› Forums › General Melanoma Community › Melanoma Spread to Breast?
- This topic has 27 replies, 5 voices, and was last updated 10 years, 11 months ago by
sweetaugust.
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- July 5, 2014 at 3:09 am
A month ago, I went in for my routine PET scan. My breast and ovary lit up. After a breast biopsy, they determined that the melanoma has spread to my breast. I haven't had any tests on the ovary. I have an appointment at Duke Cancer Center on Monday. From our phone conversations, the Dr doesn't want to do surgery to remove the melanoma. I am assuming I'll be going straight into treatment. I already had interfeion, which was awful. Has anyone else had this experience? Any advice?
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- July 5, 2014 at 11:43 am
I have had numerous masses in both the left and right breast (actually have a few right now). They biopsied the first one, but after that we haven't bothered. None of mine have been surgically removed because I also had tumors elsewhere in my body so medical therapy (immunotherapy) has been the more appropriate choice. At times my breasts have had so many compared to the rest of my body I have considered mastectomy, just to get rid of a few, but never seriously enough to pursue it. In the end it would just take me out of commission for a while with healing and I would still have tumors in other areas of my body to deal with. I began as a stage IIIB, did interferon, though I tolerated it pretty well. When I progressed to stage IV I was given the option of Yervoy or IL-2 (all that was available at the time) and I chose IL-2 (which is like interferon on steroids). I'm not at all sorry I went that route as it did actually kill off ALL of the tumors I had at that time- includine a very painful one in my spine and the ones in my breasts. None of those have returned, but unfortunately others began to grow, so I went through Yervoy last summer (along with whole brain radiation for brain mets). The side effects were managable, but i did have boarderline colitis and nausea along with a bit of weight loss. The brain radiation was successful, but the Yervoy really was not and at the end of last year I started the BRAF/MEK combo. I had to have a bunch more brain mets treated (with targeted radiation, or SRS) in the first half of this year, and the combo started to quit working in May. I'm now in the Merk PD-1 expanded access program (happily no side effects after 2 doses) and waiting to see what happens. Since the BRAF/MEK failed I have had re-growth of 4 or 5 breast masses that I am monitoring, along with a handful of other subcutaneous masses. So far, my reproductive organs, including my ovaries, have not been affected. I think it's good you have an appointment at a larger center and i think you're right that they'll want to get you into treatment ASAP. Hopefully they'll have some good options for you.
Best of luck
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- July 5, 2014 at 11:43 am
I have had numerous masses in both the left and right breast (actually have a few right now). They biopsied the first one, but after that we haven't bothered. None of mine have been surgically removed because I also had tumors elsewhere in my body so medical therapy (immunotherapy) has been the more appropriate choice. At times my breasts have had so many compared to the rest of my body I have considered mastectomy, just to get rid of a few, but never seriously enough to pursue it. In the end it would just take me out of commission for a while with healing and I would still have tumors in other areas of my body to deal with. I began as a stage IIIB, did interferon, though I tolerated it pretty well. When I progressed to stage IV I was given the option of Yervoy or IL-2 (all that was available at the time) and I chose IL-2 (which is like interferon on steroids). I'm not at all sorry I went that route as it did actually kill off ALL of the tumors I had at that time- includine a very painful one in my spine and the ones in my breasts. None of those have returned, but unfortunately others began to grow, so I went through Yervoy last summer (along with whole brain radiation for brain mets). The side effects were managable, but i did have boarderline colitis and nausea along with a bit of weight loss. The brain radiation was successful, but the Yervoy really was not and at the end of last year I started the BRAF/MEK combo. I had to have a bunch more brain mets treated (with targeted radiation, or SRS) in the first half of this year, and the combo started to quit working in May. I'm now in the Merk PD-1 expanded access program (happily no side effects after 2 doses) and waiting to see what happens. Since the BRAF/MEK failed I have had re-growth of 4 or 5 breast masses that I am monitoring, along with a handful of other subcutaneous masses. So far, my reproductive organs, including my ovaries, have not been affected. I think it's good you have an appointment at a larger center and i think you're right that they'll want to get you into treatment ASAP. Hopefully they'll have some good options for you.
