› Forums › General Melanoma Community › Can you go from IL2 to Yervoy back to IL2?
- This topic has 21 replies, 7 voices, and was last updated 12 years ago by LynnLuc.
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- April 6, 2012 at 2:23 am
Is it possible to start with IL2, then try Yervoy, and if it doesn't work to try IL2 again?
I am worried that my brother's doctor has given up too quickly on IL2. He showed some positive results with it, but the doctor wants to move on to Yervoy asap. I feel because he is Braff Negative, that Yervoy might be his last option for medicine. Im I way off?
Any advise would be great!
Thank you-
Is it possible to start with IL2, then try Yervoy, and if it doesn't work to try IL2 again?
I am worried that my brother's doctor has given up too quickly on IL2. He showed some positive results with it, but the doctor wants to move on to Yervoy asap. I feel because he is Braff Negative, that Yervoy might be his last option for medicine. Im I way off?
Any advise would be great!
Thank you-
- Replies
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- April 6, 2012 at 3:19 am
Listen to his oncologist! Please beware that IL2 is very toxic, however when it does work, it works for good! There are only a very low percentage of patients that are beneficial of using this treatment. There are so many better option's available today including what your doctor suggested doing ippi (yervoy)
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- April 6, 2012 at 3:19 am
Listen to his oncologist! Please beware that IL2 is very toxic, however when it does work, it works for good! There are only a very low percentage of patients that are beneficial of using this treatment. There are so many better option's available today including what your doctor suggested doing ippi (yervoy)
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- April 6, 2012 at 3:19 am
Listen to his oncologist! Please beware that IL2 is very toxic, however when it does work, it works for good! There are only a very low percentage of patients that are beneficial of using this treatment. There are so many better option's available today including what your doctor suggested doing ippi (yervoy)
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- April 7, 2012 at 2:54 am
Yes, it is possible, Very possible.
With all due respect to Gene S, who has done a lot of good work here I might add, his mention of TOXIC if IL2 is simply not realistic as an exclusionary factor alone. Ask a surviving colon cancer patient, pancreatic cancer patient, breast cancer patient, lymphoma patient, lung cancer patient , or any other cancer survivor how "swell" the treatments were to get them to where they are and I bet you every one would say the treatments were awful.
This mindset that "it is only skin cancer" seems to be spilling over to if it is, then the treatments should not be that bad. Well contrary to public opinion, cancer treatment is tough. Melanoma can and will if it wants too, eat your guts outs, chew up your bones like a beaver on a tree and absorb your liver, lungs and brain……………can anyone honestly think the solution will be painless and simple against something so evil?
So much ado about numbers of success for this or that, but the bottom line is NO melanoma treatment works good in a high number of patinets above maybe 20% with durable remission. I'm not talking this crap of 4-6 months longer, I'm talking something that LASTS.
I have a bit of experience with melanoma, and although there are new options, this idea that melanoma treatment is a cakewalk is nothing but an unrealistic utopian dream.
Back to the core issue, yes, IL2 (which I have done) CAN work, yes, it kicks your tail, but if there is ANY indication that it is working is a good enough reason to continue.
I know several people,Stage IV, first hand, face to face, who have b…h slapped their doctors to continue IL2 when there was only modest difference; and they, like me are still alive.
Do NOT chose a treatment plan for sissies, because melanoma is no sissy; be prepared to kick tail to kick its' tail.
……………and as a side note, do NOT be afraid to kick a doctors tail to get what you want, Your chances, your choices.
And THAT, is my story and I'm sticking to it
I see my post was kicked for profanity,, so I made ammends; NOTE TO THE MRF: Melanoma is profane and the day you begin to brush and gloss over that will only contribute to this misconception that cancer is easy.
Cheers,
Charlie S
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- April 7, 2012 at 5:04 am
Charlie you comments always blow me away (in a nice way that is). I want to my dad to kick this hardcore and I am hoping the oncologist will offer a treatment that gives him a real chance to fight this cancer. Vemurafenib as expected only lasted 6 months and now he is talking about MEK. It's a bandaid solution, although I am grateful if it works to give him more time but as we know it's only temporary. I want them cut as many as they can out and go for something hardcore, but of course I'm not the patient and the decision wont be mine to make.
I love your spirit Charlie, you really inspire me to help my dad put up a fight with the knowlege you and others have shared on this board.
Nahmi from Melbourne
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- April 7, 2012 at 5:04 am
Charlie you comments always blow me away (in a nice way that is). I want to my dad to kick this hardcore and I am hoping the oncologist will offer a treatment that gives him a real chance to fight this cancer. Vemurafenib as expected only lasted 6 months and now he is talking about MEK. It's a bandaid solution, although I am grateful if it works to give him more time but as we know it's only temporary. I want them cut as many as they can out and go for something hardcore, but of course I'm not the patient and the decision wont be mine to make.
