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New here, Stage IIIc – Leukine experience?

Forums General Melanoma Community New here, Stage IIIc – Leukine experience?

  • Post
    Gwen in Maine
    Participant

    Hello Everyone,

    I've been reading the forums for a few months now and am grateful for such a supportive place to post.

    Hello Everyone,

    I've been reading the forums for a few months now and am grateful for such a supportive place to post.

    Here is my history. I've been dealing with Melanoma for almost 2 years now – diagnosed 2/09, at 47, with melanoma in lymph node on my neck, unknown primary. I had false positive spots, via PET scan, all over my body so they took time and biopsies to make sure it was only in my neck. Surgery in April to remove the lump and surrounding lymph nodes, diagnosed IIIc. A month later I had five sessions of high dose radiation to the area and a month after that, started 1 month of HD interferon followed by 11 months of low dose interferon. I got through it ok, but it was not easy. Ten months into the LD interferon, I noticed 2 small nodules at the midline front of my neck. They thought it might be scar tissue but took a biopsy and it tested postive for melanoma. I had surgery in August, 2010 and the margins were clear. Before all this happened I had never had surgery in my life and have always been generally healthy and active.

    There aren't many treatment options for me at this point. So far I've opted for watch and wait with scans every 3-4 months. I've also focused on eating a macrobiotic diet, which makes me feel like I'm doing something. Last week I found out my latest PET-scan was clear, thank goodness. My doctor talked more with me about doing the Leukine treatment. From what I've heard, the data isn't solid about whether it's helpful or not. Basically if I did it, it would be for the sake of trying anything that could possibly help it from coming back and spreading. Right now I'm feeling great though, and am hesitant to start something  that might make me feel as bad as I did on interferon, for only a little hope it could help. On the other hand, I've read that the side effects of Leukine are not as bad.

    I'd appreciate hearing from those of you who have tried Leukine and what you thought about it.

    Thanks so much,

    Gwen in Maine

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  • Replies
      MaryBZ
      Participant

      Hi Gwen,

      I am in my 11 month of the Leukine injections (14 days on 14 days off).  They have been a walk in the park compared to the LD Interferon.  My only side effects are redness and soreness at the injection site (I do ice the area before and after I inject) and fatigue.  I know some people complain of bone pain but I have not experienced this.  Even the fatigue has tapered a bit compared to the first injection which was administered at the doctor's office (as they were teaching me how to draw up the saline solution and mix it with the dry Leukine-it doesn't come all pre packaged like Intron-A).  I actually went home and fell asleep without removing my winter jacket!  I don't experience that extreme fatigue anymore.

      I pray you have very mild/minimum side effects as wellsmiley

       

      Caringly,

       

      Mary

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        Gwen in Maine
        Participant

        Thanks for writing, Mary. I had read that the side effects were less but when I went to the teaching session yesterday, it sounded like it would be similar to interferon. I'm a bit concerned about the fatigue — it was bad for me while doing the LD interferon, especially after two days off (3x week injections). It sounds like that could be an issue with the Leukine when you start again after 2 weeks off. I've just started a new job and hopefully the fatigue won't get to me. Luckily, the job has flexible hours. My three boys aren't thrilled with the idea of my being tired again either. They do get the reason why I'm considering it though.

         

        Gwen

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        Gwen in Maine
        Participant

        Thanks for writing, Mary. I had read that the side effects were less but when I went to the teaching session yesterday, it sounded like it would be similar to interferon. I'm a bit concerned about the fatigue — it was bad for me while doing the LD interferon, especially after two days off (3x week injections). It sounds like that could be an issue with the Leukine when you start again after 2 weeks off. I've just started a new job and hopefully the fatigue won't get to me. Luckily, the job has flexible hours. My three boys aren't thrilled with the idea of my being tired again either. They do get the reason why I'm considering it though.

         

        Gwen

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      MaryBZ
      Participant

      Hi Gwen,

      I am in my 11 month of the Leukine injections (14 days on 14 days off).  They have been a walk in the park compared to the LD Interferon.  My only side effects are redness and soreness at the injection site (I do ice the area before and after I inject) and fatigue.  I know some people complain of bone pain but I have not experienced this.  Even the fatigue has tapered a bit compared to the first injection which was administered at the doctor's office (as they were teaching me how to draw up the saline solution and mix it with the dry Leukine-it doesn't come all pre packaged like Intron-A).  I actually went home and fell asleep without removing my winter jacket!  I don't experience that extreme fatigue anymore.

