› Forums › General Melanoma Community › IL – 2 Question
- This topic has 15 replies, 4 voices, and was last updated 12 years, 9 months ago by
TSchulz.
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- March 14, 2012 at 3:09 pm
I did a course of IL – 2 in December. This was myu first treatment of any kind. I have lung nodules measuring 7 mm and smaller. I tolerated 8 bags week one and 5 bags week two.
I had a scan 6 weeks after treatment which showed stable disease and a scan 12 weeks after treatment which also showed stable disease.
My question is whether or not to do a second course of treatment or not.
I did a course of IL – 2 in December. This was myu first treatment of any kind. I have lung nodules measuring 7 mm and smaller. I tolerated 8 bags week one and 5 bags week two.
I had a scan 6 weeks after treatment which showed stable disease and a scan 12 weeks after treatment which also showed stable disease.
My question is whether or not to do a second course of treatment or not.
My doctor (Dutcher, St. Lukes Roosevelt in NYC) is recognized as one of the foremost experts in renal cell carcinoma, and also treats patients for melanoma. She has treated over 500 patients with high dose IL – 2. Her opinion is that I am a resoponder, that there is no data to show that doing a second course of treatment has proven benefit, and that I should scan in another 3 months.
I know many doctors recommend a second course as standard protocol. Does anyone know if there is data to show a second course of treatment has benefit? Thanks.
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- March 14, 2012 at 4:11 pm
ad2424,
I had two huge lung tumors last summer when my onc put me on HD-IL2 in 5/11. After the first course, one tumor shrunk and the other was stable, so I went for a second course of two cycles in 8/11. After that, the tumor that had shrunk continued to shrink but the other one started to grow again. Dr. Flaherty felt that since I was a mixed responder, I should not go thru with additional HD-IL2. Throughout the winter, the shrinking tumor has continued to shrink until the last scans, where it was stable.
Waiting for three months for another scan sounds reasonable given that you have stable disease. My experience demonstrated to me that IL2 has long lasting effect.
It sounds like your oncologist has quite a bit of experience but I can't think of a reason to not pop into MSK for a second opinion (other than cost, of course). The melanoma team there is one of the best.
IL2 treatments weren't as bad as what I was led to believe, but those four weeks of my life were definitely not my favorite. Congrats on your good results.
cltml
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- March 14, 2012 at 4:43 pm
Thanks for that feedback. I'm with you about the treatment not being as bad as I was led to believe.
MSK is my primary treatment center, and they do not believe in, or offer IL-2, so unfortuately they would not offer a meaningful opinion.
You were in my shoes, and Dr. Flaherty suggested a second course, and you did it. Did he offer any guidance about the pros and cons of the second round?
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- March 14, 2012 at 5:35 pm
Yes, the pros were that the one tumor might continue to shrink and the other might start to shrink.
The cons – two more weeks of toxic ooze going into my body.
After the second course and the next scans, it was clear that it was a mixed response and that I needed to move on to something else to attack the growing tumor. I was glad that I did it though. Don't want to check off a treatment until I'm sure it won't work.
cltml
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- March 15, 2012 at 2:03 am
Hi,
I’m treated at MSK also. I was told that they “outsource” their IL-2 patients to Yale New Haven. When I went to Yale, Dr. Sznol there was in constant contact w/my doc @ Sloan. I had some response from the 1st 2 weeks so I did 2 more. If I had continued responding, they were going to do an abbreviated 3rd round. We never got to that, as I stopped responding. The hospital is brand new and I found Dr. Sznol to be amazing. The nursing staff was amazing too. They also do clinical trials there. Maybe you’d want to consider a 2nd opinion @ Yale.
Hope this helps,
karen -
- March 15, 2012 at 2:03 am
Hi,
I’m treated at MSK also. I was told that they “outsource” their IL-2 patients to Yale New Haven. When I went to Yale, Dr. Sznol there was in constant contact w/my doc @ Sloan. I had some response from the 1st 2 weeks so I did 2 more. If I had continued responding, they were going to do an abbreviated 3rd round. We never got to that, as I stopped responding. The hospital is brand new and I found Dr. Sznol to be amazing. The nursing staff was amazing too. They also do clinical trials there. Maybe you’d want to consider a 2nd opinion @ Yale.
Hope this helps,
karen -
- March 15, 2012 at 2:03 am
Hi,
I’m treated at MSK also. I was told that they “outsource” their IL-2 patients to Yale New Haven. When I went to Yale, Dr. Sznol there was in constant contact w/my doc @ Sloan. I had some response from the 1st 2 weeks so I did 2 more. If I had continued responding, they were going to do an abbreviated 3rd round. We never got to that, as I stopped responding. The hospital is brand new and I found Dr. Sznol to be amazing. The nursing staff was amazing too. They also do clinical trials there. Maybe you’d want to consider a 2nd opinion @ Yale.
Hope this helps,
karen -
- March 14, 2012 at 5:35 pm
Yes, the pros were that the one tumor might continue to shrink and the other might start to shrink.
The cons – two more weeks of toxic ooze going into my body.
After the second course and the next scans, it was clear that it was a mixed response and that I needed to move on to something else to attack the growing tumor. I was glad that I did it though. Don't want to check off a treatment until I'm sure it won't work.
cltml
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- March 14, 2012 at 5:35 pm
Yes, the pros were that the one tumor might continue to shrink and the other might start to shrink.