I love your spirit Charlie, you really inspire me to help my dad put up a fight with the knowlege you and others have shared on this board.
Nahmi from Melbourne
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- April 7, 2012 at 5:04 am
Charlie you comments always blow me away (in a nice way that is). I want to my dad to kick this hardcore and I am hoping the oncologist will offer a treatment that gives him a real chance to fight this cancer. Vemurafenib as expected only lasted 6 months and now he is talking about MEK. It's a bandaid solution, although I am grateful if it works to give him more time but as we know it's only temporary. I want them cut as many as they can out and go for something hardcore, but of course I'm not the patient and the decision wont be mine to make.
I love your spirit Charlie, you really inspire me to help my dad put up a fight with the knowlege you and others have shared on this board.
Nahmi from Melbourne
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- April 7, 2012 at 2:54 am
Yes, it is possible, Very possible.
With all due respect to Gene S, who has done a lot of good work here I might add, his mention of TOXIC if IL2 is simply not realistic as an exclusionary factor alone. Ask a surviving colon cancer patient, pancreatic cancer patient, breast cancer patient, lymphoma patient, lung cancer patient , or any other cancer survivor how "swell" the treatments were to get them to where they are and I bet you every one would say the treatments were awful.
This mindset that "it is only skin cancer" seems to be spilling over to if it is, then the treatments should not be that bad. Well contrary to public opinion, cancer treatment is tough. Melanoma can and will if it wants too, eat your guts outs, chew up your bones like a beaver on a tree and absorb your liver, lungs and brain……………can anyone honestly think the solution will be painless and simple against something so evil?
So much ado about numbers of success for this or that, but the bottom line is NO melanoma treatment works good in a high number of patinets above maybe 20% with durable remission. I'm not talking this crap of 4-6 months longer, I'm talking something that LASTS.
I have a bit of experience with melanoma, and although there are new options, this idea that melanoma treatment is a cakewalk is nothing but an unrealistic utopian dream.
Back to the core issue, yes, IL2 (which I have done) CAN work, yes, it kicks your tail, but if there is ANY indication that it is working is a good enough reason to continue.
I know several people,Stage IV, first hand, face to face, who have b…h slapped their doctors to continue IL2 when there was only modest difference; and they, like me are still alive.
Do NOT chose a treatment plan for sissies, because melanoma is no sissy; be prepared to kick tail to kick its' tail.
……………and as a side note, do NOT be afraid to kick a doctors tail to get what you want, Your chances, your choices.
And THAT, is my story and I'm sticking to it
I see my post was kicked for profanity,, so I made ammends; NOTE TO THE MRF: Melanoma is profane and the day you begin to brush and gloss over that will only contribute to this misconception that cancer is easy.
Cheers,
Charlie S
-
- April 7, 2012 at 2:54 am
Yes, it is possible, Very possible.
With all due respect to Gene S, who has done a lot of good work here I might add, his mention of TOXIC if IL2 is simply not realistic as an exclusionary factor alone. Ask a surviving colon cancer patient, pancreatic cancer patient, breast cancer patient, lymphoma patient, lung cancer patient , or any other cancer survivor how "swell" the treatments were to get them to where they are and I bet you every one would say the treatments were awful.
This mindset that "it is only skin cancer" seems to be spilling over to if it is, then the treatments should not be that bad. Well contrary to public opinion, cancer treatment is tough. Melanoma can and will if it wants too, eat your guts outs, chew up your bones like a beaver on a tree and absorb your liver, lungs and brain……………can anyone honestly think the solution will be painless and simple against something so evil?
So much ado about numbers of success for this or that, but the bottom line is NO melanoma treatment works good in a high number of patinets above maybe 20% with durable remission. I'm not talking this crap of 4-6 months longer, I'm talking something that LASTS.
I have a bit of experience with melanoma, and although there are new options, this idea that melanoma treatment is a cakewalk is nothing but an unrealistic utopian dream.
Back to the core issue, yes, IL2 (which I have done) CAN work, yes, it kicks your tail, but if there is ANY indication that it is working is a good enough reason to continue.
I know several people,Stage IV, first hand, face to face, who have b…h slapped their doctors to continue IL2 when there was only modest difference; and they, like me are still alive.
Do NOT chose a treatment plan for sissies, because melanoma is no sissy; be prepared to kick tail to kick its' tail.
……………and as a side note, do NOT be afraid to kick a doctors tail to get what you want, Your chances, your choices.
