› Forums › Cutaneous Melanoma Community › IL-2
- This topic has 33 replies, 8 voices, and was last updated 8 years, 10 months ago by
JoshF.
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- June 23, 2015 at 7:09 pm
My husband had 4 rounds of Yervoy treatment and now he has progression in the way of additional subcutaneous nodules and a tumor in his stomach. One of the four potential treatments is IL-2. He had SRS in January for two brain mets so it wasn't an option before now. Has anyone else gone through IL-2? How many rounds? We were told he'd be hospitalized in ICU for a week with each treatment but wondering how bad the side effects can be, will he be able to resume activity the following week? How long did the side effects last. Thank you in advance!
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- June 23, 2015 at 9:25 pm
Mom2Addy,
No doubt about it, IL-2 is a tough treatment. Having said that it is still on my short list of things to try if I do progress down the road. As tough as it is I don't know of many long term side effects. You really do want to get a physician that has a lot of experience with it if you do decide to go that route. We have a member, Josh, that did a trial with IL-2 and Ipi and had great results.
I would agree with the anonymous poster above in that personally I would look for a good quality trial or start a anti-PD1 before I would do IL-2. Have you already tried a Anti-PD1 drug?
Jerry put together a great run down of his IL-2 experience here:
http://www.melanoma.org/community/profiles/jerryfromfauq
As you can tell from his accounts it is pretty tough. Good luck to you.
Brian
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- June 23, 2015 at 10:03 pm
I did IL 2 last September and another round in January. One week on, one week off, and one week on. You have to be pretty healthy to get it. Had an stress test and lung function test before treatment started. Also had to have a central line put into my neck each week. You receive drug every 8 hours for 5 days. You may skip a dose if issues come up. I had a total of 10 bags first week, 9 bags second week, 7 bags third week and 6 bags 4th week. Side effects were itchy rash, diarrhea, extreme fatigue, body aches, and nausea. I really didn't start feeling like my old self for about a month after. I didn't have to go back to work and I don't think I could have. Had scans 6 weeks after and did get some shrinkage in sub q and adrenal mets. Was suppose to get another round in December but caught a cold so had to postpone it til January.
My disease is pretty much stable except adrenal met started to grow. It's a tough treatment and I don't regret it at all. I wanted to do it while I was healthy because when it works, it works. I wasn't in the ICU, but was on a monitor and had my own nurse. My facility was great and my doctor had to approve every dose beforehand. Good luck to you and your husband! Becky
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- June 23, 2015 at 10:03 pm
I did IL 2 last September and another round in January. One week on, one week off, and one week on. You have to be pretty healthy to get it. Had an stress test and lung function test before treatment started. Also had to have a central line put into my neck each week. You receive drug every 8 hours for 5 days. You may skip a dose if issues come up. I had a total of 10 bags first week, 9 bags second week, 7 bags third week and 6 bags 4th week. Side effects were itchy rash, diarrhea, extreme fatigue, body aches, and nausea. I really didn't start feeling like my old self for about a month after. I didn't have to go back to work and I don't think I could have. Had scans 6 weeks after and did get some shrinkage in sub q and adrenal mets. Was suppose to get another round in December but caught a cold so had to postpone it til January.
My disease is pretty much stable except adrenal met started to grow. It's a tough treatment and I don't regret it at all. I wanted to do it while I was healthy because when it works, it works. I wasn't in the ICU, but was on a monitor and had my own nurse. My facility was great and my doctor had to approve every dose beforehand. Good luck to you and your husband! Becky
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- June 23, 2015 at 10:03 pm
I did IL 2 last September and another round in January. One week on, one week off, and one week on. You have to be pretty healthy to get it. Had an stress test and lung function test before treatment started. Also had to have a central line put into my neck each week. You receive drug every 8 hours for 5 days. You may skip a dose if issues come up. I had a total of 10 bags first week, 9 bags second week, 7 bags third week and 6 bags 4th week. Side effects were itchy rash, diarrhea, extreme fatigue, body aches, and nausea. I really didn't start feeling like my old self for about a month after. I didn't have to go back to work and I don't think I could have. Had scans 6 weeks after and did get some shrinkage in sub q and adrenal mets. Was suppose to get another round in December but caught a cold so had to postpone it til January.
