Husband just diagnosed stage 4 ….Any advice or information?

sorry to hear that.

i do have some thoughts. been stage 4 since Nov 2013

1. Get a melanoma Specialist at a malanoma treatmenet center….you can look them up on this site.

2. get a plan of action after BRAF test and make sure you walk thtrough what you can start now…Yervoy, Keytruda, Tafinlar/Mekinist Combo….which one needs to come first and what preckudes you from then using the others just so you can try and have the next step though about so you don't screw yourself out of eing eligable for one type of treatment. 

(it is for this kind of reason I think you have to be at a facility that has a Melanoma Center. My doctor oly sees melanoma patients.)

I'm 45 and did start long term disability when I went to stage 4.

M

sorry to hear that.

i do have some thoughts. been stage 4 since Nov 2013

1. Get a melanoma Specialist at a malanoma treatmenet center….you can look them up on this site.

2. get a plan of action after BRAF test and make sure you walk thtrough what you can start now…Yervoy, Keytruda, Tafinlar/Mekinist Combo….which one needs to come first and what preckudes you from then using the others just so you can try and have the next step though about so you don't screw yourself out of eing eligable for one type of treatment. 

(it is for this kind of reason I think you have to be at a facility that has a Melanoma Center. My doctor oly sees melanoma patients.)

I'm 45 and did start long term disability when I went to stage 4.

M

sorry to hear that.

i do have some thoughts. been stage 4 since Nov 2013

1. Get a melanoma Specialist at a malanoma treatmenet center….you can look them up on this site.

2. get a plan of action after BRAF test and make sure you walk thtrough what you can start now…Yervoy, Keytruda, Tafinlar/Mekinist Combo….which one needs to come first and what preckudes you from then using the others just so you can try and have the next step though about so you don't screw yourself out of eing eligable for one type of treatment. 

(it is for this kind of reason I think you have to be at a facility that has a Melanoma Center. My doctor oly sees melanoma patients.)

I'm 45 and did start long term disability when I went to stage 4.

M

Where are you located? Definitely seeing a melanoma specialist is key. They're not only up to speed in latest treatments but can help guide and direct you through network of experts around the country for trials etc… If need be.

Josh

Where are you located? Definitely seeing a melanoma specialist is key. They're not only up to speed in latest treatments but can help guide and direct you through network of experts around the country for trials etc… If need be.

Josh

Where are you located? Definitely seeing a melanoma specialist is key. They're not only up to speed in latest treatments but can help guide and direct you through network of experts around the country for trials etc… If need be.

Josh

I've been to mayo. Couldn't ask for nicer caring doctors. That being said just like I said to another lady get yourself to one of the best places like md anderson or memorial Sloan Kettering. She chose md anderson which did the yervoy pd1 combo and is now back at home in North Dakota with almost all the cancer gone and continuing there on pd1. Granted not everyone can be that fortunate but it sure increased her odds. Mayo has a great reputation but I've found out the hard way for melanoma cancer we need better. Another good option for you is the university of Chicago. Dr Gajewski and dr Luke have a great melanoma program. Might be able to get the yervoy pd1 combo there. Also they are part of a group of facilities that have brystal Myers phase 1 trials. But they are very hard to get into. As far as 4 weeks to know braf status is insane. My local place in saint Louis was about a week. 

So some tough decisions all depending on how hard you folks want to fight this. Going to Houston or New York for awhile would be a huge commitment. No guarantees it would work. But that's my opinion.

Also for the spine he probably might need to start on xgeva to strengthen the bones. But I would talk to the folks I mentioned first.

Artie

I've been to mayo. Couldn't ask for nicer caring doctors. That being said just like I said to another lady get yourself to one of the best places like md anderson or memorial Sloan Kettering. She chose md anderson which did the yervoy pd1 combo and is now back at home in North Dakota with almost all the cancer gone and continuing there on pd1. Granted not everyone can be that fortunate but it sure increased her odds. Mayo has a great reputation but I've found out the hard way for melanoma cancer we need better. Another good option for you is the university of Chicago. Dr Gajewski and dr Luke have a great melanoma program. Might be able to get the yervoy pd1 combo there. Also they are part of a group of facilities that have brystal Myers phase 1 trials. But they are very hard to get into. As far as 4 weeks to know braf status is insane. My local place in saint Louis was about a week. 

So some tough decisions all depending on how hard you folks want to fight this. Going to Houston or New York for awhile would be a huge commitment. No guarantees it would work. But that's my opinion.

