MoiraM

As someone whose anterior pituitary gland was destroyed by ipi, I can't say I am surprised.

I really hope that they begin to get somewhere with tests to help predict how people will react to the immunotherapy drugs. Then they will be in a position to be appropriately hyper-vigilant for side effects.

Also I think it would be much better if they could predict if someone was a responder or not. I was told that my ipi treatment in the UK cost £80,000. Being generous with the response rate, only one-fifth of patients responded so that is £400,000 per 'success'. They could treat a lot more people, each of them in a much more appropriate way if they had such a test.

As someone whose anterior pituitary gland was destroyed by ipi, I can't say I am surprised.

I really hope that they begin to get somewhere with tests to help predict how people will react to the immunotherapy drugs. Then they will be in a position to be appropriately hyper-vigilant for side effects.

Also I think it would be much better if they could predict if someone was a responder or not. I was told that my ipi treatment in the UK cost £80,000. Being generous with the response rate, only one-fifth of patients responded so that is £400,000 per 'success'. They could treat a lot more people, each of them in a much more appropriate way if they had such a test.

As someone whose anterior pituitary gland was destroyed by ipi, I can't say I am surprised.

I really hope that they begin to get somewhere with tests to help predict how people will react to the immunotherapy drugs. Then they will be in a position to be appropriately hyper-vigilant for side effects.

Also I think it would be much better if they could predict if someone was a responder or not. I was told that my ipi treatment in the UK cost £80,000. Being generous with the response rate, only one-fifth of patients responded so that is £400,000 per 'success'. They could treat a lot more people, each of them in a much more appropriate way if they had such a test.

As you know, I am also in the UK. I had ipi April – June 2015.

I have been classified as a 'complete responder' and was moved from 3 monthly scans to 4 monthly scans in April 2016. I think the plan is 6 monthly scans from April 2017 but I confess that I will take an early move to that if it is offered in January 2017.

I've never had a mole/skin check so I cannot comment on that. My phobia means that I stay at one end of the room with my clothes on and the doctor stays at the other.

I think being stage 4 (or unresectable stage 3 in my case) means that a second primary is not their greatest concern. I guess that they would say that the whole point of being so vigilant about moles is to stop the melanoma cells getting to the rest of the body and we are past that stage.

I do think the ipi affected almost all my moles. Many are much paler. Of the ones I can see, only one tiny one on my leg has remained dark brown.

As you know, I am also in the UK. I had ipi April – June 2015.

I have been classified as a 'complete responder' and was moved from 3 monthly scans to 4 monthly scans in April 2016. I think the plan is 6 monthly scans from April 2017 but I confess that I will take an early move to that if it is offered in January 2017.

I've never had a mole/skin check so I cannot comment on that. My phobia means that I stay at one end of the room with my clothes on and the doctor stays at the other.

I think being stage 4 (or unresectable stage 3 in my case) means that a second primary is not their greatest concern. I guess that they would say that the whole point of being so vigilant about moles is to stop the melanoma cells getting to the rest of the body and we are past that stage.

I do think the ipi affected almost all my moles. Many are much paler. Of the ones I can see, only one tiny one on my leg has remained dark brown.

As you know, I am also in the UK. I had ipi April – June 2015.

I have been classified as a 'complete responder' and was moved from 3 monthly scans to 4 monthly scans in April 2016. I think the plan is 6 monthly scans from April 2017 but I confess that I will take an early move to that if it is offered in January 2017.

I've never had a mole/skin check so I cannot comment on that. My phobia means that I stay at one end of the room with my clothes on and the doctor stays at the other.

I think being stage 4 (or unresectable stage 3 in my case) means that a second primary is not their greatest concern. I guess that they would say that the whole point of being so vigilant about moles is to stop the melanoma cells getting to the rest of the body and we are past that stage.

I do think the ipi affected almost all my moles. Many are much paler. Of the ones I can see, only one tiny one on my leg has remained dark brown.

I am in the UK, so I am not the best person to give advice on treatment options in the US. However, I read your post last night and it was one of those that stuck in my brain, so I have decided to post a reply.

Hopefully others who are more familar with the complexities of the US system will point you in the best direction for your research.

However, one of your options will be what is often called 'watch and wait'. This is where you don't have any more treatment but you follow your doctor's advice about monitoring your health (for example examinations and scans) in case some melanoma cells slipped past your last lot of treatment (in your case, the surgery).

I think 'watch and wait' is a misleading description. It should be 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells'.

Also treatments for melanoma are evolving very quickly. In the UK, two 'new' treatments (both immunotherapies) have been approved for general use since I was diagnosed in February 2015. So while you 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells' an even more effective treatment might be approved for use in the USA.

My last treatment (15 months ago) was the immunotherapy ipilimumab (trade name Yervoy, often called 'ipi'). If ipi works (it does in about 15% of people) it fires up the person's immune system to eliminate the melanoma cells. I was one of the lucky ones. I had tumours, Ipi worked and my tumours shrank so much that they are undetectable. So now I am like you, NED (no evidence of disease) but with that thought in the back of my mind that a few melanoma cells may have escaped and be lurking. That thought very much comes to the front of my mind when I go for a scan!

So I am doing the 'living my life' option. I do not see it as the 'watch and wait' option.

I can tell from your post that you will make the 'right' decision about treatment. (The 'right' decision is the one that is best for you and your family and it varies a lot from person to person.) 

All the best to you and your family.

I am in the UK, so I am not the best person to give advice on treatment options in the US. However, I read your post last night and it was one of those that stuck in my brain, so I have decided to post a reply.

Hopefully others who are more familar with the complexities of the US system will point you in the best direction for your research.

