› Forums › General Melanoma Community › dads metastatic melanoma treatment options
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Annalive.
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- August 25, 2014 at 8:52 pm
After seeing Dr. Steven O'Day at BH cancer center and Dr. Wong at USC here is where we are:
Would love to hear your thoughts on treatment options and/ or clinicla trials you would suggest. BRAF test negative
In July of 2013 a nevus/nevi was removed from the crown of patient’s head and pathology was negative for melanoma
In February of 2014 patient experienced swollen lymph nodes neck and armpits patient thought due to contact dermatitis and generally “feeling poor” for a few days.
Lymph node on left neck behind and below ear remained swollen. After consults and CT lymph node surgically removed June 18. Results on July 21of immunochem analysis were for metastic melanoma (MM)
Aug 4 CT indicates two small nodules (about 1 cm) in lungs
Aug 18 cerebral MRI negative and PET/CT indicates only the two nodules in lungs. Decision on needle biopsy of lung nodules pending
Patient has definite Stage III and probable Stage IV metastic melanoma with unknown (suspected July 13 pathology report in error) primary origin.
Recommended treatment options:
1. FDA approved Interleukin-2 or IL-2 (requiring hospitalization) possible severe reactions during treatment but post-treatment side effects. Understand low (10%) “cure” rate
2. FDA approved Ipililimumab or Yervoy (outpatient with supervision) possible reactions and side effects before and after treatment. Understand moderate (30%) “cure” rate
3. PD-1 which is expected to be approved in October by the FDA (outpatient with supervision) possible reactions and side effects before and after treatment but fewer than #2. Understand good (65%) cure rate and works well with MM lung tumors.
4. Clinical trials
Cheers
Liam
- Replies
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- August 25, 2014 at 9:41 pm
I've had IL-2 and ipilimumab (Yervoy), but not PD-1, but given the choice today without any other information or eligibility requirements (like a biomarker test that says that ipilimumab would be better for me specifically), I think PD-1 would have to be my first choice — simply, in the ongoing trials, it has demonstrated a higher response rate with fewer side effects than ipilimumab.
However, it is widely believed that the approval of Merck's PD-1 (pembrolizumab) will, at least initially, come with a requirement that a patient first try and fail ipilimumab, in other words, the approval won't be as a first-line therapy for melanoma. The early access programs (EAPs) for both Merck's and BMS's PD-1 therapies are structured the same way (BRAF-positive patients must have also tried and failed a BRAF agent, but that doesn't apply to your father). A few things to note, though: (1) I have heard from more than one medical professional "in the know" that it isn't 100% guaranteed that the approval will come with this ipilimumab-first requirement, (2) the approval for pembrolizumab may be coming sooner than late October, as soon as the next few weeks, according to an article today on Reuters (http://www.reuters.com/article/2014/08/25/us-merck-cancer-fda-idUSKBN0GP0VU20140825) — granted, that puts us in mid-September, but it is a little sooner, and (3) if the ipilimumab-first requirement is initially put in place, the expectation is that it would probably be "lifted" after perhaps six months or so, after the final Phase III trial results are submitted and reviewed by the FDA.
The challenge is that there are a lot of "what-ifs" that may take up to two months before there are answers, and no guarantee what those answers may be. Within two months (9 weeks from first dose to last dose), your father could complete a full four-dose course of ipilimumab. As noted in your post, clinical trials are also an option — the EAPs, as I mentioned above wouldn't be an option because of the ipilimumab-first requirement. You could seek out a trial for PD-1 and there are trials combining BMS's PD-1 (nivolumab) with ipilimumab (also a BMS product). I think you may have mentioned in an earlier post that your father's primary residence is out-of-country — I don't know if that factors into insurance, cost, or anything, so I'm just setting that aside for this conversation.
Did Drs. O'Day or Wong make any recommendations (or strong suggestions), or simply explain the options? Also, what are your plans for the needle biopsy? Will you be proceeding with that and if so, when? Given the size (1-cm is relatively small), I'm guessing that he's not having any symptoms associated with the presence of the two of them, but that's just a guess. And they could be very slow-growing and stay stable in size well past the time that the FDA approves Merck's PD-1, or they might not — another "what-if".
So, long story short, back to your original question and factoring in the timing and approval requirements for PD-1, if it were me today, I'd probably either start ipilimumab sooner-rather-than-later, or find a trial for nivolumab plus ipilimumab. That, of course, is my opinion, I hope many others weigh in here, too, with their thoughts. For what it's worth, you've taken a sound approach and sought out experts in the field and are doing all the right things — remember that there won't be a perfect decision because of the unanswerable questions that are still out there. Wishing you and your father the best!
