› Forums › General Melanoma Community › IL-2 advice stage 4 unknown primary
- This topic has 36 replies, 10 voices, and was last updated 11 years, 3 months ago by
JerryfromFauq.
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- May 15, 2013 at 2:29 pm
Hello all- I’ve been on the forum for three years, but I’m asking today for a friend. He is 39 years old and had a swollen lymph node in neck. Docs first thought it was lymphoma but biopsy can back melanoma. Unknown primary. MRI of brain came back clean. PET scan showed a 1 cm spot in lung. He is seeing a melanoma specialist that wants to start the interleukin on Monday. Still waiting for BRAF testing to come back. Is there any reason he should not start the IL-2? Would it keep him from getting other treatments if he is BRAF+? What expectations should he have of the treatment?Hello all- I’ve been on the forum for three years, but I’m asking today for a friend. He is 39 years old and had a swollen lymph node in neck. Docs first thought it was lymphoma but biopsy can back melanoma. Unknown primary. MRI of brain came back clean. PET scan showed a 1 cm spot in lung. He is seeing a melanoma specialist that wants to start the interleukin on Monday. Still waiting for BRAF testing to come back. Is there any reason he should not start the IL-2? Would it keep him from getting other treatments if he is BRAF+? What expectations should he have of the treatment? Any advice would be appreciated. He came to me knowing my battle, but fortunately I have not joined the stage four club and can’t help him.
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- May 15, 2013 at 2:42 pm
BRAF+ does not affect taking IL-2 or not. If he is BRAF positive, it gives him treatment options in the future. If he already has a plan of attack with IL-2, then I see no reason to hold off treatment waiting for the BRAF test results. The BRAF drugs are typically given when there is a lot more disease than your friend has now. IL-2 is a very tough treatment. If you go to my website (linked below) and choose Patient Perspectives, there are some tips from others who have done IL-2. You could pass those along to him.
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- May 15, 2013 at 2:42 pm
BRAF+ does not affect taking IL-2 or not. If he is BRAF positive, it gives him treatment options in the future. If he already has a plan of attack with IL-2, then I see no reason to hold off treatment waiting for the BRAF test results. The BRAF drugs are typically given when there is a lot more disease than your friend has now. IL-2 is a very tough treatment. If you go to my website (linked below) and choose Patient Perspectives, there are some tips from others who have done IL-2. You could pass those along to him.
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- May 15, 2013 at 2:42 pm
BRAF+ does not affect taking IL-2 or not. If he is BRAF positive, it gives him treatment options in the future. If he already has a plan of attack with IL-2, then I see no reason to hold off treatment waiting for the BRAF test results. The BRAF drugs are typically given when there is a lot more disease than your friend has now. IL-2 is a very tough treatment. If you go to my website (linked below) and choose Patient Perspectives, there are some tips from others who have done IL-2. You could pass those along to him.
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- May 15, 2013 at 4:06 pm
I did IL-2 as my first line treatment and as far as I know it didn't disqualify me from potential participation in any clinical trials or available treatments. I think given his low volume of disease it is a reasonable place to start with the hope for complete response and long term control. Good luck. Troy
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- May 15, 2013 at 4:06 pm
I did IL-2 as my first line treatment and as far as I know it didn't disqualify me from potential participation in any clinical trials or available treatments. I think given his low volume of disease it is a reasonable place to start with the hope for complete response and long term control. Good luck. Troy
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- May 15, 2013 at 4:06 pm
I did IL-2 as my first line treatment and as far as I know it didn't disqualify me from potential participation in any clinical trials or available treatments. I think given his low volume of disease it is a reasonable place to start with the hope for complete response and long term control. Good luck. Troy
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- May 15, 2013 at 4:07 pm
Make sure he’s truly seeing a specialist. Not many are using IL-2 anymore…it’s very rough and has a very low success rate. If there’s only 1 tumor, surgery is sometimes a first option, followed by watch and wait. Yervoy (or Ipi) is often used first…higher success rate than IL-2 and less awful side effects. -
- May 15, 2013 at 4:07 pm
Make sure he’s truly seeing a specialist. Not many are using IL-2 anymore…it’s very rough and has a very low success rate. If there’s only 1 tumor, surgery is sometimes a first option, followed by watch and wait. Yervoy (or Ipi) is often used first…higher success rate than IL-2 and less awful side effects. -
- May 15, 2013 at 4:07 pm
Make sure he’s truly seeing a specialist. Not many are using IL-2 anymore…it’s very rough and has a very low success rate. If there’s only 1 tumor, surgery is sometimes a first option, followed by watch and wait. Yervoy (or Ipi) is often used first…higher success rate than IL-2 and less awful side effects. -
- May 15, 2013 at 4:28 pm
Sorry to hear about your friend. Melanoma with an unknown primary is not all that common. Has he asked the doctor if the IL2 treatment can wait untl the BRAF results are in?
