Yervoy/Ipi

This topic has 96 replies, 8 voices, and was last updated 9 years, 4 months ago by vickiaa0529.

Post

- April 21, 2016 at 4:48 pm
- Quote
vickiaa0529
Participant
Hi

I have to apologize in advance for a probably duplicate post. I know someone had a similar question and now I can't find it.

I am recovering from a groin lymp node dissection. It is not fun. Too make a long story short I had a WLE in Feb 2015. In Feb of 2016 my inginual node swelled and tested positve for melanoma. My pet/CT scan was clean and the dissection was clean expect for the inginaul node.

My prevention care option was Yervoy/IPI for nine weeks once a week for 9 week and then follow up. Or I can wait until June for Nivo. Also I guess I could wait and just do the scans. I am not a wait for it to coma back person.

Right now I am in Seattle and going to SSCA I am thinking of going back to Houston to MD Anderson for a second opion but I am also open to other places in the US for a second opinion. I lived in Houston for 25Years.

So far I am not hearing a lot of good things about Yervoy/ipi the side effects are scary.I am listening to the Webinar right now with Dr Luke that someone posted.

Thanks for any adivce

Viewing 14 reply threads

Replies

- - April 21, 2016 at 5:32 pm
  - Quote
  jennunicorn
  Participant
  I have not heard of Ipi being once a week for nine weeks…. it is once every 3 weeks for 4 infusions.. and then some do the maintanence doses like I will be doing.
  
  I wouldn't be scared of the side effects if watch and wait is not something you are comfortable with. I don't blame you, since it this is a recurrence. Whoever your melanoma oncologist is, they will be very aware of the side effects and how to treat them quickly. Don't assume you will experience bad side effects, everyone is very different in how their bodies react to these drugs and some get bad side effects and others don't. Since you are in Seattle, San Francisco is not too far of a plane ride. I go to UCSF Melanoma Center and definitely recommend it to anyone on the West Coast as they are the #1 for this side of the country.
  
  Here is the link to their site: https://www.ucsfhealth.org/clinics/melanoma_center/
  
  Wishing you all the best,
- - April 21, 2016 at 5:32 pm
  - Quote
  jennunicorn
  Participant
  I have not heard of Ipi being once a week for nine weeks…. it is once every 3 weeks for 4 infusions.. and then some do the maintanence doses like I will be doing.
  
  I wouldn't be scared of the side effects if watch and wait is not something you are comfortable with. I don't blame you, since it this is a recurrence. Whoever your melanoma oncologist is, they will be very aware of the side effects and how to treat them quickly. Don't assume you will experience bad side effects, everyone is very different in how their bodies react to these drugs and some get bad side effects and others don't. Since you are in Seattle, San Francisco is not too far of a plane ride. I go to UCSF Melanoma Center and definitely recommend it to anyone on the West Coast as they are the #1 for this side of the country.
  
  Here is the link to their site: https://www.ucsfhealth.org/clinics/melanoma_center/
  
  Wishing you all the best,
  - April 21, 2016 at 6:09 pm
    
    Quote
    vickiaa0529
    Participant
    
    I am going to call. Thank You.
    
    I also guess worse case if I get too sick to stop the treatment
    
    You have a great outlook from reading your posts. How do you stay so positive?
  - April 21, 2016 at 6:09 pm
    
    Quote
    vickiaa0529
    Participant
    
    I am going to call. Thank You.
    
    I also guess worse case if I get too sick to stop the treatment
    
    You have a great outlook from reading your posts. How do you stay so positive?
  - April 21, 2016 at 6:28 pm
    
    Quote
    jennunicorn
    Participant
    
    Exaclty, worst case is you have to stop treatment and treat the side effects and that's that. Getting some of the treatment is better than none.
    
    As far as positivity, I don't really see another option. I have dealt with anxiety and depression in the past and overcame those hurdles. I have realized that life is too short to waste it worrying and being upset. It feels so much better to spend my energy on focusing on the positives, even if it's a rough day and the only positive thing I can think of is "I'm still alive", then I'll take it. I have bad days, but there are more good days than bad and I think that's a healthy balance.
    
    Hopefully once you've gotten settled in your treatment plan you'll feel a little more at ease as well. (I was a hot mess of anxiety between my diagnosis, surgery and starting treatment.. all the unknowns and what ifs… but once I got the ball rolling, I felt a lot better about everything).
  - April 21, 2016 at 6:28 pm
    
    Quote
    jennunicorn
    Participant
    
    Exaclty, worst case is you have to stop treatment and treat the side effects and that's that. Getting some of the treatment is better than none.
    
    As far as positivity, I don't really see another option. I have dealt with anxiety and depression in the past and overcame those hurdles. I have realized that life is too short to waste it worrying and being upset. It feels so much better to spend my energy on focusing on the positives, even if it's a rough day and the only positive thing I can think of is "I'm still alive", then I'll take it. I have bad days, but there are more good days than bad and I think that's a healthy balance.
    
    Hopefully once you've gotten settled in your treatment plan you'll feel a little more at ease as well. (I was a hot mess of anxiety between my diagnosis, surgery and starting treatment.. all the unknowns and what ifs… but once I got the ball rolling, I felt a lot better about everything).
  - April 21, 2016 at 8:34 pm
    
    Quote
    vickiaa0529
    Participant
    
    Do you know what the differnece in IIIa and IIIb is? They did not give me a stage letter just told me III.
    
