› Forums › General Melanoma Community › To cut or not to cut…What would you do?
- This topic has 33 replies, 6 voices, and was last updated 9 years, 10 months ago by
vicuk.
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- June 16, 2014 at 12:33 pm
Hello. Have you faced this problem? I have stage IV, just diagnosed with 2 lung tumours – a 16mm on a lung lymph node and an 8mm lower in the lung lobe.
They're both theoretically resectable.
Here's the question – do I cut them out ( I LOVE cutting cancer out, it's my #1 favourite thing to do to it!) or embark on the Yervoy path and hope I'm one of the 30% who's tumours slow?
What if I have surgery and more tumours arise elsewhere? Aside from the primary site (conjunctiva) recurring like a mad thing, I also had two tumours in a paraspinal muscle – removed last month.
Ideas? Decision paths? Have you faced the same thing and how did you decide what to do?
Thanks X 1000.
- Replies
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- June 16, 2014 at 1:21 pm
Have you been offered or considered radiation therapy as an option, too? Perhaps CyberKnife or SBRT? There's a good discussion I was part of last week about SBRT and lung mets here:
I'm not implying that it is necessarily a better or worse option than those you are considering, only that maybe it's worth discussing with your doctors. I've had a mix of systemic immunotherapies, surgeries, and radiation therapy, and like you, think there's certainly peace of mind in "just cutting it out" and being done with a particular met. We've jokingly referred to my surgeries and radiation as "spot welding". I've been comfortable with this approach, using targeted, tactical treatments of surgery and radiation where appropriate and when tumor burden has been low, and reserving the "big gun" systemic treatments for when tumor burden is an issue or a particular met is unresectable. With my lung met, surgery was an option as it was relatively small (13-mm), accessible, and considered resectable. However, all surgeries come with risk, as you know, and my doctors felt that they could achieve compete local control of the tumor with radiation without causing damage to surrounding tissues or subjecting me to a more involved lung surgery. This see only in February, but my first scan since, in April, was already showing a good response. Having had that experience, and still not knowing for sure what the long term response will be, I'm thus far satisfied with that approach. So to answer your question, I'd choose radiation again, but am open to surgery, and would hold off on Yervoy or any other systemic treatment until such time as it's needed. I csn understand alternative points-of-view, e.g. "Why wait for systemic therapy and just try it ASAP?" but for me, this is the strategy we've followed. Best wishes!
Joe
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- June 17, 2014 at 5:25 am
Hello Joe – I love your thinking about being 'spot welded'! When I'm due for surgery, I call it 'having more embroidery done'!
Interesting point you raise – radiation hasn't been mentioned in the context of the lung tumours – it had previously been ruled out in relation to the conjunctival melanoma but of course – why wouldn't I be a good candidate for radiation or at least have that as an option for discussion? My problem is my oncologist – she's a melanoma specialist but her baby is immunotherapy. Sorry to say, but I have to fire her (mainly because at my results meeting she said 'Oh, did you know you have growth in your lung? I think that's right – I can't find my paperwork, I'll just go and see if I can find a copy' and left me there, agog and aghast for several minutes.)
If something's resectable, I prefer to take the pain rather than 14 weeks of Yervoy and not knowing if I'm one of the 30% for whom it works, especially when a 16mm growth wasn't there 12 weeks ago. I need more information from my surgeon about the likely difficulty PLUS I need to find a better oncologist who takes the time and care to go through all options with me. I'm kinda thinking the same as you Joe – Yervoy is there for when tumours aren't resectable. So, back to my drawing board, stat!
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- June 17, 2014 at 5:25 am
Hello Joe – I love your thinking about being 'spot welded'! When I'm due for surgery, I call it 'having more embroidery done'!
Interesting point you raise – radiation hasn't been mentioned in the context of the lung tumours – it had previously been ruled out in relation to the conjunctival melanoma but of course – why wouldn't I be a good candidate for radiation or at least have that as an option for discussion? My problem is my oncologist – she's a melanoma specialist but her baby is immunotherapy. Sorry to say, but I have to fire her (mainly because at my results meeting she said 'Oh, did you know you have growth in your lung? I think that's right – I can't find my paperwork, I'll just go and see if I can find a copy' and left me there, agog and aghast for several minutes.)
If something's resectable, I prefer to take the pain rather than 14 weeks of Yervoy and not knowing if I'm one of the 30% for whom it works, especially when a 16mm growth wasn't there 12 weeks ago. I need more information from my surgeon about the likely difficulty PLUS I need to find a better oncologist who takes the time and care to go through all options with me. I'm kinda thinking the same as you Joe – Yervoy is there for when tumours aren't resectable. So, back to my drawing board, stat!
