New to Site – new diagnosis and its really difficult

Michael-

Unfortunately with melanoma there isn't a whole lot of options for "adjuvant" treatment. You would have to look for trials; I know at one point there was a trial for Yervoy and surgically resected Stage III. If you're at MSK and seeing a melanoma specialist, my guess is you'd get same answers. I'm stage 4 just had my 3rd recurrence…luckily a local recurrence and went to see another melanoma specialist at an NCI facility today and was given option of interferon but advised against it. So after 3rd round of cancer I was told be diligent and "watch & wait". Do they scan schedule and be prepared if it rears it's ugly head again. It's very unnerving and I understand the psychological part as I struggle like many others with being in this position. I had 2 panic attacks just waiting for doctor today and I'm currently NED and at this point fortunate, yet it's tough to shake those emotions. I wish you and your wife the best.

Josh

Michael-

Unfortunately with melanoma there isn't a whole lot of options for "adjuvant" treatment. You would have to look for trials; I know at one point there was a trial for Yervoy and surgically resected Stage III. If you're at MSK and seeing a melanoma specialist, my guess is you'd get same answers. I'm stage 4 just had my 3rd recurrence…luckily a local recurrence and went to see another melanoma specialist at an NCI facility today and was given option of interferon but advised against it. So after 3rd round of cancer I was told be diligent and "watch & wait". Do they scan schedule and be prepared if it rears it's ugly head again. It's very unnerving and I understand the psychological part as I struggle like many others with being in this position. I had 2 panic attacks just waiting for doctor today and I'm currently NED and at this point fortunate, yet it's tough to shake those emotions. I wish you and your wife the best.

Josh

Michael-

Unfortunately with melanoma there isn't a whole lot of options for "adjuvant" treatment. You would have to look for trials; I know at one point there was a trial for Yervoy and surgically resected Stage III. If you're at MSK and seeing a melanoma specialist, my guess is you'd get same answers. I'm stage 4 just had my 3rd recurrence…luckily a local recurrence and went to see another melanoma specialist at an NCI facility today and was given option of interferon but advised against it. So after 3rd round of cancer I was told be diligent and "watch & wait". Do they scan schedule and be prepared if it rears it's ugly head again. It's very unnerving and I understand the psychological part as I struggle like many others with being in this position. I had 2 panic attacks just waiting for doctor today and I'm currently NED and at this point fortunate, yet it's tough to shake those emotions. I wish you and your wife the best.

Josh

Hi Michael,

My initial diagnosis was IIIa and I was offered Interferon or watch and wait. Neither sounded good to me. The best thing that happened to me is that I found this board early on. I spent time searching clinicaltrials.gov because I just felt like I had to do something. In the end, I heard about a clinical trial, on this board, that was clear across the country from where I live in Seattle, at Johns Hopkins in Baltimore. After a lot of paperwork and perseverance I was enrolled in a G-VAX (vaccine) trial there.

In hindsight the clinical trial did not cure my melanoma, however, I was under so much scrutiny, that the principal investigator of the trial noticed a blue spot in my scalp in the area of the initial occurrence which proved to be a recurrence. Hard to say how much longer it would have taken to be noticed was I not in the trial and harder yet to say what effect it would have had on my final outcome.

I have since advanced to Stage IV but I still participate in clinical trials. 1 because I am hoping to find a cure, and 2 because it is my little contribution to fighting this horrible disease.

If watch and wait is not acceptable I would recommend starting out on clinicaltrials.gov to first get an idea of what is available.

I hope the best for you and your wife – Paul.

Hi Michael,

My initial diagnosis was IIIa and I was offered Interferon or watch and wait. Neither sounded good to me. The best thing that happened to me is that I found this board early on. I spent time searching clinicaltrials.gov because I just felt like I had to do something. In the end, I heard about a clinical trial, on this board, that was clear across the country from where I live in Seattle, at Johns Hopkins in Baltimore. After a lot of paperwork and perseverance I was enrolled in a G-VAX (vaccine) trial there.