My disease is pretty much stable except adrenal met started to grow. It's a tough treatment and I don't regret it at all. I wanted to do it while I was healthy because when it works, it works. I wasn't in the ICU, but was on a monitor and had my own nurse. My facility was great and my doctor had to approve every dose beforehand. Good luck to you and your husband! Becky
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- June 23, 2015 at 9:25 pm
Mom2Addy,
No doubt about it, IL-2 is a tough treatment. Having said that it is still on my short list of things to try if I do progress down the road. As tough as it is I don't know of many long term side effects. You really do want to get a physician that has a lot of experience with it if you do decide to go that route. We have a member, Josh, that did a trial with IL-2 and Ipi and had great results.
I would agree with the anonymous poster above in that personally I would look for a good quality trial or start a anti-PD1 before I would do IL-2. Have you already tried a Anti-PD1 drug?
Jerry put together a great run down of his IL-2 experience here:
http://www.melanoma.org/community/profiles/jerryfromfauq
As you can tell from his accounts it is pretty tough. Good luck to you.
Brian
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- June 23, 2015 at 9:25 pm
Mom2Addy,
No doubt about it, IL-2 is a tough treatment. Having said that it is still on my short list of things to try if I do progress down the road. As tough as it is I don't know of many long term side effects. You really do want to get a physician that has a lot of experience with it if you do decide to go that route. We have a member, Josh, that did a trial with IL-2 and Ipi and had great results.
I would agree with the anonymous poster above in that personally I would look for a good quality trial or start a anti-PD1 before I would do IL-2. Have you already tried a Anti-PD1 drug?
Jerry put together a great run down of his IL-2 experience here:
http://www.melanoma.org/community/profiles/jerryfromfauq
As you can tell from his accounts it is pretty tough. Good luck to you.
Brian
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- June 23, 2015 at 10:19 pm
Like others have said il-2 is the rough standard of treatment that we used to have. In about the 8% that responded to it though had usually very long term response. You really need a nurse and doc very experienced in it. Have you thought doing dr Rosenberg til treatment? It usually involves il-2. So rougher than standard il-2 because of the til but depending on where you get the data its roughly a 50% response. Granted I haven't seen that broken down by stage. There are a few places in the states now that are doing it. But it can be a life threatening treatment.
Also other trials for those of us who standard meds failed us but as I e found they are extremely hard to get into because too few slots and way too many people.
Artie
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- June 23, 2015 at 10:19 pm
Like others have said il-2 is the rough standard of treatment that we used to have. In about the 8% that responded to it though had usually very long term response. You really need a nurse and doc very experienced in it. Have you thought doing dr Rosenberg til treatment? It usually involves il-2. So rougher than standard il-2 because of the til but depending on where you get the data its roughly a 50% response. Granted I haven't seen that broken down by stage. There are a few places in the states now that are doing it. But it can be a life threatening treatment.
Also other trials for those of us who standard meds failed us but as I e found they are extremely hard to get into because too few slots and way too many people.
Artie
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- June 23, 2015 at 10:19 pm
Like others have said il-2 is the rough standard of treatment that we used to have. In about the 8% that responded to it though had usually very long term response. You really need a nurse and doc very experienced in it. Have you thought doing dr Rosenberg til treatment? It usually involves il-2. So rougher than standard il-2 because of the til but depending on where you get the data its roughly a 50% response. Granted I haven't seen that broken down by stage. There are a few places in the states now that are doing it. But it can be a life threatening treatment.
Also other trials for those of us who standard meds failed us but as I e found they are extremely hard to get into because too few slots and way too many people.
Artie
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- June 23, 2015 at 11:09 pm
Many thanks everyone! Artie, I am not familiar with TIL so we will look in to it. My husband is fit and healthy so it may be that now is the best time to try it.. One of our Doc's said its the only curative therapy and when you have a six year old miracle baby, cure is the goal.
Artie, I've followed your journey since the first of the year and appreciate your openness for those of us new to stage iv.
I do wish everyone the best outcome in whatever path they choose! Prayers for all.
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- June 23, 2015 at 11:09 pm
Many thanks everyone! Artie, I am not familiar with TIL so we will look in to it. My husband is fit and healthy so it may be that now is the best time to try it.. One of our Doc's said its the only curative therapy and when you have a six year old miracle baby, cure is the goal.
Artie, I've followed your journey since the first of the year and appreciate your openness for those of us new to stage iv.
I do wish everyone the best outcome in whatever path they choose! Prayers for all.
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- June 23, 2015 at 11:09 pm
Many thanks everyone! Artie, I am not familiar with TIL so we will look in to it. My husband is fit and healthy so it may be that now is the best time to try it.. One of our Doc's said its the only curative therapy and when you have a six year old miracle baby, cure is the goal.