And THAT, is my story and I'm sticking to it
I see my post was kicked for profanity,, so I made ammends; NOTE TO THE MRF: Melanoma is profane and the day you begin to brush and gloss over that will only contribute to this misconception that cancer is easy.
Cheers,
Charlie S
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- April 8, 2012 at 1:58 am
I agree with Charlie….
AND…. if he is showing a positive (which it sounds he is) response, go for a second round. IL-2 may be nasty, but if it's working, stick with it. My hubby was not a responder to IL-2, and also had vision problems (went blind on and off for two months after his second week). Ask anybody who has been through the nasty side effects of IPI, and honestly, IL-2 could be a walk in the park.
In the end, it's finding something that works… no matter how rough the road…
Push the onc for another round, and if he doesn't want to, find one who will. The chances of ANY response are minimal.
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- April 8, 2012 at 1:58 am
I agree with Charlie….
AND…. if he is showing a positive (which it sounds he is) response, go for a second round. IL-2 may be nasty, but if it's working, stick with it. My hubby was not a responder to IL-2, and also had vision problems (went blind on and off for two months after his second week). Ask anybody who has been through the nasty side effects of IPI, and honestly, IL-2 could be a walk in the park.
In the end, it's finding something that works… no matter how rough the road…
Push the onc for another round, and if he doesn't want to, find one who will. The chances of ANY response are minimal.
-
- April 8, 2012 at 1:58 am
I agree with Charlie….
AND…. if he is showing a positive (which it sounds he is) response, go for a second round. IL-2 may be nasty, but if it's working, stick with it. My hubby was not a responder to IL-2, and also had vision problems (went blind on and off for two months after his second week). Ask anybody who has been through the nasty side effects of IPI, and honestly, IL-2 could be a walk in the park.
In the end, it's finding something that works… no matter how rough the road…
Push the onc for another round, and if he doesn't want to, find one who will. The chances of ANY response are minimal.
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- April 8, 2012 at 3:12 am
Been there, done that with the IL2. I am now a few days shy of being one year out of my initial hospital IL2 High Dose beginning. I am still having nasty side affects from the treatment. The ones in the hospital are rough no doubt about it, but there *can* be long term side affects from IL2. There is no easy treatment and each one can affect each person differently. With that said, I would definately drill the onc. as to his reasons why he does not want to continue the IL2 since there has been a response.
One of the things I wonder, and do not know the answer to is….how many immunotherapy treatments (IL2, ipi, etc.) can one have and not over stimulate (probably the wrong word here) the immune system to the extreme where immune issues become so problematic immunotherapy is no longer a viable treatment? (I hope this makes sense.)
Karin
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- April 8, 2012 at 3:12 am
Been there, done that with the IL2. I am now a few days shy of being one year out of my initial hospital IL2 High Dose beginning. I am still having nasty side affects from the treatment. The ones in the hospital are rough no doubt about it, but there *can* be long term side affects from IL2. There is no easy treatment and each one can affect each person differently. With that said, I would definately drill the onc. as to his reasons why he does not want to continue the IL2 since there has been a response.
One of the things I wonder, and do not know the answer to is….how many immunotherapy treatments (IL2, ipi, etc.) can one have and not over stimulate (probably the wrong word here) the immune system to the extreme where immune issues become so problematic immunotherapy is no longer a viable treatment? (I hope this makes sense.)
Karin
-
- April 8, 2012 at 3:12 am
Been there, done that with the IL2. I am now a few days shy of being one year out of my initial hospital IL2 High Dose beginning. I am still having nasty side affects from the treatment. The ones in the hospital are rough no doubt about it, but there *can* be long term side affects from IL2. There is no easy treatment and each one can affect each person differently. With that said, I would definately drill the onc. as to his reasons why he does not want to continue the IL2 since there has been a response.
One of the things I wonder, and do not know the answer to is….how many immunotherapy treatments (IL2, ipi, etc.) can one have and not over stimulate (probably the wrong word here) the immune system to the extreme where immune issues become so problematic immunotherapy is no longer a viable treatment? (I hope this makes sense.)
Karin
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- April 9, 2012 at 2:13 am
If there was no rection to IL-2 that caused one to stop taking it, then i see no reason that one could not go the route you have asked about.
i do urge you to look at Jimmy B's research about timing on going to between ipi and il-2. The timing appears to likely be an extremely important factor relating to the possible success for this action.
i have know people that showed some improvement but their Oncologist refused to comp;ete the 6 weeks (3 rounds of IL-2 treatments, that went huntiing for an experienced IL-2 Oncologist, finished the 6 week course and been NED for five years so far. One never knows in advance the final outcome. I have also known some that went the Ipi/Yervoy route and spent months in the hospital from bad side effects. For some of these people Ipi was far more toxic than IL-2 was for some of the rest of us.
