Just Told Stage 4: IL-2 or Yervoy???

Hi Andrea!

I was in the same situation with my father a month ago. We chose the Yervoy, it was a tough decision.

My dad is 71 years old and the IL-2 treatment sounded pretty harsh so he leaned towards the Yervoy.

He has a pretty strong immune system. He was diagnosed last year with Stage IV and had subcutaneous mets ALL over his body. Our neighbor gave us an article on asparagus and cancer which we thought was bizarre but tried it anyways. Within 3 weeks his tumors began shrinking. He went from a PET scan that looked like a Christmas Tree in 3/2011 to a completely clear scan in 6/2011. Well he continued on the asparagus but came down with a cold and shortly thereafter new nodules flared up. He has been on IPI for 6 days and had severe abdominal pain yesterday, seems to be feeling much better today.

It's a tough call. Sorry I am not much help. Go with your gut and stay positive!

I'll be praying for you.

Maggie

Hi Andrea!

I was in the same situation with my father a month ago. We chose the Yervoy, it was a tough decision.

My dad is 71 years old and the IL-2 treatment sounded pretty harsh so he leaned towards the Yervoy.

He has a pretty strong immune system. He was diagnosed last year with Stage IV and had subcutaneous mets ALL over his body. Our neighbor gave us an article on asparagus and cancer which we thought was bizarre but tried it anyways. Within 3 weeks his tumors began shrinking. He went from a PET scan that looked like a Christmas Tree in 3/2011 to a completely clear scan in 6/2011. Well he continued on the asparagus but came down with a cold and shortly thereafter new nodules flared up. He has been on IPI for 6 days and had severe abdominal pain yesterday, seems to be feeling much better today.

It's a tough call. Sorry I am not much help. Go with your gut and stay positive!

I'll be praying for you.

Maggie

Hi Andrea!

I was in the same situation with my father a month ago. We chose the Yervoy, it was a tough decision.

My dad is 71 years old and the IL-2 treatment sounded pretty harsh so he leaned towards the Yervoy.

He has a pretty strong immune system. He was diagnosed last year with Stage IV and had subcutaneous mets ALL over his body. Our neighbor gave us an article on asparagus and cancer which we thought was bizarre but tried it anyways. Within 3 weeks his tumors began shrinking. He went from a PET scan that looked like a Christmas Tree in 3/2011 to a completely clear scan in 6/2011. Well he continued on the asparagus but came down with a cold and shortly thereafter new nodules flared up. He has been on IPI for 6 days and had severe abdominal pain yesterday, seems to be feeling much better today.

It's a tough call. Sorry I am not much help. Go with your gut and stay positive!

I'll be praying for you.

Maggie

Hi Andrea!

I was in the same situation with my father a month ago. We chose the Yervoy, it was a tough decision.

My dad is 71 years old and the IL-2 treatment sounded pretty harsh so he leaned towards the Yervoy.

He has a pretty strong immune system. He was diagnosed last year with Stage IV and had subcutaneous mets ALL over his body. Our neighbor gave us an article on asparagus and cancer which we thought was bizarre but tried it anyways. Within 3 weeks his tumors began shrinking. He went from a PET scan that looked like a Christmas Tree in 3/2011 to a completely clear scan in 6/2011. Well he continued on the asparagus but came down with a cold and shortly thereafter new nodules flared up. He has been on IPI for 6 days and had severe abdominal pain yesterday, seems to be feeling much better today.

It's a tough call. Sorry I am not much help. Go with your gut and stay positive!

I'll be praying for you.

Maggie

Hi Andrea!

I was in the same situation with my father a month ago. We chose the Yervoy, it was a tough decision.

My dad is 71 years old and the IL-2 treatment sounded pretty harsh so he leaned towards the Yervoy.

