› Forums › General Melanoma Community › IL 2 roll call
- This topic has 36 replies, 12 voices, and was last updated 11 years, 2 months ago by
jamfahey.
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- February 19, 2013 at 4:24 pm
Okay, I'm still awaiting my call from the Specialist for my second opinion visit, and have talked to everyone I can about IL 2. Mostly, the people I have spoken to who have had success with IL 2 have told me that they WOULD do it again. Even some of those who did IL 2 and then had to go on to other therapies.
So..what I'd like is to hear from everyone here who has done IL 2, when you did it, if you did it alone or with TIL. If you'd do it again.
thanks,
dian
Okay, I'm still awaiting my call from the Specialist for my second opinion visit, and have talked to everyone I can about IL 2. Mostly, the people I have spoken to who have had success with IL 2 have told me that they WOULD do it again. Even some of those who did IL 2 and then had to go on to other therapies.
So..what I'd like is to hear from everyone here who has done IL 2, when you did it, if you did it alone or with TIL. If you'd do it again.
thanks,
dian
- Replies
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- February 19, 2013 at 6:53 pm
Dian,
I haven't been on the board in months and am sorry to read that you are facing some challenges.
I did two rounds of IL 2 by itself back in 2004 with mixed results. Even though I had mixed results I feel that the benefits for me outweighed the side effects and I would definately try it again.
Best wishes,
Chris
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- February 19, 2013 at 6:53 pm
Dian,
I haven't been on the board in months and am sorry to read that you are facing some challenges.
I did two rounds of IL 2 by itself back in 2004 with mixed results. Even though I had mixed results I feel that the benefits for me outweighed the side effects and I would definately try it again.
Best wishes,
Chris
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- February 19, 2013 at 6:53 pm
Dian,
I haven't been on the board in months and am sorry to read that you are facing some challenges.
I did two rounds of IL 2 by itself back in 2004 with mixed results. Even though I had mixed results I feel that the benefits for me outweighed the side effects and I would definately try it again.
Best wishes,
Chris
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- February 19, 2013 at 10:03 pm
Dian,
I did 6 weeks of IL2 – staight up – no mixer. total of 54 doses. I just had my 4 year NED celebration in early February. Very tough, but very doable if you have a strong support system. I am not a good patient and it took someone to be with me nearly 24 a day while in hospital.
I am a stage 4 survivor and hope to remain NED thanks to IL2.
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- February 19, 2013 at 10:03 pm
Dian,
I did 6 weeks of IL2 – staight up – no mixer. total of 54 doses. I just had my 4 year NED celebration in early February. Very tough, but very doable if you have a strong support system. I am not a good patient and it took someone to be with me nearly 24 a day while in hospital.
I am a stage 4 survivor and hope to remain NED thanks to IL2.
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- February 19, 2013 at 10:03 pm
Dian,
I did 6 weeks of IL2 – staight up – no mixer. total of 54 doses. I just had my 4 year NED celebration in early February. Very tough, but very doable if you have a strong support system. I am not a good patient and it took someone to be with me nearly 24 a day while in hospital.
I am a stage 4 survivor and hope to remain NED thanks to IL2.
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- February 19, 2013 at 11:55 pm
Yup. Been there done that. For those who missed me in chat – 23 bags out of 28. Complete responder. My lung met was removed by surgery, the one small remaining one in my chest wall muscle disappeared thanks to IL-2. I did not do TIL prior, but after reading the paper saying it got better results than IL-2 alone, would probably have done it.
At the time, the paper wasn't out, and I would have had to get treated on the mainland away from family so didn't opt for it. Fortunately I became NED 30 months ago with just HD IL-2.
Tough but doable, quick recovery, may have lingering benefits when other immune mediating drugs follow ex. Yervoy. Apparantly my Thymus gland was reawakend and still has residual activity on PET/CT. (where the T-cell line originates from. This gland atrophies very early on in life and normally doesn't show up on scans). I strongly beleive that is why I have been blessed with the "creepy crawly" form of slow moving, minimal tumor burden disease.
I strongly feel I will have a durable remission and die from doing something stupid, heart DZ, or plain ole old age.