    Thanks
  - April 21, 2016 at 8:34 pm
    
    Quote
    vickiaa0529
    Participant
    
    Do you know what the differnece in IIIa and IIIb is? They did not give me a stage letter just told me III.
    
    Thanks
  - April 21, 2016 at 9:00 pm
    
    Quote
    ed williams
    Participant
    
    Hi Vickiaa0529, it has to do with sentinal lymph nodes( how many that have positive mets) ,mitotic rate,ulceration and depth of mole for staging. If you go to Celeste's blog (bubbles) I am sure you will find links which show the exact process, how they stage melanoma patients. If you ask your Oncologist they will tell you the specific letter and what that means as far as treatments. Best wishes!!! Ed
  - April 21, 2016 at 9:00 pm
    
    Quote
    ed williams
    Participant
    
    Hi Vickiaa0529, it has to do with sentinal lymph nodes( how many that have positive mets) ,mitotic rate,ulceration and depth of mole for staging. If you go to Celeste's blog (bubbles) I am sure you will find links which show the exact process, how they stage melanoma patients. If you ask your Oncologist they will tell you the specific letter and what that means as far as treatments. Best wishes!!! Ed
  - April 22, 2016 at 12:05 am
    
    Quote
    vickiaa0529
    Participant
    
    Hi and Thanks
    
    I just spoke to the oncology nurse and she confirmed 3b for me. I think because the node was palable
  - April 22, 2016 at 12:05 am
    
    Quote
    vickiaa0529
    Participant
    
    Hi and Thanks
    
    I just spoke to the oncology nurse and she confirmed 3b for me. I think because the node was palable
  - April 22, 2016 at 12:05 am
    
    Quote
    vickiaa0529
    Participant
    
    Hi and Thanks
    
    I just spoke to the oncology nurse and she confirmed 3b for me. I think because the node was palable
  - April 21, 2016 at 9:00 pm
    
    Quote
    ed williams
    Participant
    
    Hi Vickiaa0529, it has to do with sentinal lymph nodes( how many that have positive mets) ,mitotic rate,ulceration and depth of mole for staging. If you go to Celeste's blog (bubbles) I am sure you will find links which show the exact process, how they stage melanoma patients. If you ask your Oncologist they will tell you the specific letter and what that means as far as treatments. Best wishes!!! Ed
  - April 21, 2016 at 10:11 pm
    
    Quote
    jennunicorn
    Participant
    
    I used this site when I was wondering what was invlolved in staging and the different letters and all that, it breaks it all down:
    
    http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-staging
  - April 21, 2016 at 10:11 pm
    
    Quote
    jennunicorn
    Participant
    
    I used this site when I was wondering what was invlolved in staging and the different letters and all that, it breaks it all down:
    
    http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-staging
  - April 21, 2016 at 10:11 pm
    
    Quote
    jennunicorn
    Participant
    
    I used this site when I was wondering what was invlolved in staging and the different letters and all that, it breaks it all down:
    
    http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-staging
  - April 22, 2016 at 12:13 am
    
    Quote
    vickiaa0529
    Participant
    
    That was a big help
    
    Thanks
    
    Also are you on the maintence dose?
    
    Do you know when you are declared NED?
    
    Thanks for answering all my questions
  - April 22, 2016 at 12:13 am
    
    Quote
    vickiaa0529
    Participant
    
    That was a big help
    
    Thanks
    
    Also are you on the maintence dose?
    
    Do you know when you are declared NED?
    
    Thanks for answering all my questions
  - April 22, 2016 at 12:13 am
    
    Quote
    vickiaa0529
    Participant
    
    That was a big help
    
    Thanks
    
    Also are you on the maintence dose?
    
    Do you know when you are declared NED?
    
    Thanks for answering all my questions
  - April 22, 2016 at 4:00 am
    
    Quote
    jennunicorn
    Participant
    
    My first maintanence dose is May 19, and then again once every 3 months until the end of the year.
    
    I am NED now since nothing can be seen on any scans, plus the last biopsy I had of a questionable lymph node was negative for melanoma. Next scan is in June, so hoping it stays all clear 🙂
  - April 22, 2016 at 4:00 am
    
    Quote
    jennunicorn
    Participant
    
    My first maintanence dose is May 19, and then again once every 3 months until the end of the year.
    
    I am NED now since nothing can be seen on any scans, plus the last biopsy I had of a questionable lymph node was negative for melanoma. Next scan is in June, so hoping it stays all clear 🙂
  - April 22, 2016 at 4:00 am
    
    Quote
    jennunicorn
    Participant
    
    My first maintanence dose is May 19, and then again once every 3 months until the end of the year.
    
    I am NED now since nothing can be seen on any scans, plus the last biopsy I had of a questionable lymph node was negative for melanoma. Next scan is in June, so hoping it stays all clear 🙂
  - April 22, 2016 at 3:49 pm
    
    Quote
    vickiaa0529
    Participant
    
    Me too. You are doing great.
  - April 22, 2016 at 3:49 pm
    
    Quote
    vickiaa0529
    Participant
    
    Me too. You are doing great.
  - April 22, 2016 at 3:49 pm
    
    Quote
    vickiaa0529
    Participant
    
    Me too. You are doing great.
  - April 21, 2016 at 8:34 pm
    
    Quote
    vickiaa0529
    Participant
    
    Do you know what the differnece in IIIa and IIIb is? They did not give me a stage letter just told me III.
    