Joe
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- August 26, 2014 at 7:18 am
thank you for your response. Dr. O'Day was suggesting starting with Ipi and then PD1, but still mentioning that there is no one right way. Dr. Wong was strongly suggesting starting with IL2. He is not having any symptoms and in fact feels great! as far as the biopsy we are still unsure. It looks like one of the tumors is easily accesible but not the other. it seems he should get treated regardless. will start looking for clinical trials so that he gets access to PD-1 even if in combination with other drug. Have appointments on wednesday at ucla and angeles clinic. will ask them more questions. thanks again! should you have any other suggestions or clinical trial tips please let me know.
cheers,
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- August 26, 2014 at 7:18 am
thank you for your response. Dr. O'Day was suggesting starting with Ipi and then PD1, but still mentioning that there is no one right way. Dr. Wong was strongly suggesting starting with IL2. He is not having any symptoms and in fact feels great! as far as the biopsy we are still unsure. It looks like one of the tumors is easily accesible but not the other. it seems he should get treated regardless. will start looking for clinical trials so that he gets access to PD-1 even if in combination with other drug. Have appointments on wednesday at ucla and angeles clinic. will ask them more questions. thanks again! should you have any other suggestions or clinical trial tips please let me know.
cheers,
-
- August 27, 2014 at 12:14 am
Liam,
We had one oncologist suggest IL2 but all the others said it's not worth the side effects. Perhaps Dr. Wong has a really good reason for starting with IL2? But I'm glad you're going to UCLA and Angeles – perhaps you'll have at least 2 of the docs agree on a treatment plan.
Best of luck –
Hazel
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- August 27, 2014 at 12:14 am
Liam,
We had one oncologist suggest IL2 but all the others said it's not worth the side effects. Perhaps Dr. Wong has a really good reason for starting with IL2? But I'm glad you're going to UCLA and Angeles – perhaps you'll have at least 2 of the docs agree on a treatment plan.
Best of luck –
Hazel
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- August 27, 2014 at 2:38 am
I think some respected doctors and institutions continue to see IL-2 as an option for a subset of patients at opposite ends of the spectrum. For those who have tried and failed every other option, IL -2 may be seen as a last ditch resort, but unfortunately, many of those patients are too sick to withstand the treatment — Liam's father clearly isn't in this group. The other group is what I guess what I'd call early Stage IV — along with low tumor burden that doesn't seem to be acting all that aggressive and an otherwise healthy patient, i.e. able to better withstand the treatment. Despite the low response rate as compared to ipi and now nivo, it's one of those things that when it works, the response can be very, very durable (long-lasting). It can come down to a patient's mindset and risk profile — some people, especially with slow-moving disease and knowing that there are other options available if IL-2 fails are willing to take that proverbial swing at achieving a long-term response with IL-2. I did IL-2 in 2010 and my reasons were more related to the trial I was in, but I understand how that approach could be appealing to some folks and at least worth a discussion with the doctors. What we'll learn over the next few years may change all this, as longer-term data about durability of responses for the checkpoint inhibitors like ipi, nivo, and pembro continues to come in — they may very well prove to have durability as good or better than IL-2. The data today already shows a statistical "long tail" for many patients who have responded to ipi and I suspect that long tail is rapidly building for PD-1, too. IL-2 just has a huge head start in data having started trials In the 80's and receiving FDA approval for melanoma in 1998.
As I said, I did IL-2 in late 2010. Ipi was still in trials and didn't receive FDA approval until 6 months after I finished IL-2. It was tough but I was in that "otherwise healthy" category and the side effects resolved quickly following treatment (within hours to days for the worst side effects and weeks for the less severe, nothing long-lasting). Unfortunately, I had disease progression after my first two cycles and had the opportunity to switch over to the TIL arm of the trial I was in, but if I had to do IL-2 again, I would. Despite the progression, IL-2 may still have played a role in slowing things down, too. However, given the data we already have about ipi, nivo, and pembro, today, I think I'd lean towards one of them (or a combination) vs. IL-2 as I've already stated. But I understand the mindset that might want to try IL-2 first under the right circumstances.