In hindsight the clinical trial did not cure my melanoma, however, I was under so much scrutiny, that the principal investigator of the trial noticed a blue spot in my scalp in the area of the initial occurrence which proved to be a recurrence. Hard to say how much longer it would have taken to be noticed was I not in the trial and harder yet to say what effect it would have had on my final outcome.

I have since advanced to Stage IV but I still participate in clinical trials. 1 because I am hoping to find a cure, and 2 because it is my little contribution to fighting this horrible disease.

If watch and wait is not acceptable I would recommend starting out on clinicaltrials.gov to first get an idea of what is available.

I hope the best for you and your wife – Paul.

Hi Michael,

My initial diagnosis was IIIa and I was offered Interferon or watch and wait. Neither sounded good to me. The best thing that happened to me is that I found this board early on. I spent time searching clinicaltrials.gov because I just felt like I had to do something. In the end, I heard about a clinical trial, on this board, that was clear across the country from where I live in Seattle, at Johns Hopkins in Baltimore. After a lot of paperwork and perseverance I was enrolled in a G-VAX (vaccine) trial there.

In hindsight the clinical trial did not cure my melanoma, however, I was under so much scrutiny, that the principal investigator of the trial noticed a blue spot in my scalp in the area of the initial occurrence which proved to be a recurrence. Hard to say how much longer it would have taken to be noticed was I not in the trial and harder yet to say what effect it would have had on my final outcome.

I have since advanced to Stage IV but I still participate in clinical trials. 1 because I am hoping to find a cure, and 2 because it is my little contribution to fighting this horrible disease.

If watch and wait is not acceptable I would recommend starting out on clinicaltrials.gov to first get an idea of what is available.

I hope the best for you and your wife – Paul.

Sorry you and your wife are dealing with melanoma, Michael.  Sadly, the two of you are going to have to become your own best researchers and advocates.  Luckily, you live in an area with many melanoma resources and already have a melanoma specialist.  That is a huge advantage.  However, it will still not obviate the need for you to take charge…unfortunately.  There is a wealth of information out there.  This forum through fellow melanoma patients as well as information you can find in the upper tabs will help a lot.  The advice you have been given is sound.  Use this link  https://clinicaltrials.gov/  and the search bubble to see what options may be out there.  Using melanoma and your wife's stage and/or NED (no evidence of disease) may be good starting places.  Here is a link to many other search engines that may be helpful:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/searching-for-melanoma-trials-down-low.html

Clinical trials are not for the faint of heart.  I started a Nivo trial in 2010..an NED one no less, and completed the drug portion 19 months ago.  I remain NED.  My story is on my blog.  Here is something I posted about one woman's experience:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/01/a-beautiful-lady-with-eloquent-though.html  In fact, my trial is still listed as recruiting and I was told it was the last time I was in Tampa, 5 months ago: 

https://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+and+nivolumab&rank=1 

The other important thing to remember…is….if you see a trial you are interested or want more information about….CALL!!!  The clinical trial coordinator contact info will be listed.

Here are some things you need to know/learn about if you want to think about current and future treatment options: 

1.  What is your wife's BRAF status?  (Here is a link explaining what that means…..http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html  If your wife's tumor was BRAF positive, learning about the BRAF inhibitors may be important.

2.  Learn about the immunotherapies:

anti-CTLA-4:  Ipilimumab (now called Yervoy)

anti-PD1 products:  Nivolumab (now called Opdivo) and Pembrolizumab (now called Keytruda)

There are many other treatment options….some good, some not so much.  But if you want to think about options…learning about these would take you a long way.

I wish you both my best.  Celeste

Sorry you and your wife are dealing with melanoma, Michael.  Sadly, the two of you are going to have to become your own best researchers and advocates.  Luckily, you live in an area with many melanoma resources and already have a melanoma specialist.  That is a huge advantage.  However, it will still not obviate the need for you to take charge…unfortunately.  There is a wealth of information out there.  This forum through fellow melanoma patients as well as information you can find in the upper tabs will help a lot.  The advice you have been given is sound.  Use this link  https://clinicaltrials.gov/  and the search bubble to see what options may be out there.  Using melanoma and your wife's stage and/or NED (no evidence of disease) may be good starting places.  Here is a link to many other search engines that may be helpful:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/searching-for-melanoma-trials-down-low.html

Clinical trials are not for the faint of heart.  I started a Nivo trial in 2010..an NED one no less, and completed the drug portion 19 months ago.  I remain NED.  My story is on my blog.  Here is something I posted about one woman's experience:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/01/a-beautiful-lady-with-eloquent-though.html  In fact, my trial is still listed as recruiting and I was told it was the last time I was in Tampa, 5 months ago: 

https://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+and+nivolumab&rank=1 

The other important thing to remember…is….if you see a trial you are interested or want more information about….CALL!!!  The clinical trial coordinator contact info will be listed.

