› Forums › General Melanoma Community › My IL-2 story
- This topic has 6 replies, 2 voices, and was last updated 10 years, 11 months ago by jcmp.
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- May 28, 2013 at 12:30 am
I'm telling my experience in the hope that it can help others. It took me a year and a half to get the courage/strength (mental) to write this.
In 1994, I had a mole removed from my back which was determined to be melanoma. I had a WLE but no treatment. In June 2011, I had a funny looking mole on my chest removed which was metastatic melanoma. Through VAT, I had a portion of my lung removed in July 2011.
I'm telling my experience in the hope that it can help others. It took me a year and a half to get the courage/strength (mental) to write this.
In 1994, I had a mole removed from my back which was determined to be melanoma. I had a WLE but no treatment. In June 2011, I had a funny looking mole on my chest removed which was metastatic melanoma. Through VAT, I had a portion of my lung removed in July 2011.
I began to research adjuvant clinical trials. I was considering a trial with Dr. Webber. At my first three month scan on October 20, nodules were found throughout my lungs. So much for an adjuvant trial. They were all very small, measuring less than 1 cm. Since they were not big enough for me to qualify for a clinical trial, my choices were IPI (20% 5+ year survival in latest stats), IL-2 (stats below), or Zelboraf. I chose IPI but decided to scan again in one month, because after discussions with my doctor, we wanted to make sure they were viable and really growing.
The November scan showed some minor growth and so it was time to begin. I changed my mind though. I decided to first go with IL – 2.
There were a few reasons I made this decision. (a) I was otherwise very healthy and in good shape (51 y/o, 5’8”, 150 lbs, running 2 miles a day). (b) The nodules were small and growing very slowly. (c) There was belief among experts that one therapy might help a subsequent therapy. (d) Finally, I wanted as many chances to kill this as possible. As a noted melanoma oncologist told me at the time: High-dose IL-2 is still considered as a first therapy in this situation (it can eradicate disease, it doesn’t burn any bridges, and appears to make subsequent immunotherapies work better).
I knew the treatment would be rough, but I also knew that I was in good hands. Dr. Janice Dutcher in New York had done more of this type of treatment than anyone else in the country. IL-2 has a 6% complete response and 10% additional partial response (http://www.ncbi.nlm.nih.gov/pubmed/10685652). Not great odds, but again I wanted as many chances to kill this as possible.
I suffered through three week-long stays in the hospital (Monday through Friday actually). After staying home one week after each week in the hospital, I was able to go back to work. It took a while but I am back to running 2 miles a day.
The good news, for now at least, is that my nodules have been stable since then. That makes about a year and a half. So, maybe I'll get a few more months of stability, maybe a few more years, or maybe my next scan will show the stability has faded. My main reason for writing this is because I think IL-2 has a bit of a bum rap. Yes it is harsh. But for those in certain circumstances such as me, it was not an unreasonable step as a first option.
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- May 28, 2013 at 2:14 pm
Thanks for posting this. Although there are new therapies out now, the fact of the matter is that the efficacy rate (other than Zelboraf) is pretty low. And, when Zelboraf stops working, it really stops working usually not giving the patient the opportunity to try another therapy.
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- May 28, 2013 at 2:14 pm
Thanks for posting this. Although there are new therapies out now, the fact of the matter is that the efficacy rate (other than Zelboraf) is pretty low. And, when Zelboraf stops working, it really stops working usually not giving the patient the opportunity to try another therapy.
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- May 28, 2013 at 2:14 pm
Thanks for posting this. Although there are new therapies out now, the fact of the matter is that the efficacy rate (other than Zelboraf) is pretty low. And, when Zelboraf stops working, it really stops working usually not giving the patient the opportunity to try another therapy.
Tagged: cutaneous melanoma
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