Melanoma back after 32 years

I'm sorry to hear that your melanoma has returned.

Are you being seen by a specialist at a melanoma clinic/center? I'm surprised that your doctor is suggesting you participate in a trial when there are other options available for Stage IV patients.

If your melanoma has a mutation called BRAF, you can take Zelboraf. In a nutshell, Zelboraf shrinks tumors quickly. Some folks have had long-lasting responses while others have not. When you pair Zelboraf with something called a MEK inhibitor folks do better. The only catch is that MEK inhibitors have not been FDA approved yet.

There's also Yervoy (aka "Ipi"). Yervoy has had some durable responses but causes some nasty side effects in patients.

There are trials for a drug called Anti PD-1, which look really promising for Stage IV patients.

So there are other options for you besides a Phase I trial.

I'm sorry to hear that your melanoma has returned.

Are you being seen by a specialist at a melanoma clinic/center? I'm surprised that your doctor is suggesting you participate in a trial when there are other options available for Stage IV patients.

If your melanoma has a mutation called BRAF, you can take Zelboraf. In a nutshell, Zelboraf shrinks tumors quickly. Some folks have had long-lasting responses while others have not. When you pair Zelboraf with something called a MEK inhibitor folks do better. The only catch is that MEK inhibitors have not been FDA approved yet.

There's also Yervoy (aka "Ipi"). Yervoy has had some durable responses but causes some nasty side effects in patients.

There are trials for a drug called Anti PD-1, which look really promising for Stage IV patients.

So there are other options for you besides a Phase I trial.

I'm sorry to hear that your melanoma has returned.

Are you being seen by a specialist at a melanoma clinic/center? I'm surprised that your doctor is suggesting you participate in a trial when there are other options available for Stage IV patients.

If your melanoma has a mutation called BRAF, you can take Zelboraf. In a nutshell, Zelboraf shrinks tumors quickly. Some folks have had long-lasting responses while others have not. When you pair Zelboraf with something called a MEK inhibitor folks do better. The only catch is that MEK inhibitors have not been FDA approved yet.

There's also Yervoy (aka "Ipi"). Yervoy has had some durable responses but causes some nasty side effects in patients.

There are trials for a drug called Anti PD-1, which look really promising for Stage IV patients.

So there are other options for you besides a Phase I trial.

After 32 years it's come back? That's a lot to get hit with. So now you've got some learning to do about current treatments, but if you've gotten this far you're already coming up to speed quickly.

Like Linny says, the Anti-PD1 drugs are by all accounts very promising. There are more than one anti-PD1 drug however, and MK-3475 is one of them (from Merck). Hopefully some other folks on that trial (Robert et al) will chime in. According to my search on http://clinicaltrials.gov just now, there are two current trials, a phase I and a phase II study. Which one is your oncologist recommending? For the phase II study only, there are two arms, one gets MK-3475, one gets Dacarbazine. I think most if not all people would want to end up in the MK-3475 arm.

The other main anti-PD1 drugs in trial is from Bristol Myers Squibb, BMS-936558 (now named Nivolumab). It's a little further along, I think it's hit phase III with a trial with multiple arms (may or may not get anti-PD1). There are a bunch of other trials for this one too, alone and in combination, or requiring previous Yervoy — a whole mix of different combinations.

To help you sort through it all, over on the MIF (Melanoma International Foundation) web site, the moderator Catherine Poole is keeping track of which anti-PD1 trials are actually recruiting and have open slots, she has contacts with a lot of the trials and companies. You can see her post here, http://www.z2systems.com/mif/viewtopic.php?f=54&t=34105. This post is specifally about the Merck anti-PD1 trials but she is also keeping up with the BMS ones. You can email her and ask her any questions you have about anti-PD1 trials.

After 32 years it's come back? That's a lot to get hit with. So now you've got some learning to do about current treatments, but if you've gotten this far you're already coming up to speed quickly.

Like Linny says, the Anti-PD1 drugs are by all accounts very promising. There are more than one anti-PD1 drug however, and MK-3475 is one of them (from Merck). Hopefully some other folks on that trial (Robert et al) will chime in. According to my search on http://clinicaltrials.gov just now, there are two current trials, a phase I and a phase II study. Which one is your oncologist recommending? For the phase II study only, there are two arms, one gets MK-3475, one gets Dacarbazine. I think most if not all people would want to end up in the MK-3475 arm.

The other main anti-PD1 drugs in trial is from Bristol Myers Squibb, BMS-936558 (now named Nivolumab). It's a little further along, I think it's hit phase III with a trial with multiple arms (may or may not get anti-PD1). There are a bunch of other trials for this one too, alone and in combination, or requiring previous Yervoy — a whole mix of different combinations.