Best of luck
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- July 5, 2014 at 11:43 am
I have had numerous masses in both the left and right breast (actually have a few right now). They biopsied the first one, but after that we haven't bothered. None of mine have been surgically removed because I also had tumors elsewhere in my body so medical therapy (immunotherapy) has been the more appropriate choice. At times my breasts have had so many compared to the rest of my body I have considered mastectomy, just to get rid of a few, but never seriously enough to pursue it. In the end it would just take me out of commission for a while with healing and I would still have tumors in other areas of my body to deal with. I began as a stage IIIB, did interferon, though I tolerated it pretty well. When I progressed to stage IV I was given the option of Yervoy or IL-2 (all that was available at the time) and I chose IL-2 (which is like interferon on steroids). I'm not at all sorry I went that route as it did actually kill off ALL of the tumors I had at that time- includine a very painful one in my spine and the ones in my breasts. None of those have returned, but unfortunately others began to grow, so I went through Yervoy last summer (along with whole brain radiation for brain mets). The side effects were managable, but i did have boarderline colitis and nausea along with a bit of weight loss. The brain radiation was successful, but the Yervoy really was not and at the end of last year I started the BRAF/MEK combo. I had to have a bunch more brain mets treated (with targeted radiation, or SRS) in the first half of this year, and the combo started to quit working in May. I'm now in the Merk PD-1 expanded access program (happily no side effects after 2 doses) and waiting to see what happens. Since the BRAF/MEK failed I have had re-growth of 4 or 5 breast masses that I am monitoring, along with a handful of other subcutaneous masses. So far, my reproductive organs, including my ovaries, have not been affected. I think it's good you have an appointment at a larger center and i think you're right that they'll want to get you into treatment ASAP. Hopefully they'll have some good options for you.
Best of luck
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- July 5, 2014 at 5:35 pm
I am stage IV with mets to ovary and breast. I was dx when I had my ovary removed (didn't know it was melanoma). My breast met is still there and I just completed my second week of HD IL-2. I go in two weeks for scans to see if the IL-2 is working. I am braf negative, NRAS positive so was only offered IL-2 and ipi. I will start the ipi if scans show that IL-2 was ineffective.
I did not have interferon but if you want to know about IL-2, I'll behappy to share.
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- July 6, 2014 at 12:03 am
I'd love to know more about it. I have such terrible memories of interferion and am not sure I can go through that again. With that being said, I am a 39 year old single mom of an 8 year old, so I know I need to do something. At this time I only have the one place in my breast. I am changing Doctors from Levine Cancer Center to Duke, so I feel like i have lost some time in getting something started.
With these treatments, should I be planning to be off work? Do I need someone to help with myself and my child? Is there a great deal of side effects associated with the treatments? Are there medicines that help contol the pain?
I'm probably not even asking the right questions. Still in the stunned stage.
Delora
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- July 6, 2014 at 1:31 am
Delora,
From your posts, I can't tell what treatments your doctors are recommending. Not sure if I missed it in another of your threads. Then treatments and side-effects can be wide and varied, so it's hard to answer your questions without knowing a little more.
Best,
Joe
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- July 6, 2014 at 2:50 am
Understood. The side-effects can be so varied that it's difficult to lay them all out ahead of time. High-dose IL-2 requires hospital admission for each round, the BRAF inhibitors are pills that are taken at home, and the checkpoint inhibitors (ipilimumab/Yervoy and the anti-PD-1 medications) are given as 90-minute IV infusions every two or three weeks, depending on the medication. Each has it's own set of side-effects and every patient will experience them differently (sometimes markedly so). Whether you're able to work or not depends on your job requirements and also how your side effects are. That, of course, is aside from any other disease symptoms which you may or may not be experiencing.