The cons – two more weeks of toxic ooze going into my body.
After the second course and the next scans, it was clear that it was a mixed response and that I needed to move on to something else to attack the growing tumor. I was glad that I did it though. Don't want to check off a treatment until I'm sure it won't work.
cltml
-
- March 14, 2012 at 4:43 pm
Thanks for that feedback. I'm with you about the treatment not being as bad as I was led to believe.
MSK is my primary treatment center, and they do not believe in, or offer IL-2, so unfortuately they would not offer a meaningful opinion.
You were in my shoes, and Dr. Flaherty suggested a second course, and you did it. Did he offer any guidance about the pros and cons of the second round?
-
- March 14, 2012 at 4:43 pm
Thanks for that feedback. I'm with you about the treatment not being as bad as I was led to believe.
MSK is my primary treatment center, and they do not believe in, or offer IL-2, so unfortuately they would not offer a meaningful opinion.
You were in my shoes, and Dr. Flaherty suggested a second course, and you did it. Did he offer any guidance about the pros and cons of the second round?
-
- March 14, 2012 at 4:11 pm
ad2424,
I had two huge lung tumors last summer when my onc put me on HD-IL2 in 5/11. After the first course, one tumor shrunk and the other was stable, so I went for a second course of two cycles in 8/11. After that, the tumor that had shrunk continued to shrink but the other one started to grow again. Dr. Flaherty felt that since I was a mixed responder, I should not go thru with additional HD-IL2. Throughout the winter, the shrinking tumor has continued to shrink until the last scans, where it was stable.
Waiting for three months for another scan sounds reasonable given that you have stable disease. My experience demonstrated to me that IL2 has long lasting effect.
It sounds like your oncologist has quite a bit of experience but I can't think of a reason to not pop into MSK for a second opinion (other than cost, of course). The melanoma team there is one of the best.
IL2 treatments weren't as bad as what I was led to believe, but those four weeks of my life were definitely not my favorite. Congrats on your good results.
cltml
-
- March 14, 2012 at 4:11 pm
ad2424,
I had two huge lung tumors last summer when my onc put me on HD-IL2 in 5/11. After the first course, one tumor shrunk and the other was stable, so I went for a second course of two cycles in 8/11. After that, the tumor that had shrunk continued to shrink but the other one started to grow again. Dr. Flaherty felt that since I was a mixed responder, I should not go thru with additional HD-IL2. Throughout the winter, the shrinking tumor has continued to shrink until the last scans, where it was stable.
Waiting for three months for another scan sounds reasonable given that you have stable disease. My experience demonstrated to me that IL2 has long lasting effect.
It sounds like your oncologist has quite a bit of experience but I can't think of a reason to not pop into MSK for a second opinion (other than cost, of course). The melanoma team there is one of the best.
IL2 treatments weren't as bad as what I was led to believe, but those four weeks of my life were definitely not my favorite. Congrats on your good results.
cltml
-
- March 16, 2012 at 7:47 pm
My response to IL-2 was very similar to yours. I went through the treatment at the University of Washington, tolerating 14 and 13 doses. After my 12 week scan showed essentially stable disease with one tumor maybe 1mm larger she recommended against going through more IL-2. She believes those who are going to benefit the most from IL-2 will show a better response than just stable disease after the first 2 cycles. I couldn't find much data to support pushing for another round and we agreed to move on to a clinical trial.
I'm with you, I didn't find (or don't remember) the IL-2 torture test to be as bad as advertised. Waiting until your next scan to make a decision seems reasonable. It also allows you to do your homework about what you may want to consider as "Plan B" or get a real second opinion.
Good luck with it all. It is unfortunate that treatment options are not more clear for us all. Hopefully someday there will be a much straighter path to solving this problem.
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- March 16, 2012 at 7:47 pm
My response to IL-2 was very similar to yours. I went through the treatment at the University of Washington, tolerating 14 and 13 doses. After my 12 week scan showed essentially stable disease with one tumor maybe 1mm larger she recommended against going through more IL-2. She believes those who are going to benefit the most from IL-2 will show a better response than just stable disease after the first 2 cycles. I couldn't find much data to support pushing for another round and we agreed to move on to a clinical trial.
I'm with you, I didn't find (or don't remember) the IL-2 torture test to be as bad as advertised. Waiting until your next scan to make a decision seems reasonable. It also allows you to do your homework about what you may want to consider as "Plan B" or get a real second opinion.
Good luck with it all. It is unfortunate that treatment options are not more clear for us all. Hopefully someday there will be a much straighter path to solving this problem.
-
- March 16, 2012 at 7:47 pm
My response to IL-2 was very similar to yours. I went through the treatment at the University of Washington, tolerating 14 and 13 doses. After my 12 week scan showed essentially stable disease with one tumor maybe 1mm larger she recommended against going through more IL-2. She believes those who are going to benefit the most from IL-2 will show a better response than just stable disease after the first 2 cycles. I couldn't find much data to support pushing for another round and we agreed to move on to a clinical trial.
I'm with you, I didn't find (or don't remember) the IL-2 torture test to be as bad as advertised. Waiting until your next scan to make a decision seems reasonable. It also allows you to do your homework about what you may want to consider as "Plan B" or get a real second opinion.
Good luck with it all. It is unfortunate that treatment options are not more clear for us all. Hopefully someday there will be a much straighter path to solving this problem.
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