He has a pretty strong immune system. He was diagnosed last year with Stage IV and had subcutaneous mets ALL over his body. Our neighbor gave us an article on asparagus and cancer which we thought was bizarre but tried it anyways. Within 3 weeks his tumors began shrinking. He went from a PET scan that looked like a Christmas Tree in 3/2011 to a completely clear scan in 6/2011. Well he continued on the asparagus but came down with a cold and shortly thereafter new nodules flared up. He has been on IPI for 6 days and had severe abdominal pain yesterday, seems to be feeling much better today.

It's a tough call. Sorry I am not much help. Go with your gut and stay positive!

I'll be praying for you.

Maggie

Hi Andrea!

I was in the same situation with my father a month ago. We chose the Yervoy, it was a tough decision.

My dad is 71 years old and the IL-2 treatment sounded pretty harsh so he leaned towards the Yervoy.

He has a pretty strong immune system. He was diagnosed last year with Stage IV and had subcutaneous mets ALL over his body. Our neighbor gave us an article on asparagus and cancer which we thought was bizarre but tried it anyways. Within 3 weeks his tumors began shrinking. He went from a PET scan that looked like a Christmas Tree in 3/2011 to a completely clear scan in 6/2011. Well he continued on the asparagus but came down with a cold and shortly thereafter new nodules flared up. He has been on IPI for 6 days and had severe abdominal pain yesterday, seems to be feeling much better today.

It's a tough call. Sorry I am not much help. Go with your gut and stay positive!

I'll be praying for you.

Maggie

Hi Andrea,

I'm sorry to hear you've been diagnosed with Stage 4. 

Since you have 2 nodes in your lungs, can they be surgically removed?  If that was possible, you could have a good chance at being NED and then start a trial using ipi in an adjuvent setting. If this isn't possible, then you have a decision to be made and ultimately it will have to be your decision. IPI needs time to work, so if your nodes are growing slowly, that might be an option especially considering the side effects are manageable. IL-2 is alot more toxic, but if it works, it can work for a long time as can ipi if you're a complete responder.   Is your Dr. leaning towards one of them?

I have lung mets too – 15 of them all under 1cm (except for 1). He recommended ipi (which I started last week) because they were small, slow growing and showed promise. He saw IL-2 as a Plan C if I had to go that route.

Best of luck with your decision. I'm sure other people will chime in with their experiences on both of these drugs.

Lisa

Hi Andrea,

I'm sorry to hear you've been diagnosed with Stage 4. 

Since you have 2 nodes in your lungs, can they be surgically removed?  If that was possible, you could have a good chance at being NED and then start a trial using ipi in an adjuvent setting. If this isn't possible, then you have a decision to be made and ultimately it will have to be your decision. IPI needs time to work, so if your nodes are growing slowly, that might be an option especially considering the side effects are manageable. IL-2 is alot more toxic, but if it works, it can work for a long time as can ipi if you're a complete responder.   Is your Dr. leaning towards one of them?

I have lung mets too – 15 of them all under 1cm (except for 1). He recommended ipi (which I started last week) because they were small, slow growing and showed promise. He saw IL-2 as a Plan C if I had to go that route.

Best of luck with your decision. I'm sure other people will chime in with their experiences on both of these drugs.

Lisa

Magggie,

I hope your father is doing better.

I am very interested in the asparagus article & cancer. Please post what your father did with the asparagus.

Thanks

Jamie

Magggie,

I hope your father is doing better.

I am very interested in the asparagus article & cancer. Please post what your father did with the asparagus.

Thanks

Jamie

Hi Andrea! I am so sorry that you have joined the stage IV club, but happy that you found this board.  You will get a great deal of support no matter what your situation.

Regarding the "IPI vs IL-2".  My 40 year old husband was in the same situation just one month ago.  He is scheduled to start IL-2 on the 29th.  His surgical and medical oncologist agreed with his decision.  He was healthy enough to handle the treatment (which his surgeon said made Interferon look like a walk in the park) and there are no long term side effects.  He was not too thrilled with IPI's side effects, and IL-2 does have a chance for complete remission – and proven to be more successful with mets to the lymph nodes, lungs, and subq's.  However, that being said, I would suggest if you were to make a decision, do not delay.  We took a week to travel down to Bethesda at NIH to see if he qualified for their TIL study (he did not qualify, the tumor extraction required would be too risky), and his cancer had grown quite fast – enough that he has to do radiation to shrink it prior to IL-2.  He also has what they called "bulky" disease, being his lymph nodes at that time were greater than 4cm.  In 5 weeks they grew to 9cm.

