› Forums › General Melanoma Community › Isolated Limb Infusion
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momreader.
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- October 3, 2012 at 2:14 am
My father has melanoma in 2 places in his right leg. It's in his lower leg and upper leg/thigh area. He has already had a clinical trial (ipi plus mdx1106) which was a disaster for him, plus he had chemotherapy which hasn't worked. Now they want to do an isolated limb infusion. (Not perfusion). Does anyone have any experience with this? What are the side effects? What is the recovery like? Does it affect ambulation? Does it have good results and how long do they last?
My father has melanoma in 2 places in his right leg. It's in his lower leg and upper leg/thigh area. He has already had a clinical trial (ipi plus mdx1106) which was a disaster for him, plus he had chemotherapy which hasn't worked. Now they want to do an isolated limb infusion. (Not perfusion). Does anyone have any experience with this? What are the side effects? What is the recovery like? Does it affect ambulation? Does it have good results and how long do they last? Does anyone know the difference b/w isolated limb infusion/perfusion b/c his doctor (Sloane Kettering) said they only do ILI at Sloane. We are nervous and any information would be greatly appreciated. Thanks so much.
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- October 5, 2012 at 5:27 am
I remember hearing that ILI was a far less nasty treatment that ILP and had about the same results. So, I think this is porbably the best route.
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- October 5, 2012 at 9:28 am
Hi,
I've read up extensively on both and had the ILP, at Mass General in Boston 3 years ago. The stats are that the ILP is roughly coonsidered to have an 85% "cure" rate. I dont know what the ILI rate is. I know MD Anderson does the Ili and several other places. There are similar procedures but different of course. the ILI is a less complex procedure…maybe that is a good way to say it. I am sure you can find info to read and MD's to talk to about each.
You can look back at any of my posts about the ILP under Vermont_Donna..I hd mine in September 2009. My cancer (in my right leg) re-occured about 10 months later or so if I remember right. Yervoy is what has kept me NED 19 monhts. We were serioulsy discussing leg amputation. You can message me directly if you would like to give me your phone number and we can chat.
Vermont_Donna, stage 3a, NED
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- October 22, 2012 at 8:10 pm
Thank you. I looked at your other posts and I appreciate the information. Sloane doesn't do ILP, and my father has had such difficult reactions to treatment, that we wan't to start with the less intensive treatment of the 2. My father unfortunately can't take Yervoy b/c he had it as part of a clinical trial at the start of his melanoma treatment and it didn't work in a big way and caused major issues – kidney, thyroid, etc. although it could have been the mdx1106 he took with the yervoy – we'll never know. But I doubt they would every give it to him again, although I really want him to have some type of systemic treatment after the ILI. Thanks again for your help, I appreciate it, and good luch with your treatments! So glad you have had a good response to it.
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- October 22, 2012 at 8:10 pm
Thank you. I looked at your other posts and I appreciate the information. Sloane doesn't do ILP, and my father has had such difficult reactions to treatment, that we wan't to start with the less intensive treatment of the 2. My father unfortunately can't take Yervoy b/c he had it as part of a clinical trial at the start of his melanoma treatment and it didn't work in a big way and caused major issues – kidney, thyroid, etc. although it could have been the mdx1106 he took with the yervoy – we'll never know. But I doubt they would every give it to him again, although I really want him to have some type of systemic treatment after the ILI. Thanks again for your help, I appreciate it, and good luch with your treatments! So glad you have had a good response to it.
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- October 22, 2012 at 8:10 pm
Thank you. I looked at your other posts and I appreciate the information. Sloane doesn't do ILP, and my father has had such difficult reactions to treatment, that we wan't to start with the less intensive treatment of the 2. My father unfortunately can't take Yervoy b/c he had it as part of a clinical trial at the start of his melanoma treatment and it didn't work in a big way and caused major issues – kidney, thyroid, etc. although it could have been the mdx1106 he took with the yervoy – we'll never know. But I doubt they would every give it to him again, although I really want him to have some type of systemic treatment after the ILI. Thanks again for your help, I appreciate it, and good luch with your treatments! So glad you have had a good response to it.