To help you sort through it all, over on the MIF (Melanoma International Foundation) web site, the moderator Catherine Poole is keeping track of which anti-PD1 trials are actually recruiting and have open slots, she has contacts with a lot of the trials and companies. You can see her post here, http://www.z2systems.com/mif/viewtopic.php?f=54&t=34105. This post is specifally about the Merck anti-PD1 trials but she is also keeping up with the BMS ones. You can email her and ask her any questions you have about anti-PD1 trials.

After 32 years it's come back? That's a lot to get hit with. So now you've got some learning to do about current treatments, but if you've gotten this far you're already coming up to speed quickly.

Like Linny says, the Anti-PD1 drugs are by all accounts very promising. There are more than one anti-PD1 drug however, and MK-3475 is one of them (from Merck). Hopefully some other folks on that trial (Robert et al) will chime in. According to my search on http://clinicaltrials.gov just now, there are two current trials, a phase I and a phase II study. Which one is your oncologist recommending? For the phase II study only, there are two arms, one gets MK-3475, one gets Dacarbazine. I think most if not all people would want to end up in the MK-3475 arm.

The other main anti-PD1 drugs in trial is from Bristol Myers Squibb, BMS-936558 (now named Nivolumab). It's a little further along, I think it's hit phase III with a trial with multiple arms (may or may not get anti-PD1). There are a bunch of other trials for this one too, alone and in combination, or requiring previous Yervoy — a whole mix of different combinations.

To help you sort through it all, over on the MIF (Melanoma International Foundation) web site, the moderator Catherine Poole is keeping track of which anti-PD1 trials are actually recruiting and have open slots, she has contacts with a lot of the trials and companies. You can see her post here, http://www.z2systems.com/mif/viewtopic.php?f=54&t=34105. This post is specifally about the Merck anti-PD1 trials but she is also keeping up with the BMS ones. You can email her and ask her any questions you have about anti-PD1 trials.

Hello, so sorry to hear about it coming back after sooo long!!

As linny said there are two drugs fda approved.  There is vemurafenib but you have to be test for the Braf mutation.  Only positive mutations can take this drug.  About 50% of people have it and if so the drug works very fast in shrinking tumors, but usually only last for about 6 months.  The other is Yervoy (ipilimumab),  This is an immunetherapy drug that takes the brakes off your immune system to fight the cancer itself.  There is a common side effect of colitis though as well as some other side effects that can be serious, but responses tend to last for a long time.  I believe there is a lady who is still cancer free after 11 years post Yervoy.  

As for merk-3475 trial, also known as Anti-pd1, this is another Immune therapy drug, but it works a bit differently by binding with a ligand on the cancer tumor itself, but most results thus far show that if you dont have the pd1 ligand, the drug will not work. Merk-3475 a lot less side effects than Yervoy (which doesnt have a real target, so it can attack healthy cells as well).

My boyfriend Randy is on the Merk-3475 trial at UCLA, he has his fourth infusion on monday, so far pretty much no side effects other than a slight cough every once in a while, and some minor joint pain.  All of his tumors under his skin we can feel, about 5 or 6 are all 'significantly' smaller  according to the dr. last time we saw him.  He had a tumor under his jaw very noticably protruding out from his jaw area, which is now almost not visible, and his jaw line looks normal.  Also he has a tumor on his pectoral area that was the size of a softball, i believe it was like 15cm (not sure on the exact size) it is now a lottt smaller, and still shrinking.  We have yet to have the scans yet, but im hoping ALL the tumors are responding.  Time will tell.

 I hope my info was helpful, sorry to write so much.  If you have questions, i'd be glad to answer to the best of my ability.

Hello, so sorry to hear about it coming back after sooo long!!

As linny said there are two drugs fda approved.  There is vemurafenib but you have to be test for the Braf mutation.  Only positive mutations can take this drug.  About 50% of people have it and if so the drug works very fast in shrinking tumors, but usually only last for about 6 months.  The other is Yervoy (ipilimumab),  This is an immunetherapy drug that takes the brakes off your immune system to fight the cancer itself.  There is a common side effect of colitis though as well as some other side effects that can be serious, but responses tend to last for a long time.  I believe there is a lady who is still cancer free after 11 years post Yervoy.  

As for merk-3475 trial, also known as Anti-pd1, this is another Immune therapy drug, but it works a bit differently by binding with a ligand on the cancer tumor itself, but most results thus far show that if you dont have the pd1 ligand, the drug will not work. Merk-3475 a lot less side effects than Yervoy (which doesnt have a real target, so it can attack healthy cells as well).