I'm sure others will have some input on IPI.  Just remember that whatever you decide, look forward,  and never back.

Best wishes to you and please keep us posted on whatever you decide,

Maria

Hi Andrea! I am so sorry that you have joined the stage IV club, but happy that you found this board.  You will get a great deal of support no matter what your situation.

Regarding the "IPI vs IL-2".  My 40 year old husband was in the same situation just one month ago.  He is scheduled to start IL-2 on the 29th.  His surgical and medical oncologist agreed with his decision.  He was healthy enough to handle the treatment (which his surgeon said made Interferon look like a walk in the park) and there are no long term side effects.  He was not too thrilled with IPI's side effects, and IL-2 does have a chance for complete remission – and proven to be more successful with mets to the lymph nodes, lungs, and subq's.  However, that being said, I would suggest if you were to make a decision, do not delay.  We took a week to travel down to Bethesda at NIH to see if he qualified for their TIL study (he did not qualify, the tumor extraction required would be too risky), and his cancer had grown quite fast – enough that he has to do radiation to shrink it prior to IL-2.  He also has what they called "bulky" disease, being his lymph nodes at that time were greater than 4cm.  In 5 weeks they grew to 9cm.

I'm sure others will have some input on IPI.  Just remember that whatever you decide, look forward,  and never back.

Best wishes to you and please keep us posted on whatever you decide,

Maria

Hi Andrea, I am a relatively new Stage IV diagnosee, so I can relate to your indecision.  I decided to go with Yervoy as opposed to IL-2 so that I would not have to go out of my city to a hospital that could deal with the side effects. That was a huge consideration for me since I have a teenager at home. Also, so many folks have reported success with Yervoy for lung and brain mets that I think it is a good option.

ALso, if there is a way you can be tested for the B-RAF mutation, and if you were positive, you will have another drug (ready for approval by FDA) in your arsenal.

Good luck in your decision. I learned from people on this board to make a decision and not to look back. I feel more confident about my decisions as a result of interacting with the great people on this board!

Sincerely, Cristy – Stage IV

Hi Andrea, I am a relatively new Stage IV diagnosee, so I can relate to your indecision.  I decided to go with Yervoy as opposed to IL-2 so that I would not have to go out of my city to a hospital that could deal with the side effects. That was a huge consideration for me since I have a teenager at home. Also, so many folks have reported success with Yervoy for lung and brain mets that I think it is a good option.

ALso, if there is a way you can be tested for the B-RAF mutation, and if you were positive, you will have another drug (ready for approval by FDA) in your arsenal.

Good luck in your decision. I learned from people on this board to make a decision and not to look back. I feel more confident about my decisions as a result of interacting with the great people on this board!

Sincerely, Cristy – Stage IV

Hi there Andrea.

Please take a deep breath.

You have been told by one person that you have two options:, since it your choice and your chance, it would seem that maybe, it would be good to get another idea before you decide,

Yervoy and IL-2 are both immunological approaches to melanoma.  While one is more popular than the other, please make your decision based upon more than one opinion and base your decision upon science that appeals to your logic.

Cheers,

Charlie S

Stage IV

Hi there Andrea.

Please take a deep breath.

You have been told by one person that you have two options:, since it your choice and your chance, it would seem that maybe, it would be good to get another idea before you decide,

Yervoy and IL-2 are both immunological approaches to melanoma.  While one is more popular than the other, please make your decision based upon more than one opinion and base your decision upon science that appeals to your logic.