The way the melanoma research is moving, even a partial response to IL-2 might extend one to the point that something else becoes available. It extended things for me til something else that seems to be stabiliziing on the subset of a subset of a subset of the subset that my DNA melanoma mutation falls into. (Yea, I would like something to cause apoptosis vice stability, but the five years of mostly stable that came after being told less than 6 months before IL-2 has allowed me much loving from some wonderful grandkids and some time with new grandkids!)
On the subject of over stimulatiing the immune system, It seems that the immunology treatments do not just indescriminately give great boosts to the complete immune system. They can actually reduce some aspects of the immune system while enhancing other aspects. it will be interesting to see what the future brings in this area, but so far I have heard nothing negtive about trying this route.
The other point I would like to make is that there may be other, less efffective (on a percentage basis) treatments that can be tried. There are actually many treatments that have worked on a few people (mostly less than 1% of people they were tried on), that I would try as a last effort. No one knows just what will work on who! That is why I went for the most toxic when I was at my strongest.
-
- April 9, 2012 at 2:13 am
If there was no rection to IL-2 that caused one to stop taking it, then i see no reason that one could not go the route you have asked about.
i do urge you to look at Jimmy B's research about timing on going to between ipi and il-2. The timing appears to likely be an extremely important factor relating to the possible success for this action.
i have know people that showed some improvement but their Oncologist refused to comp;ete the 6 weeks (3 rounds of IL-2 treatments, that went huntiing for an experienced IL-2 Oncologist, finished the 6 week course and been NED for five years so far. One never knows in advance the final outcome. I have also known some that went the Ipi/Yervoy route and spent months in the hospital from bad side effects. For some of these people Ipi was far more toxic than IL-2 was for some of the rest of us.
The way the melanoma research is moving, even a partial response to IL-2 might extend one to the point that something else becoes available. It extended things for me til something else that seems to be stabiliziing on the subset of a subset of a subset of the subset that my DNA melanoma mutation falls into. (Yea, I would like something to cause apoptosis vice stability, but the five years of mostly stable that came after being told less than 6 months before IL-2 has allowed me much loving from some wonderful grandkids and some time with new grandkids!)
On the subject of over stimulatiing the immune system, It seems that the immunology treatments do not just indescriminately give great boosts to the complete immune system. They can actually reduce some aspects of the immune system while enhancing other aspects. it will be interesting to see what the future brings in this area, but so far I have heard nothing negtive about trying this route.
The other point I would like to make is that there may be other, less efffective (on a percentage basis) treatments that can be tried. There are actually many treatments that have worked on a few people (mostly less than 1% of people they were tried on), that I would try as a last effort. No one knows just what will work on who! That is why I went for the most toxic when I was at my strongest.
-
- April 9, 2012 at 2:13 am
If there was no rection to IL-2 that caused one to stop taking it, then i see no reason that one could not go the route you have asked about.
i do urge you to look at Jimmy B's research about timing on going to between ipi and il-2. The timing appears to likely be an extremely important factor relating to the possible success for this action.
i have know people that showed some improvement but their Oncologist refused to comp;ete the 6 weeks (3 rounds of IL-2 treatments, that went huntiing for an experienced IL-2 Oncologist, finished the 6 week course and been NED for five years so far. One never knows in advance the final outcome. I have also known some that went the Ipi/Yervoy route and spent months in the hospital from bad side effects. For some of these people Ipi was far more toxic than IL-2 was for some of the rest of us.
The way the melanoma research is moving, even a partial response to IL-2 might extend one to the point that something else becoes available. It extended things for me til something else that seems to be stabiliziing on the subset of a subset of a subset of the subset that my DNA melanoma mutation falls into. (Yea, I would like something to cause apoptosis vice stability, but the five years of mostly stable that came after being told less than 6 months before IL-2 has allowed me much loving from some wonderful grandkids and some time with new grandkids!)
On the subject of over stimulatiing the immune system, It seems that the immunology treatments do not just indescriminately give great boosts to the complete immune system. They can actually reduce some aspects of the immune system while enhancing other aspects. it will be interesting to see what the future brings in this area, but so far I have heard nothing negtive about trying this route.
The other point I would like to make is that there may be other, less efffective (on a percentage basis) treatments that can be tried. There are actually many treatments that have worked on a few people (mostly less than 1% of people they were tried on), that I would try as a last effort. No one knows just what will work on who! That is why I went for the most toxic when I was at my strongest.
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