Leukine therapy versus Interferon or Pegylated interferon

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

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

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

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

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

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