There have been some studies done which have concluded that those with unknown primaries have a survival advantage over those with known primaries. Since I also have an unknown primary, that knowledge gave me great comfort. Here's a link to a study that was done on Stage IV patients: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2717755/
Here's some more reading material on treating melanoma with IL2: http://skincancer.about.com/od/treatmentoptions/a/interleukin.htm. A small percentage of patients appear to have a complete response to it. But it is pretty harsh.
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- May 15, 2013 at 4:28 pm
Sorry to hear about your friend. Melanoma with an unknown primary is not all that common. Has he asked the doctor if the IL2 treatment can wait untl the BRAF results are in?
There have been some studies done which have concluded that those with unknown primaries have a survival advantage over those with known primaries. Since I also have an unknown primary, that knowledge gave me great comfort. Here's a link to a study that was done on Stage IV patients: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2717755/
Here's some more reading material on treating melanoma with IL2: http://skincancer.about.com/od/treatmentoptions/a/interleukin.htm. A small percentage of patients appear to have a complete response to it. But it is pretty harsh.
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- May 15, 2013 at 4:28 pm
Sorry to hear about your friend. Melanoma with an unknown primary is not all that common. Has he asked the doctor if the IL2 treatment can wait untl the BRAF results are in?
There have been some studies done which have concluded that those with unknown primaries have a survival advantage over those with known primaries. Since I also have an unknown primary, that knowledge gave me great comfort. Here's a link to a study that was done on Stage IV patients: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2717755/
Here's some more reading material on treating melanoma with IL2: http://skincancer.about.com/od/treatmentoptions/a/interleukin.htm. A small percentage of patients appear to have a complete response to it. But it is pretty harsh.
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- May 15, 2013 at 5:39 pm
Wow, this hits home — I am 29 and had the same progression of disease as your friend. I started off as stage 3 w/ unknown primary and had a full right neck dissection followed by radiation to the area and interferon. Then, after a few months a single lesion was discovered in my left lung. I ended up having a VATS lobectomy done to remove the lung lesion, but now I am at the stage where I need to think about adjuvant treatments.
I am considering Ipi.
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- May 15, 2013 at 5:39 pm
Wow, this hits home — I am 29 and had the same progression of disease as your friend. I started off as stage 3 w/ unknown primary and had a full right neck dissection followed by radiation to the area and interferon. Then, after a few months a single lesion was discovered in my left lung. I ended up having a VATS lobectomy done to remove the lung lesion, but now I am at the stage where I need to think about adjuvant treatments.
I am considering Ipi.
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- May 15, 2013 at 5:39 pm
Wow, this hits home — I am 29 and had the same progression of disease as your friend. I started off as stage 3 w/ unknown primary and had a full right neck dissection followed by radiation to the area and interferon. Then, after a few months a single lesion was discovered in my left lung. I ended up having a VATS lobectomy done to remove the lung lesion, but now I am at the stage where I need to think about adjuvant treatments.
I am considering Ipi.
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- May 15, 2013 at 8:51 pm
Personally I was faced with the same situation. I chose IL-2 because if you are a complete responder, you can have a durable remission, dare I say cure?! Fortunately for me I am in the 3% club of complete responders with a durable remission.
IMHO – with such a minimal tumor burden I would do the IL-2 if you are healthy enough for it. You use the tumor as an indicator of response to the drug. If you do surgery without a systemic treatment you keep waiting for the next one to pop up.