    Thanks
  - April 21, 2016 at 6:28 pm
    
    Quote
    jennunicorn
    Participant
    
    Exaclty, worst case is you have to stop treatment and treat the side effects and that's that. Getting some of the treatment is better than none.
    
    As far as positivity, I don't really see another option. I have dealt with anxiety and depression in the past and overcame those hurdles. I have realized that life is too short to waste it worrying and being upset. It feels so much better to spend my energy on focusing on the positives, even if it's a rough day and the only positive thing I can think of is "I'm still alive", then I'll take it. I have bad days, but there are more good days than bad and I think that's a healthy balance.
    
    Hopefully once you've gotten settled in your treatment plan you'll feel a little more at ease as well. (I was a hot mess of anxiety between my diagnosis, surgery and starting treatment.. all the unknowns and what ifs… but once I got the ball rolling, I felt a lot better about everything).
  - April 21, 2016 at 6:09 pm
    
    Quote
    vickiaa0529
    Participant
    
    I am going to call. Thank You.
    
    I also guess worse case if I get too sick to stop the treatment
    
    You have a great outlook from reading your posts. How do you stay so positive?
- - April 21, 2016 at 5:32 pm
  - Quote
  jennunicorn
  Participant
  I have not heard of Ipi being once a week for nine weeks…. it is once every 3 weeks for 4 infusions.. and then some do the maintanence doses like I will be doing.
  
  I wouldn't be scared of the side effects if watch and wait is not something you are comfortable with. I don't blame you, since it this is a recurrence. Whoever your melanoma oncologist is, they will be very aware of the side effects and how to treat them quickly. Don't assume you will experience bad side effects, everyone is very different in how their bodies react to these drugs and some get bad side effects and others don't. Since you are in Seattle, San Francisco is not too far of a plane ride. I go to UCSF Melanoma Center and definitely recommend it to anyone on the West Coast as they are the #1 for this side of the country.
  
  Here is the link to their site: https://www.ucsfhealth.org/clinics/melanoma_center/
  
  Wishing you all the best,
- - April 21, 2016 at 8:01 pm
  - Quote
  keepthefaith11
  Participant
  My dad did have a reaction to the Yervoy. His liver enzymes when up by 10 times and he had to get on steroids. Definitely a level three or four reaction. Even so, we wouldn’t have done it any other way. He got two infusions which we feel is better than nothing. So worst case scenario, if you get side effects they can be dealt with and then you just discontinue treatment. But like Jen said it’s also likely you will not have to deal with any severe side effects.
  
  I have to echo your comment about Jen and her attitude in her posts. I completely agree! I actually read your post and feel much better because of your tone and positive attitude Jenn.
  I appreciate you explaining how you stay so positive, I have a lot to learn from you.
  
  Annie
- - April 21, 2016 at 8:01 pm
  - Quote
  keepthefaith11
  Participant
  My dad did have a reaction to the Yervoy. His liver enzymes when up by 10 times and he had to get on steroids. Definitely a level three or four reaction. Even so, we wouldn’t have done it any other way. He got two infusions which we feel is better than nothing. So worst case scenario, if you get side effects they can be dealt with and then you just discontinue treatment. But like Jen said it’s also likely you will not have to deal with any severe side effects.
  
  I have to echo your comment about Jen and her attitude in her posts. I completely agree! I actually read your post and feel much better because of your tone and positive attitude Jenn.
  I appreciate you explaining how you stay so positive, I have a lot to learn from you.
  
  Annie
  - April 21, 2016 at 8:36 pm
    
    Quote
    vickiaa0529
    Participant
    
    Thanks. When was his last treatment? Hope he is doing well. I don't like the wait and see approach although a lot of people do it.
  - April 21, 2016 at 8:36 pm
    
    Quote
    vickiaa0529
    Participant
    
    Thanks. When was his last treatment? Hope he is doing well. I don't like the wait and see approach although a lot of people do it.
  - April 21, 2016 at 8:36 pm
    
    Quote
    vickiaa0529
    Participant
    
    Thanks. When was his last treatment? Hope he is doing well. I don't like the wait and see approach although a lot of people do it.
  - April 21, 2016 at 10:09 pm
    
    Quote
    jennunicorn
    Participant
    
    Thank you Annie, that means a lot!
    
    Hope your dad is doing well 🙂
  - April 21, 2016 at 10:09 pm
    
    Quote
    jennunicorn
    Participant
    
    Thank you Annie, that means a lot!
    
    Hope your dad is doing well 🙂
  - April 21, 2016 at 10:09 pm
    
    Quote
    jennunicorn
    Participant
    
    Thank you Annie, that means a lot!
    
    Hope your dad is doing well 🙂
- - April 21, 2016 at 8:01 pm
  - Quote
  keepthefaith11
  Participant
  My dad did have a reaction to the Yervoy. His liver enzymes when up by 10 times and he had to get on steroids. Definitely a level three or four reaction. Even so, we wouldn’t have done it any other way. He got two infusions which we feel is better than nothing. So worst case scenario, if you get side effects they can be dealt with and then you just discontinue treatment. But like Jen said it’s also likely you will not have to deal with any severe side effects.
  
  I have to echo your comment about Jen and her attitude in her posts. I completely agree! I actually read your post and feel much better because of your tone and positive attitude Jenn.
  I appreciate you explaining how you stay so positive, I have a lot to learn from you.
  