Artie, I've followed your journey since the first of the year and appreciate your openness for those of us new to stage iv.
I do wish everyone the best outcome in whatever path they choose! Prayers for all.
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- June 24, 2015 at 12:42 am
IMHO – IL-2 is still around because if you happen to be in the small percentage with a complete response, there is a very good chance to have a durable remission.
I am NED 5 years and got my onc. to admit I am probably "cured" from this thing. He had his fingers crossed and didn't want me to stop follow up.
I had 23 bags of IL-2. If it works you will know quickly. If not, you recover quickly and can move on to other treatments. Tough but doable especially if in good health. IL-2 may not work but still may have immunostimulatory benefits long after to enhance any other treatments.
Read my posts in May & June 2010. I have photos as well. Lots of good tips to make it through. It is the worst thing cancer patients are put through, but once the drug is stopped, you have a quick recovery. I took 1 month off. I felt OK a week or two after I was finished.
So far nothing can beat the durable remissions with IL-2, but there are some doing well with Yervoy, just not for everyone.
Best of luck,
Kim
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- June 24, 2015 at 12:42 am
IMHO – IL-2 is still around because if you happen to be in the small percentage with a complete response, there is a very good chance to have a durable remission.
I am NED 5 years and got my onc. to admit I am probably "cured" from this thing. He had his fingers crossed and didn't want me to stop follow up.
I had 23 bags of IL-2. If it works you will know quickly. If not, you recover quickly and can move on to other treatments. Tough but doable especially if in good health. IL-2 may not work but still may have immunostimulatory benefits long after to enhance any other treatments.
Read my posts in May & June 2010. I have photos as well. Lots of good tips to make it through. It is the worst thing cancer patients are put through, but once the drug is stopped, you have a quick recovery. I took 1 month off. I felt OK a week or two after I was finished.
So far nothing can beat the durable remissions with IL-2, but there are some doing well with Yervoy, just not for everyone.
Best of luck,
Kim
-
- June 24, 2015 at 12:42 am
IMHO – IL-2 is still around because if you happen to be in the small percentage with a complete response, there is a very good chance to have a durable remission.
I am NED 5 years and got my onc. to admit I am probably "cured" from this thing. He had his fingers crossed and didn't want me to stop follow up.
I had 23 bags of IL-2. If it works you will know quickly. If not, you recover quickly and can move on to other treatments. Tough but doable especially if in good health. IL-2 may not work but still may have immunostimulatory benefits long after to enhance any other treatments.
Read my posts in May & June 2010. I have photos as well. Lots of good tips to make it through. It is the worst thing cancer patients are put through, but once the drug is stopped, you have a quick recovery. I took 1 month off. I felt OK a week or two after I was finished.
So far nothing can beat the durable remissions with IL-2, but there are some doing well with Yervoy, just not for everyone.
Best of luck,
Kim
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- June 24, 2015 at 11:56 am
Actually some don't recover quickly from IL2 and are left too sick to try other treatments. Less than 6% get a good response and it is still around because of big business. The new treatments have long time responses, even the braf! Try the new treatments before the old.
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- June 24, 2015 at 11:56 am
Actually some don't recover quickly from IL2 and are left too sick to try other treatments. Less than 6% get a good response and it is still around because of big business. The new treatments have long time responses, even the braf! Try the new treatments before the old.
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- June 24, 2015 at 11:56 am
Actually some don't recover quickly from IL2 and are left too sick to try other treatments. Less than 6% get a good response and it is still around because of big business. The new treatments have long time responses, even the braf! Try the new treatments before the old.
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- June 24, 2015 at 5:00 pm
I don't have much to add here and I won't go into any detail about how many bags I had, etc because it really doesn't matter. There are people who had a low number of "bags" (doses) and got that coveted long term remission, and those who had lots of doses and got no response, so the number of doses doesn't really mean much- it's the response (or lack of) that matters.
I started IL-2 in Dec 2012 and my regimen was one week on, one week off, one week on, 6-8 weeks of and a re-check scan. I completed 3 cycles, did get a good response, but new mets began to grow shortly after I finished. I will agree that while you're there getting it- it's very difficult, but I also recovered relatively quickly. I felt pretty normal within a week each time, though it was probably close to 2 weeks before I was "completely" back energy-wise. I think most people recover pretty quickly, but I'm sure there are some that take longer.
