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Blue Nevus Melanoma & Leukine Question

Forums General Melanoma Community Blue Nevus Melanoma & Leukine Question

  • Post
    Reservoir Dog
    Participant

    Hello all!

    Patrick here in Dallas making my first post.  I'd like to thank you all for your up-lifting stories of courage and determination.  When I read about what others have gone through & are going through, I came to realize that I am a flipping weenie!!! 

    Hello all!

    Patrick here in Dallas making my first post.  I'd like to thank you all for your up-lifting stories of courage and determination.  When I read about what others have gone through & are going through, I came to realize that I am a flipping weenie!!! 

    I returned home from the doctor in tears because it appears another Melanoma spot has resurfaced on my face… for the 4th time.  After 3 excessions (maybe a 4th), 10 months of Interferon, coupled w/ radiation on the effected area, my doctor is concerned that it continues to return.   I guess the stories of Blue Nevus melanoma being very agressive… are true! 

    My Oncologist said she'd like to put me on Leukine (Sargramostim) in an effort to extend my life.  I'm curious to see if anyone has used Leukine and what the results were???

    Thanks in advance and God Bless!

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  • Replies
      Vermont_Donna
      Participant

      Hi,

      First of all you are not a "flipping weenie"…all of us who have endured melanoma diagnoses and treatments are warriors and our caretakers our heros!

      You have come to the right place to seek support and encouragement and learn from people's individual melanoma journeys, but the final treatment decisions as you should know, rest with you and your team.

      I am sorry that you have had re-occurences of melanoma ane especially on your face. Mine were all on my leg, and many months of the year I could "hide" them or their resulting scars from resection! So you are a very brave warrior!

      I did 7 months of Leukine back in 2009, before I had a re-occurence. I found the injections to be do-able, they were sub q so another small needle. I did get huge welts at the injection sites, so took benedryl, tylenol, and of course iced the site and then also did the injections in the evening before bed and slept off any side effects. I only had minor fatigue, and some long bone pain. But I worked full time through out all of it. It was not nearly as debilitating as Inteferon was for me.

      There may be some who write that a recent study showed leukine to not be effective in treating melanoma. I would research this and discuss this with your oncologist. I hope that you are seeing a MELANOMA ONCOLOGIST. This is CRUCIAL!!

      I met with my radiation doctor today for a routine followup appointment after I had 6 weeks of radiation this past summer. I am NED now after 4 infusions of Ipi. My melanoma returned within 6 weeks of the radiation. I told my doctor I dont believe I will say I had "treatment failures"…..I choose to believe that my treatments, whatever I did, helped delay the re-occurences of melanoma and that this brought me to the clinical trial of Ipilimumab, which has so far eradicated my melanoma.

      Good luck in your treatments! Come back to the board and update us, we get attached!!

      Vermont_Donna, stage 3a

      stable after 4 infusions of Ipi

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        Reservoir Dog
        Participant

        Hey there Vermont_Donna,

           I wanted to thank you for being so gracious with your reply.  I truly appreciate the insight and words of wisdom!  I was pretty down last week when I initially posted.  My oncologist, whom I don't think specializes in Melanoma, said she wanted to put me on Leukine to extend my life as long as possible.  I went to my surgical oncologist earlier this week who DOES specialize in Melanoma.  He said that the majority of all "lethal" cases of melanoma show signs of metastizing to other areas within the first 2 years.  Since my face was initially sliced up over 2 yrs ago, the risk of mets has declined a bit. 

        I wanted to let you know that even though we are thousands of miles apart, you are in my thoughts and prayers.  I pray that God's loving Grace showers you and your family during these extreme times.  Blessings!

        Dallas_Patrick!

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        Reservoir Dog
        Participant

        Hey there Vermont_Donna,

           I wanted to thank you for being so gracious with your reply.  I truly appreciate the insight and words of wisdom!  I was pretty down last week when I initially posted.  My oncologist, whom I don't think specializes in Melanoma, said she wanted to put me on Leukine to extend my life as long as possible.  I went to my surgical oncologist earlier this week who DOES specialize in Melanoma.  He said that the majority of all "lethal" cases of melanoma show signs of metastizing to other areas within the first 2 years.  Since my face was initially sliced up over 2 yrs ago, the risk of mets has declined a bit. 

        I wanted to let you know that even though we are thousands of miles apart, you are in my thoughts and prayers.  I pray that God's loving Grace showers you and your family during these extreme times.  Blessings!