My boyfriend Randy is on the Merk-3475 trial at UCLA, he has his fourth infusion on monday, so far pretty much no side effects other than a slight cough every once in a while, and some minor joint pain.  All of his tumors under his skin we can feel, about 5 or 6 are all 'significantly' smaller  according to the dr. last time we saw him.  He had a tumor under his jaw very noticably protruding out from his jaw area, which is now almost not visible, and his jaw line looks normal.  Also he has a tumor on his pectoral area that was the size of a softball, i believe it was like 15cm (not sure on the exact size) it is now a lottt smaller, and still shrinking.  We have yet to have the scans yet, but im hoping ALL the tumors are responding.  Time will tell.

 I hope my info was helpful, sorry to write so much.  If you have questions, i'd be glad to answer to the best of my ability.

Hello, so sorry to hear about it coming back after sooo long!!

As linny said there are two drugs fda approved.  There is vemurafenib but you have to be test for the Braf mutation.  Only positive mutations can take this drug.  About 50% of people have it and if so the drug works very fast in shrinking tumors, but usually only last for about 6 months.  The other is Yervoy (ipilimumab),  This is an immunetherapy drug that takes the brakes off your immune system to fight the cancer itself.  There is a common side effect of colitis though as well as some other side effects that can be serious, but responses tend to last for a long time.  I believe there is a lady who is still cancer free after 11 years post Yervoy.  

As for merk-3475 trial, also known as Anti-pd1, this is another Immune therapy drug, but it works a bit differently by binding with a ligand on the cancer tumor itself, but most results thus far show that if you dont have the pd1 ligand, the drug will not work. Merk-3475 a lot less side effects than Yervoy (which doesnt have a real target, so it can attack healthy cells as well).

My boyfriend Randy is on the Merk-3475 trial at UCLA, he has his fourth infusion on monday, so far pretty much no side effects other than a slight cough every once in a while, and some minor joint pain.  All of his tumors under his skin we can feel, about 5 or 6 are all 'significantly' smaller  according to the dr. last time we saw him.  He had a tumor under his jaw very noticably protruding out from his jaw area, which is now almost not visible, and his jaw line looks normal.  Also he has a tumor on his pectoral area that was the size of a softball, i believe it was like 15cm (not sure on the exact size) it is now a lottt smaller, and still shrinking.  We have yet to have the scans yet, but im hoping ALL the tumors are responding.  Time will tell.

 I hope my info was helpful, sorry to write so much.  If you have questions, i'd be glad to answer to the best of my ability.

My God, is there any other cancer that can come back after 32 years other than this horrible disease?

My God, is there any other cancer that can come back after 32 years other than this horrible disease?

My God, is there any other cancer that can come back after 32 years other than this horrible disease?

how can they tell if this is the same from 32 years ago as a recurrence, or if it's perhaps another primary or unknown new primary, etc..?

how can they tell if this is the same from 32 years ago as a recurrence, or if it's perhaps another primary or unknown new primary, etc..?

how can they tell if this is the same from 32 years ago as a recurrence, or if it's perhaps another primary or unknown new primary, etc..?

I assumed, because you live in LA (where there are a number of melanoma specialists), and you're being offered an anti-PD1 trial, that you're probably being seen at a melanoma center or by a melanoma specialist. As others are pointing out, seeing a melanoma specialist the step #1. My first oncologist was not a melanoma specialist and it took me 4 months to find my way to one. At that point I realized how important that step was.

To help us put your questions in context, you could fill out your profile here on MPIP. Especially the section where you can name your treatment center and/or oncologist. To do that, click on 'UPDATE INFO' button at the top right of the page, then click on the 'Profile' tab, then click the 'Edit' tab. A lot of us will look at the profile to see where somebody is being treated.

I assumed, because you live in LA (where there are a number of melanoma specialists), and you're being offered an anti-PD1 trial, that you're probably being seen at a melanoma center or by a melanoma specialist. As others are pointing out, seeing a melanoma specialist the step #1. My first oncologist was not a melanoma specialist and it took me 4 months to find my way to one. At that point I realized how important that step was.

To help us put your questions in context, you could fill out your profile here on MPIP. Especially the section where you can name your treatment center and/or oncologist. To do that, click on 'UPDATE INFO' button at the top right of the page, then click on the 'Profile' tab, then click the 'Edit' tab. A lot of us will look at the profile to see where somebody is being treated.

I assumed, because you live in LA (where there are a number of melanoma specialists), and you're being offered an anti-PD1 trial, that you're probably being seen at a melanoma center or by a melanoma specialist. As others are pointing out, seeing a melanoma specialist the step #1. My first oncologist was not a melanoma specialist and it took me 4 months to find my way to one. At that point I realized how important that step was.

To help us put your questions in context, you could fill out your profile here on MPIP. Especially the section where you can name your treatment center and/or oncologist. To do that, click on 'UPDATE INFO' button at the top right of the page, then click on the 'Profile' tab, then click the 'Edit' tab. A lot of us will look at the profile to see where somebody is being treated.

