› Forums › General Melanoma Community › Limb Perfusion for Seeded/In-transit Melanoma Stage III C
- This topic has 24 replies, 6 voices, and was last updated 9 years, 9 months ago by
Vermont_Donna.
- Post
-
- November 8, 2014 at 10:47 pm
My mother has seen her melanoma seed to the surface of her skin over the past five months. The tumors are localized to the original limb (leg), but are quite painful. The lymphoma she experiences does not help the pain she is in. She is a candidate for a procedure called a limb perfusion, which cuts off circulation to the limb and infuses it with chemotherapy drugs directly. This includes removing remaining lymph nodes. It is apparenlty a considerable operation to recover from but has the potential to cause the seeded tumors to recede for an average of 10 months.
If anyone has experience with this procedure or caring for a loved one with seeded melanoma I would be very grateful to know. We are very concerned with how to reduce her pain.
- Replies
-
-
- November 9, 2014 at 4:48 pm
Hello Daughter,
I do not have any real help to give you, but didn't want you to think we were all ignoring your request. In-transit mel (if that is the diagnosis your mom is dealing with) occurs in only about 10% of melanoma patients so there are fewer of us with experience to offer you. Several locations do provide limb profusion therapy with pretty good results. I looked for a report I once posted for someone else, but can't find it just now. I realize I am not giving you the information you seek, but wanted you to know that I am sorry that you and your mom are dealing with this and I wish you both my best. Celeste
-
- November 9, 2014 at 4:48 pm
Hello Daughter,
I do not have any real help to give you, but didn't want you to think we were all ignoring your request. In-transit mel (if that is the diagnosis your mom is dealing with) occurs in only about 10% of melanoma patients so there are fewer of us with experience to offer you. Several locations do provide limb profusion therapy with pretty good results. I looked for a report I once posted for someone else, but can't find it just now. I realize I am not giving you the information you seek, but wanted you to know that I am sorry that you and your mom are dealing with this and I wish you both my best. Celeste
-
- November 14, 2014 at 6:50 pm
Celeste, many thanks for your input and your warm wishes. Yes, there is a good response rate with isolated limb perfusion, but it can't promise a full remission like some immunotherapies. It could give my mom some comfort, so it is just a matter of weighing the pros & cons of the invasive procedure. Seems like she may decide to do it.
Wishing you so much health and happiness,
Lee
-
- November 14, 2014 at 6:50 pm
Celeste, many thanks for your input and your warm wishes. Yes, there is a good response rate with isolated limb perfusion, but it can't promise a full remission like some immunotherapies. It could give my mom some comfort, so it is just a matter of weighing the pros & cons of the invasive procedure. Seems like she may decide to do it.
Wishing you so much health and happiness,
Lee
-
- November 14, 2014 at 6:50 pm
Celeste, many thanks for your input and your warm wishes. Yes, there is a good response rate with isolated limb perfusion, but it can't promise a full remission like some immunotherapies. It could give my mom some comfort, so it is just a matter of weighing the pros & cons of the invasive procedure. Seems like she may decide to do it.
Wishing you so much health and happiness,
Lee
-
- November 9, 2014 at 4:48 pm
Hello Daughter,
I do not have any real help to give you, but didn't want you to think we were all ignoring your request. In-transit mel (if that is the diagnosis your mom is dealing with) occurs in only about 10% of melanoma patients so there are fewer of us with experience to offer you. Several locations do provide limb profusion therapy with pretty good results. I looked for a report I once posted for someone else, but can't find it just now. I realize I am not giving you the information you seek, but wanted you to know that I am sorry that you and your mom are dealing with this and I wish you both my best. Celeste
-
- November 9, 2014 at 6:42 pm
Daughter,
Sorry your family is having to go through this. Like Celeste, I'm not too familiar with the limb perfusion. I just wanted to ask if your mom is being seen by a melanoma expert? If I understand her case correctly she had a primary on her leg which had some lymph node involvement and removal of some lymph nodes. Now the melanoma is spreading on the skin on the same leg. I'm wondering if your mom would be eligible for a treatment like Ipi at this point. I'm not saying instead of the limb perfusion but maybe in addition to the limb perfusion.
-
- November 9, 2014 at 6:42 pm
Daughter,
Sorry your family is having to go through this. Like Celeste, I'm not too familiar with the limb perfusion. I just wanted to ask if your mom is being seen by a melanoma expert? If I understand her case correctly she had a primary on her leg which had some lymph node involvement and removal of some lymph nodes. Now the melanoma is spreading on the skin on the same leg. I'm wondering if your mom would be eligible for a treatment like Ipi at this point. I'm not saying instead of the limb perfusion but maybe in addition to the limb perfusion.
-
- November 9, 2014 at 6:42 pm
Daughter,
Sorry your family is having to go through this. Like Celeste, I'm not too familiar with the limb perfusion. I just wanted to ask if your mom is being seen by a melanoma expert? If I understand her case correctly she had a primary on her leg which had some lymph node involvement and removal of some lymph nodes. Now the melanoma is spreading on the skin on the same leg. I'm wondering if your mom would be eligible for a treatment like Ipi at this point. I'm not saying instead of the limb perfusion but maybe in addition to the limb perfusion.
