Blue Nevus Melanoma & Leukine Question

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

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

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. 

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. 

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

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