Recently diagnosed Stage IV: Treatment options?

Good Morning.  Sorry to hear that you and your wife are having to make these decisions.  I am happy we now have some decisions to make when it comes to melanoma.  My husband was treated with IL2, Yervoy, PD-1 and an IPI/biochemotherapy trial.  (among other trials as well)  I sent you an email with my contact information if you would like to talk further.  There are several people here who have responded very well to the PD-1 trial and it is currently in the news, possibly being approved by the FDA.  IL2 is tough but very do-able.  My husband also did a reinduction of Yervoy, but did not respond.  In my very humble opinion, PD-1 would be your best option right now given the results that some are having.  I also know that MD Anderson in Houston and NIH in Bethesda have TILS(tumor infiltrating lymphocytes) (I can tell you more about this) trials currently open.  I know this is all very overwhelming, and the information can be confusing.  I am happy to help if I can as I know others are as well.  Do you have a melanoma specialist?  Has your wife been tested for the Braf mutation?  So many questions….I wish your wife healing….Melissa

Good Morning.  Sorry to hear that you and your wife are having to make these decisions.  I am happy we now have some decisions to make when it comes to melanoma.  My husband was treated with IL2, Yervoy, PD-1 and an IPI/biochemotherapy trial.  (among other trials as well)  I sent you an email with my contact information if you would like to talk further.  There are several people here who have responded very well to the PD-1 trial and it is currently in the news, possibly being approved by the FDA.  IL2 is tough but very do-able.  My husband also did a reinduction of Yervoy, but did not respond.  In my very humble opinion, PD-1 would be your best option right now given the results that some are having.  I also know that MD Anderson in Houston and NIH in Bethesda have TILS(tumor infiltrating lymphocytes) (I can tell you more about this) trials currently open.  I know this is all very overwhelming, and the information can be confusing.  I am happy to help if I can as I know others are as well.  Do you have a melanoma specialist?  Has your wife been tested for the Braf mutation?  So many questions….I wish your wife healing….Melissa

Good Morning.  Sorry to hear that you and your wife are having to make these decisions.  I am happy we now have some decisions to make when it comes to melanoma.  My husband was treated with IL2, Yervoy, PD-1 and an IPI/biochemotherapy trial.  (among other trials as well)  I sent you an email with my contact information if you would like to talk further.  There are several people here who have responded very well to the PD-1 trial and it is currently in the news, possibly being approved by the FDA.  IL2 is tough but very do-able.  My husband also did a reinduction of Yervoy, but did not respond.  In my very humble opinion, PD-1 would be your best option right now given the results that some are having.  I also know that MD Anderson in Houston and NIH in Bethesda have TILS(tumor infiltrating lymphocytes) (I can tell you more about this) trials currently open.  I know this is all very overwhelming, and the information can be confusing.  I am happy to help if I can as I know others are as well.  Do you have a melanoma specialist?  Has your wife been tested for the Braf mutation?  So many questions….I wish your wife healing….Melissa

Greetings, I am sorry there is any need for you to be here, whatsoever. When I was diagnosed in 2002, there were very few options around for treatment, so in that regard, at least this is a time with viable options that are showing great promise. I had 3 doses of ipilimumab last Dec/Jan/Feb. Unable to take the 4th dose due to autoimmune pituitary response. My initial scans showed some shrinkage, but next scan showed progression again. I starte Merck PD1 trial in July. Initial scans 3 weeks ago show 67% shrinkage! Side effects have been pretty minimal for me. I can send you the most recent research article ( but written in mostly layman terms) that was just posted a couple of day sago concering PD1 preliminary results. Very promising statistics. Feel free to email me if I can answer any questions whatsoever. This board has provided me with a wealth of support and information, and I know you will find it to be every bit of that for you. I should mention that I became stage IV in 2005 , and I thank the Lord most every day that I am still alive and feeling well 🙂      Try not to get too caught up in the negative statistics out there online, many of them are rather outdated due to all the new treatment options on the market. One question..has she been tested for BRAF?