-
- November 10, 2014 at 6:37 pm
Hi!
I have had seeded localized intransits and they are a pain! I'm sorry your mom's going through this!
I have an amazing Rock Star Melanoma doctor and when we talked about this (ILP vs IPI) our thinking was that melanoma was systematic, and dealing with it from a systematic stand point would be a better way to go. I was also told that ILP was a difficult surgery to recover from. So rather than doing isolated limb perfusion (ILP) I chose to go with an immunotheraphy called Yervoy (IPI).
Ipi was not a walk in the park, (but it was considerably easier than interferon). I was tired, had headaches and arthritis like symptoms, but through the treatment I watched my tumors melt away. And this was amazing. While not calling me cured, My Rock Star Doc tells me that he's never seen anyone recur after 2 years of no evidence of disease (NED). I'm one year out with one to go to hit this mark. So far so good.
I'm almost a year out now from the treatment, but I'm feeling like my ol' self again. I am so grateful!
Much has changed in the past few years in the treatment of Mel. So much so that I'd bet real money that the folks here on this board know more about the details and treatment of Mel than a general oncologist working at a teaching hospital. This is why it's important to make sure your mom is being seen by a melanoma specialist If you need recommendations for a second opinion post your location here and ask.
Praying for wisdom and pain relief for you and your mom.
Blessings,
Julie
Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI = NERD
-
- November 14, 2014 at 6:39 pm
Thank you, Julie! It is a comfort to remember that different people respond to different therapies and we can remain optomistic until we find one that works for my mom. I just posted a little more of her treatment history above.
It's true that folks here have an incredible body of knowledge about mel treatments. Amazing.
Keeping your health and happiness in my thoughts & prayers,
Lee
-
- November 14, 2014 at 6:39 pm
Thank you, Julie! It is a comfort to remember that different people respond to different therapies and we can remain optomistic until we find one that works for my mom. I just posted a little more of her treatment history above.
It's true that folks here have an incredible body of knowledge about mel treatments. Amazing.
Keeping your health and happiness in my thoughts & prayers,
Lee
-
- November 14, 2014 at 6:39 pm
Thank you, Julie! It is a comfort to remember that different people respond to different therapies and we can remain optomistic until we find one that works for my mom. I just posted a little more of her treatment history above.
It's true that folks here have an incredible body of knowledge about mel treatments. Amazing.
Keeping your health and happiness in my thoughts & prayers,
Lee
-
- November 10, 2014 at 6:37 pm
Hi!
I have had seeded localized intransits and they are a pain! I'm sorry your mom's going through this!
I have an amazing Rock Star Melanoma doctor and when we talked about this (ILP vs IPI) our thinking was that melanoma was systematic, and dealing with it from a systematic stand point would be a better way to go. I was also told that ILP was a difficult surgery to recover from. So rather than doing isolated limb perfusion (ILP) I chose to go with an immunotheraphy called Yervoy (IPI).
Ipi was not a walk in the park, (but it was considerably easier than interferon). I was tired, had headaches and arthritis like symptoms, but through the treatment I watched my tumors melt away. And this was amazing. While not calling me cured, My Rock Star Doc tells me that he's never seen anyone recur after 2 years of no evidence of disease (NED). I'm one year out with one to go to hit this mark. So far so good.
I'm almost a year out now from the treatment, but I'm feeling like my ol' self again. I am so grateful!
Much has changed in the past few years in the treatment of Mel. So much so that I'd bet real money that the folks here on this board know more about the details and treatment of Mel than a general oncologist working at a teaching hospital. This is why it's important to make sure your mom is being seen by a melanoma specialist If you need recommendations for a second opinion post your location here and ask.
Praying for wisdom and pain relief for you and your mom.
Blessings,
Julie
Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI = NERD
-
- November 10, 2014 at 6:37 pm
Hi!
I have had seeded localized intransits and they are a pain! I'm sorry your mom's going through this!
I have an amazing Rock Star Melanoma doctor and when we talked about this (ILP vs IPI) our thinking was that melanoma was systematic, and dealing with it from a systematic stand point would be a better way to go. I was also told that ILP was a difficult surgery to recover from. So rather than doing isolated limb perfusion (ILP) I chose to go with an immunotheraphy called Yervoy (IPI).
Ipi was not a walk in the park, (but it was considerably easier than interferon). I was tired, had headaches and arthritis like symptoms, but through the treatment I watched my tumors melt away. And this was amazing. While not calling me cured, My Rock Star Doc tells me that he's never seen anyone recur after 2 years of no evidence of disease (NED). I'm one year out with one to go to hit this mark. So far so good.
I'm almost a year out now from the treatment, but I'm feeling like my ol' self again. I am so grateful!
Much has changed in the past few years in the treatment of Mel. So much so that I'd bet real money that the folks here on this board know more about the details and treatment of Mel than a general oncologist working at a teaching hospital. This is why it's important to make sure your mom is being seen by a melanoma specialist If you need recommendations for a second opinion post your location here and ask.
