Surgically Stage 4 NED and ???’s, need help

Hi Jewel – sorry to hear that you and your husband are going through this journey. Is your oncologist a melanoma specialist? If not, get one. If so, have you and your husband discussed this line of thinking with him/her? I think there's merit to what your husband is saying but obviously the specialist can evaluate his unique case and his wishes. That all being said, a quick rundown of my husband's journey: two years ago, he was diagnosed Stage IIIC after primary melanoma discovered 18 years before that, he had 31 lymph nodes removed from his right side (palpable lump was under his armpit), 13 were positive. After that, he enrolled in a vaccine trial. Seven months after that, melanoma came back as a spinal tumor. After that, he did Yervoy (for us – this wasn't as scary as we worried but everybody again is unique with side effects, tolerance, etc.). He was NED for 10 months and then needed a small bowel resection this past March. After that, he was technically NED again … oncologist suggested we watch and wait – her reasoning: if we try a BRAF drug, etc., we won't know if it's working or not since no active disease at this point. Plus, sometimes it takes Yervoy awhile to full ramp up the immue system. This afternoon, we are going to find out the results of his latest PET scan. Praying he's still all clear. I hope our story helps you … or helps guide you in making the best decision for you both. Take care.

Hi Jewel – sorry to hear that you and your husband are going through this journey. Is your oncologist a melanoma specialist? If not, get one. If so, have you and your husband discussed this line of thinking with him/her? I think there's merit to what your husband is saying but obviously the specialist can evaluate his unique case and his wishes. That all being said, a quick rundown of my husband's journey: two years ago, he was diagnosed Stage IIIC after primary melanoma discovered 18 years before that, he had 31 lymph nodes removed from his right side (palpable lump was under his armpit), 13 were positive. After that, he enrolled in a vaccine trial. Seven months after that, melanoma came back as a spinal tumor. After that, he did Yervoy (for us – this wasn't as scary as we worried but everybody again is unique with side effects, tolerance, etc.). He was NED for 10 months and then needed a small bowel resection this past March. After that, he was technically NED again … oncologist suggested we watch and wait – her reasoning: if we try a BRAF drug, etc., we won't know if it's working or not since no active disease at this point. Plus, sometimes it takes Yervoy awhile to full ramp up the immue system. This afternoon, we are going to find out the results of his latest PET scan. Praying he's still all clear. I hope our story helps you … or helps guide you in making the best decision for you both. Take care.

Hi Jewel – sorry to hear that you and your husband are going through this journey. Is your oncologist a melanoma specialist? If not, get one. If so, have you and your husband discussed this line of thinking with him/her? I think there's merit to what your husband is saying but obviously the specialist can evaluate his unique case and his wishes. That all being said, a quick rundown of my husband's journey: two years ago, he was diagnosed Stage IIIC after primary melanoma discovered 18 years before that, he had 31 lymph nodes removed from his right side (palpable lump was under his armpit), 13 were positive. After that, he enrolled in a vaccine trial. Seven months after that, melanoma came back as a spinal tumor. After that, he did Yervoy (for us – this wasn't as scary as we worried but everybody again is unique with side effects, tolerance, etc.). He was NED for 10 months and then needed a small bowel resection this past March. After that, he was technically NED again … oncologist suggested we watch and wait – her reasoning: if we try a BRAF drug, etc., we won't know if it's working or not since no active disease at this point. Plus, sometimes it takes Yervoy awhile to full ramp up the immue system. This afternoon, we are going to find out the results of his latest PET scan. Praying he's still all clear. I hope our story helps you … or helps guide you in making the best decision for you both. Take care.

Personally I wouldnt do anything but wait and see.

Why take drugs unecessarily?

Wait until you need them and in the meantime take action to improve your overall health ie diet , supplements , exercise so that if and when you need drugs you are in tip top shape to handle side effects.

Personally I wouldnt do anything but wait and see.

Why take drugs unecessarily?