Also for the spine he probably might need to start on xgeva to strengthen the bones. But I would talk to the folks I mentioned first.

Artie

I've been to mayo. Couldn't ask for nicer caring doctors. That being said just like I said to another lady get yourself to one of the best places like md anderson or memorial Sloan Kettering. She chose md anderson which did the yervoy pd1 combo and is now back at home in North Dakota with almost all the cancer gone and continuing there on pd1. Granted not everyone can be that fortunate but it sure increased her odds. Mayo has a great reputation but I've found out the hard way for melanoma cancer we need better. Another good option for you is the university of Chicago. Dr Gajewski and dr Luke have a great melanoma program. Might be able to get the yervoy pd1 combo there. Also they are part of a group of facilities that have brystal Myers phase 1 trials. But they are very hard to get into. As far as 4 weeks to know braf status is insane. My local place in saint Louis was about a week. 

So some tough decisions all depending on how hard you folks want to fight this. Going to Houston or New York for awhile would be a huge commitment. No guarantees it would work. But that's my opinion.

Also for the spine he probably might need to start on xgeva to strengthen the bones. But I would talk to the folks I mentioned first.

Artie

Hi Renee, I would like to add a couple of points to what has already been said. First in regards to the brain met, very important to treat it quickly and with the right approach. I am not a doctor, but I have had brain mets so my advice to you is Cyberknife or any other stereotatic type treatment. Whole brain radiation was talked about at ASCO last week and the research is on Celeste's Blog " Chaotically Precise Life, Love, and Melanoma." She goes by Bubbles on the forum, if you go to any of her post you should find the link to her site. It will save you a lot of work and she has put up all the key ASCO highlights on current research into Melanoma that was presented in Chicago last week. The best results any where for stage 4 has been the double treatment of Immunotherapies from Bristol Myers Squib of Ipi and Nivolumab together. If you can find a trial which is offering these two drugs together, I would suggest you go for it! If not the second best results have come from either of the Pd-1 drugs . There are also some new approaches being offered like TVec which is a Herpes virus that has shown great early results. Several new combination with Immunotherapies are also in early trial stages.The best advice that was given to you so far is get to a hospital that has a specialist in Melanoma. Best wishes!!! Ed

Hi Renee, I would like to add a couple of points to what has already been said. First in regards to the brain met, very important to treat it quickly and with the right approach. I am not a doctor, but I have had brain mets so my advice to you is Cyberknife or any other stereotatic type treatment. Whole brain radiation was talked about at ASCO last week and the research is on Celeste's Blog " Chaotically Precise Life, Love, and Melanoma." She goes by Bubbles on the forum, if you go to any of her post you should find the link to her site. It will save you a lot of work and she has put up all the key ASCO highlights on current research into Melanoma that was presented in Chicago last week. The best results any where for stage 4 has been the double treatment of Immunotherapies from Bristol Myers Squib of Ipi and Nivolumab together. If you can find a trial which is offering these two drugs together, I would suggest you go for it! If not the second best results have come from either of the Pd-1 drugs . There are also some new approaches being offered like TVec which is a Herpes virus that has shown great early results. Several new combination with Immunotherapies are also in early trial stages.The best advice that was given to you so far is get to a hospital that has a specialist in Melanoma. Best wishes!!! Ed

Hi Renee, I would like to add a couple of points to what has already been said. First in regards to the brain met, very important to treat it quickly and with the right approach. I am not a doctor, but I have had brain mets so my advice to you is Cyberknife or any other stereotatic type treatment. Whole brain radiation was talked about at ASCO last week and the research is on Celeste's Blog " Chaotically Precise Life, Love, and Melanoma." She goes by Bubbles on the forum, if you go to any of her post you should find the link to her site. It will save you a lot of work and she has put up all the key ASCO highlights on current research into Melanoma that was presented in Chicago last week. The best results any where for stage 4 has been the double treatment of Immunotherapies from Bristol Myers Squib of Ipi and Nivolumab together. If you can find a trial which is offering these two drugs together, I would suggest you go for it! If not the second best results have come from either of the Pd-1 drugs . There are also some new approaches being offered like TVec which is a Herpes virus that has shown great early results. Several new combination with Immunotherapies are also in early trial stages.The best advice that was given to you so far is get to a hospital that has a specialist in Melanoma. Best wishes!!! Ed

Renee,

You don't mention anything about the brain mets and treatment for this.  This may be more important to address than the rest right now because it can affect his memory, executive function, personality… 

My personal advice to anyone who gets a diagnosis like this is to always seek a second opinion with a melanoma specialist and have that person look at any MRIs, PET or CT scans and not just the reports.  – My Mom was diagnosed with stage 4 and then later diagnosed with 3 brain mets. (Radiologist in Beverly Hills missed them and a melanoma specialist spotted 3 three weeks later!) When we found out about the brain mets we had a few options: BRAF pills and Yervoy OR Yervoy and Gamma Knife Radiation (not whole brain). We opted for Yervoy and Gamma Knife Radiation because we could have her take the pills if this didn't work.  