  Annie
- - April 21, 2016 at 10:09 pm
  - Quote
  MoiraM
  Participant
  I wa diagnosed as 3c. I did not have surgery due to my phobia but was treated with Ipi.
  
  I have permanent damage to my anterior pituitary gland due to the Ipi. I had no serious side effects (just rash and diarrhoea) until my fourth infusing and then, bang, no anterior pituitary function.
  
  This means no signals going to various endocrine organs and tissues. Due to my age (56) we are only replacing thyroxine (no thyroid function) and cortosol (no adrenal cortex function). If I had been younger, I would have been catapulted in a premature menopause. If I had been male, I would be taking testosterone as well.
  
  So there can be side effects that are permanent and do affect the quality of life. Replacing the cortisol is tricky. It's a bit like I have developed Addison's disease.
  
  Ipi was definitely the correct decision for me but you need realise that the side effects can be serious, permanent and unpredictale. I accepted that before I started.
  
  You also have to realise that you will have no way of knowing if you are a responder, because you haven't got any melanoma tumours to monitor. So have a course of Ipi isn't going to get you out of 'watch and wait'.
  
  I was told the response rate was 15%.
- - April 21, 2016 at 10:09 pm
  - Quote
  MoiraM
  Participant
  I wa diagnosed as 3c. I did not have surgery due to my phobia but was treated with Ipi.
  
  I have permanent damage to my anterior pituitary gland due to the Ipi. I had no serious side effects (just rash and diarrhoea) until my fourth infusing and then, bang, no anterior pituitary function.
  
  This means no signals going to various endocrine organs and tissues. Due to my age (56) we are only replacing thyroxine (no thyroid function) and cortosol (no adrenal cortex function). If I had been younger, I would have been catapulted in a premature menopause. If I had been male, I would be taking testosterone as well.
  
  So there can be side effects that are permanent and do affect the quality of life. Replacing the cortisol is tricky. It's a bit like I have developed Addison's disease.
  
  Ipi was definitely the correct decision for me but you need realise that the side effects can be serious, permanent and unpredictale. I accepted that before I started.
  
  You also have to realise that you will have no way of knowing if you are a responder, because you haven't got any melanoma tumours to monitor. So have a course of Ipi isn't going to get you out of 'watch and wait'.
  
  I was told the response rate was 15%.
  - April 22, 2016 at 12:12 am
    
    Quote
    vickiaa0529
    Participant
    
    Hi and Thanks
    
    I was told the response rate was 10% but it was confusing of how they explained it. It sounded more like 1 out of 5 responded positively.
    
    Are you still on Ipi/Yervoy? Are you on the maintenance phase?
    
    I could also wait until June and try Nivo or go to MD Anderson and try the Ipi/Nivo combo. I am 54 and not wanting to go to stage 4 but I am not sure if this prevents it or not. I wish I could say it doesn't hurt but the side effects are rough.
    
    I am going to do one of the treatments just not sure which is the right one.
    
    Were you offered the groin lymph node dissection? Was your node pallable?
    
    Sorry for all the questions
    
    Vicki
  - April 22, 2016 at 12:12 am
    
    Quote
    vickiaa0529
    Participant
    
    Hi and Thanks
    
    I was told the response rate was 10% but it was confusing of how they explained it. It sounded more like 1 out of 5 responded positively.
    
    Are you still on Ipi/Yervoy? Are you on the maintenance phase?
    
    I could also wait until June and try Nivo or go to MD Anderson and try the Ipi/Nivo combo. I am 54 and not wanting to go to stage 4 but I am not sure if this prevents it or not. I wish I could say it doesn't hurt but the side effects are rough.
    
    I am going to do one of the treatments just not sure which is the right one.
    
    Were you offered the groin lymph node dissection? Was your node pallable?
    
    Sorry for all the questions
    
    Vicki
  - April 22, 2016 at 12:12 am
    
    Quote
    vickiaa0529
    Participant
    
    Hi and Thanks
    
    I was told the response rate was 10% but it was confusing of how they explained it. It sounded more like 1 out of 5 responded positively.
    
    Are you still on Ipi/Yervoy? Are you on the maintenance phase?
    
    I could also wait until June and try Nivo or go to MD Anderson and try the Ipi/Nivo combo. I am 54 and not wanting to go to stage 4 but I am not sure if this prevents it or not. I wish I could say it doesn't hurt but the side effects are rough.
    
    I am going to do one of the treatments just not sure which is the right one.
    
    Were you offered the groin lymph node dissection? Was your node pallable?
    
    Sorry for all the questions
    
    Vicki
  - April 22, 2016 at 5:36 pm
    
    Quote
    MoiraM
    Participant
    
    Yes, I was offered surgery but I was too phobic of dctors and hospitals to do it. In the UK the dose is 3mg/kg and there are no maintenance doses given.
    
    I think 20% respond to Ipi but in only half of those is the positive response maintained.To be honest, the figures change all the time because the treatment is relatively new.
    
    My tumours, which were in my armpit, shrank. I have had three scans so far: shringking, shrinking more, no sign of either tumour on a CT scan. I have my fourth scan on Monday. According to my oncologist, I have to get to three years of tumour free scans before we can know if I am a temporary responder or a more permanent responder.
    