        Dallas_Patrick!

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      Vermont_Donna
      Participant

      Hi,

      First of all you are not a "flipping weenie"…all of us who have endured melanoma diagnoses and treatments are warriors and our caretakers our heros!

      You have come to the right place to seek support and encouragement and learn from people's individual melanoma journeys, but the final treatment decisions as you should know, rest with you and your team.

      I am sorry that you have had re-occurences of melanoma ane especially on your face. Mine were all on my leg, and many months of the year I could "hide" them or their resulting scars from resection! So you are a very brave warrior!

      I did 7 months of Leukine back in 2009, before I had a re-occurence. I found the injections to be do-able, they were sub q so another small needle. I did get huge welts at the injection sites, so took benedryl, tylenol, and of course iced the site and then also did the injections in the evening before bed and slept off any side effects. I only had minor fatigue, and some long bone pain. But I worked full time through out all of it. It was not nearly as debilitating as Inteferon was for me.

      There may be some who write that a recent study showed leukine to not be effective in treating melanoma. I would research this and discuss this with your oncologist. I hope that you are seeing a MELANOMA ONCOLOGIST. This is CRUCIAL!!

      I met with my radiation doctor today for a routine followup appointment after I had 6 weeks of radiation this past summer. I am NED now after 4 infusions of Ipi. My melanoma returned within 6 weeks of the radiation. I told my doctor I dont believe I will say I had "treatment failures"…..I choose to believe that my treatments, whatever I did, helped delay the re-occurences of melanoma and that this brought me to the clinical trial of Ipilimumab, which has so far eradicated my melanoma.

      Good luck in your treatments! Come back to the board and update us, we get attached!!

      Vermont_Donna, stage 3a

      stable after 4 infusions of Ipi

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      nickmac56
      Participant

      My wife did a round of Leukine and it was ineffective. The shots were not troubling for her. She then went to Ipilimumab (now Yervoy), which didn't work either. Now we are off to clinical trial land. But you ought to talk to your oncologist about Ipi – getting in on it on a compassionate use basis – it's results overall appear superior to Leukine.  if you can stomach going to Houston you should get yourself to a melanoma specialist ASAP – at MD Anderson. A general oncologist is not going to be up to speed. 

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      nickmac56
      Participant

      My wife did a round of Leukine and it was ineffective. The shots were not troubling for her. She then went to Ipilimumab (now Yervoy), which didn't work either. Now we are off to clinical trial land. But you ought to talk to your oncologist about Ipi – getting in on it on a compassionate use basis – it's results overall appear superior to Leukine.  if you can stomach going to Houston you should get yourself to a melanoma specialist ASAP – at MD Anderson. A general oncologist is not going to be up to speed. 

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      KellieSue
      Participant

      Patrick, you are not a flipping weenie!

      I'm sorry to hear of your reoccurances, that must be difficult to deal with them on your face.

      I for one am a proponet of Leukine, I feel like it personally helped me. I feel like even though I had reoccurances while taking it, they were small and surgically-resectable. I feel like it helped me maintain living for many months after a Stage IV diagnosis. I was on it for about 1 1/2 years with time off in between.

      It was very easy for me to take, I had very few side effects, my insurance covered all but $15 a month and it was something I could do at home.

      I know it isn't for everyone though, some people really have problems with it and some don't feel like they've gotten any benefit from it.

      Thank you for the kind email by the way, it was very sweet of you to say such nice things. I do feel like I've had a busy few years. :)

      Kellie(from Iowa) Stage IV on b-raf

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      KellieSue
      Participant

      Patrick, you are not a flipping weenie!

      I'm sorry to hear of your reoccurances, that must be difficult to deal with them on your face.

      I for one am a proponet of Leukine, I feel like it personally helped me. I feel like even though I had reoccurances while taking it, they were small and surgically-resectable. I feel like it helped me maintain living for many months after a Stage IV diagnosis. I was on it for about 1 1/2 years with time off in between.

      It was very easy for me to take, I had very few side effects, my insurance covered all but $15 a month and it was something I could do at home.

      I know it isn't for everyone though, some people really have problems with it and some don't feel like they've gotten any benefit from it.

      Thank you for the kind email by the way, it was very sweet of you to say such nice things. I do feel like I've had a busy few years. :)

      Kellie(from Iowa) Stage IV on b-raf

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