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- August 27, 2014 at 2:38 am
I think some respected doctors and institutions continue to see IL-2 as an option for a subset of patients at opposite ends of the spectrum. For those who have tried and failed every other option, IL -2 may be seen as a last ditch resort, but unfortunately, many of those patients are too sick to withstand the treatment — Liam's father clearly isn't in this group. The other group is what I guess what I'd call early Stage IV — along with low tumor burden that doesn't seem to be acting all that aggressive and an otherwise healthy patient, i.e. able to better withstand the treatment. Despite the low response rate as compared to ipi and now nivo, it's one of those things that when it works, the response can be very, very durable (long-lasting). It can come down to a patient's mindset and risk profile — some people, especially with slow-moving disease and knowing that there are other options available if IL-2 fails are willing to take that proverbial swing at achieving a long-term response with IL-2. I did IL-2 in 2010 and my reasons were more related to the trial I was in, but I understand how that approach could be appealing to some folks and at least worth a discussion with the doctors. What we'll learn over the next few years may change all this, as longer-term data about durability of responses for the checkpoint inhibitors like ipi, nivo, and pembro continues to come in — they may very well prove to have durability as good or better than IL-2. The data today already shows a statistical "long tail" for many patients who have responded to ipi and I suspect that long tail is rapidly building for PD-1, too. IL-2 just has a huge head start in data having started trials In the 80's and receiving FDA approval for melanoma in 1998.
As I said, I did IL-2 in late 2010. Ipi was still in trials and didn't receive FDA approval until 6 months after I finished IL-2. It was tough but I was in that "otherwise healthy" category and the side effects resolved quickly following treatment (within hours to days for the worst side effects and weeks for the less severe, nothing long-lasting). Unfortunately, I had disease progression after my first two cycles and had the opportunity to switch over to the TIL arm of the trial I was in, but if I had to do IL-2 again, I would. Despite the progression, IL-2 may still have played a role in slowing things down, too. However, given the data we already have about ipi, nivo, and pembro, today, I think I'd lean towards one of them (or a combination) vs. IL-2 as I've already stated. But I understand the mindset that might want to try IL-2 first under the right circumstances.
-
- August 27, 2014 at 2:38 am
I think some respected doctors and institutions continue to see IL-2 as an option for a subset of patients at opposite ends of the spectrum. For those who have tried and failed every other option, IL -2 may be seen as a last ditch resort, but unfortunately, many of those patients are too sick to withstand the treatment — Liam's father clearly isn't in this group. The other group is what I guess what I'd call early Stage IV — along with low tumor burden that doesn't seem to be acting all that aggressive and an otherwise healthy patient, i.e. able to better withstand the treatment. Despite the low response rate as compared to ipi and now nivo, it's one of those things that when it works, the response can be very, very durable (long-lasting). It can come down to a patient's mindset and risk profile — some people, especially with slow-moving disease and knowing that there are other options available if IL-2 fails are willing to take that proverbial swing at achieving a long-term response with IL-2. I did IL-2 in 2010 and my reasons were more related to the trial I was in, but I understand how that approach could be appealing to some folks and at least worth a discussion with the doctors. What we'll learn over the next few years may change all this, as longer-term data about durability of responses for the checkpoint inhibitors like ipi, nivo, and pembro continues to come in — they may very well prove to have durability as good or better than IL-2. The data today already shows a statistical "long tail" for many patients who have responded to ipi and I suspect that long tail is rapidly building for PD-1, too. IL-2 just has a huge head start in data having started trials In the 80's and receiving FDA approval for melanoma in 1998.
As I said, I did IL-2 in late 2010. Ipi was still in trials and didn't receive FDA approval until 6 months after I finished IL-2. It was tough but I was in that "otherwise healthy" category and the side effects resolved quickly following treatment (within hours to days for the worst side effects and weeks for the less severe, nothing long-lasting). Unfortunately, I had disease progression after my first two cycles and had the opportunity to switch over to the TIL arm of the trial I was in, but if I had to do IL-2 again, I would. Despite the progression, IL-2 may still have played a role in slowing things down, too. However, given the data we already have about ipi, nivo, and pembro, today, I think I'd lean towards one of them (or a combination) vs. IL-2 as I've already stated. But I understand the mindset that might want to try IL-2 first under the right circumstances.
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- August 28, 2014 at 3:48 pm
Thanks Hazel. To clarify for everyone else, I wasn't recommending myself that IL-2 is the best option in Liam's father's case, only why I think some doctors still recommend it for some situations and that for certain patients, given even a small chance at a very durable response, they may consider it as something they'd like to try first, especially knowing there are other options to try afterwards.
I managed to get more than one very negative response via email asking why I would recommend IL-2 to anyone, which wasn't my intent.
