› Forums › General Melanoma Community › Whole Leg Perfusion
- This topic has 27 replies, 7 voices, and was last updated 13 years, 3 months ago by
Melanoma Warrior.
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- August 15, 2012 at 11:15 am
Has anyone done whole leg perfusion? Can anyone recommend a teaching facility in the NE that has had success with this? My husband has Stage 3C melanoma, started with the 4th toe with two recurrences over the past year on the lower leg. Thanks for any information.
Has anyone done whole leg perfusion? Can anyone recommend a teaching facility in the NE that has had success with this? My husband has Stage 3C melanoma, started with the 4th toe with two recurrences over the past year on the lower leg. Thanks for any information.
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- August 15, 2012 at 1:54 pm
They talked about it with me – same stage as your husband with more re-ocurrences than I care to count. I'm seeing good docs here in So Cal but they said if I opted for it I'd have to go to MD Anderson.
David
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- August 15, 2012 at 7:37 pm
Hi Amy, doing okay. Still have the occasional mel appear but always in the same general area (left ankle). Had an eight month period where none came back which really got my hopes up, but then 2 came back last month. Still using the DPCP on a weekly basis.
To the original poster, my docs really scared me off the perfusion. Possible loss of leg, etc. Not something I would have done unless it was my only option. Don't know if DPCP would work in your case or not. Here's some info on DPCP:
I'm not in that trial (I'm in California) but one of my docs had attended a symposium in Austrailia and suggested we give it a try on our own.
Thanks for asking!
Dave
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- August 15, 2012 at 7:37 pm
Hi Amy, doing okay. Still have the occasional mel appear but always in the same general area (left ankle). Had an eight month period where none came back which really got my hopes up, but then 2 came back last month. Still using the DPCP on a weekly basis.
To the original poster, my docs really scared me off the perfusion. Possible loss of leg, etc. Not something I would have done unless it was my only option. Don't know if DPCP would work in your case or not. Here's some info on DPCP:
I'm not in that trial (I'm in California) but one of my docs had attended a symposium in Austrailia and suggested we give it a try on our own.
Thanks for asking!
Dave
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- August 15, 2012 at 7:37 pm
Hi Amy, doing okay. Still have the occasional mel appear but always in the same general area (left ankle). Had an eight month period where none came back which really got my hopes up, but then 2 came back last month. Still using the DPCP on a weekly basis.
To the original poster, my docs really scared me off the perfusion. Possible loss of leg, etc. Not something I would have done unless it was my only option. Don't know if DPCP would work in your case or not. Here's some info on DPCP:
I'm not in that trial (I'm in California) but one of my docs had attended a symposium in Austrailia and suggested we give it a try on our own.
Thanks for asking!
Dave
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- August 15, 2012 at 10:13 pm
Dave,
Thanks for the information. My husband has lymphedema in the leg…so I was not sure if he would be a candidate. Will look into program at MD Anderson. I am interested in the topical cream you are using. Are your recurrences subcutaneous or at the skin surface? I appreciate your help.
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- August 16, 2012 at 1:45 pm
My recurrences have all been new mels on the skin surface, just like new, very small moles popping up. No subqs. I've already had a large chunk of the calf taken out – about 4 inches by inches – with skin graft, complete lymph node dissection but then they still came back but all local to the original site. Docs think we'll just treat it as a chronic condition and keep using the dpcp and slicing and dicing if they keep appearing.
Dave
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- August 16, 2012 at 1:45 pm
My recurrences have all been new mels on the skin surface, just like new, very small moles popping up. No subqs. I've already had a large chunk of the calf taken out – about 4 inches by inches – with skin graft, complete lymph node dissection but then they still came back but all local to the original site. Docs think we'll just treat it as a chronic condition and keep using the dpcp and slicing and dicing if they keep appearing.
