Anybody in the S1404 study?

I do not think you are going to get anyting useful from 'first-hand' comparisons betwee ipi and pembro side effects. Not only do the side effects vary greatly from person to person, but the two treatments work differently, so just because someone reacts (in a good or a bad way) to one does not mean he or she will react to the other.

My stage 3C melanoma was unresectable for psychological reasons. I did ipi but I am in the UK, so it was 3mg/kg with only four doses. Big, big upside – my tumours shrank and, a year on, there is no sign of melanoma on my CT scans. Downside – ipi took out my anterior pituitary gland and the damage looks permanent.

My doctors and various studies have suggested that people like me, where the ipi activated T cells start chomping on 'normal' cells (in my case anterior pituitary cells), are people in whom those T cells are chomping on melanoma cells too. Of course if I had been using Ipi as adjuvant therapy after surgery, I wouldn't have known it had 'worked' because I wouldn't have had tumours to measure. I would be sitting here, trying to adapt to living with no anterior pituitary gland activity (and therefore with no thyroid or adrenal gland activity), with no certainty that the Ipi had done anything.

What's the alternative to the pembro in the clinical trial? I looked on the internet. Is it interferon? The accounts of side effects of interferon on here are, frankly, terrifying.

From what I can see it goes:

Interferon – very small chance of success – almost everyone who takes it has side effects (some describe it as having flu for the whole time) – some people describe permanent side effects like decreased intellectual capacity.

Ipi – I was told 15% of success – very variable side effects from mild diarrhoea and a rash to life-threatening colitis – some people like me end up with permanent damage to their endocrine systems.

Pembro – higher success than ipi (not sure of the number) – very variable side effects but, in general, they are thought to be less extreme the ones associated with ipi. My endocrinologist says that a few people (no idea of how many) still end up with damage to their endocrine systems.

I welcome corrections, clarifications or additions.

I do not think you are going to get anyting useful from 'first-hand' comparisons betwee ipi and pembro side effects. Not only do the side effects vary greatly from person to person, but the two treatments work differently, so just because someone reacts (in a good or a bad way) to one does not mean he or she will react to the other.

My stage 3C melanoma was unresectable for psychological reasons. I did ipi but I am in the UK, so it was 3mg/kg with only four doses. Big, big upside – my tumours shrank and, a year on, there is no sign of melanoma on my CT scans. Downside – ipi took out my anterior pituitary gland and the damage looks permanent.

My doctors and various studies have suggested that people like me, where the ipi activated T cells start chomping on 'normal' cells (in my case anterior pituitary cells), are people in whom those T cells are chomping on melanoma cells too. Of course if I had been using Ipi as adjuvant therapy after surgery, I wouldn't have known it had 'worked' because I wouldn't have had tumours to measure. I would be sitting here, trying to adapt to living with no anterior pituitary gland activity (and therefore with no thyroid or adrenal gland activity), with no certainty that the Ipi had done anything.

What's the alternative to the pembro in the clinical trial? I looked on the internet. Is it interferon? The accounts of side effects of interferon on here are, frankly, terrifying.

From what I can see it goes:

Interferon – very small chance of success – almost everyone who takes it has side effects (some describe it as having flu for the whole time) – some people describe permanent side effects like decreased intellectual capacity.

Ipi – I was told 15% of success – very variable side effects from mild diarrhoea and a rash to life-threatening colitis – some people like me end up with permanent damage to their endocrine systems.

Pembro – higher success than ipi (not sure of the number) – very variable side effects but, in general, they are thought to be less extreme the ones associated with ipi. My endocrinologist says that a few people (no idea of how many) still end up with damage to their endocrine systems.

I welcome corrections, clarifications or additions.

I do not think you are going to get anyting useful from 'first-hand' comparisons betwee ipi and pembro side effects. Not only do the side effects vary greatly from person to person, but the two treatments work differently, so just because someone reacts (in a good or a bad way) to one does not mean he or she will react to the other.

My stage 3C melanoma was unresectable for psychological reasons. I did ipi but I am in the UK, so it was 3mg/kg with only four doses. Big, big upside – my tumours shrank and, a year on, there is no sign of melanoma on my CT scans. Downside – ipi took out my anterior pituitary gland and the damage looks permanent.

My doctors and various studies have suggested that people like me, where the ipi activated T cells start chomping on 'normal' cells (in my case anterior pituitary cells), are people in whom those T cells are chomping on melanoma cells too. Of course if I had been using Ipi as adjuvant therapy after surgery, I wouldn't have known it had 'worked' because I wouldn't have had tumours to measure. I would be sitting here, trying to adapt to living with no anterior pituitary gland activity (and therefore with no thyroid or adrenal gland activity), with no certainty that the Ipi had done anything.

What's the alternative to the pembro in the clinical trial? I looked on the internet. Is it interferon? The accounts of side effects of interferon on here are, frankly, terrifying.

From what I can see it goes:

Interferon – very small chance of success – almost everyone who takes it has side effects (some describe it as having flu for the whole time) – some people describe permanent side effects like decreased intellectual capacity.

Ipi – I was told 15% of success – very variable side effects from mild diarrhoea and a rash to life-threatening colitis – some people like me end up with permanent damage to their endocrine systems.