Joe
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- August 28, 2014 at 3:48 pm
Thanks Hazel. To clarify for everyone else, I wasn't recommending myself that IL-2 is the best option in Liam's father's case, only why I think some doctors still recommend it for some situations and that for certain patients, given even a small chance at a very durable response, they may consider it as something they'd like to try first, especially knowing there are other options to try afterwards.
I managed to get more than one very negative response via email asking why I would recommend IL-2 to anyone, which wasn't my intent.
Joe
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- August 28, 2014 at 3:48 pm
Thanks Hazel. To clarify for everyone else, I wasn't recommending myself that IL-2 is the best option in Liam's father's case, only why I think some doctors still recommend it for some situations and that for certain patients, given even a small chance at a very durable response, they may consider it as something they'd like to try first, especially knowing there are other options to try afterwards.
I managed to get more than one very negative response via email asking why I would recommend IL-2 to anyone, which wasn't my intent.
Joe
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- August 27, 2014 at 12:14 am
Liam,
We had one oncologist suggest IL2 but all the others said it's not worth the side effects. Perhaps Dr. Wong has a really good reason for starting with IL2? But I'm glad you're going to UCLA and Angeles – perhaps you'll have at least 2 of the docs agree on a treatment plan.
Best of luck –
Hazel
-
- August 26, 2014 at 7:18 am
thank you for your response. Dr. O'Day was suggesting starting with Ipi and then PD1, but still mentioning that there is no one right way. Dr. Wong was strongly suggesting starting with IL2. He is not having any symptoms and in fact feels great! as far as the biopsy we are still unsure. It looks like one of the tumors is easily accesible but not the other. it seems he should get treated regardless. will start looking for clinical trials so that he gets access to PD-1 even if in combination with other drug. Have appointments on wednesday at ucla and angeles clinic. will ask them more questions. thanks again! should you have any other suggestions or clinical trial tips please let me know.
cheers,
-
- August 25, 2014 at 9:41 pm
I've had IL-2 and ipilimumab (Yervoy), but not PD-1, but given the choice today without any other information or eligibility requirements (like a biomarker test that says that ipilimumab would be better for me specifically), I think PD-1 would have to be my first choice — simply, in the ongoing trials, it has demonstrated a higher response rate with fewer side effects than ipilimumab.
However, it is widely believed that the approval of Merck's PD-1 (pembrolizumab) will, at least initially, come with a requirement that a patient first try and fail ipilimumab, in other words, the approval won't be as a first-line therapy for melanoma. The early access programs (EAPs) for both Merck's and BMS's PD-1 therapies are structured the same way (BRAF-positive patients must have also tried and failed a BRAF agent, but that doesn't apply to your father). A few things to note, though: (1) I have heard from more than one medical professional "in the know" that it isn't 100% guaranteed that the approval will come with this ipilimumab-first requirement, (2) the approval for pembrolizumab may be coming sooner than late October, as soon as the next few weeks, according to an article today on Reuters (http://www.reuters.com/article/2014/08/25/us-merck-cancer-fda-idUSKBN0GP0VU20140825) — granted, that puts us in mid-September, but it is a little sooner, and (3) if the ipilimumab-first requirement is initially put in place, the expectation is that it would probably be "lifted" after perhaps six months or so, after the final Phase III trial results are submitted and reviewed by the FDA.
The challenge is that there are a lot of "what-ifs" that may take up to two months before there are answers, and no guarantee what those answers may be. Within two months (9 weeks from first dose to last dose), your father could complete a full four-dose course of ipilimumab. As noted in your post, clinical trials are also an option — the EAPs, as I mentioned above wouldn't be an option because of the ipilimumab-first requirement. You could seek out a trial for PD-1 and there are trials combining BMS's PD-1 (nivolumab) with ipilimumab (also a BMS product). I think you may have mentioned in an earlier post that your father's primary residence is out-of-country — I don't know if that factors into insurance, cost, or anything, so I'm just setting that aside for this conversation.
Did Drs. O'Day or Wong make any recommendations (or strong suggestions), or simply explain the options? Also, what are your plans for the needle biopsy? Will you be proceeding with that and if so, when? Given the size (1-cm is relatively small), I'm guessing that he's not having any symptoms associated with the presence of the two of them, but that's just a guess. And they could be very slow-growing and stay stable in size well past the time that the FDA approves Merck's PD-1, or they might not — another "what-if".