Tina

Greetings, I am sorry there is any need for you to be here, whatsoever. When I was diagnosed in 2002, there were very few options around for treatment, so in that regard, at least this is a time with viable options that are showing great promise. I had 3 doses of ipilimumab last Dec/Jan/Feb. Unable to take the 4th dose due to autoimmune pituitary response. My initial scans showed some shrinkage, but next scan showed progression again. I starte Merck PD1 trial in July. Initial scans 3 weeks ago show 67% shrinkage! Side effects have been pretty minimal for me. I can send you the most recent research article ( but written in mostly layman terms) that was just posted a couple of day sago concering PD1 preliminary results. Very promising statistics. Feel free to email me if I can answer any questions whatsoever. This board has provided me with a wealth of support and information, and I know you will find it to be every bit of that for you. I should mention that I became stage IV in 2005 , and I thank the Lord most every day that I am still alive and feeling well 🙂      Try not to get too caught up in the negative statistics out there online, many of them are rather outdated due to all the new treatment options on the market. One question..has she been tested for BRAF?

Tina

Greetings, I am sorry there is any need for you to be here, whatsoever. When I was diagnosed in 2002, there were very few options around for treatment, so in that regard, at least this is a time with viable options that are showing great promise. I had 3 doses of ipilimumab last Dec/Jan/Feb. Unable to take the 4th dose due to autoimmune pituitary response. My initial scans showed some shrinkage, but next scan showed progression again. I starte Merck PD1 trial in July. Initial scans 3 weeks ago show 67% shrinkage! Side effects have been pretty minimal for me. I can send you the most recent research article ( but written in mostly layman terms) that was just posted a couple of day sago concering PD1 preliminary results. Very promising statistics. Feel free to email me if I can answer any questions whatsoever. This board has provided me with a wealth of support and information, and I know you will find it to be every bit of that for you. I should mention that I became stage IV in 2005 , and I thank the Lord most every day that I am still alive and feeling well 🙂      Try not to get too caught up in the negative statistics out there online, many of them are rather outdated due to all the new treatment options on the market. One question..has she been tested for BRAF?

Tina

Hello,

I am very sorry to hear of your wife having to join this group but it is a very good one for helping with ideas of what to do and supporting the patient and family.

I have a question, how did you come to the conclusion that she was stage IV or are you meaning Breslow IV which it totally different.  The stage IV usually comes with metastisis in organs.  

My husband was diagnosed Stage III and his initial surgery was for a much deeper lesion (10.5 mm) and it was ulcerated.  He had it removed and a Sentinel Node with clear margins.  His next surgery was when he had another lesion removed near the area of the first, the next lesion surgery was also in close proximity and then another surgery in the clavical area for yet another lesion.  After this he was Stage IIIc .  Then it was found in scans that he had lesions in the liver and lungs along with an unresectable lesion pressing on the vertebrae at Cervical spine C1 C2 area.  My husband took Ipi 10 mg/kg along with the GM-CSF Clinical Trial which he started in Mar. 2011.  He became NED (no evidence of disease) in  Oct. 2012 and just recently quit the trial.  You can read more on his profile if you wish.

Do you have copies of the pathology reports? scans? We have our own personal copy of these items.  Is she seeing a melanoma specialists?

If you can post the pathology report someone on here might be able to help you decipher it.  If it is the Breslow Stage you are looking at then her cancer is not as widespread and it might make you feel a little better about what you are reading.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

I am very sorry to hear of your wife having to join this group but it is a very good one for helping with ideas of what to do and supporting the patient and family.

I have a question, how did you come to the conclusion that she was stage IV or are you meaning Breslow IV which it totally different.  The stage IV usually comes with metastisis in organs.  

