New here, Stage IIIc – Leukine experience?

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 well

Caringly,

Mary

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 well

Caringly,

Mary

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!!

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!!

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

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

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

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

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.

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.

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

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

Gwen,

Someone posted today about leukine & a study.

Gwen,

Someone posted today about leukine & a study.

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…

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…

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.

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.

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

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

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

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