Opinions Please, Treatment for My Wife?

So sorry you and your wife are dealing with all of this. It is great that only 1 lymph node was positive. Watch and wait is still the top recommendation for stage 3 at the moment, even with Yervoy being FDA approved now.

My own story: I was diagnosed in November 2015, 3 out of 4 lymph nodes removed were positive. I did not get a full lymph node removal. I had the same options, watch and wait or Yervoy. For myself, because there were multiple lymph nodes involved and because I feel healthy enough to handle a drug with side effects I opted to do Yervoy. I have done all 4 of the main doses and will be doing the maintanence doses the rest of the year. I don't think that 5% mortality rate is correct, I think it is lower than that, not totally sure though. I knew that colitis was a big possibility but I also knew that my melanoma oncologist is used to treating the side effects of immunotherapy drugs and if anything were to come up she'd have me treated and well again. Thankfully I did not deal with any major side effects, it has been mostly fatigue and some mild other side effects, all very manageable. 

It is a very personal decision and there is no "right" answer since we are all very different people.

I think doing watch and wait is just as good of a decision… I know some of my family wanted me to go in that direction because they were scared of the side effects of Yervoy… but I just went with what my gut was telling me to do.

Wishing all the best for you and your family.

So sorry you and your wife are dealing with all of this. It is great that only 1 lymph node was positive. Watch and wait is still the top recommendation for stage 3 at the moment, even with Yervoy being FDA approved now.

My own story: I was diagnosed in November 2015, 3 out of 4 lymph nodes removed were positive. I did not get a full lymph node removal. I had the same options, watch and wait or Yervoy. For myself, because there were multiple lymph nodes involved and because I feel healthy enough to handle a drug with side effects I opted to do Yervoy. I have done all 4 of the main doses and will be doing the maintanence doses the rest of the year. I don't think that 5% mortality rate is correct, I think it is lower than that, not totally sure though. I knew that colitis was a big possibility but I also knew that my melanoma oncologist is used to treating the side effects of immunotherapy drugs and if anything were to come up she'd have me treated and well again. Thankfully I did not deal with any major side effects, it has been mostly fatigue and some mild other side effects, all very manageable. 

It is a very personal decision and there is no "right" answer since we are all very different people.

I think doing watch and wait is just as good of a decision… I know some of my family wanted me to go in that direction because they were scared of the side effects of Yervoy… but I just went with what my gut was telling me to do.

Wishing all the best for you and your family.

So sorry you and your wife are dealing with all of this. It is great that only 1 lymph node was positive. Watch and wait is still the top recommendation for stage 3 at the moment, even with Yervoy being FDA approved now.

My own story: I was diagnosed in November 2015, 3 out of 4 lymph nodes removed were positive. I did not get a full lymph node removal. I had the same options, watch and wait or Yervoy. For myself, because there were multiple lymph nodes involved and because I feel healthy enough to handle a drug with side effects I opted to do Yervoy. I have done all 4 of the main doses and will be doing the maintanence doses the rest of the year. I don't think that 5% mortality rate is correct, I think it is lower than that, not totally sure though. I knew that colitis was a big possibility but I also knew that my melanoma oncologist is used to treating the side effects of immunotherapy drugs and if anything were to come up she'd have me treated and well again. Thankfully I did not deal with any major side effects, it has been mostly fatigue and some mild other side effects, all very manageable. 

It is a very personal decision and there is no "right" answer since we are all very different people.

I think doing watch and wait is just as good of a decision… I know some of my family wanted me to go in that direction because they were scared of the side effects of Yervoy… but I just went with what my gut was telling me to do.

Wishing all the best for you and your family.

Hello Doug, Sorry you and your wife are going through this.  There are several Stage IIIers on here that are currently doing adjuvant Yervoy and I'm sure they will reply with their thoughts.  I would suggest you watch this video:

http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/#.Vxbba4-cFN4

If is a very well done video by Dr. Luke that talks about Stage III options.  He's not completely sold on Yervoy in the adjuvant setting and in the video briefly discusses that subject.  The video is a little technical but it will slowly sink in after you watch it a couple times.

I will comment that the 5% mortality rate on Yervoy seems very high.  There have been some death related side effects but my impression is that was early on.  There is a lot more experience administering the drug now so I suspect the mortality rate is more in the 1 – 2 % range now.

Brian

Hello Doug, Sorry you and your wife are going through this.  There are several Stage IIIers on here that are currently doing adjuvant Yervoy and I'm sure they will reply with their thoughts.  I would suggest you watch this video:

http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/#.Vxbba4-cFN4

If is a very well done video by Dr. Luke that talks about Stage III options.  He's not completely sold on Yervoy in the adjuvant setting and in the video briefly discusses that subject.  The video is a little technical but it will slowly sink in after you watch it a couple times.