My onc said even though I only had a small lung and muscle tumor, there are micromets that are undetectable anywhere and everywhere in my body just waiting to progress. Yes surgery can be curative, but I would rather prime my immune system as best I could. IL-2 has a proven track record, is very tough but doable. You know quickly if it works or not. It may also qualify you for trials that require at least one failed systemic treatment. If only more people responded…
With all the hype about the newer drugs it seems some forget about IL-2. To date, it is the ONLY drug with proven prolonged remissions of over 20+ years. Research shows if a CR, then you have a 60% chance of surviving 5 years or more. No recurrances were noted if you were a CR and made it past 30 months. Even Yervoy can't say that – yet.
BTW – Yervoy has terrible side effects as well. Can anyone say bowel perforation or immune mediated toxicity???? There is a time and place for it. For me it is my ace in my back pocket just in case, along with Braf / MEK inhibitors and anti PD, anti PDL1 drugs. Additionally, IL-2 treatment time is very short compared to Yervoy.
Whatever you decide, go all-in and don't look back. I remember wanting to cut out my remaining muscle met after my lung tumor was removed. Fortunately I kept the tumor and it showed I was a complete responder. Now I know my IL-2 experience was worth it. Not without risk, but it saved my life. I hope Diane will be able to say the same.
Just some pearls to ponder. Janner has my experiences with IL-2 on her website.
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- May 15, 2013 at 8:51 pm
Personally I was faced with the same situation. I chose IL-2 because if you are a complete responder, you can have a durable remission, dare I say cure?! Fortunately for me I am in the 3% club of complete responders with a durable remission.
IMHO – with such a minimal tumor burden I would do the IL-2 if you are healthy enough for it. You use the tumor as an indicator of response to the drug. If you do surgery without a systemic treatment you keep waiting for the next one to pop up.
My onc said even though I only had a small lung and muscle tumor, there are micromets that are undetectable anywhere and everywhere in my body just waiting to progress. Yes surgery can be curative, but I would rather prime my immune system as best I could. IL-2 has a proven track record, is very tough but doable. You know quickly if it works or not. It may also qualify you for trials that require at least one failed systemic treatment. If only more people responded…
With all the hype about the newer drugs it seems some forget about IL-2. To date, it is the ONLY drug with proven prolonged remissions of over 20+ years. Research shows if a CR, then you have a 60% chance of surviving 5 years or more. No recurrances were noted if you were a CR and made it past 30 months. Even Yervoy can't say that – yet.
BTW – Yervoy has terrible side effects as well. Can anyone say bowel perforation or immune mediated toxicity???? There is a time and place for it. For me it is my ace in my back pocket just in case, along with Braf / MEK inhibitors and anti PD, anti PDL1 drugs. Additionally, IL-2 treatment time is very short compared to Yervoy.
Whatever you decide, go all-in and don't look back. I remember wanting to cut out my remaining muscle met after my lung tumor was removed. Fortunately I kept the tumor and it showed I was a complete responder. Now I know my IL-2 experience was worth it. Not without risk, but it saved my life. I hope Diane will be able to say the same.
Just some pearls to ponder. Janner has my experiences with IL-2 on her website.
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- May 15, 2013 at 8:51 pm
Personally I was faced with the same situation. I chose IL-2 because if you are a complete responder, you can have a durable remission, dare I say cure?! Fortunately for me I am in the 3% club of complete responders with a durable remission.
IMHO – with such a minimal tumor burden I would do the IL-2 if you are healthy enough for it. You use the tumor as an indicator of response to the drug. If you do surgery without a systemic treatment you keep waiting for the next one to pop up.
My onc said even though I only had a small lung and muscle tumor, there are micromets that are undetectable anywhere and everywhere in my body just waiting to progress. Yes surgery can be curative, but I would rather prime my immune system as best I could. IL-2 has a proven track record, is very tough but doable. You know quickly if it works or not. It may also qualify you for trials that require at least one failed systemic treatment. If only more people responded…
With all the hype about the newer drugs it seems some forget about IL-2. To date, it is the ONLY drug with proven prolonged remissions of over 20+ years. Research shows if a CR, then you have a 60% chance of surviving 5 years or more. No recurrances were noted if you were a CR and made it past 30 months. Even Yervoy can't say that – yet.
BTW – Yervoy has terrible side effects as well. Can anyone say bowel perforation or immune mediated toxicity???? There is a time and place for it. For me it is my ace in my back pocket just in case, along with Braf / MEK inhibitors and anti PD, anti PDL1 drugs. Additionally, IL-2 treatment time is very short compared to Yervoy.