Dave
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- August 16, 2012 at 1:45 pm
My recurrences have all been new mels on the skin surface, just like new, very small moles popping up. No subqs. I've already had a large chunk of the calf taken out – about 4 inches by inches – with skin graft, complete lymph node dissection but then they still came back but all local to the original site. Docs think we'll just treat it as a chronic condition and keep using the dpcp and slicing and dicing if they keep appearing.
Dave
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- August 15, 2012 at 10:13 pm
Dave,
Thanks for the information. My husband has lymphedema in the leg…so I was not sure if he would be a candidate. Will look into program at MD Anderson. I am interested in the topical cream you are using. Are your recurrences subcutaneous or at the skin surface? I appreciate your help.
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- August 15, 2012 at 10:13 pm
Dave,
Thanks for the information. My husband has lymphedema in the leg…so I was not sure if he would be a candidate. Will look into program at MD Anderson. I am interested in the topical cream you are using. Are your recurrences subcutaneous or at the skin surface? I appreciate your help.
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- August 15, 2012 at 3:37 pm
I'm quite certain that DonnaVT had this done at Mass General a couple of years ago. She is a frequent poster here and hopefully she will see this and be able to give you more information.
Stay Strong
King
Stage IV 7/05 Liver Mets
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- August 16, 2012 at 10:40 am
Thanks King…yes I did have an "Isloated Limb Perfusion" done in September 2009 at Mass General in Boston. I dont remember alot of the details so please look at my profile and also put Isolated limb perfusion in the search feature on this board and it will bring up any posts I or others have made. I have leg lymphadema now and I do think I had it before the ILP also. The procedure is about 85% effective, but for me, my melanoma re-occurred about 11 months later I believe. Yervoy is what I have done most recenly (18 months ago) and I am NED since then.
There is also an isolated limb INFUSION (ILI) that you can look into…..there are several hospitals that do either or both, yes MD Anderson is one, but others more local to NE as well. Your oncologist should be able to help you find out more and what places are doing these procedures.
Please contact me if you need any more assistance or have further questions.
Vermont_Donna, stage 3a, NED 18 months
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- August 16, 2012 at 10:40 am
Thanks King…yes I did have an "Isloated Limb Perfusion" done in September 2009 at Mass General in Boston. I dont remember alot of the details so please look at my profile and also put Isolated limb perfusion in the search feature on this board and it will bring up any posts I or others have made. I have leg lymphadema now and I do think I had it before the ILP also. The procedure is about 85% effective, but for me, my melanoma re-occurred about 11 months later I believe. Yervoy is what I have done most recenly (18 months ago) and I am NED since then.
There is also an isolated limb INFUSION (ILI) that you can look into…..there are several hospitals that do either or both, yes MD Anderson is one, but others more local to NE as well. Your oncologist should be able to help you find out more and what places are doing these procedures.
Please contact me if you need any more assistance or have further questions.
Vermont_Donna, stage 3a, NED 18 months
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- August 16, 2012 at 10:40 am
Thanks King…yes I did have an "Isloated Limb Perfusion" done in September 2009 at Mass General in Boston. I dont remember alot of the details so please look at my profile and also put Isolated limb perfusion in the search feature on this board and it will bring up any posts I or others have made. I have leg lymphadema now and I do think I had it before the ILP also. The procedure is about 85% effective, but for me, my melanoma re-occurred about 11 months later I believe. Yervoy is what I have done most recenly (18 months ago) and I am NED since then.
There is also an isolated limb INFUSION (ILI) that you can look into…..there are several hospitals that do either or both, yes MD Anderson is one, but others more local to NE as well. Your oncologist should be able to help you find out more and what places are doing these procedures.
Please contact me if you need any more assistance or have further questions.