Wait until you need them and in the meantime take action to improve your overall health ie diet , supplements , exercise so that if and when you need drugs you are in tip top shape to handle side effects.

Personally I wouldnt do anything but wait and see.

Why take drugs unecessarily?

Wait until you need them and in the meantime take action to improve your overall health ie diet , supplements , exercise so that if and when you need drugs you are in tip top shape to handle side effects.

Jewel, my thought would be, to keep an open mind to the doctor's opinion while deciding about systemic treatment. I know that every situation is different, as well as each person.  

My bias in favor of systemic treatment so far, is likely in part because I haven't had any bad reactions to any of the three I've had (IL-2, IPI and now anti-PD1). And also each has probably helped.

The first time melanoma was detected in me past stage 1, was in 2010, eight lung mets spread across both lungs. They told me surgery was not a good option, because if there were 8 mets in both lungs, there was probably more disease they couldn't see. They advised me to get a systemic treatment instead, so I started right in on IL-2. That completely resolved all of the lung mets after just 2 cycles (I got 4 cycles altogether). 

However a few cells must have hopped a ride over to my brain. Just a month or so later, one brain met was surgically removed in 2010, 2 more brain mets surgically removed in 2011 plus radiation to several. 

After the 2011 surgery/radiation they offered me IPI. I took them up on it. I was on the one hand very happy to have something in my system that might do something. On the other hand, skeptical because I knew the stats for IPI's were not as strong as for the anti-PD1 trials. But after IPI, I was ultimately NED for 2 1/2 years, until this January. My doctors think it was probably the IPI that kept things under control for so long, mopping up or keeping at bay any micromets left around.

This January they found a paratracheal lymph node. They offered me my choice of either surgery, radiation, IPI, a clinical trial, or wait and watch. I chose a clinical trial (anti-PD1) over the rest. IPI would have been my second choice. 

At my last appointment with the trial doctor, he said in retrospect there was a second lymph node involved, not just 1. Apparently the second one was not easily seen until it started to dissapear over the first 4 months of anti-PD1. I'm hoping it's the treatment that made that one "resolve" on the scans. The first lymph is still there, it's size is still considered "stable".

For my own situation, whether or not the choices I've made were the best ones, I'll never know. But I like the chance of killing the melanoma cells in as many ways as possible, and the sooner the better.

Good luck to both of you. These can be very tough decisions to weigh.

Jewel, my thought would be, to keep an open mind to the doctor's opinion while deciding about systemic treatment. I know that every situation is different, as well as each person.  

My bias in favor of systemic treatment so far, is likely in part because I haven't had any bad reactions to any of the three I've had (IL-2, IPI and now anti-PD1). And also each has probably helped.

The first time melanoma was detected in me past stage 1, was in 2010, eight lung mets spread across both lungs. They told me surgery was not a good option, because if there were 8 mets in both lungs, there was probably more disease they couldn't see. They advised me to get a systemic treatment instead, so I started right in on IL-2. That completely resolved all of the lung mets after just 2 cycles (I got 4 cycles altogether). 

However a few cells must have hopped a ride over to my brain. Just a month or so later, one brain met was surgically removed in 2010, 2 more brain mets surgically removed in 2011 plus radiation to several. 

After the 2011 surgery/radiation they offered me IPI. I took them up on it. I was on the one hand very happy to have something in my system that might do something. On the other hand, skeptical because I knew the stats for IPI's were not as strong as for the anti-PD1 trials. But after IPI, I was ultimately NED for 2 1/2 years, until this January. My doctors think it was probably the IPI that kept things under control for so long, mopping up or keeping at bay any micromets left around.

This January they found a paratracheal lymph node. They offered me my choice of either surgery, radiation, IPI, a clinical trial, or wait and watch. I chose a clinical trial (anti-PD1) over the rest. IPI would have been my second choice. 