Praying for wisdom and pain relief for you and your mom.
Blessings,
Julie
Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI = NERD
-
- November 14, 2014 at 6:31 pm
Thank you so much for your responses!! I am touched and amazed by such a generous and empathic community here!
Yes, seeded or intransit melanoma is not very common. My mother is seeing a melanoma specialist, Dr. Tara Gangadhar at Univ. of Pennsylvania's Abramson Cancer Center. But since intransit is so rare it seems like no one is quite sure of how to best treat this manifestation. Are there melanoma specialists who deal specifically with this type?
My mom has been on Interferon, Ipilimumab (Yervoy), Vemurafenib (Zelboraf), and now Anti-PD-1. Unfortunately she had a toxic response to Yervoy. So far no negative side effects on PD-1 inhibitor!
The isolated limb perfusion seems like it may be our only option right now to reduce the tumors on her leg to bring her greater comfort. ILP does have a generally good response rate (close to 80%) though is only expected to last for 10 months and requires a difficult recovery. It is a very hard decision to make.
We live near Philadelphia, Pennsylvania. Any recommendations for specialists that might know more specifically about the intransit melanoma would be appreciated.
Thank you so much.
Warm wishes to all in their fight,
Lee
-
- November 14, 2014 at 6:31 pm
Thank you so much for your responses!! I am touched and amazed by such a generous and empathic community here!
Yes, seeded or intransit melanoma is not very common. My mother is seeing a melanoma specialist, Dr. Tara Gangadhar at Univ. of Pennsylvania's Abramson Cancer Center. But since intransit is so rare it seems like no one is quite sure of how to best treat this manifestation. Are there melanoma specialists who deal specifically with this type?
My mom has been on Interferon, Ipilimumab (Yervoy), Vemurafenib (Zelboraf), and now Anti-PD-1. Unfortunately she had a toxic response to Yervoy. So far no negative side effects on PD-1 inhibitor!
The isolated limb perfusion seems like it may be our only option right now to reduce the tumors on her leg to bring her greater comfort. ILP does have a generally good response rate (close to 80%) though is only expected to last for 10 months and requires a difficult recovery. It is a very hard decision to make.
We live near Philadelphia, Pennsylvania. Any recommendations for specialists that might know more specifically about the intransit melanoma would be appreciated.
Thank you so much.
Warm wishes to all in their fight,
Lee
-
- November 14, 2014 at 6:31 pm
Thank you so much for your responses!! I am touched and amazed by such a generous and empathic community here!
Yes, seeded or intransit melanoma is not very common. My mother is seeing a melanoma specialist, Dr. Tara Gangadhar at Univ. of Pennsylvania's Abramson Cancer Center. But since intransit is so rare it seems like no one is quite sure of how to best treat this manifestation. Are there melanoma specialists who deal specifically with this type?
My mom has been on Interferon, Ipilimumab (Yervoy), Vemurafenib (Zelboraf), and now Anti-PD-1. Unfortunately she had a toxic response to Yervoy. So far no negative side effects on PD-1 inhibitor!
The isolated limb perfusion seems like it may be our only option right now to reduce the tumors on her leg to bring her greater comfort. ILP does have a generally good response rate (close to 80%) though is only expected to last for 10 months and requires a difficult recovery. It is a very hard decision to make.
We live near Philadelphia, Pennsylvania. Any recommendations for specialists that might know more specifically about the intransit melanoma would be appreciated.
Thank you so much.
Warm wishes to all in their fight,
Lee
-
- November 23, 2014 at 2:29 pm
Hi,
I had an isolated limb perfusion at Mass General in 2009. The doctor who performed the procedure (5 hours in OR), and four days in the hospital, said there is an 85% effectiveness rate. I however was in that 15% that experienced a recurrence about 11 months later. I then did yervoy in a clinical trial which I am still NED from. You can look at posts I've written here in the past about the ILP, through either my profile name here or key words in the search feature on MPIP.
Sorry about your mom having to deal with this, and you as her caregiver too.
Vermont_Donna
-
- November 23, 2014 at 2:29 pm
Hi,
I had an isolated limb perfusion at Mass General in 2009. The doctor who performed the procedure (5 hours in OR), and four days in the hospital, said there is an 85% effectiveness rate. I however was in that 15% that experienced a recurrence about 11 months later. I then did yervoy in a clinical trial which I am still NED from. You can look at posts I've written here in the past about the ILP, through either my profile name here or key words in the search feature on MPIP.
Sorry about your mom having to deal with this, and you as her caregiver too.
Vermont_Donna
-
- November 23, 2014 at 2:29 pm
Hi,
I had an isolated limb perfusion at Mass General in 2009. The doctor who performed the procedure (5 hours in OR), and four days in the hospital, said there is an 85% effectiveness rate. I however was in that 15% that experienced a recurrence about 11 months later. I then did yervoy in a clinical trial which I am still NED from. You can look at posts I've written here in the past about the ILP, through either my profile name here or key words in the search feature on MPIP.
Sorry about your mom having to deal with this, and you as her caregiver too.
Vermont_Donna
-
- You must be logged in to reply to this topic.