Vermont_Donna, stage 3a, NED 18 months
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- August 16, 2012 at 12:04 am
Hi,We did look into leg perfusion for my dad when his in transit mets climb up all over his right calf but we decided against it. From what I know, it is a very complicated procedure with long recovery and only a few places can perform (MDAnderson in Houston). Dad is his 80s so we thought the surgery would be too much. Have you looked into other treatment options like Yervoy or Zeboralf or ckit inhibitor like Gleevac? My dad was also stage 3c and he did Yervoy and has partial response, some of his lesions have gotten better, others have gotten worse but it seems like it’s keeping new ones from going up higher on his leg and organs. I too looked into DPCP for him but his lesions were too many and too thick. I emailed a picture of dads leg to the trial doctor for DPCP and she told me he had too many lesions. You should email her, she is very kind and helpful.
Chau
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- August 16, 2012 at 12:04 am
Hi,We did look into leg perfusion for my dad when his in transit mets climb up all over his right calf but we decided against it. From what I know, it is a very complicated procedure with long recovery and only a few places can perform (MDAnderson in Houston). Dad is his 80s so we thought the surgery would be too much. Have you looked into other treatment options like Yervoy or Zeboralf or ckit inhibitor like Gleevac? My dad was also stage 3c and he did Yervoy and has partial response, some of his lesions have gotten better, others have gotten worse but it seems like it’s keeping new ones from going up higher on his leg and organs. I too looked into DPCP for him but his lesions were too many and too thick. I emailed a picture of dads leg to the trial doctor for DPCP and she told me he had too many lesions. You should email her, she is very kind and helpful.
Chau
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- August 16, 2012 at 12:04 am
Hi,We did look into leg perfusion for my dad when his in transit mets climb up all over his right calf but we decided against it. From what I know, it is a very complicated procedure with long recovery and only a few places can perform (MDAnderson in Houston). Dad is his 80s so we thought the surgery would be too much. Have you looked into other treatment options like Yervoy or Zeboralf or ckit inhibitor like Gleevac? My dad was also stage 3c and he did Yervoy and has partial response, some of his lesions have gotten better, others have gotten worse but it seems like it’s keeping new ones from going up higher on his leg and organs. I too looked into DPCP for him but his lesions were too many and too thick. I emailed a picture of dads leg to the trial doctor for DPCP and she told me he had too many lesions. You should email her, she is very kind and helpful.
Chau
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- August 19, 2012 at 3:40 pm
YES, I had a whole leg perfusion last April 15, 2011
To date presenting cancer free .. next check-up in October (6mos.)
Procedure was not easy… pretty barbaric
Was at California Pacific Medical San Francisco
San Francisco doctors were wonderful …
My Oncologist Dr. David Minor was very compasionate as was the rest of the team
The melanoma was on the bottom of my foot and spreading up my shin..
I was diagnosed with Stage 3B w/ massastisis
My dermatologist continuelly reminds me of how lucky I am to be alive..
Side affects : From not moving due to swelling my knee joint froze …. However I'm alive…
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- August 19, 2012 at 3:40 pm
YES, I had a whole leg perfusion last April 15, 2011
To date presenting cancer free .. next check-up in October (6mos.)
Procedure was not easy… pretty barbaric
Was at California Pacific Medical San Francisco
San Francisco doctors were wonderful …
My Oncologist Dr. David Minor was very compasionate as was the rest of the team
The melanoma was on the bottom of my foot and spreading up my shin..
I was diagnosed with Stage 3B w/ massastisis
My dermatologist continuelly reminds me of how lucky I am to be alive..
Side affects : From not moving due to swelling my knee joint froze …. However I'm alive…
-
- August 19, 2012 at 3:40 pm
YES, I had a whole leg perfusion last April 15, 2011
To date presenting cancer free .. next check-up in October (6mos.)
Procedure was not easy… pretty barbaric
Was at California Pacific Medical San Francisco
San Francisco doctors were wonderful …
My Oncologist Dr. David Minor was very compasionate as was the rest of the team
The melanoma was on the bottom of my foot and spreading up my shin..
I was diagnosed with Stage 3B w/ massastisis
My dermatologist continuelly reminds me of how lucky I am to be alive..
Side affects : From not moving due to swelling my knee joint froze …. However I'm alive…
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