At my last appointment with the trial doctor, he said in retrospect there was a second lymph node involved, not just 1. Apparently the second one was not easily seen until it started to dissapear over the first 4 months of anti-PD1. I'm hoping it's the treatment that made that one "resolve" on the scans. The first lymph is still there, it's size is still considered "stable".

For my own situation, whether or not the choices I've made were the best ones, I'll never know. But I like the chance of killing the melanoma cells in as many ways as possible, and the sooner the better.

Good luck to both of you. These can be very tough decisions to weigh.

Jewel, my thought would be, to keep an open mind to the doctor's opinion while deciding about systemic treatment. I know that every situation is different, as well as each person.  

My bias in favor of systemic treatment so far, is likely in part because I haven't had any bad reactions to any of the three I've had (IL-2, IPI and now anti-PD1). And also each has probably helped.

The first time melanoma was detected in me past stage 1, was in 2010, eight lung mets spread across both lungs. They told me surgery was not a good option, because if there were 8 mets in both lungs, there was probably more disease they couldn't see. They advised me to get a systemic treatment instead, so I started right in on IL-2. That completely resolved all of the lung mets after just 2 cycles (I got 4 cycles altogether). 

However a few cells must have hopped a ride over to my brain. Just a month or so later, one brain met was surgically removed in 2010, 2 more brain mets surgically removed in 2011 plus radiation to several. 

After the 2011 surgery/radiation they offered me IPI. I took them up on it. I was on the one hand very happy to have something in my system that might do something. On the other hand, skeptical because I knew the stats for IPI's were not as strong as for the anti-PD1 trials. But after IPI, I was ultimately NED for 2 1/2 years, until this January. My doctors think it was probably the IPI that kept things under control for so long, mopping up or keeping at bay any micromets left around.

This January they found a paratracheal lymph node. They offered me my choice of either surgery, radiation, IPI, a clinical trial, or wait and watch. I chose a clinical trial (anti-PD1) over the rest. IPI would have been my second choice. 

At my last appointment with the trial doctor, he said in retrospect there was a second lymph node involved, not just 1. Apparently the second one was not easily seen until it started to dissapear over the first 4 months of anti-PD1. I'm hoping it's the treatment that made that one "resolve" on the scans. The first lymph is still there, it's size is still considered "stable".

For my own situation, whether or not the choices I've made were the best ones, I'll never know. But I like the chance of killing the melanoma cells in as many ways as possible, and the sooner the better.

Good luck to both of you. These can be very tough decisions to weigh.

Hey Jewel,

I can understand your husband's desire to avoid any more meds or treatments if he doesn't need them.  My local onc called keeping NED via surgery only "cherry-picking" and that is one way to go.  My first primary was in 2003, had that removed, and because of a positive node, a  complete lymphadenectomy as well.  WIth no additional treatment, I remained free of disease until 2007.  Another primary.  Had that removed and another lympadenectomy, even though there were no positive nodes. In 2010, mets showed up in brain and lung.  Had brain zapped.  Had upper lobe of lung removed.  In 6 months, lump on tonsil showed up and was mel as well.  Had that removed. 

It was becoming clear to me that " cherry picking" was turning into a not so perfect choice as things were cropping up much more frequently and in places that were less and less easy to remove.  Unfortunately, melanoma is often that way.  At this time yervoy was still in trials for folks with active disease only, not yet FDA approved.  Then, I found a trial for NED folks giving vaccines and Nivolumab (the BMS anti-PD1).  I live in Chattanooga, the trial is in Tampa, at Moffitt.  I was in that trial for 2 1/2 years…had my last dose 16 months ago….and remain NED. 

Who knows what the future holds…for me or your husband.  Obviously, he will have to decide what is best for him.  However, a long distance trial is doable…not easy….but doable and there are assistance programs to help with expenses if needed.  Many experts believe, Dr. Weber who runs this trial being one of them, that the best way to beat melanoma, whether you have active disease or not…is to hit is hard when the patient has the least possible disease burden.