-
- June 17, 2014 at 5:25 am
Hello Joe – I love your thinking about being 'spot welded'! When I'm due for surgery, I call it 'having more embroidery done'!
Interesting point you raise – radiation hasn't been mentioned in the context of the lung tumours – it had previously been ruled out in relation to the conjunctival melanoma but of course – why wouldn't I be a good candidate for radiation or at least have that as an option for discussion? My problem is my oncologist – she's a melanoma specialist but her baby is immunotherapy. Sorry to say, but I have to fire her (mainly because at my results meeting she said 'Oh, did you know you have growth in your lung? I think that's right – I can't find my paperwork, I'll just go and see if I can find a copy' and left me there, agog and aghast for several minutes.)
If something's resectable, I prefer to take the pain rather than 14 weeks of Yervoy and not knowing if I'm one of the 30% for whom it works, especially when a 16mm growth wasn't there 12 weeks ago. I need more information from my surgeon about the likely difficulty PLUS I need to find a better oncologist who takes the time and care to go through all options with me. I'm kinda thinking the same as you Joe – Yervoy is there for when tumours aren't resectable. So, back to my drawing board, stat!
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- June 16, 2014 at 1:21 pm
Have you been offered or considered radiation therapy as an option, too? Perhaps CyberKnife or SBRT? There's a good discussion I was part of last week about SBRT and lung mets here:
I'm not implying that it is necessarily a better or worse option than those you are considering, only that maybe it's worth discussing with your doctors. I've had a mix of systemic immunotherapies, surgeries, and radiation therapy, and like you, think there's certainly peace of mind in "just cutting it out" and being done with a particular met. We've jokingly referred to my surgeries and radiation as "spot welding". I've been comfortable with this approach, using targeted, tactical treatments of surgery and radiation where appropriate and when tumor burden has been low, and reserving the "big gun" systemic treatments for when tumor burden is an issue or a particular met is unresectable. With my lung met, surgery was an option as it was relatively small (13-mm), accessible, and considered resectable. However, all surgeries come with risk, as you know, and my doctors felt that they could achieve compete local control of the tumor with radiation without causing damage to surrounding tissues or subjecting me to a more involved lung surgery. This see only in February, but my first scan since, in April, was already showing a good response. Having had that experience, and still not knowing for sure what the long term response will be, I'm thus far satisfied with that approach. So to answer your question, I'd choose radiation again, but am open to surgery, and would hold off on Yervoy or any other systemic treatment until such time as it's needed. I csn understand alternative points-of-view, e.g. "Why wait for systemic therapy and just try it ASAP?" but for me, this is the strategy we've followed. Best wishes!
Joe
-
- June 16, 2014 at 1:21 pm
Have you been offered or considered radiation therapy as an option, too? Perhaps CyberKnife or SBRT? There's a good discussion I was part of last week about SBRT and lung mets here:
I'm not implying that it is necessarily a better or worse option than those you are considering, only that maybe it's worth discussing with your doctors. I've had a mix of systemic immunotherapies, surgeries, and radiation therapy, and like you, think there's certainly peace of mind in "just cutting it out" and being done with a particular met. We've jokingly referred to my surgeries and radiation as "spot welding". I've been comfortable with this approach, using targeted, tactical treatments of surgery and radiation where appropriate and when tumor burden has been low, and reserving the "big gun" systemic treatments for when tumor burden is an issue or a particular met is unresectable. With my lung met, surgery was an option as it was relatively small (13-mm), accessible, and considered resectable. However, all surgeries come with risk, as you know, and my doctors felt that they could achieve compete local control of the tumor with radiation without causing damage to surrounding tissues or subjecting me to a more involved lung surgery. This see only in February, but my first scan since, in April, was already showing a good response. Having had that experience, and still not knowing for sure what the long term response will be, I'm thus far satisfied with that approach. So to answer your question, I'd choose radiation again, but am open to surgery, and would hold off on Yervoy or any other systemic treatment until such time as it's needed. I csn understand alternative points-of-view, e.g. "Why wait for systemic therapy and just try it ASAP?" but for me, this is the strategy we've followed. Best wishes!
Joe
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- June 16, 2014 at 6:23 pm
You have stage IV, not 3 or 2. So from what my oncologists tell me, you're going to have more and more spots pop up inside you, just like I did. Cutting it out is such a temporary fix as is a cyber knife. Radiation on your lungs may be a better alternative. But there are bettter options out there for a Stage IV patient.
I don't recommend Yervoy, because it didn't work for me AND I got every side effect possible.
