 1b Wannabe

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      washoegal
      Participant

      I'm stage 3a, I chose a wait and watch approach after hearing the diagnosis.  The only other option given was interferon which I did not feel was for me.  Anyway, to answer you question I am now just shy of 15 months free and clear, last week was my last set of scans. 

      Take some time making decisions, don't feel like you have to come up with an answer immediately.  And once you have made a decision, don't ever look back.

      Good luck.

      Mary

      Stage 3

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      washoegal
      Participant

      I'm stage 3a, I chose a wait and watch approach after hearing the diagnosis.  The only other option given was interferon which I did not feel was for me.  Anyway, to answer you question I am now just shy of 15 months free and clear, last week was my last set of scans. 

      Take some time making decisions, don't feel like you have to come up with an answer immediately.  And once you have made a decision, don't ever look back.

      Good luck.

      Mary

      Stage 3

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      snbsmith
      Participant

      I was diagnosed stage IV in February of 2006.  I did IL-2, and then 2 NIH clinical trials after that with gamma knife for brain met in between the clinical trials.  I have been NED for 2 1/2 years! 

      Treatment is a very personal dicision, but your husband should know how you feel.  My wife was a great supporter of my efforts, and that realy helped me.

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        Vermont_Donna
        Participant

        HI,

        It seems that your husband may not know that chemo means many things these days, not the image usually conjured up in our minds, of chemo that makes you deathly ill, you lose your hair, etc. Yes there is still that kind of chemo….but chemotherapy means therapy ie treatment with medicines ie drugs. Many of the melanoma chemo therapys are "immunotherapies"…drugs designed to boost your body's own immune system to fight off the melanoma…..Interferon, Leukine and Ipilimumab to name a few ( I have had all three. I was initially diagnosed 4 and 1/2 years ago at stage 3a  and I remain at 3a…I have had numerous reoccurences, all in my right leg, aand recently completed four infusions of Ipi and all my cancer is gone. I am scheduled for my second round of Ipi this next Wed). The point here is that some of the drugs, both the chemotherapy and the immunotherapy drugs used for melanoma are such that some people are able to work at their job, and still function at home, with their family, at their job, they may experience some fatigue, some nausea, and other side effects, but melanoma becomes a chronic disease to manage and live with….LIVE WITH being the key words. Some people have worse side effects or choose not to work during a specific treatment. I think that it is way premature for your husband, who hasnt even been staged yet to say he will not do chemo. You both do not have the staging info, the info on treatments available, or clinical trials, etc., so it is impossible to make a treatment plan right now. I know you are both scared, we were all scared too, when we stood where you are standing now. We continue to have are our fears no matter what stage we are, or treatments we have. Its best to get all the information, hear about treatment options and carefully consider what it means for you and your husband, your family,etc. There is financial support if he is diagnosed at stage 3 or more, in the form of SSDI. This has to be applied for and many of us are on it and can walk you through it. It can be tougher for some than others to get it, but again, we can help advise you.

        Take some deep breaths and know that life will go on for you…different yes because now cancer is part of your life. There is a whole new language to learn as you are finding out.

        My best to you……

        Vermont_Donna, stage 3a, NED for two months after four infusions of Ipi

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        carol b
        Participant

        Donna you are so wonderful with your words. Everyone here needs you. You seem to know all about all.. Have a great day

        carol bellinger

        Stage 4

        interlukin2

        partial responder

        dx  dec 4 2010

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        carol b
        Participant

        Donna you are so wonderful with your words. Everyone here needs you. You seem to know all about all.. Have a great day

        carol bellinger

        Stage 4

        interlukin2

        partial responder

        dx  dec 4 2010

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        rbruce
        Participant

        Carol,

        I noticed on your profile that you did IL-2.  I am recently diagnosed stage IV and don't qualify for the BRAF trials and am considering IL-2.  Frankly, everything I read about it scares the heck out of me.  Do you have any words of wisdom for getting through the treatment for a wimp like me?  I go in for a new PET/CT today to see if my lung tumors have changed and if the disease has spread anywhere else.  Look forward to your comments.

        Thanks,

        Robert

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        rbruce
        Participant

        Carol,

        I noticed on your profile that you did IL-2.  I am recently diagnosed stage IV and don't qualify for the BRAF trials and am considering IL-2.  Frankly, everything I read about it scares the heck out of me.  Do you have any words of wisdom for getting through the treatment for a wimp like me?  I go in for a new PET/CT today to see if my lung tumors have changed and if the disease has spread anywhere else.  Look forward to your comments.

