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May 28, 2013 at 12:24 am #21316StevenParticipant
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.May 28, 2013 at 2:19 am #60948BNP68Participant
Thanks for posting Steve. I’m weighing some of the same issues right now so your post was very helpful.
BrianMay 28, 2013 at 2:25 am #60949Hstevens0072Participant
Thank you for sharing this. I did Ipilimumab but it doesn’t appear as if I responded, second set of scans in two weeks. So, I have been arming myself with information in order to make an informed choice – just in case. IL2 is on my short list.
HollyMay 28, 2013 at 12:22 pm #60950Catherine PooleKeymaster
I don’t think that IL2 has “gotten a bum rap.” In fact, it has been prescribed for many years routinely and our recent webinar with Dr. Rosenberg promoted its use as well. The issue is the toxicity related to its use, the hospitalization required (often ICU) and the results from the drug. Steven, you are one of the lucky ones so far, but as a patient advocate it is my job to report the failures as well as the successes. The melanoma research world has found so many wonderful new therapies that can given outpatient and not effect the quality of life of patients. IL2 has been around a very long time, and we applaud those who have had success with it but weigh it carefully with those who have not.May 29, 2013 at 7:47 pm #60951LucyGParticipant Hi,
I have done 26 – IL2 treatments since December. My melanoma specialist feels the IL2 treatments are helping me also. I go to UVA and see Dr Weiss. I had another meeting today and my CT scans look real good, no growth from the melanoma in my spleen and no other new melanoma’s have appeared. He feels I should not do anything and meet again in 2 months for blood tests, and another CT scan in August or September. So far the IL2 has been good for me too! Not so bad, if your Doctor approves it, providing your lungs, heart, bladder are in good shape. I am 59 years old. And I had melanoma in 1971 on my back. The melanoma was removed and left a large scar on my back and a skin graft on my leg. Since 1971, no other Melanoma issues until last April 2012, and I had melanoma Above my right breast, right lung and in my head, after all 3 melanoma’s were removed, melanoma showed up in my spleen. Which my oncologist sent me to UVA for the Melanoma specialist, who decided on the IL2. So glad to hear that IL2 is helping others as well!
Best of luck!
SharonMay 30, 2013 at 3:27 am #60952dallyup4Participant
Thx for sharing Steven. I decided to do the biochemo therapy in the beginning, I had seven small nodes in my lungs, 2 on my liver and one in my pelvis/groin. The treatment consisted of 2 immunotherapy drugs, IL2 being one of those and 3 chemo drugs all given at the same time. I was to be in the hospital for the treatments so I felt a little more comfortable with it.
The 1st treatment went ok but the second not so good, my blood pressure dropped to like 60/40 and they almost lost me. I had gone thru all the tests and seemed to be in perfect shape for this but I guess not. They decided I couldn’t handle it and started me on regular chemo.
I was very disappointed as I thought the IL2 was the best treatment at the time, this was 9/2010.
After 6 rounds of chemo the nodes had shrunk a little but I had gotten some brain mets, took care of those with gamma knife and 2 surgeries. Got into the Zelboraf trial and just pasted my 24 mo mark on Z and 9 mos NED.
I have often wondered why the Z is working so well for me and not others and I have often thought that it may just have been that initial jolt of IL2, even though I didn’t receive very much of it.
I was 55 at the time of that and in good health other than the melanoma.
Good luck to you, Susan dallyup4May 30, 2013 at 10:22 am #60953buffcodyParticipant
Really informative and potentially helpful posts. This is such an educational forum, graced with great contributions that have made my journey through the maze of metastatic melanoma so much easier. Thanks to Catherine and thanks to all the participants!
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