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- October 22, 2012 at 8:10 pm
Thank you. I looked at your other posts and I appreciate the information. Sloane doesn't do ILP, and my father has had such difficult reactions to treatment, that we wan't to start with the less intensive treatment of the 2. My father unfortunately can't take Yervoy b/c he had it as part of a clinical trial at the start of his melanoma treatment and it didn't work in a big way and caused major issues – kidney, thyroid, etc. although it could have been the mdx1106 he took with the yervoy – we'll never know. But I doubt they would every give it to him again, although I really want him to have some type of systemic treatment after the ILI. Thanks again for your help, I appreciate it, and good luch with your treatments! So glad you have had a good response to it.
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- October 22, 2012 at 8:10 pm
Thank you. I looked at your other posts and I appreciate the information. Sloane doesn't do ILP, and my father has had such difficult reactions to treatment, that we wan't to start with the less intensive treatment of the 2. My father unfortunately can't take Yervoy b/c he had it as part of a clinical trial at the start of his melanoma treatment and it didn't work in a big way and caused major issues – kidney, thyroid, etc. although it could have been the mdx1106 he took with the yervoy – we'll never know. But I doubt they would every give it to him again, although I really want him to have some type of systemic treatment after the ILI. Thanks again for your help, I appreciate it, and good luch with your treatments! So glad you have had a good response to it.
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- October 22, 2012 at 8:10 pm
Thank you. I looked at your other posts and I appreciate the information. Sloane doesn't do ILP, and my father has had such difficult reactions to treatment, that we wan't to start with the less intensive treatment of the 2. My father unfortunately can't take Yervoy b/c he had it as part of a clinical trial at the start of his melanoma treatment and it didn't work in a big way and caused major issues – kidney, thyroid, etc. although it could have been the mdx1106 he took with the yervoy – we'll never know. But I doubt they would every give it to him again, although I really want him to have some type of systemic treatment after the ILI. Thanks again for your help, I appreciate it, and good luch with your treatments! So glad you have had a good response to it.
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- October 5, 2012 at 9:28 am
Hi,
I've read up extensively on both and had the ILP, at Mass General in Boston 3 years ago. The stats are that the ILP is roughly coonsidered to have an 85% "cure" rate. I dont know what the ILI rate is. I know MD Anderson does the Ili and several other places. There are similar procedures but different of course. the ILI is a less complex procedure…maybe that is a good way to say it. I am sure you can find info to read and MD's to talk to about each.
You can look back at any of my posts about the ILP under Vermont_Donna..I hd mine in September 2009. My cancer (in my right leg) re-occured about 10 months later or so if I remember right. Yervoy is what has kept me NED 19 monhts. We were serioulsy discussing leg amputation. You can message me directly if you would like to give me your phone number and we can chat.
Vermont_Donna, stage 3a, NED
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- October 5, 2012 at 9:28 am
Hi,
I've read up extensively on both and had the ILP, at Mass General in Boston 3 years ago. The stats are that the ILP is roughly coonsidered to have an 85% "cure" rate. I dont know what the ILI rate is. I know MD Anderson does the Ili and several other places. There are similar procedures but different of course. the ILI is a less complex procedure…maybe that is a good way to say it. I am sure you can find info to read and MD's to talk to about each.
You can look back at any of my posts about the ILP under Vermont_Donna..I hd mine in September 2009. My cancer (in my right leg) re-occured about 10 months later or so if I remember right. Yervoy is what has kept me NED 19 monhts. We were serioulsy discussing leg amputation. You can message me directly if you would like to give me your phone number and we can chat.
Vermont_Donna, stage 3a, NED
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- October 20, 2012 at 11:41 pm
HI
My mom had an isolated limb infusion followed by ipi at Sloan several months ago. The actual limb infusion seemed to go well, and she is now treated with ipi every 3 months as part of the clinical trial. Unfortunately, for the past six weeks she has been very sick, and we are thinking it's because of the ipi. She is extremely tired, has no appetite (lost about 14 pounds in a short time, has pain in her joints, is very pale, and cannot do much of anything. She is scheduled for her third maintenance round of ipi this week, but I doubt they will continue. What happened when your dad was on the ipi plus mdx 1106 trial, as you mentioned it was a disaster? Do you think it was the ipi, or something else? If you have specific questions about our experience let me know.