        Thanks,

        Robert

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        Vermont_Donna
        Participant

        HI,

        It seems that your husband may not know that chemo means many things these days, not the image usually conjured up in our minds, of chemo that makes you deathly ill, you lose your hair, etc. Yes there is still that kind of chemo….but chemotherapy means therapy ie treatment with medicines ie drugs. Many of the melanoma chemo therapys are "immunotherapies"…drugs designed to boost your body's own immune system to fight off the melanoma…..Interferon, Leukine and Ipilimumab to name a few ( I have had all three. I was initially diagnosed 4 and 1/2 years ago at stage 3a  and I remain at 3a…I have had numerous reoccurences, all in my right leg, aand recently completed four infusions of Ipi and all my cancer is gone. I am scheduled for my second round of Ipi this next Wed). The point here is that some of the drugs, both the chemotherapy and the immunotherapy drugs used for melanoma are such that some people are able to work at their job, and still function at home, with their family, at their job, they may experience some fatigue, some nausea, and other side effects, but melanoma becomes a chronic disease to manage and live with….LIVE WITH being the key words. Some people have worse side effects or choose not to work during a specific treatment. I think that it is way premature for your husband, who hasnt even been staged yet to say he will not do chemo. You both do not have the staging info, the info on treatments available, or clinical trials, etc., so it is impossible to make a treatment plan right now. I know you are both scared, we were all scared too, when we stood where you are standing now. We continue to have are our fears no matter what stage we are, or treatments we have. Its best to get all the information, hear about treatment options and carefully consider what it means for you and your husband, your family,etc. There is financial support if he is diagnosed at stage 3 or more, in the form of SSDI. This has to be applied for and many of us are on it and can walk you through it. It can be tougher for some than others to get it, but again, we can help advise you.

        Take some deep breaths and know that life will go on for you…different yes because now cancer is part of your life. There is a whole new language to learn as you are finding out.

        My best to you……

        Vermont_Donna, stage 3a, NED for two months after four infusions of Ipi

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      snbsmith
      Participant

      I was diagnosed stage IV in February of 2006.  I did IL-2, and then 2 NIH clinical trials after that with gamma knife for brain met in between the clinical trials.  I have been NED for 2 1/2 years! 

      Treatment is a very personal dicision, but your husband should know how you feel.  My wife was a great supporter of my efforts, and that realy helped me.

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      Sharyn
      Participant

      DX March 2006, Stage IIIB.

      Advanved to Stage IV February 2009, mets to uterus.  June 2009 mets to lung.  Brain mets October 2009. Mets to breast & mastectomy August 2010. Brain mets February 2011.

      Sharyn  

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      Sharyn
      Participant

      DX March 2006, Stage IIIB.

      Advanved to Stage IV February 2009, mets to uterus.  June 2009 mets to lung.  Brain mets October 2009. Mets to breast & mastectomy August 2010. Brain mets February 2011.

      Sharyn  

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      bluepeople
      Participant

      Hubby was diagnosed August 2010 at Stage IIC.  He is in the middle of the year of LD interferon.  We are lucky it is only stage II, but I feel like we still live with it always hanging over our head "will it come back or not?"  Doctor basically says it is 50/50. 

      Akilyn

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      bluepeople
      Participant

      Hubby was diagnosed August 2010 at Stage IIC.  He is in the middle of the year of LD interferon.  We are lucky it is only stage II, but I feel like we still live with it always hanging over our head "will it come back or not?"  Doctor basically says it is 50/50. 

      Akilyn

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      BarbieGirl
      Participant

      Stage 2b, NED 10 years, 5 months, and 3 days, but who's counting?  =)

      Mine was a dime-sized, triangle-shaped freckle on my face that showed up when I was preggers with my son, who's now 26.  Kept getting darker and darker.  I had it frozen off twice, then removed by a plastic surgeon.  After that, it never really "healed"—kinda like pulling a scab off too early.  Over the years, the dark color started coming back again, and it became itchy.  Woke up one morning with blood all over my face and hands—I guess I had scratched it during the night.  I panicked.   I knew it was 'nothing', as it had been 'nothing' before, but I was singing pretty regularly in public and very vain.  The last straw was when I was shopping with a friend one day, and a stranger came up, licked her finger and said, "Excuse me, but you have some chocolate on your face, and proceeded to "wipe off" my freckle.  That was it,  and for pure vanity reasons, I had it removed a 4th time by another plastic surgeon.  It came back as a "deeply invasive" melanoma, Breslow 2.25mm, Stage 2B,  and a 60% chance of surviving 5 years.  I only managed 8 weeks of interferon, then decided I'd rather die from the cancer than the treatment!  (I was the 1-outta-4 who couldn't tolerate the interferon.)