I will comment that the 5% mortality rate on Yervoy seems very high.  There have been some death related side effects but my impression is that was early on.  There is a lot more experience administering the drug now so I suspect the mortality rate is more in the 1 – 2 % range now.

Brian

Hello Doug, Sorry you and your wife are going through this.  There are several Stage IIIers on here that are currently doing adjuvant Yervoy and I'm sure they will reply with their thoughts.  I would suggest you watch this video:

http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond/#.Vxbba4-cFN4

If is a very well done video by Dr. Luke that talks about Stage III options.  He's not completely sold on Yervoy in the adjuvant setting and in the video briefly discusses that subject.  The video is a little technical but it will slowly sink in after you watch it a couple times.

I will comment that the 5% mortality rate on Yervoy seems very high.  There have been some death related side effects but my impression is that was early on.  There is a lot more experience administering the drug now so I suspect the mortality rate is more in the 1 – 2 % range now.

Brian

…..very fast history:Stage 3, unknown primary 1987, surgery, laid silent for 9 years, recurrence in 1996, followed by multiple recurrences through 2008, then silent again until 2016.  Stage four since 1996.

Unknown primaries are thought to occur somewhere around 2% of the time.  There are  three general lines of thought about them: one of them is the primary spontaneously regressed ( went away) and another that the primary simply has never been found. and the third that there never was one.

In my case, the pathology came back as spindling cell melanoma.  In your case, I would want to know the EXACT pathology.  That would include the need to include, and not be limited to,  not only cell type but whether it was micro or macro metastisis, whether or not there were extensions, the methodology (staining), and slide preperation  of the pathology and a whole lot of other detailed information..  In short, in the case of Stage 3 presentation with unknown primary at least one (if not two) second opinions from a DERMAPATHOLOGIST are in order

With an unknown primary, an exhaustive diagnosis is required BEFORE there can be any intelligent and informed treatment discussion.

Also, not to be Donnie downer;  though surgery is an important and necessary part of melanoma treatment, I have learned to be more than skeptical when a surgeon says "we got it all".  Acheived clear margins, yes…………………….that we got it all, no.

I do not want to give you the wrong impression of being a pessimist or skeptic.   Having survived 29 years, I am far from that.  

What I have learned is to question everyone and everything ,gather all scientific  evidence available,, know doctors are not all omnipotent and most of all  YOUR CHANCES, YOUR CHOICES

So to sum it all up: get second and  third pathology opinions then come back here and tell us what they say.

It is also important to give your wife "room" to work through all of this  It is completely apparent how much you support her, but trust me,be sure to  give her the "room".

Cheers,

Charlie S

…..very fast history:Stage 3, unknown primary 1987, surgery, laid silent for 9 years, recurrence in 1996, followed by multiple recurrences through 2008, then silent again until 2016.  Stage four since 1996.

Unknown primaries are thought to occur somewhere around 2% of the time.  There are  three general lines of thought about them: one of them is the primary spontaneously regressed ( went away) and another that the primary simply has never been found. and the third that there never was one.

In my case, the pathology came back as spindling cell melanoma.  In your case, I would want to know the EXACT pathology.  That would include the need to include, and not be limited to,  not only cell type but whether it was micro or macro metastisis, whether or not there were extensions, the methodology (staining), and slide preperation  of the pathology and a whole lot of other detailed information..  In short, in the case of Stage 3 presentation with unknown primary at least one (if not two) second opinions from a DERMAPATHOLOGIST are in order

With an unknown primary, an exhaustive diagnosis is required BEFORE there can be any intelligent and informed treatment discussion.

Also, not to be Donnie downer;  though surgery is an important and necessary part of melanoma treatment, I have learned to be more than skeptical when a surgeon says "we got it all".  Acheived clear margins, yes…………………….that we got it all, no.

I do not want to give you the wrong impression of being a pessimist or skeptic.   Having survived 29 years, I am far from that.  

What I have learned is to question everyone and everything ,gather all scientific  evidence available,, know doctors are not all omnipotent and most of all  YOUR CHANCES, YOUR CHOICES

So to sum it all up: get second and  third pathology opinions then come back here and tell us what they say.

It is also important to give your wife "room" to work through all of this  It is completely apparent how much you support her, but trust me,be sure to  give her the "room".

Cheers,

Charlie S

…..very fast history:Stage 3, unknown primary 1987, surgery, laid silent for 9 years, recurrence in 1996, followed by multiple recurrences through 2008, then silent again until 2016.  Stage four since 1996.

Unknown primaries are thought to occur somewhere around 2% of the time.  There are  three general lines of thought about them: one of them is the primary spontaneously regressed ( went away) and another that the primary simply has never been found. and the third that there never was one.