My husband was diagnosed Stage III and his initial surgery was for a much deeper lesion (10.5 mm) and it was ulcerated.  He had it removed and a Sentinel Node with clear margins.  His next surgery was when he had another lesion removed near the area of the first, the next lesion surgery was also in close proximity and then another surgery in the clavical area for yet another lesion.  After this he was Stage IIIc .  Then it was found in scans that he had lesions in the liver and lungs along with an unresectable lesion pressing on the vertebrae at Cervical spine C1 C2 area.  My husband took Ipi 10 mg/kg along with the GM-CSF Clinical Trial which he started in Mar. 2011.  He became NED (no evidence of disease) in  Oct. 2012 and just recently quit the trial.  You can read more on his profile if you wish.

Do you have copies of the pathology reports? scans? We have our own personal copy of these items.  Is she seeing a melanoma specialists?

If you can post the pathology report someone on here might be able to help you decipher it.  If it is the Breslow Stage you are looking at then her cancer is not as widespread and it might make you feel a little better about what you are reading.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

I am very sorry to hear of your wife having to join this group but it is a very good one for helping with ideas of what to do and supporting the patient and family.

I have a question, how did you come to the conclusion that she was stage IV or are you meaning Breslow IV which it totally different.  The stage IV usually comes with metastisis in organs.  

My husband was diagnosed Stage III and his initial surgery was for a much deeper lesion (10.5 mm) and it was ulcerated.  He had it removed and a Sentinel Node with clear margins.  His next surgery was when he had another lesion removed near the area of the first, the next lesion surgery was also in close proximity and then another surgery in the clavical area for yet another lesion.  After this he was Stage IIIc .  Then it was found in scans that he had lesions in the liver and lungs along with an unresectable lesion pressing on the vertebrae at Cervical spine C1 C2 area.  My husband took Ipi 10 mg/kg along with the GM-CSF Clinical Trial which he started in Mar. 2011.  He became NED (no evidence of disease) in  Oct. 2012 and just recently quit the trial.  You can read more on his profile if you wish.

Do you have copies of the pathology reports? scans? We have our own personal copy of these items.  Is she seeing a melanoma specialists?

If you can post the pathology report someone on here might be able to help you decipher it.  If it is the Breslow Stage you are looking at then her cancer is not as widespread and it might make you feel a little better about what you are reading.

Judy (loving wife of Gene Stage IV and now NED)

I know some people have had some success with repeating Ipi, so that is certainly an option. I guess it depends on how quickly you/her and your/her doctors feel she is progressing/where her tumors are- whether or not there is time to wait for the 4 doses plus some extra time involved to see if Ipi is working. You didn't say when she did the Ipi (how long has it been?) but you did say it was part of a trial, so I'm guessing she was initially diagnosed as a stage III who has now progressed to stage IV. I'm a stage IV and I finished Ipi with GM-CSF (not through a trial) in August. I had a somewhat mixed response with some tumors shrinking and some not. The agreement with my doctors is that for me it's too close to the initial 4 doses to make it worthwhile try Ipi again. If it was going to work, it would have. If I was 6 months or more out from my last dose it would be worth a try, but not this close to finishing one course. 

I was also a stage III, initial diagnosis in 2011. I progressed to stage IV about this time last year after several surgeries and a full year of interferon. I started IL-2 last December and did 3 cycles, which ended in May 2013. Things improved the whole time I was on IL-2 and even today none of the pre-IL-2 tumors have regrown, but other tumors tarted growing all over the place shortly after I finished the last cycle, including in my brain, so it was on to brain radiation and Ipi this summer. Now it looks like that isn't going to do it so I'm looking at PD-1 trials. 