Whatever you decide, go all-in and don't look back. I remember wanting to cut out my remaining muscle met after my lung tumor was removed. Fortunately I kept the tumor and it showed I was a complete responder. Now I know my IL-2 experience was worth it. Not without risk, but it saved my life. I hope Diane will be able to say the same.
Just some pearls to ponder. Janner has my experiences with IL-2 on her website.
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- May 15, 2013 at 10:31 pm
Kim, you said that about 100 times better than I could have.
High dose IL-2 cleared out 8 lung mets I had, apparently completely; they've been gone since July 2010. That's past 30 months FWIW. My current onc also thinks IL-2 may have helped "prime" my immune system for treatment a year later with IPI (something got out and esacped to my brain). After IPI, which, so far the "lesions" in my brain have been "stable" (after an initial bump post-radiation/IPI) for 21 months.
I've also seen a couple of recent webinars where oncs said the same thing you've said, about a tendency to "forget" about IL-2 when in their estimateion it should still have a significant plase in the toolkit.
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- May 15, 2013 at 10:31 pm
Kim, you said that about 100 times better than I could have.
High dose IL-2 cleared out 8 lung mets I had, apparently completely; they've been gone since July 2010. That's past 30 months FWIW. My current onc also thinks IL-2 may have helped "prime" my immune system for treatment a year later with IPI (something got out and esacped to my brain). After IPI, which, so far the "lesions" in my brain have been "stable" (after an initial bump post-radiation/IPI) for 21 months.
I've also seen a couple of recent webinars where oncs said the same thing you've said, about a tendency to "forget" about IL-2 when in their estimateion it should still have a significant plase in the toolkit.
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- May 15, 2013 at 10:31 pm
Kim, you said that about 100 times better than I could have.
High dose IL-2 cleared out 8 lung mets I had, apparently completely; they've been gone since July 2010. That's past 30 months FWIW. My current onc also thinks IL-2 may have helped "prime" my immune system for treatment a year later with IPI (something got out and esacped to my brain). After IPI, which, so far the "lesions" in my brain have been "stable" (after an initial bump post-radiation/IPI) for 21 months.
I've also seen a couple of recent webinars where oncs said the same thing you've said, about a tendency to "forget" about IL-2 when in their estimateion it should still have a significant plase in the toolkit.
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- May 15, 2013 at 11:54 pm
I'm glad you replied, Kim. I thought I must have missed something somewhere.
As far as I know, so far, IL-2 has the only proven track record for actually getting rid of melanoma for good, even if it is a small number. I was at a symposium at U of Mich. where they discussd Yervoy but they were careful to say you had to jump through a lot of health hoops as it can be a very hard regimen and as of that time the only numbers on it was to extend survival by a few months. Don't get me wrong, they thought Yervoy was a great new treatment, but certainly not for everyone and certainly not a cure. I am happy you are still going strong and posting here as it gives hope to many others.
DebbieH, stage IIIC, NED 11+ years after interferon
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- May 15, 2013 at 11:54 pm
I'm glad you replied, Kim. I thought I must have missed something somewhere.
As far as I know, so far, IL-2 has the only proven track record for actually getting rid of melanoma for good, even if it is a small number. I was at a symposium at U of Mich. where they discussd Yervoy but they were careful to say you had to jump through a lot of health hoops as it can be a very hard regimen and as of that time the only numbers on it was to extend survival by a few months. Don't get me wrong, they thought Yervoy was a great new treatment, but certainly not for everyone and certainly not a cure. I am happy you are still going strong and posting here as it gives hope to many others.
DebbieH, stage IIIC, NED 11+ years after interferon
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- May 15, 2013 at 11:54 pm
I'm glad you replied, Kim. I thought I must have missed something somewhere.
As far as I know, so far, IL-2 has the only proven track record for actually getting rid of melanoma for good, even if it is a small number. I was at a symposium at U of Mich. where they discussd Yervoy but they were careful to say you had to jump through a lot of health hoops as it can be a very hard regimen and as of that time the only numbers on it was to extend survival by a few months. Don't get me wrong, they thought Yervoy was a great new treatment, but certainly not for everyone and certainly not a cure. I am happy you are still going strong and posting here as it gives hope to many others.