      I pray you have very mild/minimum side effects as wellsmiley

       

      Caringly,

       

      Mary

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      lhaley
      Participant

      Gwen,

      I did leukine on a trial 4 years ago. It didn't work for me but when mine comes back it has been as single solid tumors, so maybe it did!!  I was a little achy, very itchy and had some bone pain. I worked the entire time as a special ed K teacher so it was not an easy job but very doable.  Itching at the injection site was my biggest issue.  Drinking gatorade actually helped with some of the aching. 

      Make sure that your insurance will cover the drug, otherwise it's between 20,000 – 30,000 a year!!

      Good luck!!  If you decide to go for it post again and I'm sure many of us can give you suggestions on how to help with the side effects.

      Linda

      Stage IV  since 06  NED for 2 weeks!!

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        Gwen in Maine
        Participant

        Hi Linda,

        Thanks for writing. I'm glad to hear you were able to keep working since I've just started a new job. Thanks also for the tip on drinking gatorade.

        I should hear any day now, whether my insurance will cover it.

        Gwen

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        Gwen in Maine
        Participant

        Hi Linda,

        Thanks for writing. I'm glad to hear you were able to keep working since I've just started a new job. Thanks also for the tip on drinking gatorade.

        I should hear any day now, whether my insurance will cover it.

        Gwen

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        willis
        Participant

        Hello Gwen,

        I've been on leukine for six months with seven more remaining (14/18 day routine). Melanoma Stage 1 was found on my back in 2013 and was removed with a clean margin.

        However, this summer it returned on my chest, rather big at Stage 2A, requiring lymph node surgery under my neck and arm. My doctor recommended leukine and so far so good.

        I had some restless nights with aching bones the first few days but it has practically all subsided now. Fatigue is at times annoying but I try to go for walks and keep active. The itching and swelling went away; I used benedryl for a while and then started icing the area after the injection. It hasn't been a problem since.

        So, overall, I've found the leukine doable. I agreed to it because I didn't want to eer regret trying it down the road.

        Good luck, Gwen! 

        Will

         

        [Question for others: I will go on Medicare in February. I've only had a copay so far, but I'm wondering if that will continue on Medicare.]

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        willis
        Participant

        Hello Gwen,

        I've been on leukine for six months with seven more remaining (14/18 day routine). Melanoma Stage 1 was found on my back in 2013 and was removed with a clean margin.

        However, this summer it returned on my chest, rather big at Stage 2A, requiring lymph node surgery under my neck and arm. My doctor recommended leukine and so far so good.

        I had some restless nights with aching bones the first few days but it has practically all subsided now. Fatigue is at times annoying but I try to go for walks and keep active. The itching and swelling went away; I used benedryl for a while and then started icing the area after the injection. It hasn't been a problem since.

        So, overall, I've found the leukine doable. I agreed to it because I didn't want to eer regret trying it down the road.

        Good luck, Gwen! 

        Will

         

        [Question for others: I will go on Medicare in February. I've only had a copay so far, but I'm wondering if that will continue on Medicare.]

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        willis
        Participant

        Hello Gwen,

        I've been on leukine for six months with seven more remaining (14/18 day routine). Melanoma Stage 1 was found on my back in 2013 and was removed with a clean margin.

        However, this summer it returned on my chest, rather big at Stage 2A, requiring lymph node surgery under my neck and arm. My doctor recommended leukine and so far so good.

        I had some restless nights with aching bones the first few days but it has practically all subsided now. Fatigue is at times annoying but I try to go for walks and keep active. The itching and swelling went away; I used benedryl for a while and then started icing the area after the injection. It hasn't been a problem since.

        So, overall, I've found the leukine doable. I agreed to it because I didn't want to eer regret trying it down the road.

        Good luck, Gwen! 

        Will

         

        [Question for others: I will go on Medicare in February. I've only had a copay so far, but I'm wondering if that will continue on Medicare.]

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      lhaley
      Participant

      Gwen,

      I did leukine on a trial 4 years ago. It didn't work for me but when mine comes back it has been as single solid tumors, so maybe it did!!  I was a little achy, very itchy and had some bone pain. I worked the entire time as a special ed K teacher so it was not an easy job but very doable.  Itching at the injection site was my biggest issue.  Drinking gatorade actually helped with some of the aching. 

      Make sure that your insurance will cover the drug, otherwise it's between 20,000 – 30,000 a year!!

      Good luck!!  If you decide to go for it post again and I'm sure many of us can give you suggestions on how to help with the side effects.

      Linda

      Stage IV  since 06  NED for 2 weeks!!