She's already had Ipi, so I don't think it's wrong to go to a PD-1 trial. If PD-1 doesn't seem to be working she can withdraw from the trial, try Ipi again, or perhaps go to IL-2. The only concern may be that PD-1 drugs haven't been used long enough to know if there is any added risk to doing IL-2 after PD-1 (and in your case Ipi). I was told by my doctors that there is an increased risk of severe colitis (which can be life threatening and would certainly halt therapy) when you do IL-2 after Ipi, which is why my doctors started me with IL-2 then chose Ipi later. I would talk to your doctors to get their opinions about these types of risk when considering your options. I will tell you that IL-2 is REALLY hard, but you (or rather your wife) just have to remember that as really really horrible as you feel while your recieving the infusions, it takes less than 24 hours after the infusions stop to start feeling remarkably better and really you'll be mostly recovered within a couple days so you just have to soldier through while your getting them and remember it'll get better quickly. I can go into more detail about my speicific side effects if you'd like, but this post is plenty long for now.

Good luck with the decision making, and be happy you at least have options.

-Eva

I know some people have had some success with repeating Ipi, so that is certainly an option. I guess it depends on how quickly you/her and your/her doctors feel she is progressing/where her tumors are- whether or not there is time to wait for the 4 doses plus some extra time involved to see if Ipi is working. You didn't say when she did the Ipi (how long has it been?) but you did say it was part of a trial, so I'm guessing she was initially diagnosed as a stage III who has now progressed to stage IV. I'm a stage IV and I finished Ipi with GM-CSF (not through a trial) in August. I had a somewhat mixed response with some tumors shrinking and some not. The agreement with my doctors is that for me it's too close to the initial 4 doses to make it worthwhile try Ipi again. If it was going to work, it would have. If I was 6 months or more out from my last dose it would be worth a try, but not this close to finishing one course. 

I was also a stage III, initial diagnosis in 2011. I progressed to stage IV about this time last year after several surgeries and a full year of interferon. I started IL-2 last December and did 3 cycles, which ended in May 2013. Things improved the whole time I was on IL-2 and even today none of the pre-IL-2 tumors have regrown, but other tumors tarted growing all over the place shortly after I finished the last cycle, including in my brain, so it was on to brain radiation and Ipi this summer. Now it looks like that isn't going to do it so I'm looking at PD-1 trials. 

She's already had Ipi, so I don't think it's wrong to go to a PD-1 trial. If PD-1 doesn't seem to be working she can withdraw from the trial, try Ipi again, or perhaps go to IL-2. The only concern may be that PD-1 drugs haven't been used long enough to know if there is any added risk to doing IL-2 after PD-1 (and in your case Ipi). I was told by my doctors that there is an increased risk of severe colitis (which can be life threatening and would certainly halt therapy) when you do IL-2 after Ipi, which is why my doctors started me with IL-2 then chose Ipi later. I would talk to your doctors to get their opinions about these types of risk when considering your options. I will tell you that IL-2 is REALLY hard, but you (or rather your wife) just have to remember that as really really horrible as you feel while your recieving the infusions, it takes less than 24 hours after the infusions stop to start feeling remarkably better and really you'll be mostly recovered within a couple days so you just have to soldier through while your getting them and remember it'll get better quickly. I can go into more detail about my speicific side effects if you'd like, but this post is plenty long for now.

Good luck with the decision making, and be happy you at least have options.

-Eva

I know some people have had some success with repeating Ipi, so that is certainly an option. I guess it depends on how quickly you/her and your/her doctors feel she is progressing/where her tumors are- whether or not there is time to wait for the 4 doses plus some extra time involved to see if Ipi is working. You didn't say when she did the Ipi (how long has it been?) but you did say it was part of a trial, so I'm guessing she was initially diagnosed as a stage III who has now progressed to stage IV. I'm a stage IV and I finished Ipi with GM-CSF (not through a trial) in August. I had a somewhat mixed response with some tumors shrinking and some not. The agreement with my doctors is that for me it's too close to the initial 4 doses to make it worthwhile try Ipi again. If it was going to work, it would have. If I was 6 months or more out from my last dose it would be worth a try, but not this close to finishing one course. 