Cheers,

Charlie S

Stage IV

Tough choice but I chose IL-2.  I was a complete responder and am NED one year after IL-2.  This is what I have concluded about IL-2 and IPI.  Sorry longish, but it is what I have been able to make sense out of it.  My oncs are on the same page as well.  I have a medical background as well.  (DVM)

Pros:

1.  If you are in the 6% that are complete responders, you have the best shot at prolonged remission.  There is a great article on this, and so far is the benchmark to beat.  People who have gone past 30 months w/o a recurrence probably won't ever have one.  If and when they do it tends to be a spot here or there which you can try to cherry pick.

2.  Of the complete responders to IL-2, there has yet to be a median survival curve.  (We are still setting it and tend to die from old age instead!!!)

3.  You will know within 6 weeks if you are responding.

4.  As sick as you get, IL-2 has been around and well trained staff do a great job treating the side effects and monitoring you.  Within a week or two most people are pretty much back to normal.  Just a little tired, itchy, and flakey.  My skin looked great afterwards!

5.  It is doable if you are healthy and strong.  Don't wait until this disease has eaten you up.  The best responders are like me with 1-2 lung mets or better yet, only SQ or in-transit disease.  (Over 6% in this category tend to go into complete remission).  The article I am thinking of quoted a percentage of responders and complete responders which was much higher!

6.  Didn't require life long treatment, effects were reversible and rather quickly.

7.  Didn't limit me too much for follow up clinical trials if needed, and in fact would open some doors ex. must have failed at least one prior systemic treatment to quailify….

Cons:

1.  IL-2 is said to be "the worst thing we do to cancer patients" as told to me by Dr. Glaspy – UCLA, Palalay, and Morita – my oncs here at Queen's in Honolulu.

2.  You are brought to the edge of death then jerked back to life.  10 days later you get to do it again.

3.  It scared the $hit out of me, but was the best thing going at the time (and I think still is)

IPI –

Pros:

1.  Immune based.

2.  Good responses compared to what has been available so far

Cons:

1.  May limit future clinical trials using drugs with a similar method of action ex. vermufinib sp? which seems to have a faster onset of action than IPI.

2.  How long will it continue to work?

3.  Length of treatment?  Indefinite?

4. Also has severe side effects ex. ruptured colon, severe autoimmune disease

Personally IPI and drugs like it are in my arsenal should I recur.  I am also BRAF+.  For me and my one lung met & very tiny chest wall met, I was an ideal candidate for IL-2.  If it comes back I am hoping by then that there are good trials using multiple combinations of drugs ex. BRAF inhibitors with immune stimulators & other inhibitors of MEK/ERK pathways.

The multiple approach of using immune stimulators, and several melanoma pathway inhibitors seems to make the best approach on beating this thing back.  While the trials seem to be rapidly moving in that direction, there still is much work to be done.  I want to buy as much time as possible so research as much of this figured out for if and when I need it.

If I did IPI right off the bat, I think in the long run I would be limiting my options for the future.  (IMHO).  It is also the newest greatest thing and everyone is still trying to figure out who will best benefit from it.  Try to stay with the facts, don't be distracted by the hype.

I do wonder about Jim B's point about "priming" the immune system by doing IPI first followed by IL-2 and if you have greater responses.  1st unleash the immune system using the IPI like drugs, then open up a can of woop ar$$ with IL-2 afterwards.  The immune cells do travel into the CNS and hopefully will prevent brain mets, IPI won't cross the BB barrier however.  Brain mets usually prevent you from getting IL-2.  It has been done but with stable and minimal disease.  IL-2 is scary enough without brain mets.  The mets up the ante by a whole magnitude of order…

Work the problem as Charlie S says.  Don't be afraid of IL-2, it still has it's place and with your disease location and amount, you are a good candidate for IL-2 as well.

Regardless, NEVER LOOK BACK once you make up your mind.  You need to buy into your treatment plan 100%, and have a plan B, C, and D as back up.  After that, its all a crapshoot.