    I ask again, how will you know it is working? As far as I know, the only way of telling that Ipi is working is if your tumours shrink. If your melanoma never comes back, it might be the Ipi. Or it might have never come back.
    
    As far as I know, having side effects is not at all linked to the Ipi working. Non-responders can have side effects too.
    
    The Ipi/Nivo combination has a higher response rate, 40%, but you rsk the side effects of both. However, again, how do you know that the immunotherapy is working?
    
    You have to think this through carefully and make a decision you personally are content with. You have to ask all your questions. You have to make sure you are going forward with your eyes open.
    
    Do you need to rush into the decision?
    
    To be honest there is no 'right' decision. There is a decision taken by you with input from your doctors and possibly your loved ones.
  - April 22, 2016 at 9:36 pm
    
    Quote
    vickiaa0529
    Participant
    
    I'm not sure if I would do the surgery all over again. I kept wondering if there wasn't something other than surgery. This was a major surgery and I don't want to do permanent dammage on top of Lymphedema but I also don't want Melanoma. I am looking at other options at MD Anderson and UCSF.
    
    I guess with me the only way to tell in my case is if the cancer doesn't come back.
    
    How long have you been off ipi?
  - April 22, 2016 at 11:12 pm
    
    Quote
    MoiraM
    Participant
    
    My Ipi started April 2015 – a year ago – and ended in June 2015, so I have been off it Ipi for nine months. I had four infusions, one every threee weeks.
    
    You had the surgery, which is the standard treatment that all melanoma teams recommend. You are NED at this time.
    
    From your replies you still are not sure what to do, which is why I say take your time and make sure you are making a decision which is the correct one for you.
  - April 22, 2016 at 11:12 pm
    
    Quote
    MoiraM
    Participant
    
    My Ipi started April 2015 – a year ago – and ended in June 2015, so I have been off it Ipi for nine months. I had four infusions, one every threee weeks.
    
    You had the surgery, which is the standard treatment that all melanoma teams recommend. You are NED at this time.
    
    From your replies you still are not sure what to do, which is why I say take your time and make sure you are making a decision which is the correct one for you.
  - April 22, 2016 at 11:12 pm
    
    Quote
    MoiraM
    Participant
    
    My Ipi started April 2015 – a year ago – and ended in June 2015, so I have been off it Ipi for nine months. I had four infusions, one every threee weeks.
    
    You had the surgery, which is the standard treatment that all melanoma teams recommend. You are NED at this time.
    
    From your replies you still are not sure what to do, which is why I say take your time and make sure you are making a decision which is the correct one for you.
  - April 22, 2016 at 9:36 pm
    
    Quote
    vickiaa0529
    Participant
    
    I'm not sure if I would do the surgery all over again. I kept wondering if there wasn't something other than surgery. This was a major surgery and I don't want to do permanent dammage on top of Lymphedema but I also don't want Melanoma. I am looking at other options at MD Anderson and UCSF.
    
    I guess with me the only way to tell in my case is if the cancer doesn't come back.
    
    How long have you been off ipi?
  - April 22, 2016 at 9:36 pm
    
    Quote
    vickiaa0529
    Participant
    
    I'm not sure if I would do the surgery all over again. I kept wondering if there wasn't something other than surgery. This was a major surgery and I don't want to do permanent dammage on top of Lymphedema but I also don't want Melanoma. I am looking at other options at MD Anderson and UCSF.
    
    I guess with me the only way to tell in my case is if the cancer doesn't come back.
    
    How long have you been off ipi?
  - April 22, 2016 at 5:36 pm
    
    Quote
    MoiraM
    Participant
    
    Yes, I was offered surgery but I was too phobic of dctors and hospitals to do it. In the UK the dose is 3mg/kg and there are no maintenance doses given.
    
    I think 20% respond to Ipi but in only half of those is the positive response maintained.To be honest, the figures change all the time because the treatment is relatively new.
    
    My tumours, which were in my armpit, shrank. I have had three scans so far: shringking, shrinking more, no sign of either tumour on a CT scan. I have my fourth scan on Monday. According to my oncologist, I have to get to three years of tumour free scans before we can know if I am a temporary responder or a more permanent responder.
    
    I ask again, how will you know it is working? As far as I know, the only way of telling that Ipi is working is if your tumours shrink. If your melanoma never comes back, it might be the Ipi. Or it might have never come back.
    
    As far as I know, having side effects is not at all linked to the Ipi working. Non-responders can have side effects too.
    
    The Ipi/Nivo combination has a higher response rate, 40%, but you rsk the side effects of both. However, again, how do you know that the immunotherapy is working?
    
    You have to think this through carefully and make a decision you personally are content with. You have to ask all your questions. You have to make sure you are going forward with your eyes open.
    
    Do you need to rush into the decision?
    
    To be honest there is no 'right' decision. There is a decision taken by you with input from your doctors and possibly your loved ones.
  - April 22, 2016 at 5:36 pm
    
    Quote
    MoiraM
    Participant
    
    Yes, I was offered surgery but I was too phobic of dctors and hospitals to do it. In the UK the dose is 3mg/kg and there are no maintenance doses given.
    
    I think 20% respond to Ipi but in only half of those is the positive response maintained.To be honest, the figures change all the time because the treatment is relatively new.
    