DebbieH, stage IIIC, NED 11+ years after interferon
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- May 16, 2013 at 12:10 am
Thank you for all of the responses- very good info shared and I will pass it on. He actually traveled to MD Anderson today for a second opinion and was told to try the Anti-pd 1 trial. He goes to Sloan Kettering on Friday for another opinion. Ill keep you posted… Or hopefully he will join the forum himself when it all sinks in! Thanks and prayers to all of you fighting this awful disease!!!
Michelle -
- May 16, 2013 at 12:10 am
Thank you for all of the responses- very good info shared and I will pass it on. He actually traveled to MD Anderson today for a second opinion and was told to try the Anti-pd 1 trial. He goes to Sloan Kettering on Friday for another opinion. Ill keep you posted… Or hopefully he will join the forum himself when it all sinks in! Thanks and prayers to all of you fighting this awful disease!!!
Michelle -
- May 16, 2013 at 12:10 am
Thank you for all of the responses- very good info shared and I will pass it on. He actually traveled to MD Anderson today for a second opinion and was told to try the Anti-pd 1 trial. He goes to Sloan Kettering on Friday for another opinion. Ill keep you posted… Or hopefully he will join the forum himself when it all sinks in! Thanks and prayers to all of you fighting this awful disease!!!
Michelle -
- May 16, 2013 at 4:06 am
Kim and Kyle did a great job responding.
IL-2 definitely has the best long term record to date. On some people Ipi is more dangerous than IL-2.
Given the choice between IL-2 and PD1 for an unknown primary and only one known metastatic site Is a hard choice. If one wants a clinical trial, PD1 appears to be the way to go, due to it’s minimal side effects and trial success so far. Currently my thoughts are to learn if PD1 is having much success on my particular type of melanoma.I had innumerable metastatic sites and was not a complete responder to IL-2, but did survive long enough (two years) due to the IL-2 for another treatment to keep me stable for the past 4 additional years. IL-2 can be quite rough, but nothing has proven much more successful for across the board melanoma to date. I’m glad I did it and would be willing to do it again if needed. (See my profile.) The reason many places do not administer the IL-2 is because they do not have people experienced enough to monitor and respond to the side effects. Too many Oncologists are scared of IL-2 and so due to their lack of familiarity with it and how to use it and so run from it.
At your friends status I would consider both options to be very viable. -
- May 16, 2013 at 4:06 am
Kim and Kyle did a great job responding.
IL-2 definitely has the best long term record to date. On some people Ipi is more dangerous than IL-2.
Given the choice between IL-2 and PD1 for an unknown primary and only one known metastatic site Is a hard choice. If one wants a clinical trial, PD1 appears to be the way to go, due to it’s minimal side effects and trial success so far. Currently my thoughts are to learn if PD1 is having much success on my particular type of melanoma.I had innumerable metastatic sites and was not a complete responder to IL-2, but did survive long enough (two years) due to the IL-2 for another treatment to keep me stable for the past 4 additional years. IL-2 can be quite rough, but nothing has proven much more successful for across the board melanoma to date. I’m glad I did it and would be willing to do it again if needed. (See my profile.) The reason many places do not administer the IL-2 is because they do not have people experienced enough to monitor and respond to the side effects. Too many Oncologists are scared of IL-2 and so due to their lack of familiarity with it and how to use it and so run from it.
At your friends status I would consider both options to be very viable. -
- May 16, 2013 at 4:06 am
Kim and Kyle did a great job responding.
IL-2 definitely has the best long term record to date. On some people Ipi is more dangerous than IL-2.
Given the choice between IL-2 and PD1 for an unknown primary and only one known metastatic site Is a hard choice. If one wants a clinical trial, PD1 appears to be the way to go, due to it’s minimal side effects and trial success so far. Currently my thoughts are to learn if PD1 is having much success on my particular type of melanoma.I had innumerable metastatic sites and was not a complete responder to IL-2, but did survive long enough (two years) due to the IL-2 for another treatment to keep me stable for the past 4 additional years. IL-2 can be quite rough, but nothing has proven much more successful for across the board melanoma to date. I’m glad I did it and would be willing to do it again if needed. (See my profile.) The reason many places do not administer the IL-2 is because they do not have people experienced enough to monitor and respond to the side effects. Too many Oncologists are scared of IL-2 and so due to their lack of familiarity with it and how to use it and so run from it.
At your friends status I would consider both options to be very viable.
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