If your husband is interested, a new arm, giving ipi and nivo with no vaccines, has been added to my trial, here's how I described it on my blog:

A new cohort #5 has been created.  It will accept 1,500 resected melanoma patients, from Stage III B/C to Stage IV.  Due to the high incidence of side effects with the prior combo….the dosages were flipped.  These patients will now be given Nivo at 3mg/kg and Ipi at 1 mg/kg.  Side effects remain a concern, especially for those at Stage IIIB as their risk for their melanoma is less than that of NED patients Staged IIIC/IV, and such side effects always have to be weighed against risk of disease, but should be decreased for everyone with this particular dosing plan.  There is no HLA typing requirement as no vaccines will be given.

Here is a link to the trial from the cdc….scroll down and you will see this arm…. 

http://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+adjuvant&rank=160

The ipi/nivo combo has the best numbers going for those with disease.  If I were in your husband's place I would really want to be in this trial.  However, what is right for me, may not be what he would choose.  Here is a link to a blog post in which I described the progress of the folks in my NED trial…nivo and vaccines only…

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html

Don't know if this helps…but I wish you both my best.  Celeste

Hey Jewel,

I can understand your husband's desire to avoid any more meds or treatments if he doesn't need them.  My local onc called keeping NED via surgery only "cherry-picking" and that is one way to go.  My first primary was in 2003, had that removed, and because of a positive node, a  complete lymphadenectomy as well.  WIth no additional treatment, I remained free of disease until 2007.  Another primary.  Had that removed and another lympadenectomy, even though there were no positive nodes. In 2010, mets showed up in brain and lung.  Had brain zapped.  Had upper lobe of lung removed.  In 6 months, lump on tonsil showed up and was mel as well.  Had that removed. 

It was becoming clear to me that " cherry picking" was turning into a not so perfect choice as things were cropping up much more frequently and in places that were less and less easy to remove.  Unfortunately, melanoma is often that way.  At this time yervoy was still in trials for folks with active disease only, not yet FDA approved.  Then, I found a trial for NED folks giving vaccines and Nivolumab (the BMS anti-PD1).  I live in Chattanooga, the trial is in Tampa, at Moffitt.  I was in that trial for 2 1/2 years…had my last dose 16 months ago….and remain NED. 

Who knows what the future holds…for me or your husband.  Obviously, he will have to decide what is best for him.  However, a long distance trial is doable…not easy….but doable and there are assistance programs to help with expenses if needed.  Many experts believe, Dr. Weber who runs this trial being one of them, that the best way to beat melanoma, whether you have active disease or not…is to hit is hard when the patient has the least possible disease burden.

If your husband is interested, a new arm, giving ipi and nivo with no vaccines, has been added to my trial, here's how I described it on my blog:

A new cohort #5 has been created.  It will accept 1,500 resected melanoma patients, from Stage III B/C to Stage IV.  Due to the high incidence of side effects with the prior combo….the dosages were flipped.  These patients will now be given Nivo at 3mg/kg and Ipi at 1 mg/kg.  Side effects remain a concern, especially for those at Stage IIIB as their risk for their melanoma is less than that of NED patients Staged IIIC/IV, and such side effects always have to be weighed against risk of disease, but should be decreased for everyone with this particular dosing plan.  There is no HLA typing requirement as no vaccines will be given.

Here is a link to the trial from the cdc….scroll down and you will see this arm…. 

http://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+adjuvant&rank=160

The ipi/nivo combo has the best numbers going for those with disease.  If I were in your husband's place I would really want to be in this trial.  However, what is right for me, may not be what he would choose.  Here is a link to a blog post in which I described the progress of the folks in my NED trial…nivo and vaccines only…

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html

Don't know if this helps…but I wish you both my best.  Celeste

Hey Jewel,

I can understand your husband's desire to avoid any more meds or treatments if he doesn't need them.  My local onc called keeping NED via surgery only "cherry-picking" and that is one way to go.  My first primary was in 2003, had that removed, and because of a positive node, a  complete lymphadenectomy as well.  WIth no additional treatment, I remained free of disease until 2007.  Another primary.  Had that removed and another lympadenectomy, even though there were no positive nodes. In 2010, mets showed up in brain and lung.  Had brain zapped.  Had upper lobe of lung removed.  In 6 months, lump on tonsil showed up and was mel as well.  Had that removed. 