    My tumours, which were in my armpit, shrank. I have had three scans so far: shringking, shrinking more, no sign of either tumour on a CT scan. I have my fourth scan on Monday. According to my oncologist, I have to get to three years of tumour free scans before we can know if I am a temporary responder or a more permanent responder.
    
    I ask again, how will you know it is working? As far as I know, the only way of telling that Ipi is working is if your tumours shrink. If your melanoma never comes back, it might be the Ipi. Or it might have never come back.
    
    As far as I know, having side effects is not at all linked to the Ipi working. Non-responders can have side effects too.
    
    The Ipi/Nivo combination has a higher response rate, 40%, but you rsk the side effects of both. However, again, how do you know that the immunotherapy is working?
    
    You have to think this through carefully and make a decision you personally are content with. You have to ask all your questions. You have to make sure you are going forward with your eyes open.
    
    Do you need to rush into the decision?
    
    To be honest there is no 'right' decision. There is a decision taken by you with input from your doctors and possibly your loved ones.
- - April 21, 2016 at 10:09 pm
  - Quote
  MoiraM
  Participant
  I wa diagnosed as 3c. I did not have surgery due to my phobia but was treated with Ipi.
  
  I have permanent damage to my anterior pituitary gland due to the Ipi. I had no serious side effects (just rash and diarrhoea) until my fourth infusing and then, bang, no anterior pituitary function.
  
  This means no signals going to various endocrine organs and tissues. Due to my age (56) we are only replacing thyroxine (no thyroid function) and cortosol (no adrenal cortex function). If I had been younger, I would have been catapulted in a premature menopause. If I had been male, I would be taking testosterone as well.
  
  So there can be side effects that are permanent and do affect the quality of life. Replacing the cortisol is tricky. It's a bit like I have developed Addison's disease.
  
  Ipi was definitely the correct decision for me but you need realise that the side effects can be serious, permanent and unpredictale. I accepted that before I started.
  
  You also have to realise that you will have no way of knowing if you are a responder, because you haven't got any melanoma tumours to monitor. So have a course of Ipi isn't going to get you out of 'watch and wait'.
  
  I was told the response rate was 15%.
- - April 22, 2016 at 12:25 am
  - Quote
  Polymath
  Participant
  Hi Vicki,
  
  Lots of info here, but I think Jenn nailed it the first response. First, don't assume you will have adverse side-effects from ipi. Not everyone does, I didn't, and the expectation of side-effects could program your mind in a bad way. Cross the bridge when you get to it. Also I echo the advice about UCSF. I travel many more miles to be treated there. They have been fantastic. Bottom line is do what you can now, before you progress. There are several options that were not available just a few years ago. Take an aggressive approach and expect the best.
  
  Gary
- - April 22, 2016 at 12:25 am
  - Quote
  Polymath
  Participant
  Hi Vicki,
  
  Lots of info here, but I think Jenn nailed it the first response. First, don't assume you will have adverse side-effects from ipi. Not everyone does, I didn't, and the expectation of side-effects could program your mind in a bad way. Cross the bridge when you get to it. Also I echo the advice about UCSF. I travel many more miles to be treated there. They have been fantastic. Bottom line is do what you can now, before you progress. There are several options that were not available just a few years ago. Take an aggressive approach and expect the best.
  
  Gary
- - April 22, 2016 at 12:25 am
  - Quote
  Polymath
  Participant
  Hi Vicki,
  
  Lots of info here, but I think Jenn nailed it the first response. First, don't assume you will have adverse side-effects from ipi. Not everyone does, I didn't, and the expectation of side-effects could program your mind in a bad way. Cross the bridge when you get to it. Also I echo the advice about UCSF. I travel many more miles to be treated there. They have been fantastic. Bottom line is do what you can now, before you progress. There are several options that were not available just a few years ago. Take an aggressive approach and expect the best.
  
  Gary
  - April 22, 2016 at 2:07 am
    
    Quote
    vickiaa0529
    Participant
    
    Is there a place I can see what is offered at UCSF? As far as adjuvent therapies
    
    I tried to paste the ones from MD Anderson but my browser won't let me.
    
    Thanks
  - April 22, 2016 at 2:07 am
    
    Quote
    vickiaa0529
    Participant
    
    Is there a place I can see what is offered at UCSF? As far as adjuvent therapies
    
    I tried to paste the ones from MD Anderson but my browser won't let me.
    
    Thanks
  - April 22, 2016 at 2:07 am
    
    Quote
    vickiaa0529
    Participant
    
    Is there a place I can see what is offered at UCSF? As far as adjuvent therapies
    
    I tried to paste the ones from MD Anderson but my browser won't let me.
    
    Thanks
  - April 22, 2016 at 2:35 am
    
    Quote
    vickiaa0529
    Participant
    
    https://www.mdanderson.org/education-and-research/departments-programs-and-labs/departments-and-divisions/melanoma-medical-oncology/clinical-trials/index.html
    
    Here is the MD Anderson link for available treatment for Stage 3
    
    any thoughts?
  - April 22, 2016 at 2:35 am
    
    Quote
    vickiaa0529
    Participant
    
    https://www.mdanderson.org/education-and-research/departments-programs-and-labs/departments-and-divisions/melanoma-medical-oncology/clinical-trials/index.html
    
    Here is the MD Anderson link for available treatment for Stage 3
    
    any thoughts?
  - April 22, 2016 at 2:35 am
    
    Quote
    vickiaa0529
    Participant
    
    https://www.mdanderson.org/education-and-research/departments-programs-and-labs/departments-and-divisions/melanoma-medical-oncology/clinical-trials/index.html
    