Ask your Oncologist about getting on B-Raf/MEK. 76% chance it will shrink, stabiliize or cure your Melanoma. I just started taking this again………..due to some issues with taking it to start with and changing doses and such. One of the other good parts is that you will know in 8 weeks whether or not it's working. Then you can go pursue other options.
Make smart choices! I know it's hard to do with all the different opinions and new options.
Good luck to you!
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- June 17, 2014 at 6:14 am
Hi Dave – your news is really good! Congrats to you! My options are limited because I have the NRAS mutation. I can go onto PD1 which has just been compassionatlye released in Australia (where I am). Apparently, I have to go on Yervoy first and then if that doesn't work, go on to PD1.
The thing I like about surgery is that I know it's out – I'm more prepared to take the pain than to wait in hope for 14 weeks that Yervoy is shrinking/stabilising the tumour. You're right though – it's like Whack-a-Mole – at some point, having more surgey isn't going to be worthwhile. Am I at that stage yet though – that's the question.
Your reply – and the others – makes me realise I need more information and I need a better oncologist so I don't have to go wildy looking for expertise. Thanks for adding to my understanding Dave.
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- June 17, 2014 at 6:14 am
Hi Dave – your news is really good! Congrats to you! My options are limited because I have the NRAS mutation. I can go onto PD1 which has just been compassionatlye released in Australia (where I am). Apparently, I have to go on Yervoy first and then if that doesn't work, go on to PD1.
The thing I like about surgery is that I know it's out – I'm more prepared to take the pain than to wait in hope for 14 weeks that Yervoy is shrinking/stabilising the tumour. You're right though – it's like Whack-a-Mole – at some point, having more surgey isn't going to be worthwhile. Am I at that stage yet though – that's the question.
Your reply – and the others – makes me realise I need more information and I need a better oncologist so I don't have to go wildy looking for expertise. Thanks for adding to my understanding Dave.
-
- June 17, 2014 at 6:14 am
Hi Dave – your news is really good! Congrats to you! My options are limited because I have the NRAS mutation. I can go onto PD1 which has just been compassionatlye released in Australia (where I am). Apparently, I have to go on Yervoy first and then if that doesn't work, go on to PD1.
The thing I like about surgery is that I know it's out – I'm more prepared to take the pain than to wait in hope for 14 weeks that Yervoy is shrinking/stabilising the tumour. You're right though – it's like Whack-a-Mole – at some point, having more surgey isn't going to be worthwhile. Am I at that stage yet though – that's the question.
Your reply – and the others – makes me realise I need more information and I need a better oncologist so I don't have to go wildy looking for expertise. Thanks for adding to my understanding Dave.
-
- June 16, 2014 at 6:23 pm
You have stage IV, not 3 or 2. So from what my oncologists tell me, you're going to have more and more spots pop up inside you, just like I did. Cutting it out is such a temporary fix as is a cyber knife. Radiation on your lungs may be a better alternative. But there are bettter options out there for a Stage IV patient.
I don't recommend Yervoy, because it didn't work for me AND I got every side effect possible.
Ask your Oncologist about getting on B-Raf/MEK. 76% chance it will shrink, stabiliize or cure your Melanoma. I just started taking this again………..due to some issues with taking it to start with and changing doses and such. One of the other good parts is that you will know in 8 weeks whether or not it's working. Then you can go pursue other options.
Make smart choices! I know it's hard to do with all the different opinions and new options.
Good luck to you!
-
- June 16, 2014 at 6:23 pm
You have stage IV, not 3 or 2. So from what my oncologists tell me, you're going to have more and more spots pop up inside you, just like I did. Cutting it out is such a temporary fix as is a cyber knife. Radiation on your lungs may be a better alternative. But there are bettter options out there for a Stage IV patient.
I don't recommend Yervoy, because it didn't work for me AND I got every side effect possible.
Ask your Oncologist about getting on B-Raf/MEK. 76% chance it will shrink, stabiliize or cure your Melanoma. I just started taking this again………..due to some issues with taking it to start with and changing doses and such. One of the other good parts is that you will know in 8 weeks whether or not it's working. Then you can go pursue other options.
Make smart choices! I know it's hard to do with all the different opinions and new options.
Good luck to you!
-
- June 16, 2014 at 8:59 pm
For me, my surgeon said there was simply too much to remove and surgery would be too invasive, because mine was stage 4 in both arm pits, behind my chestwall plate, wrapped around my heart, and there was a mass on my liver.
So surgery was out…and two aproved treatments were offered, or, if I qualified for the pd1 clinical trial, I could opt for that.
So they made the decision for me and put me on the pd1 Mk-3475 trial and it is working. So I feel lucky to have not had to make the decision for myself that you are stuck with. It is so hard to make these types of decisions that will mean everything to us. So I feel for you.