It was becoming clear to me that " cherry picking" was turning into a not so perfect choice as things were cropping up much more frequently and in places that were less and less easy to remove.  Unfortunately, melanoma is often that way.  At this time yervoy was still in trials for folks with active disease only, not yet FDA approved.  Then, I found a trial for NED folks giving vaccines and Nivolumab (the BMS anti-PD1).  I live in Chattanooga, the trial is in Tampa, at Moffitt.  I was in that trial for 2 1/2 years…had my last dose 16 months ago….and remain NED. 

Who knows what the future holds…for me or your husband.  Obviously, he will have to decide what is best for him.  However, a long distance trial is doable…not easy….but doable and there are assistance programs to help with expenses if needed.  Many experts believe, Dr. Weber who runs this trial being one of them, that the best way to beat melanoma, whether you have active disease or not…is to hit is hard when the patient has the least possible disease burden.

If your husband is interested, a new arm, giving ipi and nivo with no vaccines, has been added to my trial, here's how I described it on my blog:

A new cohort #5 has been created.  It will accept 1,500 resected melanoma patients, from Stage III B/C to Stage IV.  Due to the high incidence of side effects with the prior combo….the dosages were flipped.  These patients will now be given Nivo at 3mg/kg and Ipi at 1 mg/kg.  Side effects remain a concern, especially for those at Stage IIIB as their risk for their melanoma is less than that of NED patients Staged IIIC/IV, and such side effects always have to be weighed against risk of disease, but should be decreased for everyone with this particular dosing plan.  There is no HLA typing requirement as no vaccines will be given.

Here is a link to the trial from the cdc….scroll down and you will see this arm…. 

http://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+adjuvant&rank=160

The ipi/nivo combo has the best numbers going for those with disease.  If I were in your husband's place I would really want to be in this trial.  However, what is right for me, may not be what he would choose.  Here is a link to a blog post in which I described the progress of the folks in my NED trial…nivo and vaccines only…

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html

Don't know if this helps…but I wish you both my best.  Celeste

Jewel,

I am stage 4 and NED following surgery in early 2014 and I feel the same way as your husband and have not pursued any systemic treatments after surgery. My general thought has been that if/when I need it, those treatments are available. Since I am currently NED, I am not interested in taking on the potential side effects of various treatments. I used to think about this as the "do nothing" approach, but in fact I am doing something… I am living my life with my wife and 3 young boys and am working full time. Believe me when I say I am doing something every day :).

Ultimately, it is a personal decision but I can clearly understand where your husband is coming from.

Kevin

Jewel,

I am stage 4 and NED following surgery in early 2014 and I feel the same way as your husband and have not pursued any systemic treatments after surgery. My general thought has been that if/when I need it, those treatments are available. Since I am currently NED, I am not interested in taking on the potential side effects of various treatments. I used to think about this as the "do nothing" approach, but in fact I am doing something… I am living my life with my wife and 3 young boys and am working full time. Believe me when I say I am doing something every day :).

Ultimately, it is a personal decision but I can clearly understand where your husband is coming from.

Kevin

Jewel,

I am stage 4 and NED following surgery in early 2014 and I feel the same way as your husband and have not pursued any systemic treatments after surgery. My general thought has been that if/when I need it, those treatments are available. Since I am currently NED, I am not interested in taking on the potential side effects of various treatments. I used to think about this as the "do nothing" approach, but in fact I am doing something… I am living my life with my wife and 3 young boys and am working full time. Believe me when I say I am doing something every day :).

Ultimately, it is a personal decision but I can clearly understand where your husband is coming from.

Kevin