    Here is the MD Anderson link for available treatment for Stage 3
    
    any thoughts?
  - April 22, 2016 at 4:03 am
    
    Quote
    jennunicorn
    Participant
    
    There are clinical trials going on, not sure which ones are for Stage 3 and what requirements there are, here is a link:
    
    http://cancer.ucsf.edu/clinical-trials/melanoma
    
    But, the only non clinical trial options are watch and wait or Yervoy (Ipi) for stage 3 currently.
  - April 22, 2016 at 4:03 am
    
    Quote
    jennunicorn
    Participant
    
    There are clinical trials going on, not sure which ones are for Stage 3 and what requirements there are, here is a link:
    
    http://cancer.ucsf.edu/clinical-trials/melanoma
    
    But, the only non clinical trial options are watch and wait or Yervoy (Ipi) for stage 3 currently.
  - April 22, 2016 at 4:03 am
    
    Quote
    jennunicorn
    Participant
    
    There are clinical trials going on, not sure which ones are for Stage 3 and what requirements there are, here is a link:
    
    http://cancer.ucsf.edu/clinical-trials/melanoma
    
    But, the only non clinical trial options are watch and wait or Yervoy (Ipi) for stage 3 currently.
  - April 22, 2016 at 3:48 pm
    
    Quote
    vickiaa0529
    Participant
    
    Thanks Jen
    
    I am gratefull for options. Have a great weekend
  - April 22, 2016 at 3:48 pm
    
    Quote
    vickiaa0529
    Participant
    
    Thanks Jen
    
    I am gratefull for options. Have a great weekend
  - April 22, 2016 at 3:48 pm
    
    Quote
    vickiaa0529
    Participant
    
    Thanks Jen
    
    I am gratefull for options. Have a great weekend
  - April 22, 2016 at 3:51 pm
    
    Quote
    vickiaa0529
    Participant
    
    UCSF has some great trials
    
    Definetly an option
  - April 22, 2016 at 3:51 pm
    
    Quote
    vickiaa0529
    Participant
    
    UCSF has some great trials
    
    Definetly an option
  - April 22, 2016 at 3:51 pm
    
    Quote
    vickiaa0529
    Participant
    
    UCSF has some great trials
    
    Definetly an option
- - April 22, 2016 at 4:27 am
  - Quote
  Coach337
  Participant
  Stage 3c melanoma.
  
  Partial lymph node dissection in groin.
  
  Within a week of my first Yervoy infusion, I developed colitis which beat me down for about a month. In the four weeks since then, I've been on large amounts of prednisone to counter the assault on my digestive tract. It was effective in managing the colitis, but has created a whole new set of problems (insomnia, weight gain, cramping, fatigue, headaches, blurred vision).
  
  Frustrated, because despite the fact I'm supposedly "cancer free", I've spent the last 3 months delaing with symptoms (often completely debilitating) of the treatment that may or may not be treating the cancer I may or may not have.
- - April 22, 2016 at 4:27 am
  - Quote
  Coach337
  Participant
  Stage 3c melanoma.
  
  Partial lymph node dissection in groin.
  
  Within a week of my first Yervoy infusion, I developed colitis which beat me down for about a month. In the four weeks since then, I've been on large amounts of prednisone to counter the assault on my digestive tract. It was effective in managing the colitis, but has created a whole new set of problems (insomnia, weight gain, cramping, fatigue, headaches, blurred vision).
  
  Frustrated, because despite the fact I'm supposedly "cancer free", I've spent the last 3 months delaing with symptoms (often completely debilitating) of the treatment that may or may not be treating the cancer I may or may not have.
- - April 22, 2016 at 4:27 am
  - Quote
  Coach337
  Participant
  Stage 3c melanoma.
  
  Partial lymph node dissection in groin.
  
  Within a week of my first Yervoy infusion, I developed colitis which beat me down for about a month. In the four weeks since then, I've been on large amounts of prednisone to counter the assault on my digestive tract. It was effective in managing the colitis, but has created a whole new set of problems (insomnia, weight gain, cramping, fatigue, headaches, blurred vision).
  
  Frustrated, because despite the fact I'm supposedly "cancer free", I've spent the last 3 months delaing with symptoms (often completely debilitating) of the treatment that may or may not be treating the cancer I may or may not have.
  - April 22, 2016 at 3:46 pm
    
    Quote
    vickiaa0529
    Participant
    
    That is what I am afraid of. I may wait for Nivo in June It is supposed to have FDA approval. Recovering from the surgery is bad enough.
    
