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High dose IL-2 experience so far

Forums General Melanoma Community High dose IL-2 experience so far

  • Post
    Ali
    Participant

      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

    Viewing 14 reply threads
    • Replies
        Karin L
        Participant

          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

            Ali
            Participant

              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

              Ali
              Participant

                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

                Ali
                Participant

                  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

                Karin L
                Participant

                  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

                  Karin L
                  Participant

                    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

                    aldakota22
                    Participant

                      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

                        Ali
                        Participant

                          Thank you! 

                          Ali
                          Participant

                            Thank you! 

                            Ali
                            Participant

                              Thank you! 

                            aldakota22
                            Participant

                              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

                              aldakota22
                              Participant

                                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

                                Rebecca and Bob
                                Participant

                                  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

                                  Rebecca and Bob
                                  Participant

                                    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

                                      Rebecca and Bob
                                      Participant

                                        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

                                         

                                        Rebecca and Bob
                                        Participant

                                          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

                                           

                                          Rebecca and Bob
                                          Participant

                                            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

                                             

                                            Ali
                                            Participant

                                              Wow Rebecca, that is great news!  So glad to hear about the NED status!  And truly, any response is a good one, if nothing else I have way less disease than to begin with.   Thanks for the hope!

                                              Ali

                                              Ali
                                              Participant

                                                Those symptoms sound familiar:)  Glad you guys made it through and on top.

                                                Ali
                                                Participant

                                                  Those symptoms sound familiar:)  Glad you guys made it through and on top.

                                                  Ali
                                                  Participant

                                                    Those symptoms sound familiar:)  Glad you guys made it through and on top.

                                                    Karin L
                                                    Participant

                                                      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

                                                      Karin L
                                                      Participant

                                                        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

                                                        Ali
                                                        Participant

                                                          That makes sense.  Hopefully you won't even need the IPI.  Good thoughts for April 9th.  And yes, round 2 is only if you have had some sort or response, my Dr. estimated that 30% of those that do a first round get to do a 2nd.  Thanks Karin! 

                                                          Ali
                                                          Participant

                                                            That makes sense.  Hopefully you won't even need the IPI.  Good thoughts for April 9th.  And yes, round 2 is only if you have had some sort or response, my Dr. estimated that 30% of those that do a first round get to do a 2nd.  Thanks Karin! 

                                                            Ali
                                                            Participant

                                                              That makes sense.  Hopefully you won't even need the IPI.  Good thoughts for April 9th.  And yes, round 2 is only if you have had some sort or response, my Dr. estimated that 30% of those that do a first round get to do a 2nd.  Thanks Karin! 

                                                              Karin L
                                                              Participant

                                                                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

                                                                Ali
                                                                Participant

                                                                  Wow Rebecca, that is great news!  So glad to hear about the NED status!  And truly, any response is a good one, if nothing else I have way less disease than to begin with.   Thanks for the hope!

                                                                  Ali

                                                                  Ali
                                                                  Participant

                                                                    Wow Rebecca, that is great news!  So glad to hear about the NED status!  And truly, any response is a good one, if nothing else I have way less disease than to begin with.   Thanks for the hope!

                                                                    Ali

                                                                  Rebecca and Bob
                                                                  Participant

                                                                    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

                                                                    triciad
                                                                    Participant

                                                                      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

                                                                      triciad
                                                                      Participant

                                                                        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

                                                                        triciad
                                                                        Participant

                                                                          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

                                                                            mzeigler
                                                                            Participant

                                                                              Ali,  I hope you have continued success with your IL-2 treatments.  The treatment is brutal, but hopefully the shrinkage will continue.

                                                                              Mike

                                                                              mzeigler
                                                                              Participant

                                                                                Ali,  I hope you have continued success with your IL-2 treatments.  The treatment is brutal, but hopefully the shrinkage will continue.

                                                                                Mike

                                                                                mzeigler
                                                                                Participant

                                                                                  Ali,  I hope you have continued success with your IL-2 treatments.  The treatment is brutal, but hopefully the shrinkage will continue.

                                                                                  Mike

                                                                                  Ali
                                                                                  Participant

                                                                                    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!

                                                                                    Ali
                                                                                    Participant

                                                                                      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!

                                                                                      Ali
                                                                                      Participant

                                                                                        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!

                                                                                      Rick from NC
                                                                                      Participant

                                                                                        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

                                                                                          Ali
                                                                                          Participant

                                                                                            Wow Rick!  So glad it worked so great for you!  I love those kind of stories!  That is just what I need to hear as I prepare myself for week 4.  I start on Monday.  Thanks!!!

                                                                                            Ali
                                                                                            Participant

                                                                                              Wow Rick!  So glad it worked so great for you!  I love those kind of stories!  That is just what I need to hear as I prepare myself for week 4.  I start on Monday.  Thanks!!!

                                                                                              Ali
                                                                                              Participant

                                                                                                Wow Rick!  So glad it worked so great for you!  I love those kind of stories!  That is just what I need to hear as I prepare myself for week 4.  I start on Monday.  Thanks!!!

                                                                                              Rick from NC
                                                                                              Participant

                                                                                                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

                                                                                                Rick from NC
                                                                                                Participant

                                                                                                  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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