Here are some things you need to know/learn about if you want to think about current and future treatment options: 

1.  What is your wife's BRAF status?  (Here is a link explaining what that means…..http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html  If your wife's tumor was BRAF positive, learning about the BRAF inhibitors may be important.

2.  Learn about the immunotherapies:

anti-CTLA-4:  Ipilimumab (now called Yervoy)

anti-PD1 products:  Nivolumab (now called Opdivo) and Pembrolizumab (now called Keytruda)

There are many other treatment options….some good, some not so much.  But if you want to think about options…learning about these would take you a long way.

I wish you both my best.  Celeste

Sorry you and your wife are dealing with melanoma, Michael.  Sadly, the two of you are going to have to become your own best researchers and advocates.  Luckily, you live in an area with many melanoma resources and already have a melanoma specialist.  That is a huge advantage.  However, it will still not obviate the need for you to take charge…unfortunately.  There is a wealth of information out there.  This forum through fellow melanoma patients as well as information you can find in the upper tabs will help a lot.  The advice you have been given is sound.  Use this link  https://clinicaltrials.gov/  and the search bubble to see what options may be out there.  Using melanoma and your wife's stage and/or NED (no evidence of disease) may be good starting places.  Here is a link to many other search engines that may be helpful:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/searching-for-melanoma-trials-down-low.html

Clinical trials are not for the faint of heart.  I started a Nivo trial in 2010..an NED one no less, and completed the drug portion 19 months ago.  I remain NED.  My story is on my blog.  Here is something I posted about one woman's experience:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/01/a-beautiful-lady-with-eloquent-though.html  In fact, my trial is still listed as recruiting and I was told it was the last time I was in Tampa, 5 months ago: 

https://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+and+nivolumab&rank=1 

The other important thing to remember…is….if you see a trial you are interested or want more information about….CALL!!!  The clinical trial coordinator contact info will be listed.

Here are some things you need to know/learn about if you want to think about current and future treatment options: 

1.  What is your wife's BRAF status?  (Here is a link explaining what that means…..http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html  If your wife's tumor was BRAF positive, learning about the BRAF inhibitors may be important.

2.  Learn about the immunotherapies:

anti-CTLA-4:  Ipilimumab (now called Yervoy)

anti-PD1 products:  Nivolumab (now called Opdivo) and Pembrolizumab (now called Keytruda)

There are many other treatment options….some good, some not so much.  But if you want to think about options…learning about these would take you a long way.

I wish you both my best.  Celeste

Hi Michael,

I am also being treated at MSKCC by Wolchock (oncologist) and Coit (surgeon).  I was diagnosed with stage IIIa disease.  After my lymph node dissection, I enrolled in a clinical trial at Memorial which is being run by Dr. Wolchock, Dr. young and Dr. Chung. It is a dendritic cell study and I believe they are still recruiting.  I participated in 2012 and was one of the first to complete.  Due to some funding issues it was delayed but has resumed.

I also refused interferon on the advise of those,physicians as well as another dermatologist I know personally.  some of the other responders to your post have given you great advise in how to research clinical trials.  Comb through those and if qualified and interested, get yourself signed up if possible.

lastly, in as much as I value my experience at MSKCC, there is always value in a second opinion if you're not completely satisfied (that's what brought me to MSKCC after starting my journey at Emory in Atlanta).  

Good luck Michael!

Hi Michael,

I am also being treated at MSKCC by Wolchock (oncologist) and Coit (surgeon).  I was diagnosed with stage IIIa disease.  After my lymph node dissection, I enrolled in a clinical trial at Memorial which is being run by Dr. Wolchock, Dr. young and Dr. Chung. It is a dendritic cell study and I believe they are still recruiting.  I participated in 2012 and was one of the first to complete.  Due to some funding issues it was delayed but has resumed.