My Mom had Gamma Knife Radiation (for 8 of 9 brains mets, the BH doctor thought 1 was a blood vessel) and then started Yervoy 4 days later at USC in LA.  She's surprised everyone and while she ended up with 17 brain mets treated (this time at USC in LA) 4 months after the first treatment she's done fantastic.  The tumors responded to the combined treatments and continue to shrink or they have disappeared entirely and she's had no cognitive issues. – She was very very very lucky.

They are finding that with some people having combination treatment seems to work for a great % of people and it affects a greater change in the tumor burden.  If I were you I'd really look into getting a second opinion on the treatment plan find out other options and speak to a melanoma specialist.  A typical oncologist is not who your doctor should be seeing.

There are also a few trials that are now accepting patients with brain mets. You might really consider these if you don't opt for something else.  

Last thought on this is to make sure, if you do gamma knife radiation (aka SRS) you find the best. It makes a huge difference in the outcome.

Renee,

You don't mention anything about the brain mets and treatment for this.  This may be more important to address than the rest right now because it can affect his memory, executive function, personality… 

My personal advice to anyone who gets a diagnosis like this is to always seek a second opinion with a melanoma specialist and have that person look at any MRIs, PET or CT scans and not just the reports.  – My Mom was diagnosed with stage 4 and then later diagnosed with 3 brain mets. (Radiologist in Beverly Hills missed them and a melanoma specialist spotted 3 three weeks later!) When we found out about the brain mets we had a few options: BRAF pills and Yervoy OR Yervoy and Gamma Knife Radiation (not whole brain). We opted for Yervoy and Gamma Knife Radiation because we could have her take the pills if this didn't work.  

My Mom had Gamma Knife Radiation (for 8 of 9 brains mets, the BH doctor thought 1 was a blood vessel) and then started Yervoy 4 days later at USC in LA.  She's surprised everyone and while she ended up with 17 brain mets treated (this time at USC in LA) 4 months after the first treatment she's done fantastic.  The tumors responded to the combined treatments and continue to shrink or they have disappeared entirely and she's had no cognitive issues. – She was very very very lucky.

They are finding that with some people having combination treatment seems to work for a great % of people and it affects a greater change in the tumor burden.  If I were you I'd really look into getting a second opinion on the treatment plan find out other options and speak to a melanoma specialist.  A typical oncologist is not who your doctor should be seeing.

There are also a few trials that are now accepting patients with brain mets. You might really consider these if you don't opt for something else.  

Last thought on this is to make sure, if you do gamma knife radiation (aka SRS) you find the best. It makes a huge difference in the outcome.

Renee,

You don't mention anything about the brain mets and treatment for this.  This may be more important to address than the rest right now because it can affect his memory, executive function, personality… 

My personal advice to anyone who gets a diagnosis like this is to always seek a second opinion with a melanoma specialist and have that person look at any MRIs, PET or CT scans and not just the reports.  – My Mom was diagnosed with stage 4 and then later diagnosed with 3 brain mets. (Radiologist in Beverly Hills missed them and a melanoma specialist spotted 3 three weeks later!) When we found out about the brain mets we had a few options: BRAF pills and Yervoy OR Yervoy and Gamma Knife Radiation (not whole brain). We opted for Yervoy and Gamma Knife Radiation because we could have her take the pills if this didn't work.  

My Mom had Gamma Knife Radiation (for 8 of 9 brains mets, the BH doctor thought 1 was a blood vessel) and then started Yervoy 4 days later at USC in LA.  She's surprised everyone and while she ended up with 17 brain mets treated (this time at USC in LA) 4 months after the first treatment she's done fantastic.  The tumors responded to the combined treatments and continue to shrink or they have disappeared entirely and she's had no cognitive issues. – She was very very very lucky.