So, long story short, back to your original question and factoring in the timing and approval requirements for PD-1, if it were me today, I'd probably either start ipilimumab sooner-rather-than-later, or find a trial for nivolumab plus ipilimumab. That, of course, is my opinion, I hope many others weigh in here, too, with their thoughts. For what it's worth, you've taken a sound approach and sought out experts in the field and are doing all the right things — remember that there won't be a perfect decision because of the unanswerable questions that are still out there. Wishing you and your father the best!
Joe
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- August 25, 2014 at 9:41 pm
I've had IL-2 and ipilimumab (Yervoy), but not PD-1, but given the choice today without any other information or eligibility requirements (like a biomarker test that says that ipilimumab would be better for me specifically), I think PD-1 would have to be my first choice — simply, in the ongoing trials, it has demonstrated a higher response rate with fewer side effects than ipilimumab.
However, it is widely believed that the approval of Merck's PD-1 (pembrolizumab) will, at least initially, come with a requirement that a patient first try and fail ipilimumab, in other words, the approval won't be as a first-line therapy for melanoma. The early access programs (EAPs) for both Merck's and BMS's PD-1 therapies are structured the same way (BRAF-positive patients must have also tried and failed a BRAF agent, but that doesn't apply to your father). A few things to note, though: (1) I have heard from more than one medical professional "in the know" that it isn't 100% guaranteed that the approval will come with this ipilimumab-first requirement, (2) the approval for pembrolizumab may be coming sooner than late October, as soon as the next few weeks, according to an article today on Reuters (http://www.reuters.com/article/2014/08/25/us-merck-cancer-fda-idUSKBN0GP0VU20140825) — granted, that puts us in mid-September, but it is a little sooner, and (3) if the ipilimumab-first requirement is initially put in place, the expectation is that it would probably be "lifted" after perhaps six months or so, after the final Phase III trial results are submitted and reviewed by the FDA.
The challenge is that there are a lot of "what-ifs" that may take up to two months before there are answers, and no guarantee what those answers may be. Within two months (9 weeks from first dose to last dose), your father could complete a full four-dose course of ipilimumab. As noted in your post, clinical trials are also an option — the EAPs, as I mentioned above wouldn't be an option because of the ipilimumab-first requirement. You could seek out a trial for PD-1 and there are trials combining BMS's PD-1 (nivolumab) with ipilimumab (also a BMS product). I think you may have mentioned in an earlier post that your father's primary residence is out-of-country — I don't know if that factors into insurance, cost, or anything, so I'm just setting that aside for this conversation.
Did Drs. O'Day or Wong make any recommendations (or strong suggestions), or simply explain the options? Also, what are your plans for the needle biopsy? Will you be proceeding with that and if so, when? Given the size (1-cm is relatively small), I'm guessing that he's not having any symptoms associated with the presence of the two of them, but that's just a guess. And they could be very slow-growing and stay stable in size well past the time that the FDA approves Merck's PD-1, or they might not — another "what-if".
So, long story short, back to your original question and factoring in the timing and approval requirements for PD-1, if it were me today, I'd probably either start ipilimumab sooner-rather-than-later, or find a trial for nivolumab plus ipilimumab. That, of course, is my opinion, I hope many others weigh in here, too, with their thoughts. For what it's worth, you've taken a sound approach and sought out experts in the field and are doing all the right things — remember that there won't be a perfect decision because of the unanswerable questions that are still out there. Wishing you and your father the best!
Joe
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- August 25, 2014 at 9:49 pm
If it were me, I would wait for PD1 to be approved by the FDA because the cure rate is higher than other treatments.
The ONLY problem with waiting is that a patient might be required by the FDA to have "failed" yervoy first. Even though the doctor culd prescribe PD1, your insurance might not pay for the drug unless the patient fails Yervoy first.
What did Dr.O'day & Dr.Wong tell you about first having to FAIL Yervoy f beforeyou can get PD1 once it is approved by the FDA?
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- August 26, 2014 at 7:07 am
Dr. O'day mentioned having to go with yervoy first before being allowed to get PD1. He said it was unknown though exactly how it would work (whether one had to fail yervoy) once it was approved and available. Have appointments at UCLA and Angeles clinic on Wendesday. Will have more questions for them. It will be difficult just to sit and wait for approval of PD1. My inclination is to search for a clinical study that combines the 2 drugs or something along those lines since PD1 isn't quite availble yet.
