your IL-2 experience please

I hope someone who knows more replies, Krista, but for now you might want to do a search for posts from Jane from Maine.  She was a complete responder to IL-2 when I was first diagnosed.  It has been about 8 years so I hope you can acess her posts as they were really informative.    Keeping you and your husband in my prayers.   

Fen

I hope someone who knows more replies, Krista, but for now you might want to do a search for posts from Jane from Maine.  She was a complete responder to IL-2 when I was first diagnosed.  It has been about 8 years so I hope you can acess her posts as they were really informative.    Keeping you and your husband in my prayers.   

Fen

I hope someone who knows more replies, Krista, but for now you might want to do a search for posts from Jane from Maine.  She was a complete responder to IL-2 when I was first diagnosed.  It has been about 8 years so I hope you can acess her posts as they were really informative.    Keeping you and your husband in my prayers.   

Fen

I haven't updated my website in a long time, but if you go to the link in my signature and go to "Patient Perspectives", you can scroll down to IL-2.  That section includes info by Jane from Maine and a few others.  They give their helpful hints on how to do IL-2 and what you need to take to the hospital and other things like that.

I haven't updated my website in a long time, but if you go to the link in my signature and go to "Patient Perspectives", you can scroll down to IL-2.  That section includes info by Jane from Maine and a few others.  They give their helpful hints on how to do IL-2 and what you need to take to the hospital and other things like that.

I haven't updated my website in a long time, but if you go to the link in my signature and go to "Patient Perspectives", you can scroll down to IL-2.  That section includes info by Jane from Maine and a few others.  They give their helpful hints on how to do IL-2 and what you need to take to the hospital and other things like that.

Hi Krista,

I did a normal course of IL-2 in 2010. I was pretty tired after each cycle — took 2-3 weeks each time to recover. Meaning non much time fully recovered between cycles 1+ 2. The longer stretch between cycles 2+3 gave some recovered time, then not much time to recover between 3+4. 

It was not pleasant during each cycle, just being in the hospital sucks aside from any effects from the treatment. I lucked out in that I did not get the water weight gain side effect, nor any endocrine problems. 

It put my lung mets into remission still to this day. I really didn't expect to be in that 5-6% group. A couple of lymphs node in my chest reared up in 2014, stablilized/stable by treatment at this point. I also had some brain mets emerge immediately after the IL-2 treatment. I think a cell or two must have escaped up into my brain. If that hadn't happened, I might be in remission today, or at least except for the lymph nodes.

My clinical trial coordinator says drug companies are starting to relax the 'no prior treatments' requirements, like being exclucded from a combo trial with PD1 if I had prior treatment PD1. There are some new drugs being combined with PD1 that sound interesting.

Good luck on your husband's next regimen. Best,

Kyle

Hi Krista,

I did a normal course of IL-2 in 2010. I was pretty tired after each cycle — took 2-3 weeks each time to recover. Meaning non much time fully recovered between cycles 1+ 2. The longer stretch between cycles 2+3 gave some recovered time, then not much time to recover between 3+4. 

It was not pleasant during each cycle, just being in the hospital sucks aside from any effects from the treatment. I lucked out in that I did not get the water weight gain side effect, nor any endocrine problems. 

It put my lung mets into remission still to this day. I really didn't expect to be in that 5-6% group. A couple of lymphs node in my chest reared up in 2014, stablilized/stable by treatment at this point. I also had some brain mets emerge immediately after the IL-2 treatment. I think a cell or two must have escaped up into my brain. If that hadn't happened, I might be in remission today, or at least except for the lymph nodes.

My clinical trial coordinator says drug companies are starting to relax the 'no prior treatments' requirements, like being exclucded from a combo trial with PD1 if I had prior treatment PD1. There are some new drugs being combined with PD1 that sound interesting.

Good luck on your husband's next regimen. Best,

Kyle

Hi Krista,

I did a normal course of IL-2 in 2010. I was pretty tired after each cycle — took 2-3 weeks each time to recover. Meaning non much time fully recovered between cycles 1+ 2. The longer stretch between cycles 2+3 gave some recovered time, then not much time to recover between 3+4. 

It was not pleasant during each cycle, just being in the hospital sucks aside from any effects from the treatment. I lucked out in that I did not get the water weight gain side effect, nor any endocrine problems. 