Pembro – higher success than ipi (not sure of the number) – very variable side effects but, in general, they are thought to be less extreme the ones associated with ipi. My endocrinologist says that a few people (no idea of how many) still end up with damage to their endocrine systems.

I welcome corrections, clarifications or additions.

Hi Susan,

You are faced with a tough decision but I can give you this information:

Ipilimumab (ipi)/Yervoy has about a 15% response in Stage IV patients.

Anti-PD1 drugs – nivolumab/opdivo and pembrolizumab/keytruda have about a 40% response rate.

Response rates are still out on NED folks because sometimes without treatment of any sort, folks can go a long time before progression…so accumulation of data takes a while.

All of the drugs listed are considered immunotherapy and have pretty much the same side effects. These have been very clearly documented. Basically anything that can be effected by an increased immune response can present. Ipi, however, does have an increased risk of such side effects as compared to the anti-PD1 products. Here is a post I put together some time ago that may help:

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

Here is a post inwhich two melanoma experts discuss side effects:

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

Beyond the most typical and frequent adverse effects noted in these two posts…there are individuals who have dealt with many other unfortunate events as well…however, those are much less common.

Hope that helps. I wish you well. Celeste

Hi Susan,

You are faced with a tough decision but I can give you this information:

Ipilimumab (ipi)/Yervoy has about a 15% response in Stage IV patients.

Anti-PD1 drugs – nivolumab/opdivo and pembrolizumab/keytruda have about a 40% response rate.

Response rates are still out on NED folks because sometimes without treatment of any sort, folks can go a long time before progression…so accumulation of data takes a while.

All of the drugs listed are considered immunotherapy and have pretty much the same side effects. These have been very clearly documented. Basically anything that can be effected by an increased immune response can present. Ipi, however, does have an increased risk of such side effects as compared to the anti-PD1 products. Here is a post I put together some time ago that may help:

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

Here is a post inwhich two melanoma experts discuss side effects:

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

Beyond the most typical and frequent adverse effects noted in these two posts…there are individuals who have dealt with many other unfortunate events as well…however, those are much less common.

Hope that helps. I wish you well. Celeste

Hi Susan,

You are faced with a tough decision but I can give you this information:

Ipilimumab (ipi)/Yervoy has about a 15% response in Stage IV patients.

Anti-PD1 drugs – nivolumab/opdivo and pembrolizumab/keytruda have about a 40% response rate.

Response rates are still out on NED folks because sometimes without treatment of any sort, folks can go a long time before progression…so accumulation of data takes a while.

All of the drugs listed are considered immunotherapy and have pretty much the same side effects. These have been very clearly documented. Basically anything that can be effected by an increased immune response can present. Ipi, however, does have an increased risk of such side effects as compared to the anti-PD1 products. Here is a post I put together some time ago that may help:

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

Here is a post inwhich two melanoma experts discuss side effects:

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

Beyond the most typical and frequent adverse effects noted in these two posts…there are individuals who have dealt with many other unfortunate events as well…however, those are much less common.

Hope that helps. I wish you well. Celeste

 I am stage 3C, had a neck dissection in May and have just decided to do the S1404 clinical trial.  I still have to have my pre-treatment scans and the PD-L1 testing done.  To clarify the study for those who were questioning, it is comparing  either ipi OR interferon to pembro.

I have decided that if I don't get the pembro arm that I will do the Ipi as I have no desire to do interferon.

First though, I am getting a second opinion from MD Anderson because University of Michigan, where I first went, does not offer ipi in the adjuvant setting. However, my local cancer center does and that is where I needed to take the clinical trial as I had to live within 45 minutes of U of M to get it there – I live about 2 hours away.

So I am going to see what MD Anderson recommends before I actually get my first dose of drug.

Hoping the best for you!  Let's keep in touch.

Peggy

 I am stage 3C, had a neck dissection in May and have just decided to do the S1404 clinical trial.  I still have to have my pre-treatment scans and the PD-L1 testing done.  To clarify the study for those who were questioning, it is comparing  either ipi OR interferon to pembro.

I have decided that if I don't get the pembro arm that I will do the Ipi as I have no desire to do interferon.

First though, I am getting a second opinion from MD Anderson because University of Michigan, where I first went, does not offer ipi in the adjuvant setting. However, my local cancer center does and that is where I needed to take the clinical trial as I had to live within 45 minutes of U of M to get it there – I live about 2 hours away.

So I am going to see what MD Anderson recommends before I actually get my first dose of drug.

Hoping the best for you!  Let's keep in touch.

Peggy

 I am stage 3C, had a neck dissection in May and have just decided to do the S1404 clinical trial.  I still have to have my pre-treatment scans and the PD-L1 testing done.  To clarify the study for those who were questioning, it is comparing  either ipi OR interferon to pembro.

I have decided that if I don't get the pembro arm that I will do the Ipi as I have no desire to do interferon.

First though, I am getting a second opinion from MD Anderson because University of Michigan, where I first went, does not offer ipi in the adjuvant setting. However, my local cancer center does and that is where I needed to take the clinical trial as I had to live within 45 minutes of U of M to get it there – I live about 2 hours away.

So I am going to see what MD Anderson recommends before I actually get my first dose of drug.

Hoping the best for you!  Let's keep in touch.

Peggy