    It is going to sound funny but I am perfectly healthy now I don't want to screw anything up. I love my colon
    
    Watch and wait is pretty scary. Definelty going for a second opinion. MD Anderson or UCSF
    
    Hope you start to feel better soon
  - April 27, 2016 at 2:49 am
    
    Quote
    Mark_DC
    Participant
    
    Dear Vicki – why do you say that nivo will be available in June for stage III?
    
    this is useful to know if true since i am stage iii and have to decide between ipi or a clinicak trial with nivo vs. interferon. But if nivo will be available in june, then cant i just take nivo in june? Wouldnt that be relevant too for others with stage iii on this board who are taking ipi?
    
    hope it is true that nivo will become available
    
    thank you and good luck
  - April 27, 2016 at 2:49 am
    
    Quote
    Mark_DC
    Participant
    
    Dear Vicki – why do you say that nivo will be available in June for stage III?
    
    this is useful to know if true since i am stage iii and have to decide between ipi or a clinicak trial with nivo vs. interferon. But if nivo will be available in june, then cant i just take nivo in june? Wouldnt that be relevant too for others with stage iii on this board who are taking ipi?
    
    hope it is true that nivo will become available
    
    thank you and good luck
  - April 27, 2016 at 3:25 pm
    
    Quote
    ed williams
    Participant
    
    Hi Mark, Weber talks about trial 238 Ipi vs Nivo and having to wait for the results of it in an Onclive video from Jan 2016. Go about 4 min in to find Webers views on Adjuvant treatments. Ed https://www.youtube.com/watch?v=RIaGfNsG6w4
  - April 27, 2016 at 3:25 pm
    
    Quote
    ed williams
    Participant
    
    Hi Mark, Weber talks about trial 238 Ipi vs Nivo and having to wait for the results of it in an Onclive video from Jan 2016. Go about 4 min in to find Webers views on Adjuvant treatments. Ed https://www.youtube.com/watch?v=RIaGfNsG6w4
  - April 27, 2016 at 4:46 pm
    
    Quote
    vickiaa0529
    Participant
    
    Thanks for sharing that
  - April 27, 2016 at 4:46 pm
    
    Quote
    vickiaa0529
    Participant
    
    Thanks for sharing that
  - April 27, 2016 at 4:46 pm
    
    Quote
    vickiaa0529
    Participant
    
    Thanks for sharing that
  - April 27, 2016 at 3:25 pm
    
    Quote
    ed williams
    Participant
    
    Hi Mark, Weber talks about trial 238 Ipi vs Nivo and having to wait for the results of it in an Onclive video from Jan 2016. Go about 4 min in to find Webers views on Adjuvant treatments. Ed https://www.youtube.com/watch?v=RIaGfNsG6w4
  - April 27, 2016 at 4:42 pm
    
    Quote
    vickiaa0529
    Participant
    
    Hi
    
    There is a big conference in June. The part that is confusing is that I was told it will be approved in June but needs FDA approval which may take longer. The only other option in Seattle is 10mg ipi. I am getting a second opinion at MD Anderson as soon as I am cleared to fly
  - April 27, 2016 at 4:42 pm
    
    Quote
    vickiaa0529
    Participant
    
    Hi
    
    There is a big conference in June. The part that is confusing is that I was told it will be approved in June but needs FDA approval which may take longer. The only other option in Seattle is 10mg ipi. I am getting a second opinion at MD Anderson as soon as I am cleared to fly
  - April 27, 2016 at 4:42 pm
    
    Quote
    vickiaa0529
    Participant
    
    Hi
    
    There is a big conference in June. The part that is confusing is that I was told it will be approved in June but needs FDA approval which may take longer. The only other option in Seattle is 10mg ipi. I am getting a second opinion at MD Anderson as soon as I am cleared to fly
  - April 27, 2016 at 2:49 am
    
    Quote
    Mark_DC
    Participant
    
    Dear Vicki – why do you say that nivo will be available in June for stage III?
    
    this is useful to know if true since i am stage iii and have to decide between ipi or a clinicak trial with nivo vs. interferon. But if nivo will be available in june, then cant i just take nivo in june? Wouldnt that be relevant too for others with stage iii on this board who are taking ipi?
    
    hope it is true that nivo will become available
    
    thank you and good luck
  - April 22, 2016 at 3:46 pm
    
    Quote
    vickiaa0529
    Participant
    
    That is what I am afraid of. I may wait for Nivo in June It is supposed to have FDA approval. Recovering from the surgery is bad enough.
    
    It is going to sound funny but I am perfectly healthy now I don't want to screw anything up. I love my colon
    
    Watch and wait is pretty scary. Definelty going for a second opinion. MD Anderson or UCSF
    
    Hope you start to feel better soon
  - April 22, 2016 at 3:46 pm
    
    Quote
    vickiaa0529
    Participant
    
    That is what I am afraid of. I may wait for Nivo in June It is supposed to have FDA approval. Recovering from the surgery is bad enough.
    
    It is going to sound funny but I am perfectly healthy now I don't want to screw anything up. I love my colon
    
    Watch and wait is pretty scary. Definelty going for a second opinion. MD Anderson or UCSF
    
    Hope you start to feel better soon
  - April 22, 2016 at 3:52 pm
    
    Quote
    vickiaa0529
    Participant
    
    Are you going to continue the treatments?
    
    What did your oncologist say?
  - April 22, 2016 at 9:23 pm
    
    Quote
    Coach337
    Participant
    
    Doctor recommended no more infusions.
  - April 22, 2016 at 9:23 pm
    
    Quote
    Coach337
    Participant
    
    Doctor recommended no more infusions.
  - April 22, 2016 at 9:23 pm
    
    Quote
    Coach337
    Participant
    
    Doctor recommended no more infusions.
  - April 22, 2016 at 3:52 pm
    
    Quote
    vickiaa0529
    Participant
    
    Are you going to continue the treatments?
    
    What did your oncologist say?
  - April 22, 2016 at 3:52 pm
    
    Quote
    vickiaa0529
    Participant
    
    Are you going to continue the treatments?
    
    What did your oncologist say?