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- August 26, 2014 at 7:07 am
Dr. O'day mentioned having to go with yervoy first before being allowed to get PD1. He said it was unknown though exactly how it would work (whether one had to fail yervoy) once it was approved and available. Have appointments at UCLA and Angeles clinic on Wendesday. Will have more questions for them. It will be difficult just to sit and wait for approval of PD1. My inclination is to search for a clinical study that combines the 2 drugs or something along those lines since PD1 isn't quite availble yet.
-
- August 26, 2014 at 7:07 am
Dr. O'day mentioned having to go with yervoy first before being allowed to get PD1. He said it was unknown though exactly how it would work (whether one had to fail yervoy) once it was approved and available. Have appointments at UCLA and Angeles clinic on Wendesday. Will have more questions for them. It will be difficult just to sit and wait for approval of PD1. My inclination is to search for a clinical study that combines the 2 drugs or something along those lines since PD1 isn't quite availble yet.
-
- August 25, 2014 at 9:49 pm
If it were me, I would wait for PD1 to be approved by the FDA because the cure rate is higher than other treatments.
The ONLY problem with waiting is that a patient might be required by the FDA to have "failed" yervoy first. Even though the doctor culd prescribe PD1, your insurance might not pay for the drug unless the patient fails Yervoy first.
What did Dr.O'day & Dr.Wong tell you about first having to FAIL Yervoy f beforeyou can get PD1 once it is approved by the FDA?
-
- August 25, 2014 at 9:49 pm
If it were me, I would wait for PD1 to be approved by the FDA because the cure rate is higher than other treatments.
The ONLY problem with waiting is that a patient might be required by the FDA to have "failed" yervoy first. Even though the doctor culd prescribe PD1, your insurance might not pay for the drug unless the patient fails Yervoy first.
What did Dr.O'day & Dr.Wong tell you about first having to FAIL Yervoy f beforeyou can get PD1 once it is approved by the FDA?
-
- August 25, 2014 at 10:57 pm
Just a couple of thoughts on the options you now face. The % on the PD-1 alone are ranging between 30-40% not 65%. The survival data on the combination of Ipi and PD-1 (Nivolumab) together is coming back really strong with 1 year survival #'s in the 80% range and 2 year survival in the 70% range. Down side the risk of drug related reaction are also higher with the combination group. If the lung nodules are not aggressive the waiting for approval of PD-1 might be a good way to go. Or look for expanded access to clinical trials of the combination Ipi and nivolumab. I waited from July of last year until Jan of 2014 to get into the Bristol Myer squibb trial of Ipi and Nivolumab and happy today that I did. I hope things go slow and many options are available. Ed
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- August 25, 2014 at 10:57 pm
Just a couple of thoughts on the options you now face. The % on the PD-1 alone are ranging between 30-40% not 65%. The survival data on the combination of Ipi and PD-1 (Nivolumab) together is coming back really strong with 1 year survival #'s in the 80% range and 2 year survival in the 70% range. Down side the risk of drug related reaction are also higher with the combination group. If the lung nodules are not aggressive the waiting for approval of PD-1 might be a good way to go. Or look for expanded access to clinical trials of the combination Ipi and nivolumab. I waited from July of last year until Jan of 2014 to get into the Bristol Myer squibb trial of Ipi and Nivolumab and happy today that I did. I hope things go slow and many options are available. Ed
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- August 26, 2014 at 3:31 pm
Good points Ed. I had a lung met that was not agressive, went from 0.6-cm to 1.2-cm in 9 months, then only 1.2-cm to 1.3-cm in another three. We could have waited longer to do anything, but took the opportunity to have it radiated (with a good result) when we had a "lull in the action".
Waiting would give some time to see how aggressive the lung mets are growing. The downside of waiting for the nivolumab approval is that no one knows for sure if it will come with the ipilimumab-first requirement, so it would be a shame to wait for the approval only to find out that it's not yet an option for him because he hasn't tried ipi first, especially if the lung mets turn out to be growing quickly. I'm hoping the FDA issues their approval in the next few weeks as the rumors are suggesting, but again, rumors are rumors and the FDA could still very well drag this out until the end of October. Which brings me back to the idea of taking the time now to try ipilimumab (to which he may very well respond and not even need to move on to PD-1), or, as you also suggest, seeking out an ipi+nivo combo trial.
Hopefully those are some specific options and discussion points you can have have at your upcoming follow-ups at Angeles and UCLA.
Joe
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- August 26, 2014 at 3:31 pm
Good points Ed. I had a lung met that was not agressive, went from 0.6-cm to 1.2-cm in 9 months, then only 1.2-cm to 1.3-cm in another three. We could have waited longer to do anything, but took the opportunity to have it radiated (with a good result) when we had a "lull in the action".
