Melanoma and Leukine

Maggie_Mae

Hi,
I was just wondering if anybody has recently been put on the Drug Leukine for their Melanoma. I was diagnosed in October of 2009 with Stage 3 Melanoma. It was found with a bothersome mole on my back. Ok, when I say bothersome, I mean it was raised and irritated by my bra strap. I work at a hospital so I went by one of our Surgeons and asked if he would just cut it off. Well needless to say it turned up cancerous. I underwent a sentinal node biopsy, which in turn led to a radical disection on my lymph nodes under my left arm. At first my Oncologist was going to put me on Interferon but after talking with a doctor at Mayo Clinic change his mind to Leukine (which isn't FDA approved to treat Leukine yet) I am almost a year and a half into my 3 year journey on this medication and with my last doctor appointment my Oncologist has now said that what was a 3 year journey is now a life long journey. When I am done with the 3 years of what he says is high dose treatment I then have to go through maintanance doses the rest of my life. Ok, I thought 3 years was a long time to so called "place my life on hold" but now to do this my whole life is very bothersome. I am just wondering if anybody is on it and if they are going though the same worries as I am.

Pardoned

stage 3c
Hi Maggie,
I am stage 3c and three months into my Leukine treatment. I was told I would be doing this two weeks on, two weeks off for one year. There was talk of extending it to three years, but I've never heard lower maintenance doses for the rest of my life. How are you handling the Leukine? I have to confess I am feeling pretty good most of the time. I have been on medical leave the last two months, but I am going to go back to work, because I think I can handle it just fine. Have you had any ct/pet scans over the last 18 months that have revealed more melanoma? When did you first hear maintenance Leukine forever? Thanks for sharing your story!
Pardoned

Maggie_Mae

Pardoned said:

stage 3c
Hi Maggie,
I am stage 3c and three months into my Leukine treatment. I was told I would be doing this two weeks on, two weeks off for one year. There was talk of extending it to three years, but I've never heard lower maintenance doses for the rest of my life. How are you handling the Leukine? I have to confess I am feeling pretty good most of the time. I have been on medical leave the last two months, but I am going to go back to work, because I think I can handle it just fine. Have you had any ct/pet scans over the last 18 months that have revealed more melanoma? When did you first hear maintenance Leukine forever? Thanks for sharing your story!
Pardoned

Maintenance Doses
Hello Pardoned,
When I first got put on Leukine 18 months ago they said the studies have been done with the one year of the medication, but my physician said that he talked with a doctor that was running the trial at Mayo and said that a 3 year treatment plan had shown more success. I had my last doctors appointment in January 2011 and at that appointment I had alot of questions because I wanted to know about if I can get pregnant on the medication or when I could start trying after I am finished and that when he called me back after talking with this physicain again and told me that I would be taking a huge risk getting pregnant on this medication because it's never been tested on humans or animals. Also that the Physican and Mayo recommended maintance dose when I finish the 3 year course and recommended that I don't have any more children since they don't know what the effects have been on my body let alone reproductive organs to concieve a child. I have to say I was a little crushed because I am only 25 and I was not told this information when I started the medication and I am going to be getting married in June. It was a little hard to swallow.

To answer your other questions, yes I have had my second PET Scan also in January and it came back clean. That was a huge weight off my family and I. I am handling the Leukine fairly well. I quess the biggest things that I deal with is tiredness and also nausea. Every now and then ( about 4 times in past 18 months) I have been laid up with severe body aches from the over-stimulation of WBC's in the bones. Other than that Not too bad.

I am glad you have not had too many complications with your injections. I couldn't imagine going through the Interferon and the side effects that brings on. One of the reasons I choose to give this treatment a shot.

Pizazzy

Maggie_Mae said:

Maintenance Doses
Hello Pardoned,
When I first got put on Leukine 18 months ago they said the studies have been done with the one year of the medication, but my physician said that he talked with a doctor that was running the trial at Mayo and said that a 3 year treatment plan had shown more success. I had my last doctors appointment in January 2011 and at that appointment I had alot of questions because I wanted to know about if I can get pregnant on the medication or when I could start trying after I am finished and that when he called me back after talking with this physicain again and told me that I would be taking a huge risk getting pregnant on this medication because it's never been tested on humans or animals. Also that the Physican and Mayo recommended maintance dose when I finish the 3 year course and recommended that I don't have any more children since they don't know what the effects have been on my body let alone reproductive organs to concieve a child. I have to say I was a little crushed because I am only 25 and I was not told this information when I started the medication and I am going to be getting married in June. It was a little hard to swallow.

To answer your other questions, yes I have had my second PET Scan also in January and it came back clean. That was a huge weight off my family and I. I am handling the Leukine fairly well. I quess the biggest things that I deal with is tiredness and also nausea. Every now and then ( about 4 times in past 18 months) I have been laid up with severe body aches from the over-stimulation of WBC's in the bones. Other than that Not too bad.

I am glad you have not had too many complications with your injections. I couldn't imagine going through the Interferon and the side effects that brings on. One of the reasons I choose to give this treatment a shot.

Melanoma IV & Leukine Side Effects
I had Melanoma IV in my ear canal. Admittedly rare, it was treated at Mayo first to get the surrounding area removed and then again a year later when a lymph node gave trouble in my neck. At that time, Mayo determined the melanoma had essentially "exploded like bird shot" in my neck.
I also had a sarcoma tumor in my thigh, so that was removed as "too good of a place for more cancer to grow."
So, then it was the Radiation and now Leukine.
I've been on it for 4 months so far. Side effects: pain and muscle aches in the thigh making it hard to lift my thigh up to do such as dress & get into a car. This is perhaps due to Leukine going to "weakest part of your body" to make it immune. I'm told it will continue as long as on Leukine. Now have Motrin Rx to take care of that pain but u must eat before taking that. Another side effect: big welts at injection sites that itch like "crazy." Finally now maybe have solution: take Hydroxide for itch at night and use itch stopper machine. You can see this machine at www.theitchstopper.com. I hope this continues to work at it is this month: pretty good.
Good luck for all of you with Leukine side effects.