I am quite happy with my treatment and am one of the responders. I am feeling great and living a completely normal life working full time.
Good luck with your decision,
Laurie
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- June 16, 2014 at 8:59 pm
For me, my surgeon said there was simply too much to remove and surgery would be too invasive, because mine was stage 4 in both arm pits, behind my chestwall plate, wrapped around my heart, and there was a mass on my liver.
So surgery was out…and two aproved treatments were offered, or, if I qualified for the pd1 clinical trial, I could opt for that.
So they made the decision for me and put me on the pd1 Mk-3475 trial and it is working. So I feel lucky to have not had to make the decision for myself that you are stuck with. It is so hard to make these types of decisions that will mean everything to us. So I feel for you.
I am quite happy with my treatment and am one of the responders. I am feeling great and living a completely normal life working full time.
Good luck with your decision,
Laurie
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- June 17, 2014 at 8:08 am
Laurie, hi! I'm happy for you that you're responding to PD1! That's an option for me AFTER I go on Yervoy – it will be nerve-wracking waiting for 14 weeks to figure out if Yervoy is working though.
My tumours aren't as involved as yours – mine must have been picked up earlier – so there is still a chance of surgery. I've put the word out with my previous eye surgeons who are now scouting around for thoracic surgeons I can quickly talk with. Thank god for the amazing generosity of (most) of our doctors hey?
It's really heartening for me to hear that you're living a completely normal life – I can;t imagine that will happen with me. Once you have stage IV – I guess I think that I'm going to be dead in the next year. Is my thinking wrong on that? It's proving to be a hard way to live, isn;t it?
Many thanks Laurie!
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- June 17, 2014 at 8:08 am
Laurie, hi! I'm happy for you that you're responding to PD1! That's an option for me AFTER I go on Yervoy – it will be nerve-wracking waiting for 14 weeks to figure out if Yervoy is working though.
My tumours aren't as involved as yours – mine must have been picked up earlier – so there is still a chance of surgery. I've put the word out with my previous eye surgeons who are now scouting around for thoracic surgeons I can quickly talk with. Thank god for the amazing generosity of (most) of our doctors hey?
It's really heartening for me to hear that you're living a completely normal life – I can;t imagine that will happen with me. Once you have stage IV – I guess I think that I'm going to be dead in the next year. Is my thinking wrong on that? It's proving to be a hard way to live, isn;t it?
Many thanks Laurie!
-
- June 17, 2014 at 3:11 pm
For me, I felt like my back was against the wall for the first several months, yes, that is true. But I sat down and just thought about it after the first week of hearing my diagnosis. And it became clear to me what I had to do to help my body beat it. So I put all my attention into being as healthy as I could and treating my body like it was a machine that needed the best of the best ingredients to run at it's best. In my eyes, I was going to help it heal me. It was 6 months into my diagnosis before any of my doctors even uttered the words stage 4 to me. They never used those words the whole time. And I honestly didn't go online and look up statistics until a year after my diagnosis. So I chose to handle what I could…which was make as many positive changes to my health as I could. 🙂
So I scanned three months into treatment and they found that almost everything cleared up and was gone. All the mets and the mass on my liver were gone. The only thing still showing up was that one bad node that they had originally biopsied. That node was not only still there, but it had doubled in size. Then 3 months later, the node just blew up and liquified. The doctors said that it liquified so that meant it was dying. And indeed, it started shrinking. That was a year ago in April. Since then, it has shrunk from the size of a peach to now being the size of a grape.
With all the different treatments that have just become available to us in the past couple of years…we really can't look at old statistics online anyway. People with stage 4 are truly living many years now and doing great. I have read so many stories on this board of people doing great for 12, 15 and 20+ years and that are still fine.
I am almost two years from my stage 4 diagnosis and I feel great and really do live a totally normal life and I feel confident that I am going to be fine. I just turned 40 and am single and dating and my social life is crazy busy and fun.
My boss has really been phenomenal to me throughout the entire thing. He is a scientist and he believes that there are two things that are very important and are also proved by science to help people beat these kinds of diagnosis.
1. You must have a positive outlook. A positive attitude is so important.
2. You must have no stress. Which is funny coming from a boss that was so stressful to work with. But since my diagnosis, he has turned a new leaf. He truly does not want me stressed. That has been a huge help.