I will agree with other posters that you really need to be in the care not only of specialists, but of specialist with experience with IL-2 if you're going to opt for this. I'm sure you've been informed of all the possible side effects and the hospital stays, etc and it is ultimately your choice whether or not to move forward. Regarding patients being too sick to try other therapies after- I'm assuming this is in reference to patients who progress on IL-2 and this is where doctor experience comes in. Scans should be completed within a relatively short time fram after each course. If progression is seen, no more IL-2- time for something else. If you don't check or keep going, then yes, you could easily end up in a situation where it might be too late for other therapies.
Also, yes, there is a low long term response rate, but the same is true for Ippi (only slightly better in that regard) and the data on the BRAF and combo meds are all over the chart regarding how long they work. Every patient is different and every patient responds differently to each therapy. Go in with as much information as you can, but you never know until you try it what your side effects will be or if it will work for you.
Personally, I started with IL-2 (good, but transient effect), then did Ipi/radiation/GM-CSF (absolutely no effect), then the BRAF/MEK combo (failed miserably, by the way), and have been on Keytruda (anti-PD-1) for one year. I do have to say that the PD-1 is my current favorite, but that's because it's actually working and I have zero side effects from it. I am not you, though, or anyone else. Some have side effects from the PD-1, some have great success with Ipi, etc. Every case is different. I don't regret anything I've done (except perhaps the combo- which I think was a waste of time for me). I made my decisions (except for the combo- that was just the last option at the time) based on what I felt was the best coice.
I won't say that IL-2 is better than the other immunotherapies (and there really isn't enough long term data to fully ellucidate the long term responses to these yet) but I won't say that it should be tossed out the window either. It is very unpleasent, but it's still a valid option. I think every person is well within their rights to choose what they think is best. We have the most data on IL-2 and we know that (yes, a small fraction) patients have done remarkably well with it, but the same can also be said for the other immunotherapies- small fractions, though I will admit that the overall response rates have been improving with the newer therapies.
Best of luck with making your decision and whichever way you go, I wish you the best
-Eva
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- June 24, 2015 at 5:00 pm
I don't have much to add here and I won't go into any detail about how many bags I had, etc because it really doesn't matter. There are people who had a low number of "bags" (doses) and got that coveted long term remission, and those who had lots of doses and got no response, so the number of doses doesn't really mean much- it's the response (or lack of) that matters.
I started IL-2 in Dec 2012 and my regimen was one week on, one week off, one week on, 6-8 weeks of and a re-check scan. I completed 3 cycles, did get a good response, but new mets began to grow shortly after I finished. I will agree that while you're there getting it- it's very difficult, but I also recovered relatively quickly. I felt pretty normal within a week each time, though it was probably close to 2 weeks before I was "completely" back energy-wise. I think most people recover pretty quickly, but I'm sure there are some that take longer.
I will agree with other posters that you really need to be in the care not only of specialists, but of specialist with experience with IL-2 if you're going to opt for this. I'm sure you've been informed of all the possible side effects and the hospital stays, etc and it is ultimately your choice whether or not to move forward. Regarding patients being too sick to try other therapies after- I'm assuming this is in reference to patients who progress on IL-2 and this is where doctor experience comes in. Scans should be completed within a relatively short time fram after each course. If progression is seen, no more IL-2- time for something else. If you don't check or keep going, then yes, you could easily end up in a situation where it might be too late for other therapies.
Also, yes, there is a low long term response rate, but the same is true for Ippi (only slightly better in that regard) and the data on the BRAF and combo meds are all over the chart regarding how long they work. Every patient is different and every patient responds differently to each therapy. Go in with as much information as you can, but you never know until you try it what your side effects will be or if it will work for you.
Personally, I started with IL-2 (good, but transient effect), then did Ipi/radiation/GM-CSF (absolutely no effect), then the BRAF/MEK combo (failed miserably, by the way), and have been on Keytruda (anti-PD-1) for one year. I do have to say that the PD-1 is my current favorite, but that's because it's actually working and I have zero side effects from it. I am not you, though, or anyone else. Some have side effects from the PD-1, some have great success with Ipi, etc. Every case is different. I don't regret anything I've done (except perhaps the combo- which I think was a waste of time for me). I made my decisions (except for the combo- that was just the last option at the time) based on what I felt was the best coice.