Take care,
Kim
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- February 19, 2013 at 11:55 pm
Yup. Been there done that. For those who missed me in chat – 23 bags out of 28. Complete responder. My lung met was removed by surgery, the one small remaining one in my chest wall muscle disappeared thanks to IL-2. I did not do TIL prior, but after reading the paper saying it got better results than IL-2 alone, would probably have done it.
At the time, the paper wasn't out, and I would have had to get treated on the mainland away from family so didn't opt for it. Fortunately I became NED 30 months ago with just HD IL-2.
Tough but doable, quick recovery, may have lingering benefits when other immune mediating drugs follow ex. Yervoy. Apparantly my Thymus gland was reawakend and still has residual activity on PET/CT. (where the T-cell line originates from. This gland atrophies very early on in life and normally doesn't show up on scans). I strongly beleive that is why I have been blessed with the "creepy crawly" form of slow moving, minimal tumor burden disease.
I strongly feel I will have a durable remission and die from doing something stupid, heart DZ, or plain ole old age.
Take care,
Kim
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- February 19, 2013 at 11:55 pm
Yup. Been there done that. For those who missed me in chat – 23 bags out of 28. Complete responder. My lung met was removed by surgery, the one small remaining one in my chest wall muscle disappeared thanks to IL-2. I did not do TIL prior, but after reading the paper saying it got better results than IL-2 alone, would probably have done it.
At the time, the paper wasn't out, and I would have had to get treated on the mainland away from family so didn't opt for it. Fortunately I became NED 30 months ago with just HD IL-2.
Tough but doable, quick recovery, may have lingering benefits when other immune mediating drugs follow ex. Yervoy. Apparantly my Thymus gland was reawakend and still has residual activity on PET/CT. (where the T-cell line originates from. This gland atrophies very early on in life and normally doesn't show up on scans). I strongly beleive that is why I have been blessed with the "creepy crawly" form of slow moving, minimal tumor burden disease.
I strongly feel I will have a durable remission and die from doing something stupid, heart DZ, or plain ole old age.
Take care,
Kim
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- February 20, 2013 at 2:16 am
Hi Dian,
I did 5 separate weeks at Yale New Haven nov/dec 2011
I took every single bag they threw at me. Before each bag they would ask me to count backwards by 6’s. math never was my strong point, so I had a cheat-sheet. Of course the head of the whole dept caught me!
I was applying Aldera to my cutaneous nets and zapped them to hell. Unfortunately I stopped responding after a few months. As others have said, it’s hard but do-able.
If my onc told me it would help, I’d do it again in a heartbeat.
Hope this helps, Dian.
Hugs,
Karen -
- February 20, 2013 at 2:16 am
Hi Dian,
I did 5 separate weeks at Yale New Haven nov/dec 2011
I took every single bag they threw at me. Before each bag they would ask me to count backwards by 6’s. math never was my strong point, so I had a cheat-sheet. Of course the head of the whole dept caught me!
I was applying Aldera to my cutaneous nets and zapped them to hell. Unfortunately I stopped responding after a few months. As others have said, it’s hard but do-able.
If my onc told me it would help, I’d do it again in a heartbeat.
Hope this helps, Dian.
Hugs,
Karen -
- February 20, 2013 at 2:16 am
Hi Dian,
I did 5 separate weeks at Yale New Haven nov/dec 2011
I took every single bag they threw at me. Before each bag they would ask me to count backwards by 6’s. math never was my strong point, so I had a cheat-sheet. Of course the head of the whole dept caught me!
I was applying Aldera to my cutaneous nets and zapped them to hell. Unfortunately I stopped responding after a few months. As others have said, it’s hard but do-able.
If my onc told me it would help, I’d do it again in a heartbeat.
Hope this helps, Dian.
Hugs,
Karen
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- February 20, 2013 at 2:24 am
What you will have to decide is how honest you want to be with yourself for a way forward. to help.
None of us can do that for you.; I will however be glad to help.
Charlie S
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- February 20, 2013 at 4:08 pm
well… you can help me by interpreting that remark Charlie!! I am scrupulously honest with myself, and I'm not at all sure it's helping me!
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- February 20, 2013 at 4:08 pm
well… you can help me by interpreting that remark Charlie!! I am scrupulously honest with myself, and I'm not at all sure it's helping me!