My saying that I said to myself all the time was "You can do this! You got this! So you just need to believe in you…and you can do this. 🙂 🙂 Don't spend too much time worrying and letting fear get the best of you, and spend more time just taking in all the little great things that we are blessed to experience. 🙂
Laurie
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- June 17, 2014 at 3:11 pm
For me, I felt like my back was against the wall for the first several months, yes, that is true. But I sat down and just thought about it after the first week of hearing my diagnosis. And it became clear to me what I had to do to help my body beat it. So I put all my attention into being as healthy as I could and treating my body like it was a machine that needed the best of the best ingredients to run at it's best. In my eyes, I was going to help it heal me. It was 6 months into my diagnosis before any of my doctors even uttered the words stage 4 to me. They never used those words the whole time. And I honestly didn't go online and look up statistics until a year after my diagnosis. So I chose to handle what I could…which was make as many positive changes to my health as I could. 🙂
So I scanned three months into treatment and they found that almost everything cleared up and was gone. All the mets and the mass on my liver were gone. The only thing still showing up was that one bad node that they had originally biopsied. That node was not only still there, but it had doubled in size. Then 3 months later, the node just blew up and liquified. The doctors said that it liquified so that meant it was dying. And indeed, it started shrinking. That was a year ago in April. Since then, it has shrunk from the size of a peach to now being the size of a grape.
With all the different treatments that have just become available to us in the past couple of years…we really can't look at old statistics online anyway. People with stage 4 are truly living many years now and doing great. I have read so many stories on this board of people doing great for 12, 15 and 20+ years and that are still fine.
I am almost two years from my stage 4 diagnosis and I feel great and really do live a totally normal life and I feel confident that I am going to be fine. I just turned 40 and am single and dating and my social life is crazy busy and fun.
My boss has really been phenomenal to me throughout the entire thing. He is a scientist and he believes that there are two things that are very important and are also proved by science to help people beat these kinds of diagnosis.
1. You must have a positive outlook. A positive attitude is so important.
2. You must have no stress. Which is funny coming from a boss that was so stressful to work with. But since my diagnosis, he has turned a new leaf. He truly does not want me stressed. That has been a huge help.
My saying that I said to myself all the time was "You can do this! You got this! So you just need to believe in you…and you can do this. 🙂 🙂 Don't spend too much time worrying and letting fear get the best of you, and spend more time just taking in all the little great things that we are blessed to experience. 🙂
Laurie
-
- June 17, 2014 at 3:11 pm
For me, I felt like my back was against the wall for the first several months, yes, that is true. But I sat down and just thought about it after the first week of hearing my diagnosis. And it became clear to me what I had to do to help my body beat it. So I put all my attention into being as healthy as I could and treating my body like it was a machine that needed the best of the best ingredients to run at it's best. In my eyes, I was going to help it heal me. It was 6 months into my diagnosis before any of my doctors even uttered the words stage 4 to me. They never used those words the whole time. And I honestly didn't go online and look up statistics until a year after my diagnosis. So I chose to handle what I could…which was make as many positive changes to my health as I could. 🙂
So I scanned three months into treatment and they found that almost everything cleared up and was gone. All the mets and the mass on my liver were gone. The only thing still showing up was that one bad node that they had originally biopsied. That node was not only still there, but it had doubled in size. Then 3 months later, the node just blew up and liquified. The doctors said that it liquified so that meant it was dying. And indeed, it started shrinking. That was a year ago in April. Since then, it has shrunk from the size of a peach to now being the size of a grape.
With all the different treatments that have just become available to us in the past couple of years…we really can't look at old statistics online anyway. People with stage 4 are truly living many years now and doing great. I have read so many stories on this board of people doing great for 12, 15 and 20+ years and that are still fine.
I am almost two years from my stage 4 diagnosis and I feel great and really do live a totally normal life and I feel confident that I am going to be fine. I just turned 40 and am single and dating and my social life is crazy busy and fun.
My boss has really been phenomenal to me throughout the entire thing. He is a scientist and he believes that there are two things that are very important and are also proved by science to help people beat these kinds of diagnosis.
1. You must have a positive outlook. A positive attitude is so important.
2. You must have no stress. Which is funny coming from a boss that was so stressful to work with. But since my diagnosis, he has turned a new leaf. He truly does not want me stressed. That has been a huge help.
My saying that I said to myself all the time was "You can do this! You got this! So you just need to believe in you…and you can do this. 🙂 🙂 Don't spend too much time worrying and letting fear get the best of you, and spend more time just taking in all the little great things that we are blessed to experience. 🙂
Laurie
-
- June 17, 2014 at 8:08 am
Laurie, hi! I'm happy for you that you're responding to PD1! That's an option for me AFTER I go on Yervoy – it will be nerve-wracking waiting for 14 weeks to figure out if Yervoy is working though.