I've never done interferon, but know others who have, and its profile is also different from the other treatment options above. For example, at its worst, I believe IL-2 is rougher than interferon, but it passes often while still in the hospital, and within a week, I was feeling pretty good physically. But it sounds like while interferon may not get quite as bad as IL-2, it's a much prolonged period of feeling "icky" (I use the term loosely, probably O.K. for some and miserable for others). Again, just an example, there's a lot more than that to detail IL-2 and the rest.
Certainly discuss the side-effects and potential life impacts with your doctor, but also be prepared for either vague or worst-case responses (and come back here to learn more). "Every patient is different…", they're not being evasive, just truthful. Indeed, some people may experience things that make them unable to work during some part of treatment, while others may sail through — and neither makes you a "good" or "bad" patient. Personally, I've always tried to choose the best treatment available from a timing perspective, regardless of side-effect profile, but I understand that others make well-reasoned decisions that necessarily include potential impact to individual life situations.
Let us know what you find out,
Joe
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- July 6, 2014 at 2:56 am
Thank you for that infomration Joe. At least I will be better able to understand some of the choices that are out there. I havent done enough research to know if any of these treatments are worth doing. But I certainly understand the outcome if I choose to do nothing.
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- July 6, 2014 at 2:56 am
Thank you for that infomration Joe. At least I will be better able to understand some of the choices that are out there. I havent done enough research to know if any of these treatments are worth doing. But I certainly understand the outcome if I choose to do nothing.
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- July 6, 2014 at 2:56 am
Thank you for that infomration Joe. At least I will be better able to understand some of the choices that are out there. I havent done enough research to know if any of these treatments are worth doing. But I certainly understand the outcome if I choose to do nothing.
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- July 6, 2014 at 2:50 am
Understood. The side-effects can be so varied that it's difficult to lay them all out ahead of time. High-dose IL-2 requires hospital admission for each round, the BRAF inhibitors are pills that are taken at home, and the checkpoint inhibitors (ipilimumab/Yervoy and the anti-PD-1 medications) are given as 90-minute IV infusions every two or three weeks, depending on the medication. Each has it's own set of side-effects and every patient will experience them differently (sometimes markedly so). Whether you're able to work or not depends on your job requirements and also how your side effects are. That, of course, is aside from any other disease symptoms which you may or may not be experiencing.
I've never done interferon, but know others who have, and its profile is also different from the other treatment options above. For example, at its worst, I believe IL-2 is rougher than interferon, but it passes often while still in the hospital, and within a week, I was feeling pretty good physically. But it sounds like while interferon may not get quite as bad as IL-2, it's a much prolonged period of feeling "icky" (I use the term loosely, probably O.K. for some and miserable for others). Again, just an example, there's a lot more than that to detail IL-2 and the rest.
Certainly discuss the side-effects and potential life impacts with your doctor, but also be prepared for either vague or worst-case responses (and come back here to learn more). "Every patient is different…", they're not being evasive, just truthful. Indeed, some people may experience things that make them unable to work during some part of treatment, while others may sail through — and neither makes you a "good" or "bad" patient. Personally, I've always tried to choose the best treatment available from a timing perspective, regardless of side-effect profile, but I understand that others make well-reasoned decisions that necessarily include potential impact to individual life situations.
Let us know what you find out,
Joe
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- July 6, 2014 at 2:50 am
Understood. The side-effects can be so varied that it's difficult to lay them all out ahead of time. High-dose IL-2 requires hospital admission for each round, the BRAF inhibitors are pills that are taken at home, and the checkpoint inhibitors (ipilimumab/Yervoy and the anti-PD-1 medications) are given as 90-minute IV infusions every two or three weeks, depending on the medication. Each has it's own set of side-effects and every patient will experience them differently (sometimes markedly so). Whether you're able to work or not depends on your job requirements and also how your side effects are. That, of course, is aside from any other disease symptoms which you may or may not be experiencing.