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- February 20, 2013 at 4:08 pm
well… you can help me by interpreting that remark Charlie!! I am scrupulously honest with myself, and I'm not at all sure it's helping me!
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- February 20, 2013 at 3:48 am
I did 3 rounds in 1992 at NIH. No TILs because my culture failed(the early days of TILs). Complete responder and NED ever since for now over 20 years.
Back then I would have done anything, and I suppose now I'd say the same, but I'm quite thankful I haven't had to.
Best wishes to you,
Rick in NC
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- February 20, 2013 at 3:48 am
I did 3 rounds in 1992 at NIH. No TILs because my culture failed(the early days of TILs). Complete responder and NED ever since for now over 20 years.
Back then I would have done anything, and I suppose now I'd say the same, but I'm quite thankful I haven't had to.
Best wishes to you,
Rick in NC
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- February 20, 2013 at 3:48 am
I did 3 rounds in 1992 at NIH. No TILs because my culture failed(the early days of TILs). Complete responder and NED ever since for now over 20 years.
Back then I would have done anything, and I suppose now I'd say the same, but I'm quite thankful I haven't had to.
Best wishes to you,
Rick in NC
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- February 23, 2013 at 7:38 am
Ga, you know my view, but I'll repeat it here for others that find this post. Definitely would do it again even though I was a partial responder for 20 months before the IL-2 stopped holding me stable. Believe that Jane's info sheet (that I emailed you the URL for) helped greatly.
I have read that the researchers consider that if one reaches the ten year NED point after IL-2 that they are considered "cured".
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- February 23, 2013 at 7:38 am
Ga, you know my view, but I'll repeat it here for others that find this post. Definitely would do it again even though I was a partial responder for 20 months before the IL-2 stopped holding me stable. Believe that Jane's info sheet (that I emailed you the URL for) helped greatly.
I have read that the researchers consider that if one reaches the ten year NED point after IL-2 that they are considered "cured".
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- February 23, 2013 at 7:38 am
Ga, you know my view, but I'll repeat it here for others that find this post. Definitely would do it again even though I was a partial responder for 20 months before the IL-2 stopped holding me stable. Believe that Jane's info sheet (that I emailed you the URL for) helped greatly.
I have read that the researchers consider that if one reaches the ten year NED point after IL-2 that they are considered "cured".
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- February 23, 2013 at 8:48 pm
Hi Dian
I did IL2 a little over a year ago and have been stable since (numerous lung nodules both sides under 1 cm). No TIL. I would do it again. It was hard but doable.
My onc (Dr, Dutcher in NYC who I think has done more IL2 than anyone) said that those who have initial sucess have a decent chance of repeated sucess with reinduction. I would like to know if anyone else has been told that.
Steven
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- February 23, 2013 at 8:48 pm
Hi Dian
I did IL2 a little over a year ago and have been stable since (numerous lung nodules both sides under 1 cm). No TIL. I would do it again. It was hard but doable.
My onc (Dr, Dutcher in NYC who I think has done more IL2 than anyone) said that those who have initial sucess have a decent chance of repeated sucess with reinduction. I would like to know if anyone else has been told that.
Steven
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- February 23, 2013 at 8:48 pm
Hi Dian
I did IL2 a little over a year ago and have been stable since (numerous lung nodules both sides under 1 cm). No TIL. I would do it again. It was hard but doable.
My onc (Dr, Dutcher in NYC who I think has done more IL2 than anyone) said that those who have initial sucess have a decent chance of repeated sucess with reinduction. I would like to know if anyone else has been told that.
Steven
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- February 26, 2013 at 12:21 am
Dian,
I saw on another post that you are headed to see Dr. Thompson – I hear he is great but have not met him.
I did High Dose IL-2 at UW in july of 2011 – it was difficult but the team and nurses are great at getting people through it. I have many tips if you are interested.
I didn't really respond to HD IL-2 and moved on to other treatments. Your question as to whether or not to do it with TIL or not with TIL basically is comparing 2 very different treatments and in the case of SCCA 3 different treatments – all of which I have done.
