Starting Interleukin 2

Hello Anon,

Not much to go on here.  Stage IV then NED?  How, surgery?  And now, why IL-2 when there are other proven immunotherapies, with better track records and likely fewer side-effects (although that varies wildly).  My guess is you are not being seen by a melanoma specialist, defined by onc who ONLY sees melanoma patients, and likely is at a large research-oriented facility.  If you want info, fill us in on more details.  Best to you in the battle.

Gary

Hello Anon,

Not much to go on here.  Stage IV then NED?  How, surgery?  And now, why IL-2 when there are other proven immunotherapies, with better track records and likely fewer side-effects (although that varies wildly).  My guess is you are not being seen by a melanoma specialist, defined by onc who ONLY sees melanoma patients, and likely is at a large research-oriented facility.  If you want info, fill us in on more details.  Best to you in the battle.

Gary

Hello Anon,

Not much to go on here.  Stage IV then NED?  How, surgery?  And now, why IL-2 when there are other proven immunotherapies, with better track records and likely fewer side-effects (although that varies wildly).  My guess is you are not being seen by a melanoma specialist, defined by onc who ONLY sees melanoma patients, and likely is at a large research-oriented facility.  If you want info, fill us in on more details.  Best to you in the battle.

Gary

I agree with Gary. Today there are immunos that seem to work on metastatic mel.

I agree with Gary. Today there are immunos that seem to work on metastatic mel.

I agree with Gary. Today there are immunos that seem to work on metastatic mel.

Agree with other replies.  IL-2 has a very low response rate compared to other immunotherapy options.  Definitely recommend getting a melanoma specialist if you have not already consulted with one.

Good luck with treatment whatever you decide to do.

Maria

Agree with other replies.  IL-2 has a very low response rate compared to other immunotherapy options.  Definitely recommend getting a melanoma specialist if you have not already consulted with one.

Good luck with treatment whatever you decide to do.

Maria

Agree with other replies.  IL-2 has a very low response rate compared to other immunotherapy options.  Definitely recommend getting a melanoma specialist if you have not already consulted with one.

Good luck with treatment whatever you decide to do.

Maria

Other options are available that have a better response rate with solid remissions.  I underwent IL-2 in 2010, 23 bags and have been NED ever since.  I had one small lung met removed with VATS and an even smaller one in my pectoralis muscle.

Do a search for IL-2 tips, you should get plenty of info.  Keep someone there with you since you will be too weak to do much.  All depends on how good the nurses are.  A very very rough treatment but doable.  Tons of side effects ex. mouth / throat ulcers, raw rear end (I used EMLA) cream for that and a lidocaine spray for my throat.  Lubricating eye drops like Gentele (spelling) since your eyelids will also peel.

Everyone reacts somewhat differently as far as side effects.  In the end, it will work or it won't and recovery is very fast once the meds are stopped.

Best of luck.

If I had to do it again in light of these newer treatments, I may have gone for it.  Then again, if you are in the 6% club of complete responders, you will have a 50:50 chance you will have a durable remission.  The longer you go without a recurrance, the less likely you will ever hear from mel again.  Like me .

Other options are available that have a better response rate with solid remissions.  I underwent IL-2 in 2010, 23 bags and have been NED ever since.  I had one small lung met removed with VATS and an even smaller one in my pectoralis muscle.

Do a search for IL-2 tips, you should get plenty of info.  Keep someone there with you since you will be too weak to do much.  All depends on how good the nurses are.  A very very rough treatment but doable.  Tons of side effects ex. mouth / throat ulcers, raw rear end (I used EMLA) cream for that and a lidocaine spray for my throat.  Lubricating eye drops like Gentele (spelling) since your eyelids will also peel.

Everyone reacts somewhat differently as far as side effects.  In the end, it will work or it won't and recovery is very fast once the meds are stopped.

Best of luck.

If I had to do it again in light of these newer treatments, I may have gone for it.  Then again, if you are in the 6% club of complete responders, you will have a 50:50 chance you will have a durable remission.  The longer you go without a recurrance, the less likely you will ever hear from mel again.  Like me .

Other options are available that have a better response rate with solid remissions.  I underwent IL-2 in 2010, 23 bags and have been NED ever since.  I had one small lung met removed with VATS and an even smaller one in my pectoralis muscle.

Do a search for IL-2 tips, you should get plenty of info.  Keep someone there with you since you will be too weak to do much.  All depends on how good the nurses are.  A very very rough treatment but doable.  Tons of side effects ex. mouth / throat ulcers, raw rear end (I used EMLA) cream for that and a lidocaine spray for my throat.  Lubricating eye drops like Gentele (spelling) since your eyelids will also peel.

Everyone reacts somewhat differently as far as side effects.  In the end, it will work or it won't and recovery is very fast once the meds are stopped.

Best of luck.

If I had to do it again in light of these newer treatments, I may have gone for it.  Then again, if you are in the 6% club of complete responders, you will have a 50:50 chance you will have a durable remission.  The longer you go without a recurrance, the less likely you will ever hear from mel again.  Like me .