In my case, the pathology came back as spindling cell melanoma.  In your case, I would want to know the EXACT pathology.  That would include the need to include, and not be limited to,  not only cell type but whether it was micro or macro metastisis, whether or not there were extensions, the methodology (staining), and slide preperation  of the pathology and a whole lot of other detailed information..  In short, in the case of Stage 3 presentation with unknown primary at least one (if not two) second opinions from a DERMAPATHOLOGIST are in order

With an unknown primary, an exhaustive diagnosis is required BEFORE there can be any intelligent and informed treatment discussion.

Also, not to be Donnie downer;  though surgery is an important and necessary part of melanoma treatment, I have learned to be more than skeptical when a surgeon says "we got it all".  Acheived clear margins, yes…………………….that we got it all, no.

I do not want to give you the wrong impression of being a pessimist or skeptic.   Having survived 29 years, I am far from that.  

What I have learned is to question everyone and everything ,gather all scientific  evidence available,, know doctors are not all omnipotent and most of all  YOUR CHANCES, YOUR CHOICES

So to sum it all up: get second and  third pathology opinions then come back here and tell us what they say.

It is also important to give your wife "room" to work through all of this  It is completely apparent how much you support her, but trust me,be sure to  give her the "room".

Cheers,

Charlie S

It is your wife's decision with your support.

I think I understand where your doctors are coming from.

Yervoy may not work (they told me only a 15% response rate). Without a solid tumour to measure you will not be able to tell whether it is working or not, so you are still going to have to do the 'watch and wait'.

I think they are over-estimating the death rate but the side effects short of this are still serious. My anterior pituitary was permanently knocked out by the Yervoy/Ipi. As a 56 year old female who had been told that I could be dead within 1-3 years, this is OK. However it would catapult a younger woman into the menopause. Also my pituitary gland no longer tells my thyroid and my adrenal cortex what to do. Managing the cortisol deficiency (the adrenal cortext produces cortisol) can be tough.

If you 'do nothing' you will not be doing nothing. Your wife should concentrate on getting her immune system as fit as possible. Melanoma is a fight between a person's immune system and melanoma cells.

If the melanoma comes back, which (a) it might not and (b) it could be many years, there may be much, much better treatment options available than Yervoy. The field is moving on very 

It is your wife's decision with your support.

I think I understand where your doctors are coming from.

Yervoy may not work (they told me only a 15% response rate). Without a solid tumour to measure you will not be able to tell whether it is working or not, so you are still going to have to do the 'watch and wait'.

I think they are over-estimating the death rate but the side effects short of this are still serious. My anterior pituitary was permanently knocked out by the Yervoy/Ipi. As a 56 year old female who had been told that I could be dead within 1-3 years, this is OK. However it would catapult a younger woman into the menopause. Also my pituitary gland no longer tells my thyroid and my adrenal cortex what to do. Managing the cortisol deficiency (the adrenal cortext produces cortisol) can be tough.

If you 'do nothing' you will not be doing nothing. Your wife should concentrate on getting her immune system as fit as possible. Melanoma is a fight between a person's immune system and melanoma cells.

If the melanoma comes back, which (a) it might not and (b) it could be many years, there may be much, much better treatment options available than Yervoy. The field is moving on very 

It is your wife's decision with your support.

I think I understand where your doctors are coming from.

Yervoy may not work (they told me only a 15% response rate). Without a solid tumour to measure you will not be able to tell whether it is working or not, so you are still going to have to do the 'watch and wait'.

I think they are over-estimating the death rate but the side effects short of this are still serious. My anterior pituitary was permanently knocked out by the Yervoy/Ipi. As a 56 year old female who had been told that I could be dead within 1-3 years, this is OK. However it would catapult a younger woman into the menopause. Also my pituitary gland no longer tells my thyroid and my adrenal cortex what to do. Managing the cortisol deficiency (the adrenal cortext produces cortisol) can be tough.

If you 'do nothing' you will not be doing nothing. Your wife should concentrate on getting her immune system as fit as possible. Melanoma is a fight between a person's immune system and melanoma cells.

If the melanoma comes back, which (a) it might not and (b) it could be many years, there may be much, much better treatment options available than Yervoy. The field is moving on very 

You have had some good, thoughtful feedback from others. I will just add one other thought. A third approach is to ask about being part of a clinical trial. A number of companies are interested in having approved treatments for people in your wife's situation. I have not looked recently for what trials are open, but your doctors should know.

Tim–MRF

You have had some good, thoughtful feedback from others. I will just add one other thought. A third approach is to ask about being part of a clinical trial. A number of companies are interested in having approved treatments for people in your wife's situation. I have not looked recently for what trials are open, but your doctors should know.

Tim–MRF

You have had some good, thoughtful feedback from others. I will just add one other thought. A third approach is to ask about being part of a clinical trial. A number of companies are interested in having approved treatments for people in your wife's situation. I have not looked recently for what trials are open, but your doctors should know.

Tim–MRF