      Fast forward 10-1/2 years later, and I'm still here.  I have had scans every 6 months for 10 years, which some call overkill.  (2 PET/CTs a year; 1 brain MRI and chest x-ray a year.  Bloodwork every 3 months.)  My onc and I agree IF there's a chance of recurrence, (and there's ALWAYS that chance), it's better to catch it early than wait 'til it's spread all over. Thank God for great insurance!

      I was scheduled for a PET/CT yesterday, along with blood-work, then a visit with my onc, but had to cancel because my very frail, almost 84-yr-old mom is visiting from out-of-state.  Rented a wheel chair so she could go with me, (she can't be left alone), and *I* couldn't lift it in or out of the car, due to my bad back (not mel. related).   So I have to reschedule that soon.  Hopefully, I'll still be NED!!

      ~Lisa~

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      BarbieGirl
      Participant

      Stage 2b, NED 10 years, 5 months, and 3 days, but who's counting?  =)

      Mine was a dime-sized, triangle-shaped freckle on my face that showed up when I was preggers with my son, who's now 26.  Kept getting darker and darker.  I had it frozen off twice, then removed by a plastic surgeon.  After that, it never really "healed"—kinda like pulling a scab off too early.  Over the years, the dark color started coming back again, and it became itchy.  Woke up one morning with blood all over my face and hands—I guess I had scratched it during the night.  I panicked.   I knew it was 'nothing', as it had been 'nothing' before, but I was singing pretty regularly in public and very vain.  The last straw was when I was shopping with a friend one day, and a stranger came up, licked her finger and said, "Excuse me, but you have some chocolate on your face, and proceeded to "wipe off" my freckle.  That was it,  and for pure vanity reasons, I had it removed a 4th time by another plastic surgeon.  It came back as a "deeply invasive" melanoma, Breslow 2.25mm, Stage 2B,  and a 60% chance of surviving 5 years.  I only managed 8 weeks of interferon, then decided I'd rather die from the cancer than the treatment!  (I was the 1-outta-4 who couldn't tolerate the interferon.)

      Fast forward 10-1/2 years later, and I'm still here.  I have had scans every 6 months for 10 years, which some call overkill.  (2 PET/CTs a year; 1 brain MRI and chest x-ray a year.  Bloodwork every 3 months.)  My onc and I agree IF there's a chance of recurrence, (and there's ALWAYS that chance), it's better to catch it early than wait 'til it's spread all over. Thank God for great insurance!

      I was scheduled for a PET/CT yesterday, along with blood-work, then a visit with my onc, but had to cancel because my very frail, almost 84-yr-old mom is visiting from out-of-state.  Rented a wheel chair so she could go with me, (she can't be left alone), and *I* couldn't lift it in or out of the car, due to my bad back (not mel. related).   So I have to reschedule that soon.  Hopefully, I'll still be NED!!

      ~Lisa~

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      Jydnew
      Participant

      My husband was diagnosed stage iiia in Jan 2002 and has no further recurrences.  His primary was located on the tricep area of his right arm, was 1.3 mm, not ulcerated.  He had micrometastasis in either 1 or 2 nodes – always confuses me on the pathology report…

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      Jydnew
      Participant

      My husband was diagnosed stage iiia in Jan 2002 and has no further recurrences.  His primary was located on the tricep area of his right arm, was 1.3 mm, not ulcerated.  He had micrometastasis in either 1 or 2 nodes – always confuses me on the pathology report…

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      SarahS
      Participant

      I've had three separate primaries. The first was in 2003, it was stage 1a on my back, I was 21 years old. The second was in 2005, it was a thin melanoma, stage 0, on my left arm. Then I was diagnosed again in 2006, stage3a, the mole was on the back of my right leg.  With the last diagnosis, I had a WLE, SNB, and a complete lymph node dissection (right groin), then I did 9 months of interferon in 2007.  Thankfully I've been NED since!

      Best wishes to you and your husband!

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      SarahS
      Participant

      I've had three separate primaries. The first was in 2003, it was stage 1a on my back, I was 21 years old. The second was in 2005, it was a thin melanoma, stage 0, on my left arm. Then I was diagnosed again in 2006, stage3a, the mole was on the back of my right leg.  With the last diagnosis, I had a WLE, SNB, and a complete lymph node dissection (right groin), then I did 9 months of interferon in 2007.  Thankfully I've been NED since!

      Best wishes to you and your husband!

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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.

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