I was also a stage III, initial diagnosis in 2011. I progressed to stage IV about this time last year after several surgeries and a full year of interferon. I started IL-2 last December and did 3 cycles, which ended in May 2013. Things improved the whole time I was on IL-2 and even today none of the pre-IL-2 tumors have regrown, but other tumors tarted growing all over the place shortly after I finished the last cycle, including in my brain, so it was on to brain radiation and Ipi this summer. Now it looks like that isn't going to do it so I'm looking at PD-1 trials. 

She's already had Ipi, so I don't think it's wrong to go to a PD-1 trial. If PD-1 doesn't seem to be working she can withdraw from the trial, try Ipi again, or perhaps go to IL-2. The only concern may be that PD-1 drugs haven't been used long enough to know if there is any added risk to doing IL-2 after PD-1 (and in your case Ipi). I was told by my doctors that there is an increased risk of severe colitis (which can be life threatening and would certainly halt therapy) when you do IL-2 after Ipi, which is why my doctors started me with IL-2 then chose Ipi later. I would talk to your doctors to get their opinions about these types of risk when considering your options. I will tell you that IL-2 is REALLY hard, but you (or rather your wife) just have to remember that as really really horrible as you feel while your recieving the infusions, it takes less than 24 hours after the infusions stop to start feeling remarkably better and really you'll be mostly recovered within a couple days so you just have to soldier through while your getting them and remember it'll get better quickly. I can go into more detail about my speicific side effects if you'd like, but this post is plenty long for now.

Good luck with the decision making, and be happy you at least have options.

-Eva

Just a few thoughts about this.  We are in a time when a number of things might work, but no-one really knows which one will work in which case, or for how long.  Some people believe you should try older approaches first and save newer things for later, in case the older things don't work.  Others feel just the opposite.  Even very good, top melanoma doctors will disagree on the right approach for a specific patient.

Has your wife's tumor been tested for genetic mutations?  About half of melanomas have mutated BRAF, and drugs exist that will only work in those tumors.  Another group have mutated c-KIT or NRAS, and drugs or trials are available for those as well.  This approach is called "targeted therapy".  

The three drugs you mention are all immunotherapy, designed to engage the immune system in the fight against cancer.  

IL2 has been on the market for 15 years.  It has rather challenging side effects, though doctors who use it often have become very good at managing those.  About 15% of patients have some response to IL2, and about 5% are cured.  Doctors who like this approach argue that these numbers are based on the most desperate cases, and that if IL2 is used first, before other therapies, the response rates are higher.

Yervoy was approved by the FDA in 2011.  The side effects can be severe, but also can be quite manageable.  It varies from person to person, but most patients tolerate it fairly well. Response rates are about 18% and we don't yet know what percent of people are cured.  Certainly some people are now 10 years out and still cancer-free.  Yervoy almost was dropped because initial data showed tumor growth.  The doctors following patients decided to give it more time and then saw tumors shrink.  Apparently the tumors can react to Yervoy and become inflammed.  The tumors aren't growing so much as they are swelling.  Depending on how long your wife has been on Yervoy this may be happening with her; certainly you should ask your doctor about this.  It is not unusual for patients to take weeks to show response, and some don't respond for months.

Two different companies are working on PD-1, Merck and BMS.  Both are showing a lot of promise, with side effects lower than Yervoy and response rates higher.  Early data (and this will change) suggest 40  to 50% of patients respond.  BMS is also running a trial that combines their PD1 drug with Yervoy, and that is showing promise as well.

You should feel completely comfortable getting a second opinion if you have any concerns or questions.  If you do seek a second opinion you should go to a center that treats a lot of melanoma.

Tim–MRF

Just a few thoughts about this.  We are in a time when a number of things might work, but no-one really knows which one will work in which case, or for how long.  Some people believe you should try older approaches first and save newer things for later, in case the older things don't work.  Others feel just the opposite.  Even very good, top melanoma doctors will disagree on the right approach for a specific patient.