Waiting would give some time to see how aggressive the lung mets are growing. The downside of waiting for the nivolumab approval is that no one knows for sure if it will come with the ipilimumab-first requirement, so it would be a shame to wait for the approval only to find out that it's not yet an option for him because he hasn't tried ipi first, especially if the lung mets turn out to be growing quickly. I'm hoping the FDA issues their approval in the next few weeks as the rumors are suggesting, but again, rumors are rumors and the FDA could still very well drag this out until the end of October. Which brings me back to the idea of taking the time now to try ipilimumab (to which he may very well respond and not even need to move on to PD-1), or, as you also suggest, seeking out an ipi+nivo combo trial.
Hopefully those are some specific options and discussion points you can have have at your upcoming follow-ups at Angeles and UCLA.
Joe
-
- August 26, 2014 at 3:31 pm
Good points Ed. I had a lung met that was not agressive, went from 0.6-cm to 1.2-cm in 9 months, then only 1.2-cm to 1.3-cm in another three. We could have waited longer to do anything, but took the opportunity to have it radiated (with a good result) when we had a "lull in the action".
Waiting would give some time to see how aggressive the lung mets are growing. The downside of waiting for the nivolumab approval is that no one knows for sure if it will come with the ipilimumab-first requirement, so it would be a shame to wait for the approval only to find out that it's not yet an option for him because he hasn't tried ipi first, especially if the lung mets turn out to be growing quickly. I'm hoping the FDA issues their approval in the next few weeks as the rumors are suggesting, but again, rumors are rumors and the FDA could still very well drag this out until the end of October. Which brings me back to the idea of taking the time now to try ipilimumab (to which he may very well respond and not even need to move on to PD-1), or, as you also suggest, seeking out an ipi+nivo combo trial.
Hopefully those are some specific options and discussion points you can have have at your upcoming follow-ups at Angeles and UCLA.
Joe
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- August 25, 2014 at 10:57 pm
Just a couple of thoughts on the options you now face. The % on the PD-1 alone are ranging between 30-40% not 65%. The survival data on the combination of Ipi and PD-1 (Nivolumab) together is coming back really strong with 1 year survival #'s in the 80% range and 2 year survival in the 70% range. Down side the risk of drug related reaction are also higher with the combination group. If the lung nodules are not aggressive the waiting for approval of PD-1 might be a good way to go. Or look for expanded access to clinical trials of the combination Ipi and nivolumab. I waited from July of last year until Jan of 2014 to get into the Bristol Myer squibb trial of Ipi and Nivolumab and happy today that I did. I hope things go slow and many options are available. Ed
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- August 27, 2014 at 7:01 pm
My quick 2 cents. The treatments with proven "home run" potential (cure) are IL-2 (low percentage as noted), TIL and ipi. If I were starting fresh at this point in time, I'd aim for the ipi/nivolumab combo EAP or TIL. Either path has potential for rough side effects–with a big payoff. Just my opinion.
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- August 27, 2014 at 7:01 pm
My quick 2 cents. The treatments with proven "home run" potential (cure) are IL-2 (low percentage as noted), TIL and ipi. If I were starting fresh at this point in time, I'd aim for the ipi/nivolumab combo EAP or TIL. Either path has potential for rough side effects–with a big payoff. Just my opinion.
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- August 27, 2014 at 7:01 pm
My quick 2 cents. The treatments with proven "home run" potential (cure) are IL-2 (low percentage as noted), TIL and ipi. If I were starting fresh at this point in time, I'd aim for the ipi/nivolumab combo EAP or TIL. Either path has potential for rough side effects–with a big payoff. Just my opinion.
