› Forums › General Melanoma Community › High dose IL-2 experience so far
- This topic has 45 replies, 7 voices, and was last updated 12 years, 6 months ago by
Ali.
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- March 27, 2012 at 6:31 pm
Just wanted to check in and update the progress we are making with IL-2. The scans after my first cycle (one week at the hospital, one home to recover, another at the hospital) showed shrinkage and stable disease. All the tumors in by breasts that I could easily feel with my fingers (and were determined to indeed be melanoma with a needle aspiration biopsy) melted away during my stay at the hospital the second week. The liver tumors have not grown. The ones in my bones were radiated right before IL-2, and look like dead tumor to the Dr. We are pretty thrilled a
Just wanted to check in and update the progress we are making with IL-2. The scans after my first cycle (one week at the hospital, one home to recover, another at the hospital) showed shrinkage and stable disease. All the tumors in by breasts that I could easily feel with my fingers (and were determined to indeed be melanoma with a needle aspiration biopsy) melted away during my stay at the hospital the second week. The liver tumors have not grown. The ones in my bones were radiated right before IL-2, and look like dead tumor to the Dr. We are pretty thrilled about all this! I am curious to know what other responder's experiences have been. They are not calling me a partial responder yet, just stable disease. I know the liver is a hard one to get to, but there are complete responders who have had liver mets, yes?
I am not going to lie, the weeks at the hospital are pretty bad. I have done three weeks now and each one has had its own kind of torture. The first week was fatigue, high fevers, chills, nausea. I don't remember much at all about that week. The second week was blood pressure issues, and rigors (body chills) that were hard to get rid of. And a long recovery when I got home. The third week I was just sick as a dog, throwing up every time I got out of bed. It was my easiest recovery though.
Every week included flu like symptoms. I have not had the bowel issues I read about. I gain 20 lbs of water by the end of each week, which wouldn't be so bad if I didn't have lympedema in my leg. The water loves to hang out there for a few days. Not fun. I feel like I would do anything to beat this, and IL-2 seems to match my intensity.
Good luck to all in this battle! I think of you often and thank you for the support and hope you have given to those of us new at the stage IV thing.
Ali
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- March 27, 2012 at 7:41 pm
Good job Ali! Sounding super great so far. In 2 weeks I will be one year out from starting my HD IL2. (Scan anxiety at it's peak right now though). I had many liver mets, lymph node and bone mets also. The IL 2 took care of the bone mets (Dr. didn't want to interrupt IL2 regimen to radiate so we took a chance) and the small liver mets disappeared…larger ones have continued to shrink (last scan first of Dec.). I guess I would be considered a partial responder? Noone ever has said.
Your after hospital stay and recovery sound very similar to my own. Round 2 was really rough for me. I have had quite a bit of issues post IL2 to deal with but they are doable. Like you say, I wanna kick butt and if that's what it takes, so be it!
Hang in there and keep us posted.
Karin
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- March 27, 2012 at 11:57 pm
Karin,
Thanks for the info, your story sounds a lot like mine. Mine started in my leg (2007) and I tried to get on the oncovex last year when I had a recurrence (got picked for the GMCSF arm and decided against it). So…as long as you continue to see shrinkage, they don't start you on IPI or another trial? I guess I hadn't concidered this option, kind of thinking we would know if I was a complete responder by the end of this or not. This is good to prepare me for the possiblity of not knowing the answer to that for a while.
Good luck in 2 weeks! I will be thinking about you. I hope you continue to get good news! Keep me posted.
Ali
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- March 27, 2012 at 11:57 pm
Karin,
Thanks for the info, your story sounds a lot like mine. Mine started in my leg (2007) and I tried to get on the oncovex last year when I had a recurrence (got picked for the GMCSF arm and decided against it). So…as long as you continue to see shrinkage, they don't start you on IPI or another trial? I guess I hadn't concidered this option, kind of thinking we would know if I was a complete responder by the end of this or not. This is good to prepare me for the possiblity of not knowing the answer to that for a while.
Good luck in 2 weeks! I will be thinking about you. I hope you continue to get good news! Keep me posted.
Ali
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- March 27, 2012 at 11:57 pm
Karin,
Thanks for the info, your story sounds a lot like mine. Mine started in my leg (2007) and I tried to get on the oncovex last year when I had a recurrence (got picked for the GMCSF arm and decided against it). So…as long as you continue to see shrinkage, they don't start you on IPI or another trial? I guess I hadn't concidered this option, kind of thinking we would know if I was a complete responder by the end of this or not. This is good to prepare me for the possiblity of not knowing the answer to that for a while.
Good luck in 2 weeks! I will be thinking about you. I hope you continue to get good news! Keep me posted.
Ali
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- March 27, 2012 at 7:41 pm
Good job Ali! Sounding super great so far. In 2 weeks I will be one year out from starting my HD IL2. (Scan anxiety at it's peak right now though). I had many liver mets, lymph node and bone mets also. The IL 2 took care of the bone mets (Dr. didn't want to interrupt IL2 regimen to radiate so we took a chance) and the small liver mets disappeared…larger ones have continued to shrink (last scan first of Dec.). I guess I would be considered a partial responder? Noone ever has said.