The standard TIL treatment is offered at NIH, Moffitt (I think they are still doing it) and MDA. The treatment is the TIL cell infusion. The IL-2 after the TIL cell infusion is not for "treatment's sake" it is, basically, to improve the lifespan of the TIL cells that have been re-introduced into your body. They use IL-2 post infusion because that is what the TIL cells are grown and expanded in, in the lab. So they think that by following the infusion with a course of IL-2 keeps those cells happy and activated.
Another treatment/trial offered at SCCA uses at lymphocyte infusion – targeted to melanoma in conjunction with low dose IL-2 and in combination with ipi. I did this and 6 weeks after my last ipi dose didn't seem to be responding so my oncologist suggested I try standard TIL therapy which I did at NIH.
Hopefully this helps. Good luck with your appt. Please don't hesitate to contact me if I can help – I'm here in Seattle.
Best, Troy
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- February 26, 2013 at 12:21 am
Dian,
I saw on another post that you are headed to see Dr. Thompson – I hear he is great but have not met him.
I did High Dose IL-2 at UW in july of 2011 – it was difficult but the team and nurses are great at getting people through it. I have many tips if you are interested.
I didn't really respond to HD IL-2 and moved on to other treatments. Your question as to whether or not to do it with TIL or not with TIL basically is comparing 2 very different treatments and in the case of SCCA 3 different treatments – all of which I have done.
The standard TIL treatment is offered at NIH, Moffitt (I think they are still doing it) and MDA. The treatment is the TIL cell infusion. The IL-2 after the TIL cell infusion is not for "treatment's sake" it is, basically, to improve the lifespan of the TIL cells that have been re-introduced into your body. They use IL-2 post infusion because that is what the TIL cells are grown and expanded in, in the lab. So they think that by following the infusion with a course of IL-2 keeps those cells happy and activated.
Another treatment/trial offered at SCCA uses at lymphocyte infusion – targeted to melanoma in conjunction with low dose IL-2 and in combination with ipi. I did this and 6 weeks after my last ipi dose didn't seem to be responding so my oncologist suggested I try standard TIL therapy which I did at NIH.
Hopefully this helps. Good luck with your appt. Please don't hesitate to contact me if I can help – I'm here in Seattle.
Best, Troy
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- March 1, 2013 at 1:18 am
Hello Mr. Troy
we share the great Dr. Margolin / and I have sent you private message
if you send me one I'm not sure I would know how to pick it up so responding using my telephone # I gave you is preferable
thanks. john
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- March 1, 2013 at 1:18 am
Hello Mr. Troy
we share the great Dr. Margolin / and I have sent you private message
if you send me one I'm not sure I would know how to pick it up so responding using my telephone # I gave you is preferable
thanks. john
-
- March 1, 2013 at 1:18 am
Hello Mr. Troy
we share the great Dr. Margolin / and I have sent you private message
if you send me one I'm not sure I would know how to pick it up so responding using my telephone # I gave you is preferable
thanks. john
-
- February 26, 2013 at 12:21 am
Dian,
I saw on another post that you are headed to see Dr. Thompson – I hear he is great but have not met him.
I did High Dose IL-2 at UW in july of 2011 – it was difficult but the team and nurses are great at getting people through it. I have many tips if you are interested.
I didn't really respond to HD IL-2 and moved on to other treatments. Your question as to whether or not to do it with TIL or not with TIL basically is comparing 2 very different treatments and in the case of SCCA 3 different treatments – all of which I have done.
The standard TIL treatment is offered at NIH, Moffitt (I think they are still doing it) and MDA. The treatment is the TIL cell infusion. The IL-2 after the TIL cell infusion is not for "treatment's sake" it is, basically, to improve the lifespan of the TIL cells that have been re-introduced into your body. They use IL-2 post infusion because that is what the TIL cells are grown and expanded in, in the lab. So they think that by following the infusion with a course of IL-2 keeps those cells happy and activated.
Another treatment/trial offered at SCCA uses at lymphocyte infusion – targeted to melanoma in conjunction with low dose IL-2 and in combination with ipi. I did this and 6 weeks after my last ipi dose didn't seem to be responding so my oncologist suggested I try standard TIL therapy which I did at NIH.
Hopefully this helps. Good luck with your appt. Please don't hesitate to contact me if I can help – I'm here in Seattle.
Best, Troy
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