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- September 3, 2014 at 8:41 am
Hi Liam,
I'm going to go out on a limb here and share with you some melanoma treatments I have been using which are not standard of care, (SOC). I do have an oncologist and along the 3 year path have had surgeries ,(Stage 3 met/mel,) however I am sure that I am doing so well because of dietary changes and medicines which are better known in Europe than in US. Some things to look into. Helixor Mistletoe Pini (from Pine tree.) I've heard that Mistletoe is the most prescribed cancer medicine in the world. M.D. or N.D. perscription and guidance needed and "AVemar" a nutritional powder, much research on Melanoma, Eat whole food. Remove processed food. Stop eating sugar. Some fruit is OK. Eat only good oils, olive, coconut, raw flax. The Budwig diet is a whole protocol… I eat their primary mix (3T. FO/CC Flax Oil , 6T cottage cheese emulsified and 2T ground flax,) once per day. Fermented vegetables (saurekraut,) and Beet Kvass. There are many supplements as well. If interested I'll share it complete . I also have done 3 rounds of whole body and regional hyperthermia in B.C. Canada. I am BRAF pos, have been offered interlukin, IL-2 and Zelboraf. I have opted for surgery and hyperthermia. I have had PET/CT every 6 months and MRI as necessary. Am at this moment considering steriotactic radiotherapy for 1 tumor. I've found that being open to all options has worked best for me. There are Naturopathic doctors who specialize in cancer treatment, suffix of FABNO is used. . They and anthoposophical doctors will know about Mistletoe. My strategy has been to support my immune system and to use SOC treatments to debulk (remove tumor mass,) as necessary. The pending PD-1 drugs sound promising. Wishing you and your dad all the best on this journey. You can live with melanoma. Aloha, Ann
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- September 3, 2014 at 8:41 am
Hi Liam,
I'm going to go out on a limb here and share with you some melanoma treatments I have been using which are not standard of care, (SOC). I do have an oncologist and along the 3 year path have had surgeries ,(Stage 3 met/mel,) however I am sure that I am doing so well because of dietary changes and medicines which are better known in Europe than in US. Some things to look into. Helixor Mistletoe Pini (from Pine tree.) I've heard that Mistletoe is the most prescribed cancer medicine in the world. M.D. or N.D. perscription and guidance needed and "AVemar" a nutritional powder, much research on Melanoma, Eat whole food. Remove processed food. Stop eating sugar. Some fruit is OK. Eat only good oils, olive, coconut, raw flax. The Budwig diet is a whole protocol… I eat their primary mix (3T. FO/CC Flax Oil , 6T cottage cheese emulsified and 2T ground flax,) once per day. Fermented vegetables (saurekraut,) and Beet Kvass. There are many supplements as well. If interested I'll share it complete . I also have done 3 rounds of whole body and regional hyperthermia in B.C. Canada. I am BRAF pos, have been offered interlukin, IL-2 and Zelboraf. I have opted for surgery and hyperthermia. I have had PET/CT every 6 months and MRI as necessary. Am at this moment considering steriotactic radiotherapy for 1 tumor. I've found that being open to all options has worked best for me. There are Naturopathic doctors who specialize in cancer treatment, suffix of FABNO is used. . They and anthoposophical doctors will know about Mistletoe. My strategy has been to support my immune system and to use SOC treatments to debulk (remove tumor mass,) as necessary. The pending PD-1 drugs sound promising. Wishing you and your dad all the best on this journey. You can live with melanoma. Aloha, Ann
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- September 3, 2014 at 8:41 am
Hi Liam,
I'm going to go out on a limb here and share with you some melanoma treatments I have been using which are not standard of care, (SOC). I do have an oncologist and along the 3 year path have had surgeries ,(Stage 3 met/mel,) however I am sure that I am doing so well because of dietary changes and medicines which are better known in Europe than in US. Some things to look into. Helixor Mistletoe Pini (from Pine tree.) I've heard that Mistletoe is the most prescribed cancer medicine in the world. M.D. or N.D. perscription and guidance needed and "AVemar" a nutritional powder, much research on Melanoma, Eat whole food. Remove processed food. Stop eating sugar. Some fruit is OK. Eat only good oils, olive, coconut, raw flax. The Budwig diet is a whole protocol… I eat their primary mix (3T. FO/CC Flax Oil , 6T cottage cheese emulsified and 2T ground flax,) once per day. Fermented vegetables (saurekraut,) and Beet Kvass. There are many supplements as well. If interested I'll share it complete . I also have done 3 rounds of whole body and regional hyperthermia in B.C. Canada. I am BRAF pos, have been offered interlukin, IL-2 and Zelboraf. I have opted for surgery and hyperthermia. I have had PET/CT every 6 months and MRI as necessary. Am at this moment considering steriotactic radiotherapy for 1 tumor. I've found that being open to all options has worked best for me. There are Naturopathic doctors who specialize in cancer treatment, suffix of FABNO is used. . They and anthoposophical doctors will know about Mistletoe. My strategy has been to support my immune system and to use SOC treatments to debulk (remove tumor mass,) as necessary. The pending PD-1 drugs sound promising. Wishing you and your dad all the best on this journey. You can live with melanoma. Aloha, Ann
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