However, one of your options will be what is often called 'watch and wait'. This is where you don't have any more treatment but you follow your doctor's advice about monitoring your health (for example examinations and scans) in case some melanoma cells slipped past your last lot of treatment (in your case, the surgery).

I think 'watch and wait' is a misleading description. It should be 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells'.

Also treatments for melanoma are evolving very quickly. In the UK, two 'new' treatments (both immunotherapies) have been approved for general use since I was diagnosed in February 2015. So while you 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells' an even more effective treatment might be approved for use in the USA.

My last treatment (15 months ago) was the immunotherapy ipilimumab (trade name Yervoy, often called 'ipi'). If ipi works (it does in about 15% of people) it fires up the person's immune system to eliminate the melanoma cells. I was one of the lucky ones. I had tumours, Ipi worked and my tumours shrank so much that they are undetectable. So now I am like you, NED (no evidence of disease) but with that thought in the back of my mind that a few melanoma cells may have escaped and be lurking. That thought very much comes to the front of my mind when I go for a scan!

So I am doing the 'living my life' option. I do not see it as the 'watch and wait' option.

I can tell from your post that you will make the 'right' decision about treatment. (The 'right' decision is the one that is best for you and your family and it varies a lot from person to person.) 

All the best to you and your family.

I am in the UK, so I am not the best person to give advice on treatment options in the US. However, I read your post last night and it was one of those that stuck in my brain, so I have decided to post a reply.

Hopefully others who are more familar with the complexities of the US system will point you in the best direction for your research.

However, one of your options will be what is often called 'watch and wait'. This is where you don't have any more treatment but you follow your doctor's advice about monitoring your health (for example examinations and scans) in case some melanoma cells slipped past your last lot of treatment (in your case, the surgery).

I think 'watch and wait' is a misleading description. It should be 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells'.

Also treatments for melanoma are evolving very quickly. In the UK, two 'new' treatments (both immunotherapies) have been approved for general use since I was diagnosed in February 2015. So while you 'live your life while getting yourself super-healthy so that your immune system is in the best possible state to seek out and eliminate melanoma cells' an even more effective treatment might be approved for use in the USA.

My last treatment (15 months ago) was the immunotherapy ipilimumab (trade name Yervoy, often called 'ipi'). If ipi works (it does in about 15% of people) it fires up the person's immune system to eliminate the melanoma cells. I was one of the lucky ones. I had tumours, Ipi worked and my tumours shrank so much that they are undetectable. So now I am like you, NED (no evidence of disease) but with that thought in the back of my mind that a few melanoma cells may have escaped and be lurking. That thought very much comes to the front of my mind when I go for a scan!

So I am doing the 'living my life' option. I do not see it as the 'watch and wait' option.

I can tell from your post that you will make the 'right' decision about treatment. (The 'right' decision is the one that is best for you and your family and it varies a lot from person to person.) 

All the best to you and your family.

The upside of being a complete responder to my ipi treatment  far outweighs losing all anterior pituitary gland function.

I would have the treatment again, even knowing the 'rare' downside I ended up with.

I always tell people to keep their doctors informed about all their symptoms.

I did that. It didn't make any difference. Please don't imply that all side effects that people who end up with the short straw weren't smart because that suggests that (a) they were stupid and (b) the side efffects are all avoidable.

The upside of being a complete responder to my ipi treatment  far outweighs losing all anterior pituitary gland function.

I would have the treatment again, even knowing the 'rare' downside I ended up with.

I always tell people to keep their doctors informed about all their symptoms.

I did that. It didn't make any difference. Please don't imply that all side effects that people who end up with the short straw weren't smart because that suggests that (a) they were stupid and (b) the side efffects are all avoidable.

The upside of being a complete responder to my ipi treatment  far outweighs losing all anterior pituitary gland function.

I would have the treatment again, even knowing the 'rare' downside I ended up with.

I always tell people to keep their doctors informed about all their symptoms.

I did that. It didn't make any difference. Please don't imply that all side effects that people who end up with the short straw weren't smart because that suggests that (a) they were stupid and (b) the side efffects are all avoidable.

Thank you!

Yes, the test needs to be much better than that.

For something like Ipi., which activates T cells, they need to be looking at the patient's immune system, not the tumour. 

I absolutely agree about Ipi being used in combination and finally superceded as a treatmnt or at least moved down the order. That is unless they work out how to protect patients from the more severe side effects.

As someone who refused to be admitted to hospital because of my phobia, Ipi was perfect. I  only had to commit to four half days in a treatment room in a clinic. And it worked! Now I 'watch and wait' to see if my 'complete response' is durable.

Thank you!

Yes, the test needs to be much better than that.

For something like Ipi., which activates T cells, they need to be looking at the patient's immune system, not the tumour. 

I absolutely agree about Ipi being used in combination and finally superceded as a treatmnt or at least moved down the order. That is unless they work out how to protect patients from the more severe side effects.

As someone who refused to be admitted to hospital because of my phobia, Ipi was perfect. I  only had to commit to four half days in a treatment room in a clinic. And it worked! Now I 'watch and wait' to see if my 'complete response' is durable.

Thank you!

Yes, the test needs to be much better than that.

For something like Ipi., which activates T cells, they need to be looking at the patient's immune system, not the tumour. 

I absolutely agree about Ipi being used in combination and finally superceded as a treatmnt or at least moved down the order. That is unless they work out how to protect patients from the more severe side effects.

As someone who refused to be admitted to hospital because of my phobia, Ipi was perfect. I  only had to commit to four half days in a treatment room in a clinic. And it worked! Now I 'watch and wait' to see if my 'complete response' is durable.