Warm Regards,
Roni
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- October 22, 2012 at 8:17 pm
Can I ask if Dr. Ariyan did the surgery? My father is probably going to have ILI in the next week or 2 with Dr. Ariyan. It is complicated b/c he has swelling so there is risk for amputation, but there aren't too many other options and he has 2 tumors in his leg. The yervoy didn't work for my father but he took it together with mdx1106, so we don't know if it was the ipi or the mdx1106 or the combination of both. Many people have been helped by Yervoy in keeping the melanoma at bay. Unfortunately it didn't work for him and he had serious thyroid issues as well as Kidney. His creatinine has been affected and he can't even qualify for other treatments because of it, it has really been a rough ride. But I'm sure the doctors are monitoring and they will d/c it if they need to. However, if it is just exhaustion, I hear that is normal with ipi. I would really check the labs, though, b/c if she is having a reaction, you want to stop it before the damage is permanent.
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- October 22, 2012 at 8:17 pm
Can I ask if Dr. Ariyan did the surgery? My father is probably going to have ILI in the next week or 2 with Dr. Ariyan. It is complicated b/c he has swelling so there is risk for amputation, but there aren't too many other options and he has 2 tumors in his leg. The yervoy didn't work for my father but he took it together with mdx1106, so we don't know if it was the ipi or the mdx1106 or the combination of both. Many people have been helped by Yervoy in keeping the melanoma at bay. Unfortunately it didn't work for him and he had serious thyroid issues as well as Kidney. His creatinine has been affected and he can't even qualify for other treatments because of it, it has really been a rough ride. But I'm sure the doctors are monitoring and they will d/c it if they need to. However, if it is just exhaustion, I hear that is normal with ipi. I would really check the labs, though, b/c if she is having a reaction, you want to stop it before the damage is permanent.
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- October 22, 2012 at 8:17 pm
Can I ask if Dr. Ariyan did the surgery? My father is probably going to have ILI in the next week or 2 with Dr. Ariyan. It is complicated b/c he has swelling so there is risk for amputation, but there aren't too many other options and he has 2 tumors in his leg. The yervoy didn't work for my father but he took it together with mdx1106, so we don't know if it was the ipi or the mdx1106 or the combination of both. Many people have been helped by Yervoy in keeping the melanoma at bay. Unfortunately it didn't work for him and he had serious thyroid issues as well as Kidney. His creatinine has been affected and he can't even qualify for other treatments because of it, it has really been a rough ride. But I'm sure the doctors are monitoring and they will d/c it if they need to. However, if it is just exhaustion, I hear that is normal with ipi. I would really check the labs, though, b/c if she is having a reaction, you want to stop it before the damage is permanent.
-
- October 20, 2012 at 11:41 pm
HI
My mom had an isolated limb infusion followed by ipi at Sloan several months ago. The actual limb infusion seemed to go well, and she is now treated with ipi every 3 months as part of the clinical trial. Unfortunately, for the past six weeks she has been very sick, and we are thinking it's because of the ipi. She is extremely tired, has no appetite (lost about 14 pounds in a short time, has pain in her joints, is very pale, and cannot do much of anything. She is scheduled for her third maintenance round of ipi this week, but I doubt they will continue. What happened when your dad was on the ipi plus mdx 1106 trial, as you mentioned it was a disaster? Do you think it was the ipi, or something else? If you have specific questions about our experience let me know.
Warm Regards,
Roni
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- October 20, 2012 at 11:41 pm
HI
My mom had an isolated limb infusion followed by ipi at Sloan several months ago. The actual limb infusion seemed to go well, and she is now treated with ipi every 3 months as part of the clinical trial. Unfortunately, for the past six weeks she has been very sick, and we are thinking it's because of the ipi. She is extremely tired, has no appetite (lost about 14 pounds in a short time, has pain in her joints, is very pale, and cannot do much of anything. She is scheduled for her third maintenance round of ipi this week, but I doubt they will continue. What happened when your dad was on the ipi plus mdx 1106 trial, as you mentioned it was a disaster? Do you think it was the ipi, or something else? If you have specific questions about our experience let me know.
Warm Regards,
Roni
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