Best of luck,

Kim

Tough choice but I chose IL-2.  I was a complete responder and am NED one year after IL-2.  This is what I have concluded about IL-2 and IPI.  Sorry longish, but it is what I have been able to make sense out of it.  My oncs are on the same page as well.  I have a medical background as well.  (DVM)

Pros:

1.  If you are in the 6% that are complete responders, you have the best shot at prolonged remission.  There is a great article on this, and so far is the benchmark to beat.  People who have gone past 30 months w/o a recurrence probably won't ever have one.  If and when they do it tends to be a spot here or there which you can try to cherry pick.

2.  Of the complete responders to IL-2, there has yet to be a median survival curve.  (We are still setting it and tend to die from old age instead!!!)

3.  You will know within 6 weeks if you are responding.

4.  As sick as you get, IL-2 has been around and well trained staff do a great job treating the side effects and monitoring you.  Within a week or two most people are pretty much back to normal.  Just a little tired, itchy, and flakey.  My skin looked great afterwards!

5.  It is doable if you are healthy and strong.  Don't wait until this disease has eaten you up.  The best responders are like me with 1-2 lung mets or better yet, only SQ or in-transit disease.  (Over 6% in this category tend to go into complete remission).  The article I am thinking of quoted a percentage of responders and complete responders which was much higher!

6.  Didn't require life long treatment, effects were reversible and rather quickly.

7.  Didn't limit me too much for follow up clinical trials if needed, and in fact would open some doors ex. must have failed at least one prior systemic treatment to quailify….

Cons:

1.  IL-2 is said to be "the worst thing we do to cancer patients" as told to me by Dr. Glaspy – UCLA, Palalay, and Morita – my oncs here at Queen's in Honolulu.

2.  You are brought to the edge of death then jerked back to life.  10 days later you get to do it again.

3.  It scared the $hit out of me, but was the best thing going at the time (and I think still is)

IPI –

Pros:

1.  Immune based.

2.  Good responses compared to what has been available so far

Cons:

1.  May limit future clinical trials using drugs with a similar method of action ex. vermufinib sp? which seems to have a faster onset of action than IPI.

2.  How long will it continue to work?

3.  Length of treatment?  Indefinite?

4. Also has severe side effects ex. ruptured colon, severe autoimmune disease

Personally IPI and drugs like it are in my arsenal should I recur.  I am also BRAF+.  For me and my one lung met & very tiny chest wall met, I was an ideal candidate for IL-2.  If it comes back I am hoping by then that there are good trials using multiple combinations of drugs ex. BRAF inhibitors with immune stimulators & other inhibitors of MEK/ERK pathways.

The multiple approach of using immune stimulators, and several melanoma pathway inhibitors seems to make the best approach on beating this thing back.  While the trials seem to be rapidly moving in that direction, there still is much work to be done.  I want to buy as much time as possible so research as much of this figured out for if and when I need it.

If I did IPI right off the bat, I think in the long run I would be limiting my options for the future.  (IMHO).  It is also the newest greatest thing and everyone is still trying to figure out who will best benefit from it.  Try to stay with the facts, don't be distracted by the hype.

I do wonder about Jim B's point about "priming" the immune system by doing IPI first followed by IL-2 and if you have greater responses.  1st unleash the immune system using the IPI like drugs, then open up a can of woop ar$$ with IL-2 afterwards.  The immune cells do travel into the CNS and hopefully will prevent brain mets, IPI won't cross the BB barrier however.  Brain mets usually prevent you from getting IL-2.  It has been done but with stable and minimal disease.  IL-2 is scary enough without brain mets.  The mets up the ante by a whole magnitude of order…

Work the problem as Charlie S says.  Don't be afraid of IL-2, it still has it's place and with your disease location and amount, you are a good candidate for IL-2 as well.

Regardless, NEVER LOOK BACK once you make up your mind.  You need to buy into your treatment plan 100%, and have a plan B, C, and D as back up.  After that, its all a crapshoot.

Best of luck,

Kim