If you are healthy otherwise, and have a low tumor burden only in your lungs (small mets), look at the hard numbers.  Unfortunately I haven't seen anyone mention IL-2.  If it works and you are a complete responder, you have a great chance at a prolonged remission (decades).

Yes it is tough, but doable.  Unfortunately Diane had a freakish stroke after her first round.  It has become safer though and the recovery time is very quick.  It may even have a boosting effect on your immune system later on when using other immunotherapies.

With all of the new meds, for the most part you are porlonging the inevitable.  Once it has become resistant (usually in 4-6 months) you have selected for aggressive disease.

Until they get the combination / timing (off-on cycles) for these newer drugs, personally I would save them as my ace in the hole to buy time.  For most, that is all they do.  Once it fails you have nothing left and by then your tumor burden and degree of illness may take IL-2 off the table.

To date, IL-2 is the only drug that has a proven track record – albeit a small percentage.  A long-term follow-up of partial and complete responders to IL-2 showed if you were a complete responder and didn't have a recurrence within 30 months after treatment – NONE have had a recurance so far.  Patients have gone on over 20 years without a recurrence. No one will ever use the "C" word but the summary stated that these patients can essentially be "cured" of their melanoma.  That says a lot.

It is nice to have choices, and again I am sorry to hear about your news.  I am sure it was a shocker.  My recurrence from stage IIA to IV 8 years later was.

Just mentioning IL-2 as another option to at least look at with your doctors.  I don't recommend it lightly, but still recommend it if you are healthy and have a relatively low tumor burden.

Best of luck.

Kim – NED stage IV since July 2010 – thanks to IL-2.

If you are healthy otherwise, and have a low tumor burden only in your lungs (small mets), look at the hard numbers.  Unfortunately I haven't seen anyone mention IL-2.  If it works and you are a complete responder, you have a great chance at a prolonged remission (decades).

Yes it is tough, but doable.  Unfortunately Diane had a freakish stroke after her first round.  It has become safer though and the recovery time is very quick.  It may even have a boosting effect on your immune system later on when using other immunotherapies.

With all of the new meds, for the most part you are porlonging the inevitable.  Once it has become resistant (usually in 4-6 months) you have selected for aggressive disease.

Until they get the combination / timing (off-on cycles) for these newer drugs, personally I would save them as my ace in the hole to buy time.  For most, that is all they do.  Once it fails you have nothing left and by then your tumor burden and degree of illness may take IL-2 off the table.

To date, IL-2 is the only drug that has a proven track record – albeit a small percentage.  A long-term follow-up of partial and complete responders to IL-2 showed if you were a complete responder and didn't have a recurrence within 30 months after treatment – NONE have had a recurance so far.  Patients have gone on over 20 years without a recurrence. No one will ever use the "C" word but the summary stated that these patients can essentially be "cured" of their melanoma.  That says a lot.

It is nice to have choices, and again I am sorry to hear about your news.  I am sure it was a shocker.  My recurrence from stage IIA to IV 8 years later was.

Just mentioning IL-2 as another option to at least look at with your doctors.  I don't recommend it lightly, but still recommend it if you are healthy and have a relatively low tumor burden.

Best of luck.

Kim – NED stage IV since July 2010 – thanks to IL-2.

If you are healthy otherwise, and have a low tumor burden only in your lungs (small mets), look at the hard numbers.  Unfortunately I haven't seen anyone mention IL-2.  If it works and you are a complete responder, you have a great chance at a prolonged remission (decades).

Yes it is tough, but doable.  Unfortunately Diane had a freakish stroke after her first round.  It has become safer though and the recovery time is very quick.  It may even have a boosting effect on your immune system later on when using other immunotherapies.

With all of the new meds, for the most part you are porlonging the inevitable.  Once it has become resistant (usually in 4-6 months) you have selected for aggressive disease.

Until they get the combination / timing (off-on cycles) for these newer drugs, personally I would save them as my ace in the hole to buy time.  For most, that is all they do.  Once it fails you have nothing left and by then your tumor burden and degree of illness may take IL-2 off the table.

To date, IL-2 is the only drug that has a proven track record – albeit a small percentage.  A long-term follow-up of partial and complete responders to IL-2 showed if you were a complete responder and didn't have a recurrence within 30 months after treatment – NONE have had a recurance so far.  Patients have gone on over 20 years without a recurrence. No one will ever use the "C" word but the summary stated that these patients can essentially be "cured" of their melanoma.  That says a lot.

It is nice to have choices, and again I am sorry to hear about your news.  I am sure it was a shocker.  My recurrence from stage IIA to IV 8 years later was.

Just mentioning IL-2 as another option to at least look at with your doctors.  I don't recommend it lightly, but still recommend it if you are healthy and have a relatively low tumor burden.

Best of luck.

Kim – NED stage IV since July 2010 – thanks to IL-2.