OOOkie Dokie Anon.

Your post is as clear as mud; so help me out here and I will try and do the same for you.

You are Stage IV now……….were you that when diagnosed in 2014;  and what circumstances brought you to that diagnosis at that time?

What event or combination of events since 2014 led you to believe that you no longer suffered from melanoma?

That said,, it appears most responders opinions are like rectums……………every one has one……………….but not as many have the experience of the question at hand.

You are going to do IL2.  I have done IL2 more than four times.

Usually it starts out reporting to the hospital early on a Monday morning and being escorted to ICU.  Then after the usual rig-a-ma-roe, you will be taken to Interventional Radiology to have a central line threaded into your neck.

This single line, will have two or three ports hanging out of the end.

These ports are the entry point for the drugs you are about to receive.

Some time around mid to late afternoon, after receiving several drugs and fluids, you will get your first dose of Interleukin 2 (aldesleukin).

This first iv bag is prepared in the lab , has a short shelf life and because it costs around 6K a bag is usually escorted by security .

For me, the first infusion was really not that consequential……………I think maybe it was because of all the adrenaline of anticipation.

The protocol is one infusion every 8 hours.

Second one started kicking my ass.

I'm just gonna say it goes downhill from there .

So you end up with one week on, one week off, one week on then two weeks and scan to see where you are at

The best thing is that when it is all over on Friday, in a few days you will be over it all…………………..well except your skin will crawl, peel and itch……………..that too though will pass.

Do I regret doing it?

 No.

 Was it tough?

 Yes.

 Do I give a shit what anyone else thinks about my decision to do it?

 No.

Do I wish you well?

You, bet…………..your chance, your choice.

Cheers,

Charlie S

OOOkie Dokie Anon.

Your post is as clear as mud; so help me out here and I will try and do the same for you.

You are Stage IV now……….were you that when diagnosed in 2014;  and what circumstances brought you to that diagnosis at that time?

What event or combination of events since 2014 led you to believe that you no longer suffered from melanoma?

That said,, it appears most responders opinions are like rectums……………every one has one……………….but not as many have the experience of the question at hand.

You are going to do IL2.  I have done IL2 more than four times.

Usually it starts out reporting to the hospital early on a Monday morning and being escorted to ICU.  Then after the usual rig-a-ma-roe, you will be taken to Interventional Radiology to have a central line threaded into your neck.

This single line, will have two or three ports hanging out of the end.

These ports are the entry point for the drugs you are about to receive.

Some time around mid to late afternoon, after receiving several drugs and fluids, you will get your first dose of Interleukin 2 (aldesleukin).

This first iv bag is prepared in the lab , has a short shelf life and because it costs around 6K a bag is usually escorted by security .

For me, the first infusion was really not that consequential……………I think maybe it was because of all the adrenaline of anticipation.

The protocol is one infusion every 8 hours.

Second one started kicking my ass.

I'm just gonna say it goes downhill from there .

So you end up with one week on, one week off, one week on then two weeks and scan to see where you are at

The best thing is that when it is all over on Friday, in a few days you will be over it all…………………..well except your skin will crawl, peel and itch……………..that too though will pass.

Do I regret doing it?

 No.

 Was it tough?

 Yes.

 Do I give a shit what anyone else thinks about my decision to do it?

 No.

Do I wish you well?

You, bet…………..your chance, your choice.

Cheers,

Charlie S

OOOkie Dokie Anon.

Your post is as clear as mud; so help me out here and I will try and do the same for you.

You are Stage IV now……….were you that when diagnosed in 2014;  and what circumstances brought you to that diagnosis at that time?

What event or combination of events since 2014 led you to believe that you no longer suffered from melanoma?

That said,, it appears most responders opinions are like rectums……………every one has one……………….but not as many have the experience of the question at hand.

You are going to do IL2.  I have done IL2 more than four times.

Usually it starts out reporting to the hospital early on a Monday morning and being escorted to ICU.  Then after the usual rig-a-ma-roe, you will be taken to Interventional Radiology to have a central line threaded into your neck.

This single line, will have two or three ports hanging out of the end.

These ports are the entry point for the drugs you are about to receive.

Some time around mid to late afternoon, after receiving several drugs and fluids, you will get your first dose of Interleukin 2 (aldesleukin).

This first iv bag is prepared in the lab , has a short shelf life and because it costs around 6K a bag is usually escorted by security .

For me, the first infusion was really not that consequential……………I think maybe it was because of all the adrenaline of anticipation.

The protocol is one infusion every 8 hours.

Second one started kicking my ass.

I'm just gonna say it goes downhill from there .

So you end up with one week on, one week off, one week on then two weeks and scan to see where you are at

The best thing is that when it is all over on Friday, in a few days you will be over it all…………………..well except your skin will crawl, peel and itch……………..that too though will pass.

Do I regret doing it?

 No.

 Was it tough?

 Yes.

 Do I give a shit what anyone else thinks about my decision to do it?

 No.

Do I wish you well?

You, bet…………..your chance, your choice.

Cheers,

Charlie S