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.

Leukine therapy versus Interferon or Pegylated interferon

Forums General Melanoma Community Leukine therapy versus Interferon or Pegylated interferon

  • Post
    wpneuma
    Participant

    I am looking at my Immune modulator therapy to begin in the next few weeks.  Although the long term data is not as well established with Leukine therapy as it is with Interferon therapy, I am tempted to pursue the Leukine therapy due to the less serious side effects as compared to Interferon.  Has anyone had experience with the Leukine therapy, which consists of 14 days on 14 days off each month for one year?  The dose is a shot per day, self administered.

     

    Thanks Wayne

    I am looking at my Immune modulator therapy to begin in the next few weeks.  Although the long term data is not as well established with Leukine therapy as it is with Interferon therapy, I am tempted to pursue the Leukine therapy due to the less serious side effects as compared to Interferon.  Has anyone had experience with the Leukine therapy, which consists of 14 days on 14 days off each month for one year?  The dose is a shot per day, self administered.

     

    Thanks Wayne

    Loading spinner
Viewing 5 reply threads
  • Replies
      nickmac56
      Participant

      My wife (Stage 4) tried Leukine and was only able ot go about ten days before she got an all over body rash and itching that was intolerable, nothwithstanding benedryl and topical aids. Onc had her lay off for a bit, then tried it again, but could only go another 3 days. Others experience may vary. She had no problem with the daily shots, usually in her belly area and moved it around so no one area got too tender. We had no problem traveling or with TSA either.

       

      Nick

      Loading spinner
      nickmac56
      Participant

      My wife (Stage 4) tried Leukine and was only able ot go about ten days before she got an all over body rash and itching that was intolerable, nothwithstanding benedryl and topical aids. Onc had her lay off for a bit, then tried it again, but could only go another 3 days. Others experience may vary. She had no problem with the daily shots, usually in her belly area and moved it around so no one area got too tender. We had no problem traveling or with TSA either.

       

      Nick

      Loading spinner
      lhaley
      Participant

      Wayne,

      I did leukine in 06 as part of a trial. It was disclosed that I got the drug because I had a recurrance after the year was over and I wanted to make sure so I could make my next game plan.

      It was fairly tolerable as far as treatments go.  At the time I was a K Sp. Ed teacher with children with severe behavior issues. I was able to continue working with no problems. I would let the drug come to room temp. and put an ice pack on the area that I was going to inject. Then very slowly I would inject the area with a tiny needle. I would rotate between my arms, stomach and thighs. I would get huge red welts that were itchy but the slower you inject the less that happens.

      I drank plenty of gaterade. I was told by someone who had already done leukine that it would help keep me hydrated and keep down the bone pain. It worked.  I took Naxaproxine for the bone pain and would go to bed early.  I did get a strange side effect, I had many little cuts on my tongue and could not eat anything that had salt or spices. I haven't heard of anyone else with that side effect. I also had horrible hot flashes.  

      I have had several recurrances since then but all have been singular tumors and I've had surgery on each.

      Make sure that your insurance will cover it! It is not FDA approved for melanoma and trials have shown it to not make any significant difference so you might have a fight on your hands. In 06 the treatment would have cost approx $26,000.

      Let us know how it goes!

      Linda

      Stage IV since 06  stable

      Loading spinner
      lhaley
      Participant

      Wayne,

      I did leukine in 06 as part of a trial. It was disclosed that I got the drug because I had a recurrance after the year was over and I wanted to make sure so I could make my next game plan.

      It was fairly tolerable as far as treatments go.  At the time I was a K Sp. Ed teacher with children with severe behavior issues. I was able to continue working with no problems. I would let the drug come to room temp. and put an ice pack on the area that I was going to inject. Then very slowly I would inject the area with a tiny needle. I would rotate between my arms, stomach and thighs. I would get huge red welts that were itchy but the slower you inject the less that happens.

      I drank plenty of gaterade. I was told by someone who had already done leukine that it would help keep me hydrated and keep down the bone pain. It worked.  I took Naxaproxine for the bone pain and would go to bed early.  I did get a strange side effect, I had many little cuts on my tongue and could not eat anything that had salt or spices. I haven't heard of anyone else with that side effect. I also had horrible hot flashes.  

      I have had several recurrances since then but all have been singular tumors and I've had surgery on each.

      Make sure that your insurance will cover it! It is not FDA approved for melanoma and trials have shown it to not make any significant difference so you might have a fight on your hands. In 06 the treatment would have cost approx $26,000.

      Let us know how it goes!

      Linda

      Stage IV since 06  stable

      Loading spinner
      s Mom
      Participant

      My son is also facing this very same treatment issue.  He has been offered radiation, leukine, wait and see, or  interferon.  He has done quite a bit of research, has had many consultations, and is leaning towards interferon because of the possibility for complete remission (10%) and/or delay of recurrence.  He will probably be starting radiation this week at Mayo in Rochester (he had extracapsular extension and radiation will hopefully stop any local recurrences – there is consensus for this treatment).  He is only 31 and has 2 small children with 1 on the way – he's at Stage 3C.  His oncologist offered the MAGE 3 trial, but Jeff's tumor did not contain the mutation.  He'll probably start interferon in May after radiation (he's deciding right now which to do first).  Check out his story on the profile page.

      Good luck with your decision – it's a tough one.   There are many people on this forum with lots of information and experience, but ultimately, it comes down to which option you feel is best for you.  Stay strong :)

      Jeff's MOM

      Loading spinner
      s Mom
      Participant

      My son is also facing this very same treatment issue.  He has been offered radiation, leukine, wait and see, or  interferon.  He has done quite a bit of research, has had many consultations, and is leaning towards interferon because of the possibility for complete remission (10%) and/or delay of recurrence.  He will probably be starting radiation this week at Mayo in Rochester (he had extracapsular extension and radiation will hopefully stop any local recurrences – there is consensus for this treatment).  He is only 31 and has 2 small children with 1 on the way – he's at Stage 3C.  His oncologist offered the MAGE 3 trial, but Jeff's tumor did not contain the mutation.  He'll probably start interferon in May after radiation (he's deciding right now which to do first).  Check out his story on the profile page.

      Good luck with your decision – it's a tough one.   There are many people on this forum with lots of information and experience, but ultimately, it comes down to which option you feel is best for you.  Stay strong :)

      Jeff's MOM

      Loading spinner
Viewing 5 reply threads
  • 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.