Has your wife's tumor been tested for genetic mutations?  About half of melanomas have mutated BRAF, and drugs exist that will only work in those tumors.  Another group have mutated c-KIT or NRAS, and drugs or trials are available for those as well.  This approach is called "targeted therapy".  

The three drugs you mention are all immunotherapy, designed to engage the immune system in the fight against cancer.  

IL2 has been on the market for 15 years.  It has rather challenging side effects, though doctors who use it often have become very good at managing those.  About 15% of patients have some response to IL2, and about 5% are cured.  Doctors who like this approach argue that these numbers are based on the most desperate cases, and that if IL2 is used first, before other therapies, the response rates are higher.

Yervoy was approved by the FDA in 2011.  The side effects can be severe, but also can be quite manageable.  It varies from person to person, but most patients tolerate it fairly well. Response rates are about 18% and we don't yet know what percent of people are cured.  Certainly some people are now 10 years out and still cancer-free.  Yervoy almost was dropped because initial data showed tumor growth.  The doctors following patients decided to give it more time and then saw tumors shrink.  Apparently the tumors can react to Yervoy and become inflammed.  The tumors aren't growing so much as they are swelling.  Depending on how long your wife has been on Yervoy this may be happening with her; certainly you should ask your doctor about this.  It is not unusual for patients to take weeks to show response, and some don't respond for months.

Two different companies are working on PD-1, Merck and BMS.  Both are showing a lot of promise, with side effects lower than Yervoy and response rates higher.  Early data (and this will change) suggest 40  to 50% of patients respond.  BMS is also running a trial that combines their PD1 drug with Yervoy, and that is showing promise as well.

You should feel completely comfortable getting a second opinion if you have any concerns or questions.  If you do seek a second opinion you should go to a center that treats a lot of melanoma.

Tim–MRF

Just a few thoughts about this.  We are in a time when a number of things might work, but no-one really knows which one will work in which case, or for how long.  Some people believe you should try older approaches first and save newer things for later, in case the older things don't work.  Others feel just the opposite.  Even very good, top melanoma doctors will disagree on the right approach for a specific patient.

Has your wife's tumor been tested for genetic mutations?  About half of melanomas have mutated BRAF, and drugs exist that will only work in those tumors.  Another group have mutated c-KIT or NRAS, and drugs or trials are available for those as well.  This approach is called "targeted therapy".  

The three drugs you mention are all immunotherapy, designed to engage the immune system in the fight against cancer.  

IL2 has been on the market for 15 years.  It has rather challenging side effects, though doctors who use it often have become very good at managing those.  About 15% of patients have some response to IL2, and about 5% are cured.  Doctors who like this approach argue that these numbers are based on the most desperate cases, and that if IL2 is used first, before other therapies, the response rates are higher.

Yervoy was approved by the FDA in 2011.  The side effects can be severe, but also can be quite manageable.  It varies from person to person, but most patients tolerate it fairly well. Response rates are about 18% and we don't yet know what percent of people are cured.  Certainly some people are now 10 years out and still cancer-free.  Yervoy almost was dropped because initial data showed tumor growth.  The doctors following patients decided to give it more time and then saw tumors shrink.  Apparently the tumors can react to Yervoy and become inflammed.  The tumors aren't growing so much as they are swelling.  Depending on how long your wife has been on Yervoy this may be happening with her; certainly you should ask your doctor about this.  It is not unusual for patients to take weeks to show response, and some don't respond for months.

Two different companies are working on PD-1, Merck and BMS.  Both are showing a lot of promise, with side effects lower than Yervoy and response rates higher.  Early data (and this will change) suggest 40  to 50% of patients respond.  BMS is also running a trial that combines their PD1 drug with Yervoy, and that is showing promise as well.

You should feel completely comfortable getting a second opinion if you have any concerns or questions.  If you do seek a second opinion you should go to a center that treats a lot of melanoma.

Tim–MRF