My tumours aren't as involved as yours – mine must have been picked up earlier – so there is still a chance of surgery. I've put the word out with my previous eye surgeons who are now scouting around for thoracic surgeons I can quickly talk with. Thank god for the amazing generosity of (most) of our doctors hey?
It's really heartening for me to hear that you're living a completely normal life – I can;t imagine that will happen with me. Once you have stage IV – I guess I think that I'm going to be dead in the next year. Is my thinking wrong on that? It's proving to be a hard way to live, isn;t it?
Many thanks Laurie!
-
- June 16, 2014 at 8:59 pm
For me, my surgeon said there was simply too much to remove and surgery would be too invasive, because mine was stage 4 in both arm pits, behind my chestwall plate, wrapped around my heart, and there was a mass on my liver.
So surgery was out…and two aproved treatments were offered, or, if I qualified for the pd1 clinical trial, I could opt for that.
So they made the decision for me and put me on the pd1 Mk-3475 trial and it is working. So I feel lucky to have not had to make the decision for myself that you are stuck with. It is so hard to make these types of decisions that will mean everything to us. So I feel for you.
I am quite happy with my treatment and am one of the responders. I am feeling great and living a completely normal life working full time.
Good luck with your decision,
Laurie
-
- June 17, 2014 at 3:13 am
I think you have to look into your crystal ball and take your best guess at how long you would possibly have before you think your next occurence would happen. Some people can go years between occurences but unfortunately your trend does not seem to be going that way. Do you think it's worth the toll of surgery for X amount of time before your next recurrence? You have a relatively low tumor burden right now so it may not be a bad time to try Ipi since sometimes it can take a while for patients to respond. I do like Joey's suggestion of radiation and if "I were in your shoes" I would look at doing radiation and Ipi concurrently. There have been studies showing that Ipi may be more effective when used with radiation. Ipi has been many people's silver bullet and could be the last treatment you need and if not it could still serve as a bridge for you to another treatment such as PD-1. Best of luck to you.
Brian
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- June 17, 2014 at 3:13 am
I think you have to look into your crystal ball and take your best guess at how long you would possibly have before you think your next occurence would happen. Some people can go years between occurences but unfortunately your trend does not seem to be going that way. Do you think it's worth the toll of surgery for X amount of time before your next recurrence? You have a relatively low tumor burden right now so it may not be a bad time to try Ipi since sometimes it can take a while for patients to respond. I do like Joey's suggestion of radiation and if "I were in your shoes" I would look at doing radiation and Ipi concurrently. There have been studies showing that Ipi may be more effective when used with radiation. Ipi has been many people's silver bullet and could be the last treatment you need and if not it could still serve as a bridge for you to another treatment such as PD-1. Best of luck to you.
Brian
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- June 17, 2014 at 8:27 am
Hello Brian – that's sensible advice. I honestly think that I'm cooking more as we speak – there's evidence that it's more likely than not, anyway. But here's my thinking – I'm 49, fit (brown belt martial arts), good mental/emotional immunology, and had plenty of experience in recovering from ops – I do okay. If I can 100% right now get rid of 2 lung tumours versus 30% chance of shrinking them for a while… I really want to have surgey for any tumour that is operable and leave Yervoy and PD1 for the (seemingly) inevitable day when I have unresectable tumours.
However, the piece of the puzzle is – what price the operation? Is it the 'crack your chest' or the keyhole surgery – that makes a difference doesn't it!
And I need to explore why radiation has never been discussed given that it's worked so well for you.
Many thanks for sharing your thoughts with me Brian.
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- June 17, 2014 at 8:27 am
Hello Brian – that's sensible advice. I honestly think that I'm cooking more as we speak – there's evidence that it's more likely than not, anyway. But here's my thinking – I'm 49, fit (brown belt martial arts), good mental/emotional immunology, and had plenty of experience in recovering from ops – I do okay. If I can 100% right now get rid of 2 lung tumours versus 30% chance of shrinking them for a while… I really want to have surgey for any tumour that is operable and leave Yervoy and PD1 for the (seemingly) inevitable day when I have unresectable tumours.
However, the piece of the puzzle is – what price the operation? Is it the 'crack your chest' or the keyhole surgery – that makes a difference doesn't it!
And I need to explore why radiation has never been discussed given that it's worked so well for you.
Many thanks for sharing your thoughts with me Brian.
-
- June 17, 2014 at 8:27 am
Hello Brian – that's sensible advice. I honestly think that I'm cooking more as we speak – there's evidence that it's more likely than not, anyway. But here's my thinking – I'm 49, fit (brown belt martial arts), good mental/emotional immunology, and had plenty of experience in recovering from ops – I do okay. If I can 100% right now get rid of 2 lung tumours versus 30% chance of shrinking them for a while… I really want to have surgey for any tumour that is operable and leave Yervoy and PD1 for the (seemingly) inevitable day when I have unresectable tumours.