Your after hospital stay and recovery sound very similar to my own. Round 2 was really rough for me. I have had quite a bit of issues post IL2 to deal with but they are doable. Like you say, I wanna kick butt and if that's what it takes, so be it!
Hang in there and keep us posted.
Karin
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- March 27, 2012 at 7:41 pm
Good job Ali! Sounding super great so far. In 2 weeks I will be one year out from starting my HD IL2. (Scan anxiety at it's peak right now though). I had many liver mets, lymph node and bone mets also. The IL 2 took care of the bone mets (Dr. didn't want to interrupt IL2 regimen to radiate so we took a chance) and the small liver mets disappeared…larger ones have continued to shrink (last scan first of Dec.). I guess I would be considered a partial responder? Noone ever has said.
Your after hospital stay and recovery sound very similar to my own. Round 2 was really rough for me. I have had quite a bit of issues post IL2 to deal with but they are doable. Like you say, I wanna kick butt and if that's what it takes, so be it!
Hang in there and keep us posted.
Karin
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- March 27, 2012 at 9:08 pm
very happy that all you have gone thru with the side affects is paying off.keep the fight going.I am rooting for your complete NED diagnosis.My prayers go out to you. Al
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- March 27, 2012 at 9:08 pm
very happy that all you have gone thru with the side affects is paying off.keep the fight going.I am rooting for your complete NED diagnosis.My prayers go out to you. Al
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- March 27, 2012 at 9:08 pm
very happy that all you have gone thru with the side affects is paying off.keep the fight going.I am rooting for your complete NED diagnosis.My prayers go out to you. Al
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- March 27, 2012 at 11:05 pm
Ali,
It's such a tough treatment but your results sound really great. My husband had sub q's which I didn't mention in the profile. He had one on his flank, and others. They were the first to go away on the treatment. They just started to flatten out after the first two treatments or two weeks. He had lung tumors and one disappeared and the other shrunk. The one that shrunk just slowly kept shrinking after the second round and then the third. A year later they decided to remove it and it was a dead tumor. We think the surgery was not a good idea because the IL-2 was still working and 2 months after surgery he had intestinal mets and they were surgically removed. He is now 2 years 8 months NED.
We completely believe that the IL-2 played a huge part on getting rid of many tumors and then what reappeared was removed. He was first considered a complete responder because the last lung tumor was dead, but then after the reoccurrence they felt it was a partial response. I think any response is good, because if this treatment will work I have to believe your body will work with other treatments.
Wishing you great results and those side effects are awful but hang in there.
Rebecca
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- March 27, 2012 at 11:05 pm
Ali,
It's such a tough treatment but your results sound really great. My husband had sub q's which I didn't mention in the profile. He had one on his flank, and others. They were the first to go away on the treatment. They just started to flatten out after the first two treatments or two weeks. He had lung tumors and one disappeared and the other shrunk. The one that shrunk just slowly kept shrinking after the second round and then the third. A year later they decided to remove it and it was a dead tumor. We think the surgery was not a good idea because the IL-2 was still working and 2 months after surgery he had intestinal mets and they were surgically removed. He is now 2 years 8 months NED.
We completely believe that the IL-2 played a huge part on getting rid of many tumors and then what reappeared was removed. He was first considered a complete responder because the last lung tumor was dead, but then after the reoccurrence they felt it was a partial response. I think any response is good, because if this treatment will work I have to believe your body will work with other treatments.
Wishing you great results and those side effects are awful but hang in there.
Rebecca
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- March 27, 2012 at 11:10 pm
One other thing, my husband also had issues with blood pressure on his 1st week he took 10 bags, 2nd week 4 bags, 3rd week 8 bags, fourth week in he only could take 4 bags and his blood pressure tanked. He did another two weeks and I can't remember how much he did, his were 8 hours apart and he had rashes, hallucinations, vomiting, skin peeling, water gain. The worst for him was the skin peeling and oatmeal baths helped.
Rebecca
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- March 27, 2012 at 11:10 pm
One other thing, my husband also had issues with blood pressure on his 1st week he took 10 bags, 2nd week 4 bags, 3rd week 8 bags, fourth week in he only could take 4 bags and his blood pressure tanked. He did another two weeks and I can't remember how much he did, his were 8 hours apart and he had rashes, hallucinations, vomiting, skin peeling, water gain. The worst for him was the skin peeling and oatmeal baths helped.
Rebecca
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- March 27, 2012 at 11:10 pm
One other thing, my husband also had issues with blood pressure on his 1st week he took 10 bags, 2nd week 4 bags, 3rd week 8 bags, fourth week in he only could take 4 bags and his blood pressure tanked. He did another two weeks and I can't remember how much he did, his were 8 hours apart and he had rashes, hallucinations, vomiting, skin peeling, water gain. The worst for him was the skin peeling and oatmeal baths helped.