I won't say that IL-2 is better than the other immunotherapies (and there really isn't enough long term data to fully ellucidate the long term responses to these yet) but I won't say that it should be tossed out the window either. It is very unpleasent, but it's still a valid option. I think every person is well within their rights to choose what they think is best. We have the most data on IL-2 and we know that (yes, a small fraction) patients have done remarkably well with it, but the same can also be said for the other immunotherapies- small fractions, though I will admit that the overall response rates have been improving with the newer therapies.
Best of luck with making your decision and whichever way you go, I wish you the best
-Eva
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- June 24, 2015 at 5:00 pm
I don't have much to add here and I won't go into any detail about how many bags I had, etc because it really doesn't matter. There are people who had a low number of "bags" (doses) and got that coveted long term remission, and those who had lots of doses and got no response, so the number of doses doesn't really mean much- it's the response (or lack of) that matters.
I started IL-2 in Dec 2012 and my regimen was one week on, one week off, one week on, 6-8 weeks of and a re-check scan. I completed 3 cycles, did get a good response, but new mets began to grow shortly after I finished. I will agree that while you're there getting it- it's very difficult, but I also recovered relatively quickly. I felt pretty normal within a week each time, though it was probably close to 2 weeks before I was "completely" back energy-wise. I think most people recover pretty quickly, but I'm sure there are some that take longer.
I will agree with other posters that you really need to be in the care not only of specialists, but of specialist with experience with IL-2 if you're going to opt for this. I'm sure you've been informed of all the possible side effects and the hospital stays, etc and it is ultimately your choice whether or not to move forward. Regarding patients being too sick to try other therapies after- I'm assuming this is in reference to patients who progress on IL-2 and this is where doctor experience comes in. Scans should be completed within a relatively short time fram after each course. If progression is seen, no more IL-2- time for something else. If you don't check or keep going, then yes, you could easily end up in a situation where it might be too late for other therapies.
Also, yes, there is a low long term response rate, but the same is true for Ippi (only slightly better in that regard) and the data on the BRAF and combo meds are all over the chart regarding how long they work. Every patient is different and every patient responds differently to each therapy. Go in with as much information as you can, but you never know until you try it what your side effects will be or if it will work for you.
Personally, I started with IL-2 (good, but transient effect), then did Ipi/radiation/GM-CSF (absolutely no effect), then the BRAF/MEK combo (failed miserably, by the way), and have been on Keytruda (anti-PD-1) for one year. I do have to say that the PD-1 is my current favorite, but that's because it's actually working and I have zero side effects from it. I am not you, though, or anyone else. Some have side effects from the PD-1, some have great success with Ipi, etc. Every case is different. I don't regret anything I've done (except perhaps the combo- which I think was a waste of time for me). I made my decisions (except for the combo- that was just the last option at the time) based on what I felt was the best coice.
I won't say that IL-2 is better than the other immunotherapies (and there really isn't enough long term data to fully ellucidate the long term responses to these yet) but I won't say that it should be tossed out the window either. It is very unpleasent, but it's still a valid option. I think every person is well within their rights to choose what they think is best. We have the most data on IL-2 and we know that (yes, a small fraction) patients have done remarkably well with it, but the same can also be said for the other immunotherapies- small fractions, though I will admit that the overall response rates have been improving with the newer therapies.
Best of luck with making your decision and whichever way you go, I wish you the best
-Eva
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- June 24, 2015 at 9:47 pm
It was rough. I had one cycle because I did it in combo trial with ipi. I did 11 of 12 bags each week and really not sure what response was as ipi started working for me fairly quick. I also had to have another surgery as I never had clear margins and onc thinks the surgical area did get perfusion. Essentially there was no immune response in surgical area due to healing. All that being said, I'd do it again if I had to but would go to PD-1 first.
Josh
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- June 24, 2015 at 9:47 pm
It was rough. I had one cycle because I did it in combo trial with ipi. I did 11 of 12 bags each week and really not sure what response was as ipi started working for me fairly quick. I also had to have another surgery as I never had clear margins and onc thinks the surgical area did get perfusion. Essentially there was no immune response in surgical area due to healing. All that being said, I'd do it again if I had to but would go to PD-1 first.
Josh
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- June 24, 2015 at 9:47 pm
It was rough. I had one cycle because I did it in combo trial with ipi. I did 11 of 12 bags each week and really not sure what response was as ipi started working for me fairly quick. I also had to have another surgery as I never had clear margins and onc thinks the surgical area did get perfusion. Essentially there was no immune response in surgical area due to healing. All that being said, I'd do it again if I had to but would go to PD-1 first.
Josh
Tagged: cutaneous melanoma
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