However, the piece of the puzzle is – what price the operation? Is it the 'crack your chest' or the keyhole surgery – that makes a difference doesn't it!
And I need to explore why radiation has never been discussed given that it's worked so well for you.
Many thanks for sharing your thoughts with me Brian.
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- June 17, 2014 at 3:13 am
I think you have to look into your crystal ball and take your best guess at how long you would possibly have before you think your next occurence would happen. Some people can go years between occurences but unfortunately your trend does not seem to be going that way. Do you think it's worth the toll of surgery for X amount of time before your next recurrence? You have a relatively low tumor burden right now so it may not be a bad time to try Ipi since sometimes it can take a while for patients to respond. I do like Joey's suggestion of radiation and if "I were in your shoes" I would look at doing radiation and Ipi concurrently. There have been studies showing that Ipi may be more effective when used with radiation. Ipi has been many people's silver bullet and could be the last treatment you need and if not it could still serve as a bridge for you to another treatment such as PD-1. Best of luck to you.
Brian
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- June 17, 2014 at 7:52 pm
I really appreciate seeing the differing opinions offered up here in this thread. and am thankful that we can finally have discussions like this about multiple options for melanoma patients. I hope this also serves as a reminder to all of us (it does to me) that each of us with melanoma in common, also have unique diseases and paths that we've followed. Those differences arise not only from disease progression patterns, but also personal preferences and emotions about how we want to live our lives, and our doctors own unique perspectives into treatment approaches. There is no single perfect treatment plan, only good, better, and best plans that are tailored to individual patients with unique aspects to their disease.
I've used the Whack-a-Mole analogy many times over the years. It's a terrible, wonderful pun for us dealing with melanoma, but for me has been the strategy that has worked. Earlier you mentioned :"embroidery". Funny, throughout my own journey, my wife has become quite the adept quilter. All of the doctors and nurses at the facilities where I've been a patient know her as the "quilting lady". It keeps her hands busy through some grueling treatments and she's made a number of melanoma awareness quilts and others supporting the cause. I've also been the guy showing up to the hospital with personalized bedding. 😉
Anyway, I think both of the major approaches are equally valid. For me, where there's been low tumor burden, I've preferred to tactically address individual tumors with surgery or radiation, but I can also completely understand and support the idea of making a run at systemically eliminating any chance for future recurrence. But again, for me, where surgery usually results in complete *local* control, that's my preference vs. a 20% shot of a Yervoy response. Yes, I've done ipi (and TIL and IL-2) and won't be surprised for PD-1 to be in my future at the right time. So much of this is a game of timing — what trials are available? When is this drug or that therapy going to be approved? What's my current tumor burden and where is the danger "hot spot" right now? I've benefited from doctors and practitioners that have collaboratively helped me navigate the maze.
I was Stage IV M1c (as bad as it gets) pretty much from the beginning, with disease progression to literally every corner of my body: brain, bones in three of four limbs, lymph nodes, small intestine, lung, and brain, among others. But progression has been slow. I know many here have gone in for a scan and found out they have five or ten new lesions, mixed among liver, lung, brain, etc., and I've been strangely fortunate to have not had such tumor burden thrust on me all at once. Whether that's an aspect of my specific disease or a result of the immunotherapies I've had slowing down progression to where we've been able to "spot weld" and "Whack-a-Mole", we'll never know for sure. I was diagnosed in summer of 2010, and by the summer of 2011, we basically were at a point where we had to throw away the proverbial playbook and take things as they came, incorporating the rapidly changing nature of available treatment options along the way.
Brain, Laurie, Dave, thanks for all of your perspectives — each counts equally and hopefully helps others as they navigate their own unique path.
Best to all of you,
Joe -
- June 17, 2014 at 7:52 pm
I really appreciate seeing the differing opinions offered up here in this thread. and am thankful that we can finally have discussions like this about multiple options for melanoma patients. I hope this also serves as a reminder to all of us (it does to me) that each of us with melanoma in common, also have unique diseases and paths that we've followed. Those differences arise not only from disease progression patterns, but also personal preferences and emotions about how we want to live our lives, and our doctors own unique perspectives into treatment approaches. There is no single perfect treatment plan, only good, better, and best plans that are tailored to individual patients with unique aspects to their disease.