Rebecca
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- March 28, 2012 at 1:36 am
Well, back at the Sept. scans Dr. said he would probably put me on IPI at the Dec. mark but chose not to since I was still responding to the IL2 (CT scans indicated "continued improvement" in Dec.) so now I await 4mo. scan April 9th which will be a PET/CT. The last path report also said 3 of the 5 liver *spots* remaining appeared to be cysts (I assume that is good but do not really understand why).
I do recall being told no need for round 2 if there was no response after Round 1 so you have half the battle beat, right?
Karin
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- March 28, 2012 at 1:36 am
Well, back at the Sept. scans Dr. said he would probably put me on IPI at the Dec. mark but chose not to since I was still responding to the IL2 (CT scans indicated "continued improvement" in Dec.) so now I await 4mo. scan April 9th which will be a PET/CT. The last path report also said 3 of the 5 liver *spots* remaining appeared to be cysts (I assume that is good but do not really understand why).
I do recall being told no need for round 2 if there was no response after Round 1 so you have half the battle beat, right?
Karin
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- March 28, 2012 at 1:36 am
Well, back at the Sept. scans Dr. said he would probably put me on IPI at the Dec. mark but chose not to since I was still responding to the IL2 (CT scans indicated "continued improvement" in Dec.) so now I await 4mo. scan April 9th which will be a PET/CT. The last path report also said 3 of the 5 liver *spots* remaining appeared to be cysts (I assume that is good but do not really understand why).
I do recall being told no need for round 2 if there was no response after Round 1 so you have half the battle beat, right?
Karin
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- March 27, 2012 at 11:05 pm
Ali,
It's such a tough treatment but your results sound really great. My husband had sub q's which I didn't mention in the profile. He had one on his flank, and others. They were the first to go away on the treatment. They just started to flatten out after the first two treatments or two weeks. He had lung tumors and one disappeared and the other shrunk. The one that shrunk just slowly kept shrinking after the second round and then the third. A year later they decided to remove it and it was a dead tumor. We think the surgery was not a good idea because the IL-2 was still working and 2 months after surgery he had intestinal mets and they were surgically removed. He is now 2 years 8 months NED.
We completely believe that the IL-2 played a huge part on getting rid of many tumors and then what reappeared was removed. He was first considered a complete responder because the last lung tumor was dead, but then after the reoccurrence they felt it was a partial response. I think any response is good, because if this treatment will work I have to believe your body will work with other treatments.
Wishing you great results and those side effects are awful but hang in there.
Rebecca
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- March 28, 2012 at 1:37 am
Ali,
Congratulations with the IL-2. I haven't done it, but I hear it is brutal. I'm so happy t hear that you are having success. It's nice to read happy stories! I've read your previous posts, and I love your positive attitude!!!! Keep it up and wishing you continued success!!!
Tricia
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- March 28, 2012 at 1:37 am
Ali,
Congratulations with the IL-2. I haven't done it, but I hear it is brutal. I'm so happy t hear that you are having success. It's nice to read happy stories! I've read your previous posts, and I love your positive attitude!!!! Keep it up and wishing you continued success!!!
Tricia
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- March 28, 2012 at 1:37 am
Ali,
Congratulations with the IL-2. I haven't done it, but I hear it is brutal. I'm so happy t hear that you are having success. It's nice to read happy stories! I've read your previous posts, and I love your positive attitude!!!! Keep it up and wishing you continued success!!!
Tricia
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- March 30, 2012 at 5:38 pm
Thanks Tricia! I sometimes feel that I get on the board in times of distress, so I'm happy to hear I come across as positive. I do keep a blog that may be a better representation of how I really feel. joshalisa.blogspot.com, if you are interested. Again, thanks for the encouragement!
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- March 30, 2012 at 5:38 pm
Thanks Tricia! I sometimes feel that I get on the board in times of distress, so I'm happy to hear I come across as positive. I do keep a blog that may be a better representation of how I really feel. joshalisa.blogspot.com, if you are interested. Again, thanks for the encouragement!
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- March 30, 2012 at 5:38 pm
Thanks Tricia! I sometimes feel that I get on the board in times of distress, so I'm happy to hear I come across as positive. I do keep a blog that may be a better representation of how I really feel. joshalisa.blogspot.com, if you are interested. Again, thanks for the encouragement!
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- March 30, 2012 at 2:31 pm
Ali,
Best wishes to you. Everything you say sounds familiar to me from my experience 20 years ago (I did have the diarrhea that you've missed and also delusions and a hallucination), but IL-2 worked for me, and I'm still here now. I hope you also have the great fortune that I did, and do.
Rick
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- March 30, 2012 at 2:31 pm
Ali,
Best wishes to you. Everything you say sounds familiar to me from my experience 20 years ago (I did have the diarrhea that you've missed and also delusions and a hallucination), but IL-2 worked for me, and I'm still here now. I hope you also have the great fortune that I did, and do.
Rick
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- March 30, 2012 at 2:31 pm
Ali,
Best wishes to you. Everything you say sounds familiar to me from my experience 20 years ago (I did have the diarrhea that you've missed and also delusions and a hallucination), but IL-2 worked for me, and I'm still here now. I hope you also have the great fortune that I did, and do.
Rick
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