I also refused interferon on the advise of those,physicians as well as another dermatologist I know personally.  some of the other responders to your post have given you great advise in how to research clinical trials.  Comb through those and if qualified and interested, get yourself signed up if possible.

lastly, in as much as I value my experience at MSKCC, there is always value in a second opinion if you're not completely satisfied (that's what brought me to MSKCC after starting my journey at Emory in Atlanta).  

Good luck Michael!

Hi Michael,

I am also being treated at MSKCC by Wolchock (oncologist) and Coit (surgeon).  I was diagnosed with stage IIIa disease.  After my lymph node dissection, I enrolled in a clinical trial at Memorial which is being run by Dr. Wolchock, Dr. young and Dr. Chung. It is a dendritic cell study and I believe they are still recruiting.  I participated in 2012 and was one of the first to complete.  Due to some funding issues it was delayed but has resumed.

I also refused interferon on the advise of those,physicians as well as another dermatologist I know personally.  some of the other responders to your post have given you great advise in how to research clinical trials.  Comb through those and if qualified and interested, get yourself signed up if possible.

lastly, in as much as I value my experience at MSKCC, there is always value in a second opinion if you're not completely satisfied (that's what brought me to MSKCC after starting my journey at Emory in Atlanta).  

Good luck Michael!

Hi,

Can definitely relate to you, loads of anxiety when my wife was first diagnosed last January – and then progressed to Stage IV in June.. Seems like you have made an important step which is finding a center of excellence. For the anxiety, for my wife yoga (nidra) and reiki have helped greatly in staying calm and positive.

Good luck,

Rick

Hi,

Can definitely relate to you, loads of anxiety when my wife was first diagnosed last January – and then progressed to Stage IV in June.. Seems like you have made an important step which is finding a center of excellence. For the anxiety, for my wife yoga (nidra) and reiki have helped greatly in staying calm and positive.

Good luck,

Rick

Hi,

Can definitely relate to you, loads of anxiety when my wife was first diagnosed last January – and then progressed to Stage IV in June.. Seems like you have made an important step which is finding a center of excellence. For the anxiety, for my wife yoga (nidra) and reiki have helped greatly in staying calm and positive.

Good luck,

Rick

Michael,

You may want to look into this clinical trial for your wife. https://clinicaltrials.gov/ct2/show/NCT02301611?term=Elios&rank=1 The good news… in the midst of all the bad right now… that if she doesn't qualify for the trial, she can still get the treatment through the company's offshore location, Perseus PCI. They've had great success treating melanoma, and thier main goal is to prevent recurrence. They use immunotherapy so the side effects are minimal. I hope that this helps… a good friend of mine had a terminal melanoma diagnosis and is now totally cancer-free. I hope that you will explore all of your options; best wishes to you and your wife through this challenging time.

Michael,

You may want to look into this clinical trial for your wife. https://clinicaltrials.gov/ct2/show/NCT02301611?term=Elios&rank=1 The good news… in the midst of all the bad right now… that if she doesn't qualify for the trial, she can still get the treatment through the company's offshore location, Perseus PCI. They've had great success treating melanoma, and thier main goal is to prevent recurrence. They use immunotherapy so the side effects are minimal. I hope that this helps… a good friend of mine had a terminal melanoma diagnosis and is now totally cancer-free. I hope that you will explore all of your options; best wishes to you and your wife through this challenging time.

Michael,

You may want to look into this clinical trial for your wife. https://clinicaltrials.gov/ct2/show/NCT02301611?term=Elios&rank=1 The good news… in the midst of all the bad right now… that if she doesn't qualify for the trial, she can still get the treatment through the company's offshore location, Perseus PCI. They've had great success treating melanoma, and thier main goal is to prevent recurrence. They use immunotherapy so the side effects are minimal. I hope that this helps… a good friend of mine had a terminal melanoma diagnosis and is now totally cancer-free. I hope that you will explore all of your options; best wishes to you and your wife through this challenging time.