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      makedoandmend
      Participant

      Gwen,

       I can really empathize with your situation.  I am also stage IIIC and have been offered a few options but I'm not sure what to do. Everyone is excited about BRAF but i don't think theres anything available at stage III, theres the ipi adjuvant trial but theres a placebo, and IL2 and Biochemo are options but if theres no clear metastaic disease to target are those options over agressive?  Watch and Wait scares me because the PET scan only catches the beast at a certain size. Is there something I'm missing?

      pat on li

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      makedoandmend
      Participant

      Gwen,

       I can really empathize with your situation.  I am also stage IIIC and have been offered a few options but I'm not sure what to do. Everyone is excited about BRAF but i don't think theres anything available at stage III, theres the ipi adjuvant trial but theres a placebo, and IL2 and Biochemo are options but if theres no clear metastaic disease to target are those options over agressive?  Watch and Wait scares me because the PET scan only catches the beast at a certain size. Is there something I'm missing?

      pat on li

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        Gwen in Maine
        Participant

        Pat,

        I know how you're feeling. At this point I've only been offered the Leukine treatment and to travel to DC for a vaccine (the trial you mentioned?) I'm not ready to travel at this time only to possibly get the placebo. These decisions are so stressful.

        Gwen

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        Gwen in Maine
        Participant

        Pat,

        I know how you're feeling. At this point I've only been offered the Leukine treatment and to travel to DC for a vaccine (the trial you mentioned?) I'm not ready to travel at this time only to possibly get the placebo. These decisions are so stressful.

        Gwen

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      King
      Participant

      Hi Gwen,

       

      I've done 12 months of Interferon and 12 months of Leukine.  I did the Leukine in a Phase II trial after a liver resection that rendered me NED at Stage IV.  The only side effects from the Leukine for me were the occasional bone burning and hives/itching at the injection site.  It was so doable especially when comparing it to Interferon.

       

      I went almost 2 years after completing the Leukine before experiencing another recurrence.

       

      It's so hard to determine what works and what doesn't when these drugs are taken when one is NED.

       

      Good luck in your decision.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Hi Gwen,

       

      I've done 12 months of Interferon and 12 months of Leukine.  I did the Leukine in a Phase II trial after a liver resection that rendered me NED at Stage IV.  The only side effects from the Leukine for me were the occasional bone burning and hives/itching at the injection site.  It was so doable especially when comparing it to Interferon.

       

      I went almost 2 years after completing the Leukine before experiencing another recurrence.

       

      It's so hard to determine what works and what doesn't when these drugs are taken when one is NED.

       

      Good luck in your decision.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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        Gwen in Maine
        Participant

        Thanks, King. I appreciate hearing your perspective.

        Gwen

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        Gwen in Maine
        Participant

        Thanks, King. I appreciate hearing your perspective.

        Gwen

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      TAC
      Participant

      I am Stage IIIB..have had 6 recurrences all within 1 1/2 inches of my original lesion on left side of face in sideburn. I took interferon for 4 1/2 months..had a recurrence; tried radiatrion…had a recurrence; tried a vaccine…had a recurrence. Have been on Leukine for 6 years off trial. Have had 3 recurrences while on it. All have been removed via surgery. Side effects are minimal…redness at injection site, itching also, some bone pain at end of 14 day cycle. That's it. Lots of controversy as to whethere or not it works. All I can say is that all of my recurrences have been removed via surgery (8 in all with 4 skin grafts) but so far melanoma has not gone to an organ. I classify this as a win.. If you do pursue Leukine, be sure your insurance will pay for it. Very expensive otherwise…$20,000/year.Best of luck.

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      TAC
      Participant

      I am Stage IIIB..have had 6 recurrences all within 1 1/2 inches of my original lesion on left side of face in sideburn. I took interferon for 4 1/2 months..had a recurrence; tried radiatrion…had a recurrence; tried a vaccine…had a recurrence. Have been on Leukine for 6 years off trial. Have had 3 recurrences while on it. All have been removed via surgery. Side effects are minimal…redness at injection site, itching also, some bone pain at end of 14 day cycle. That's it. Lots of controversy as to whethere or not it works. All I can say is that all of my recurrences have been removed via surgery (8 in all with 4 skin grafts) but so far melanoma has not gone to an organ. I classify this as a win.. If you do pursue Leukine, be sure your insurance will pay for it. Very expensive otherwise…$20,000/year.Best of luck.

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        Gwen in Maine
        Participant

        Thanks for writing, TAC. It sounds like you've been on quite a ride. I found out today that the Leukine treatment has been approved by my insurance (Cigna) so I guess I will give it a try. At this point, I'll be doing it for a year. I'm amazed you've been on it for 6 years. When do you expect to end the treatment?