I've used the Whack-a-Mole analogy many times over the years. It's a terrible, wonderful pun for us dealing with melanoma, but for me has been the strategy that has worked. Earlier you mentioned :"embroidery". Funny, throughout my own journey, my wife has become quite the adept quilter. All of the doctors and nurses at the facilities where I've been a patient know her as the "quilting lady". It keeps her hands busy through some grueling treatments and she's made a number of melanoma awareness quilts and others supporting the cause. I've also been the guy showing up to the hospital with personalized bedding. 😉
Anyway, I think both of the major approaches are equally valid. For me, where there's been low tumor burden, I've preferred to tactically address individual tumors with surgery or radiation, but I can also completely understand and support the idea of making a run at systemically eliminating any chance for future recurrence. But again, for me, where surgery usually results in complete *local* control, that's my preference vs. a 20% shot of a Yervoy response. Yes, I've done ipi (and TIL and IL-2) and won't be surprised for PD-1 to be in my future at the right time. So much of this is a game of timing — what trials are available? When is this drug or that therapy going to be approved? What's my current tumor burden and where is the danger "hot spot" right now? I've benefited from doctors and practitioners that have collaboratively helped me navigate the maze.
I was Stage IV M1c (as bad as it gets) pretty much from the beginning, with disease progression to literally every corner of my body: brain, bones in three of four limbs, lymph nodes, small intestine, lung, and brain, among others. But progression has been slow. I know many here have gone in for a scan and found out they have five or ten new lesions, mixed among liver, lung, brain, etc., and I've been strangely fortunate to have not had such tumor burden thrust on me all at once. Whether that's an aspect of my specific disease or a result of the immunotherapies I've had slowing down progression to where we've been able to "spot weld" and "Whack-a-Mole", we'll never know for sure. I was diagnosed in summer of 2010, and by the summer of 2011, we basically were at a point where we had to throw away the proverbial playbook and take things as they came, incorporating the rapidly changing nature of available treatment options along the way.
Brain, Laurie, Dave, thanks for all of your perspectives — each counts equally and hopefully helps others as they navigate their own unique path.
Best to all of you,
Joe -
- June 17, 2014 at 7:52 pm
I really appreciate seeing the differing opinions offered up here in this thread. and am thankful that we can finally have discussions like this about multiple options for melanoma patients. I hope this also serves as a reminder to all of us (it does to me) that each of us with melanoma in common, also have unique diseases and paths that we've followed. Those differences arise not only from disease progression patterns, but also personal preferences and emotions about how we want to live our lives, and our doctors own unique perspectives into treatment approaches. There is no single perfect treatment plan, only good, better, and best plans that are tailored to individual patients with unique aspects to their disease.
I've used the Whack-a-Mole analogy many times over the years. It's a terrible, wonderful pun for us dealing with melanoma, but for me has been the strategy that has worked. Earlier you mentioned :"embroidery". Funny, throughout my own journey, my wife has become quite the adept quilter. All of the doctors and nurses at the facilities where I've been a patient know her as the "quilting lady". It keeps her hands busy through some grueling treatments and she's made a number of melanoma awareness quilts and others supporting the cause. I've also been the guy showing up to the hospital with personalized bedding. 😉
Anyway, I think both of the major approaches are equally valid. For me, where there's been low tumor burden, I've preferred to tactically address individual tumors with surgery or radiation, but I can also completely understand and support the idea of making a run at systemically eliminating any chance for future recurrence. But again, for me, where surgery usually results in complete *local* control, that's my preference vs. a 20% shot of a Yervoy response. Yes, I've done ipi (and TIL and IL-2) and won't be surprised for PD-1 to be in my future at the right time. So much of this is a game of timing — what trials are available? When is this drug or that therapy going to be approved? What's my current tumor burden and where is the danger "hot spot" right now? I've benefited from doctors and practitioners that have collaboratively helped me navigate the maze.
I was Stage IV M1c (as bad as it gets) pretty much from the beginning, with disease progression to literally every corner of my body: brain, bones in three of four limbs, lymph nodes, small intestine, lung, and brain, among others. But progression has been slow. I know many here have gone in for a scan and found out they have five or ten new lesions, mixed among liver, lung, brain, etc., and I've been strangely fortunate to have not had such tumor burden thrust on me all at once. Whether that's an aspect of my specific disease or a result of the immunotherapies I've had slowing down progression to where we've been able to "spot weld" and "Whack-a-Mole", we'll never know for sure. I was diagnosed in summer of 2010, and by the summer of 2011, we basically were at a point where we had to throw away the proverbial playbook and take things as they came, incorporating the rapidly changing nature of available treatment options along the way.
Brain, Laurie, Dave, thanks for all of your perspectives — each counts equally and hopefully helps others as they navigate their own unique path.
Best to all of you,
Joe
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