It put my lung mets into remission still to this day. I really didn't expect to be in that 5-6% group. A couple of lymphs node in my chest reared up in 2014, stablilized/stable by treatment at this point. I also had some brain mets emerge immediately after the IL-2 treatment. I think a cell or two must have escaped up into my brain. If that hadn't happened, I might be in remission today, or at least except for the lymph nodes.

My clinical trial coordinator says drug companies are starting to relax the 'no prior treatments' requirements, like being exclucded from a combo trial with PD1 if I had prior treatment PD1. There are some new drugs being combined with PD1 that sound interesting.

Good luck on your husband's next regimen. Best,

Kyle

I don't know if my posts are still in the archives or not but I underwent IL-2 in May & June of 2010 and have been NED ever since.

It is tough but doable.  The patient tips are excellent, I added a few of my own as well.  If you can get a hold of the "drops" or Poo-pouri it helps.  Sorry to be TMI but I had severe diarrhea.  I was too embarassed to call everytime I went but was also ceartain I was going to flood my "hat", the thing they put in the commode to catch everything.  They will strictly monitor your in's and out's, will be on an ECG continuously.

I did 23 bags.  13, then 10.  I was tired inbetween the 2 treatments, had peeling skin, and no appetite.  By the end of the second day I was sleeping most of the time.  The only discomfort besides the runs was dry skin including my eyelids.  Lubricant eye drops were very helpful as well as a lidocaine gargle and spray for my mouth sores.  I even had sores inside my nostrils.  Vaseline helped with that.

Once they stop treatment you recover quickly considering how sick they make you.

My frist treatment ended because my kidneys quit and my platelet count dropped to the point I was bleeding from my kidneys.  They were also no longer able to keep my blood pressure up which hovered around 50/30.

The second cycle stopped at 10.  I stopped it because I was no longer able to breathe while lying down in bed (fluid in the lungs), hurt so much from the ulcers (not as common), my heart was having arrythmias that didn't seem to concern the nurses, but concerned me!  I was convinced I would die or be put on a vent if I had another bag.  It was a very very hard choice to make.

I am a veterinarian and the arrythimias I saw were ventricular and getting worse.  I could feel them and had runs of PVC's that started to take up the entire monitor screen.  I was sure someone would call a code and run in with the paddles at any moment.  If that didn't scare them our cause them concern, that bothered me A LOT!  I lost trust that one more bag would make a difference in a good way so stopped.  Later I learned that they never had a female patient take as much as I did, and there was only one patient that took 24 bags.  Not that I was trying to set a record, but I was trying to save my life.  I had a 2 and 4 year old at the time.

Best of luck.  I hope it works.  Just ask your doc why they thing IL-2 will help since it is like taking a shotgun to your immune system while the newer drugs are far more targeted at modulating your immune system.  If the other immunotherapies didn't help, what is the reasoning behind IL-2 that mass activates your T cells?  Just wondering.

NIH does bonemarrow depletion first followed by stem cell transfer and then IL-2.  Much tougher to do but has an even higher response rate, about double I think.

Just some questions you might want to ask.

Yeah, I don't know why, but am eternally grateful to be in the 3% durable remission club.  6% complete responders of which half will have a durable remission.  When it works, there is the chance for "cure", but still such a small percent.  

In 2010 I only had that or Braf in a clinical trial.  I wasn't all impressed with biochemo.  How 5 years can make a difference.  If only my fallen warriors had the chance as well.

KK

I don't know if my posts are still in the archives or not but I underwent IL-2 in May & June of 2010 and have been NED ever since.

It is tough but doable.  The patient tips are excellent, I added a few of my own as well.  If you can get a hold of the "drops" or Poo-pouri it helps.  Sorry to be TMI but I had severe diarrhea.  I was too embarassed to call everytime I went but was also ceartain I was going to flood my "hat", the thing they put in the commode to catch everything.  They will strictly monitor your in's and out's, will be on an ECG continuously.

I did 23 bags.  13, then 10.  I was tired inbetween the 2 treatments, had peeling skin, and no appetite.  By the end of the second day I was sleeping most of the time.  The only discomfort besides the runs was dry skin including my eyelids.  Lubricant eye drops were very helpful as well as a lidocaine gargle and spray for my mouth sores.  I even had sores inside my nostrils.  Vaseline helped with that.

Once they stop treatment you recover quickly considering how sick they make you.

My frist treatment ended because my kidneys quit and my platelet count dropped to the point I was bleeding from my kidneys.  They were also no longer able to keep my blood pressure up which hovered around 50/30.