        Gwen

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        Gwen in Maine
        Participant

        Thanks for writing, TAC. It sounds like you've been on quite a ride. I found out today that the Leukine treatment has been approved by my insurance (Cigna) so I guess I will give it a try. At this point, I'll be doing it for a year. I'm amazed you've been on it for 6 years. When do you expect to end the treatment?

        Gwen

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      dian in spokane
      Participant

      Hi Gwen,

       

      I am using Leukine in a different way than others here have used it (the common 2 wks on 2 wks off method) mine is part of a vaccine, and I only have shots once a month, so it's a different deal.

      I did do close to a year of interferon back in 03, and I can say that the effects I have from leukine are completely different. The site injection reaction is actually worse for me than it was for interferon, but in all other ways it is much easier than interferon.

      Again..this won't relate much to you, since it's an entirely different.

       

      dian

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      dian in spokane
      Participant

      Hi Gwen,

       

      I am using Leukine in a different way than others here have used it (the common 2 wks on 2 wks off method) mine is part of a vaccine, and I only have shots once a month, so it's a different deal.

      I did do close to a year of interferon back in 03, and I can say that the effects I have from leukine are completely different. The site injection reaction is actually worse for me than it was for interferon, but in all other ways it is much easier than interferon.

      Again..this won't relate much to you, since it's an entirely different.

       

      dian

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      killmel
      Participant

      Gwen,

       

      Someone posted today about leukine & a study.

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        Gwen in Maine
        Participant

        Thanks for the information.

        Gwen

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        jbergman
        Participant

        Bernhard is Stage IIIC and started leukine at Univ. Calif. San Francisco,  three days ago; radiation will begin on Monday, Jan. 24.  We will share whatever experiences, good or bad, surface.  

        I am thankful that there is an online community of folks who are also willing to share their experiences.

        Julia (former wife, now partner in retirement, and caregiver)

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        jbergman
        Participant

        Bernhard is Stage IIIC and started leukine at Univ. Calif. San Francisco,  three days ago; radiation will begin on Monday, Jan. 24.  We will share whatever experiences, good or bad, surface.  

        I am thankful that there is an online community of folks who are also willing to share their experiences.

        Julia (former wife, now partner in retirement, and caregiver)

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        Gwen in Maine
        Participant

        Hi Julia,

        You will find this is a great online community. It's definitely helped me to cope better.

        I'm just finishing my 3rd cycle of leukine (will go 2 weeks on, 2 weeks off through November) and it's definitely not bad. There are days, like today, when I wake up completely sore all over and itchy at the injection sites, but I can handle it and it feels like I'm doing what ever I can. If Bernhard's side effects are worse, there are people here who can suggest ways of coping with them.

        I hope the radiation goes smoothly.

        Gwen in Maine

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        Gwen in Maine
        Participant

        Hi Julia,

        You will find this is a great online community. It's definitely helped me to cope better.

        I'm just finishing my 3rd cycle of leukine (will go 2 weeks on, 2 weeks off through November) and it's definitely not bad. There are days, like today, when I wake up completely sore all over and itchy at the injection sites, but I can handle it and it feels like I'm doing what ever I can. If Bernhard's side effects are worse, there are people here who can suggest ways of coping with them.

        I hope the radiation goes smoothly.

        Gwen in Maine

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        jbergman
        Participant

        Bernhard is now experiencing some itching at the injection site – is there any particular cream or lotion to relieve this minor inconvenience?

         

        Many thanks for any suggestions!

         

        Julia

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        jbergman
        Participant

        Bernhard is now experiencing some itching at the injection site – is there any particular cream or lotion to relieve this minor inconvenience?

         

        Many thanks for any suggestions!

         

        Julia

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        Gwen in Maine
        Participant

        Hi Julia,

        I haven't used anything for the itching. It's just not bothering me that much although it can be annoying. Maybe someone else has some suggestions for you.

        Gwen

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        Gwen in Maine
        Participant

        Hi Julia,

        I haven't used anything for the itching. It's just not bothering me that much although it can be annoying. Maybe someone else has some suggestions for you.

        Gwen

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        Gwen in Maine
        Participant

        Thanks for the information.

        Gwen

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      killmel
      Participant

      Gwen,

       

      Someone posted today about leukine & a study.