They are finding that with some people having combination treatment seems to work for a great % of people and it affects a greater change in the tumor burden.  If I were you I'd really look into getting a second opinion on the treatment plan find out other options and speak to a melanoma specialist.  A typical oncologist is not who your doctor should be seeing.

There are also a few trials that are now accepting patients with brain mets. You might really consider these if you don't opt for something else.  

Last thought on this is to make sure, if you do gamma knife radiation (aka SRS) you find the best. It makes a huge difference in the outcome.

Melanoma specialist melanoma specialist melanoma specialist.  And, oh yeah, you should see a melanoma specialist (ideally two or three).

Good luck

Maggie

Melanoma specialist melanoma specialist melanoma specialist.  And, oh yeah, you should see a melanoma specialist (ideally two or three).

Good luck

Maggie

Melanoma specialist melanoma specialist melanoma specialist.  And, oh yeah, you should see a melanoma specialist (ideally two or three).

Good luck

Maggie

Dear Renee,

You have been given very good advice.  Yes, in order to proceed with FDA approved drugs you have to take and fail the BRAF inhibitors (if your tumor is BRAF positive….you need to have that testing…and yes they are taken orally…and should be combined with a MEK inhibitor so as to have the best response and least side effects) as well as ipilimumab (Yervoy) before you can proceed to the anti-PD1 products (Nivolumab/Opdivo or Pembrolizumab/Keytruda).  However, Ed was correct.  You CAN NOT let a brain met from melanoma "sit".  There is absolutely no contraindication in the world from your husband having stereotactic radiation to his brain met while simultaneously starting any of the above meds.  In fact, there is documented benefits of radiation COMBINED with the above meds.  I am living proof.  I was first diagnosed with a melanoma primary in 2003.  Almost 5 years later I had another.  Three years later, in 2010, I too had a lung met and brain met.  I had SRS to the brain in April of 2010 and because I had a surgical option, lung surgery 3 days later.  After a 2 1/2 year trial of Nivolumab I remain NED (no evidence of disease) still.  Which brings me to trials.  There are many available.  The best numbers come from the ipi/nivo combo.  Many require that a brain met be treated before entry…some do not.  In fact, I just posted a couple of those.  AND…the drugs that work in the body….work in the brain.  They do not all cross the blood brain barrier, but the T cells they activate do.  I realize you have had a lot to think about and much to learn in a short period of time.  When I became Stage IV in 2010, there were NO FDA approved treatments for melanoma other than IL2 and interferon.  The world has thankfully, recently changed for the better.  But, this is why you need a melanoma specialist.  Regular oncologists may not have kept up with the most recent changes and trial options available for melanoma patients.  You may use the search bubble at the top left of my blog to find additional topic specific info.  This site and its wonderful peeps will be a great resource for you as well.   I wish you my best.  Celeste

Dear Renee,

You have been given very good advice.  Yes, in order to proceed with FDA approved drugs you have to take and fail the BRAF inhibitors (if your tumor is BRAF positive….you need to have that testing…and yes they are taken orally…and should be combined with a MEK inhibitor so as to have the best response and least side effects) as well as ipilimumab (Yervoy) before you can proceed to the anti-PD1 products (Nivolumab/Opdivo or Pembrolizumab/Keytruda).  However, Ed was correct.  You CAN NOT let a brain met from melanoma "sit".  There is absolutely no contraindication in the world from your husband having stereotactic radiation to his brain met while simultaneously starting any of the above meds.  In fact, there is documented benefits of radiation COMBINED with the above meds.  I am living proof.  I was first diagnosed with a melanoma primary in 2003.  Almost 5 years later I had another.  Three years later, in 2010, I too had a lung met and brain met.  I had SRS to the brain in April of 2010 and because I had a surgical option, lung surgery 3 days later.  After a 2 1/2 year trial of Nivolumab I remain NED (no evidence of disease) still.  Which brings me to trials.  There are many available.  The best numbers come from the ipi/nivo combo.  Many require that a brain met be treated before entry…some do not.  In fact, I just posted a couple of those.  AND…the drugs that work in the body….work in the brain.  They do not all cross the blood brain barrier, but the T cells they activate do.  I realize you have had a lot to think about and much to learn in a short period of time.  When I became Stage IV in 2010, there were NO FDA approved treatments for melanoma other than IL2 and interferon.  The world has thankfully, recently changed for the better.  But, this is why you need a melanoma specialist.  Regular oncologists may not have kept up with the most recent changes and trial options available for melanoma patients.  You may use the search bubble at the top left of my blog to find additional topic specific info.  This site and its wonderful peeps will be a great resource for you as well.   I wish you my best.  Celeste