The second cycle stopped at 10.  I stopped it because I was no longer able to breathe while lying down in bed (fluid in the lungs), hurt so much from the ulcers (not as common), my heart was having arrythmias that didn't seem to concern the nurses, but concerned me!  I was convinced I would die or be put on a vent if I had another bag.  It was a very very hard choice to make.

I am a veterinarian and the arrythimias I saw were ventricular and getting worse.  I could feel them and had runs of PVC's that started to take up the entire monitor screen.  I was sure someone would call a code and run in with the paddles at any moment.  If that didn't scare them our cause them concern, that bothered me A LOT!  I lost trust that one more bag would make a difference in a good way so stopped.  Later I learned that they never had a female patient take as much as I did, and there was only one patient that took 24 bags.  Not that I was trying to set a record, but I was trying to save my life.  I had a 2 and 4 year old at the time.

Best of luck.  I hope it works.  Just ask your doc why they thing IL-2 will help since it is like taking a shotgun to your immune system while the newer drugs are far more targeted at modulating your immune system.  If the other immunotherapies didn't help, what is the reasoning behind IL-2 that mass activates your T cells?  Just wondering.

NIH does bonemarrow depletion first followed by stem cell transfer and then IL-2.  Much tougher to do but has an even higher response rate, about double I think.

Just some questions you might want to ask.

Yeah, I don't know why, but am eternally grateful to be in the 3% durable remission club.  6% complete responders of which half will have a durable remission.  When it works, there is the chance for "cure", but still such a small percent.  

In 2010 I only had that or Braf in a clinical trial.  I wasn't all impressed with biochemo.  How 5 years can make a difference.  If only my fallen warriors had the chance as well.

KK

I don't know if my posts are still in the archives or not but I underwent IL-2 in May & June of 2010 and have been NED ever since.

It is tough but doable.  The patient tips are excellent, I added a few of my own as well.  If you can get a hold of the "drops" or Poo-pouri it helps.  Sorry to be TMI but I had severe diarrhea.  I was too embarassed to call everytime I went but was also ceartain I was going to flood my "hat", the thing they put in the commode to catch everything.  They will strictly monitor your in's and out's, will be on an ECG continuously.

I did 23 bags.  13, then 10.  I was tired inbetween the 2 treatments, had peeling skin, and no appetite.  By the end of the second day I was sleeping most of the time.  The only discomfort besides the runs was dry skin including my eyelids.  Lubricant eye drops were very helpful as well as a lidocaine gargle and spray for my mouth sores.  I even had sores inside my nostrils.  Vaseline helped with that.

Once they stop treatment you recover quickly considering how sick they make you.

My frist treatment ended because my kidneys quit and my platelet count dropped to the point I was bleeding from my kidneys.  They were also no longer able to keep my blood pressure up which hovered around 50/30.

The second cycle stopped at 10.  I stopped it because I was no longer able to breathe while lying down in bed (fluid in the lungs), hurt so much from the ulcers (not as common), my heart was having arrythmias that didn't seem to concern the nurses, but concerned me!  I was convinced I would die or be put on a vent if I had another bag.  It was a very very hard choice to make.

I am a veterinarian and the arrythimias I saw were ventricular and getting worse.  I could feel them and had runs of PVC's that started to take up the entire monitor screen.  I was sure someone would call a code and run in with the paddles at any moment.  If that didn't scare them our cause them concern, that bothered me A LOT!  I lost trust that one more bag would make a difference in a good way so stopped.  Later I learned that they never had a female patient take as much as I did, and there was only one patient that took 24 bags.  Not that I was trying to set a record, but I was trying to save my life.  I had a 2 and 4 year old at the time.

Best of luck.  I hope it works.  Just ask your doc why they thing IL-2 will help since it is like taking a shotgun to your immune system while the newer drugs are far more targeted at modulating your immune system.  If the other immunotherapies didn't help, what is the reasoning behind IL-2 that mass activates your T cells?  Just wondering.

NIH does bonemarrow depletion first followed by stem cell transfer and then IL-2.  Much tougher to do but has an even higher response rate, about double I think.

Just some questions you might want to ask.

Yeah, I don't know why, but am eternally grateful to be in the 3% durable remission club.  6% complete responders of which half will have a durable remission.  When it works, there is the chance for "cure", but still such a small percent.  

In 2010 I only had that or Braf in a clinical trial.  I wasn't all impressed with biochemo.  How 5 years can make a difference.  If only my fallen warriors had the chance as well.

KK