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      LynnLuc
      Participant

      Hi Gwen, Mayo Clinic in Rochester initially wanted me to do them 14 days on and 14 days off after I had surg. and was made NED. I wasn't thrilled by the prospect and researched clinicial trials. I am stage 4 so I wanted to do something more agressive. After I was accepted in a trial  my Mayo onc said it was probably good I did the trial because Leukine wasn't shown to stop progression IF it was located in the lymph nodes. I don't know where she got her info…it's just what she told me….maybe since you are stage 3 it might be different…

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      LynnLuc
      Participant

      Hi Gwen, Mayo Clinic in Rochester initially wanted me to do them 14 days on and 14 days off after I had surg. and was made NED. I wasn't thrilled by the prospect and researched clinicial trials. I am stage 4 so I wanted to do something more agressive. After I was accepted in a trial  my Mayo onc said it was probably good I did the trial because Leukine wasn't shown to stop progression IF it was located in the lymph nodes. I don't know where she got her info…it's just what she told me….maybe since you are stage 3 it might be different…

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      LynnLuc
      Participant

      PS have you considered a vaccine trial…according to my onc there are 3 different ones going on in the US. I am in one at Moffitt and I am I not certain what the other ones are using. Mine uses anti PD-1  IV and 6 peptide injections every other week for two 12 week cycles and then booster IV's of the anti pd 1  every 3 months for 2 years at least-maybe longer is I remain NED. My trial is for stage 3 and stage 4 NED patients and Dr Jeffrey Weber is the onc doing it.

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      LynnLuc
      Participant

      PS have you considered a vaccine trial…according to my onc there are 3 different ones going on in the US. I am in one at Moffitt and I am I not certain what the other ones are using. Mine uses anti PD-1  IV and 6 peptide injections every other week for two 12 week cycles and then booster IV's of the anti pd 1  every 3 months for 2 years at least-maybe longer is I remain NED. My trial is for stage 3 and stage 4 NED patients and Dr Jeffrey Weber is the onc doing it.

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      Alicia15
      Participant

      Gwen,

      I am stage IV and I completed 2 years of Leukine, starting in 2005. Before starting Leukine I have had several reocurrances (lung, spine, small bowels) in a two year period which were surgically removed.

      I believe Leukine has helped me as I have been NED since I started with the injections. The treatment wasn't too bad for me, I even worked full time while I was on it. I experienced the redness and some fatigue on the second week of the 14 days cycle – but it was manageble.

      I hope it works for you as well, I am still NED. Best of luck,

      Alicia

       

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      Alicia15
      Participant

      Gwen,

      I am stage IV and I completed 2 years of Leukine, starting in 2005. Before starting Leukine I have had several reocurrances (lung, spine, small bowels) in a two year period which were surgically removed.

      I believe Leukine has helped me as I have been NED since I started with the injections. The treatment wasn't too bad for me, I even worked full time while I was on it. I experienced the redness and some fatigue on the second week of the 14 days cycle – but it was manageble.

      I hope it works for you as well, I am still NED. Best of luck,

      Alicia

       

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      Sharyn
      Participant

      Hi Gwen,

      I did Leukine (aka GM-CSF) from July 1/09 to Oct 16/09, at which time I was disqualified from the trial due to the discovery of brain mets. It's quite possible the mets were already in their infancy when I started the trial, and were too small to detect. Either way, my time on Leukine was short-lived. However, I was on it long enough to learn that it was a relatively easy treatment. I would get large welts at the injection sites which would recede after a few days, and some mild itching. Fatigue wasn't overwhelming, but I was a bit sluggish. in those 5 months, I didn't experience any reduction whatsoever, but rather growth.  But that's me. Other people have done well on it.  I just started compassionate use ipilimumab in Sept 2010, and I'm seeing great results so far. Good luck in your treatment decisions.  :>)

      Hugs

      Sharyn, Stage IV

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      Sharyn
      Participant

      Hi Gwen,

      I did Leukine (aka GM-CSF) from July 1/09 to Oct 16/09, at which time I was disqualified from the trial due to the discovery of brain mets. It's quite possible the mets were already in their infancy when I started the trial, and were too small to detect. Either way, my time on Leukine was short-lived. However, I was on it long enough to learn that it was a relatively easy treatment. I would get large welts at the injection sites which would recede after a few days, and some mild itching. Fatigue wasn't overwhelming, but I was a bit sluggish. in those 5 months, I didn't experience any reduction whatsoever, but rather growth.  But that's me. Other people have done well on it.  I just started compassionate use ipilimumab in Sept 2010, and I'm seeing great results so far. Good luck in your treatment decisions.  :>)

      Hugs

      Sharyn, Stage IV

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