Dear Renee,

You have been given very good advice.  Yes, in order to proceed with FDA approved drugs you have to take and fail the BRAF inhibitors (if your tumor is BRAF positive….you need to have that testing…and yes they are taken orally…and should be combined with a MEK inhibitor so as to have the best response and least side effects) as well as ipilimumab (Yervoy) before you can proceed to the anti-PD1 products (Nivolumab/Opdivo or Pembrolizumab/Keytruda).  However, Ed was correct.  You CAN NOT let a brain met from melanoma "sit".  There is absolutely no contraindication in the world from your husband having stereotactic radiation to his brain met while simultaneously starting any of the above meds.  In fact, there is documented benefits of radiation COMBINED with the above meds.  I am living proof.  I was first diagnosed with a melanoma primary in 2003.  Almost 5 years later I had another.  Three years later, in 2010, I too had a lung met and brain met.  I had SRS to the brain in April of 2010 and because I had a surgical option, lung surgery 3 days later.  After a 2 1/2 year trial of Nivolumab I remain NED (no evidence of disease) still.  Which brings me to trials.  There are many available.  The best numbers come from the ipi/nivo combo.  Many require that a brain met be treated before entry…some do not.  In fact, I just posted a couple of those.  AND…the drugs that work in the body….work in the brain.  They do not all cross the blood brain barrier, but the T cells they activate do.  I realize you have had a lot to think about and much to learn in a short period of time.  When I became Stage IV in 2010, there were NO FDA approved treatments for melanoma other than IL2 and interferon.  The world has thankfully, recently changed for the better.  But, this is why you need a melanoma specialist.  Regular oncologists may not have kept up with the most recent changes and trial options available for melanoma patients.  You may use the search bubble at the top left of my blog to find additional topic specific info.  This site and its wonderful peeps will be a great resource for you as well.   I wish you my best.  Celeste

Definitely get a second opinion and weigh each option carefully and make the best decision for your family! My husband, 48 yo, had a recurrence in December, stage iv, BRAF positive with 2 brain Mets and five nodular sites. After SRS, surgical removal of the nodules and four rounds of Yervoy the PET showed new activity in the stomach and nasal cavity plus two more nodules. We opted against Zelboraf because they were small and not interfering with other organs. Once he has the two endoscopic biopsies we will figure out what's next. With each new event we get a second opinion and a new set of eyes on the scans as one was missed in December by the radiologist reading it! My husband had limited side effects from the Yervoy and was able to work through it with a couple days off here and there. It's a good thing to start the LTD paperwork. It doesn't mean he had to fully stop working but it will ensure any time off for appointments or feeling ill will be accommodated. Best wishes to you and your family! 

Definitely get a second opinion and weigh each option carefully and make the best decision for your family! My husband, 48 yo, had a recurrence in December, stage iv, BRAF positive with 2 brain Mets and five nodular sites. After SRS, surgical removal of the nodules and four rounds of Yervoy the PET showed new activity in the stomach and nasal cavity plus two more nodules. We opted against Zelboraf because they were small and not interfering with other organs. Once he has the two endoscopic biopsies we will figure out what's next. With each new event we get a second opinion and a new set of eyes on the scans as one was missed in December by the radiologist reading it! My husband had limited side effects from the Yervoy and was able to work through it with a couple days off here and there. It's a good thing to start the LTD paperwork. It doesn't mean he had to fully stop working but it will ensure any time off for appointments or feeling ill will be accommodated. Best wishes to you and your family! 

Definitely get a second opinion and weigh each option carefully and make the best decision for your family! My husband, 48 yo, had a recurrence in December, stage iv, BRAF positive with 2 brain Mets and five nodular sites. After SRS, surgical removal of the nodules and four rounds of Yervoy the PET showed new activity in the stomach and nasal cavity plus two more nodules. We opted against Zelboraf because they were small and not interfering with other organs. Once he has the two endoscopic biopsies we will figure out what's next. With each new event we get a second opinion and a new set of eyes on the scans as one was missed in December by the radiologist reading it! My husband had limited side effects from the Yervoy and was able to work through it with a couple days off here and there. It's a good thing to start the LTD paperwork. It doesn't mean he had to fully stop working but it will ensure any time off for appointments or feeling ill will be accommodated. Best wishes to you and your family!