I've never done interferon, but know others who have, and its profile is also different from the other treatment options above. For example, at its worst, I believe IL-2 is rougher than interferon, but it passes often while still in the hospital, and within a week, I was feeling pretty good physically. But it sounds like while interferon may not get quite as bad as IL-2, it's a much prolonged period of feeling "icky" (I use the term loosely, probably O.K. for some and miserable for others). Again, just an example, there's a lot more than that to detail IL-2 and the rest.
Certainly discuss the side-effects and potential life impacts with your doctor, but also be prepared for either vague or worst-case responses (and come back here to learn more). "Every patient is different…", they're not being evasive, just truthful. Indeed, some people may experience things that make them unable to work during some part of treatment, while others may sail through — and neither makes you a "good" or "bad" patient. Personally, I've always tried to choose the best treatment available from a timing perspective, regardless of side-effect profile, but I understand that others make well-reasoned decisions that necessarily include potential impact to individual life situations.
Let us know what you find out,
Joe
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- July 6, 2014 at 1:31 am
Delora,
From your posts, I can't tell what treatments your doctors are recommending. Not sure if I missed it in another of your threads. Then treatments and side-effects can be wide and varied, so it's hard to answer your questions without knowing a little more.
Best,
Joe
-
- July 6, 2014 at 1:31 am
Delora,
From your posts, I can't tell what treatments your doctors are recommending. Not sure if I missed it in another of your threads. Then treatments and side-effects can be wide and varied, so it's hard to answer your questions without knowing a little more.
Best,
Joe
-
- July 7, 2014 at 4:19 pm
Hi Delora,
I had a core biopsy done on a lymph node that was in my right arm pit, close to my breast. I guess it had shown up as enlarged on my breast MRI so they sent me for an ultrasound and then a core biopsy…where they learned it was metastatic melanoma. Then I went in for all the scans which revealed that the melanoma was in several lymph nodes in my right and left arm pits, as well as behind my chestwall plate, wrapped around my heart and there was a mass on my liver. So instead of doing any surgery, they opted to keep everything as it was and to use a sample of my core biospy to get me into the Merck MK-3475 drug trial back in Oct 2012 (when I was 38 years old.) In order to be in the drug trial, that bad node that was biopsied, but still intact, had to remain in my body for the drug trial, as that was the node they were going to base their data on. If they removed that bad node, they would have had to biopsy another node that they would follow during the drug trial.
As it turned out…all other enlarged nodes and the mass on my liver disappeared within the first three months of treatment, and my biopsied bad node doubled in size. And when I scanned again 6 months into treatment, the bad node had finally started to respond to treatment and it has been shrinking about 15% every 5 weeks for the past year. It had reach about the size of a peach in April 2013….and it is now about the size of my thumbnail and considered stable.
Everyone is different, but it seems that the treatment I am on is one of the ones with the least side effects. So I am super happy with the care I've gotten and the treatment I was offered. I have done great, haven't had to miss work, and have kept living a basically normal life. Just a day here or there that I was nauseous and went home. The side effects have all been manageable without any kinds of drugs, because I choose not to take any prescription pills if I do not have to. I tend to believe in feeding my body as many healthy organic fruits and veggies, instead of processed foods loaded with chemicals, to help it get through treatment. I think it helps me greatly.
MK-3475 is now available to patients via the Expanded Access Program, as long as you have tried and failed another drug. It is also called Lambrolizumad and Pembro. It is doing so well, that it is likely that the FDA will approve it to be prescribed to patients maybe as early as a couple months from now.
So good luck in your appointment today. I know the doctor will throw a lot of information at you and it will be overwhelming. But at least you know that there are a few new and great options to try out there, where a few years back it wasn't so easy.
Please let us know what you and your doctor decided was the best option for you.
Laurie
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- July 7, 2014 at 4:19 pm
Hi Delora,
I had a core biopsy done on a lymph node that was in my right arm pit, close to my breast. I guess it had shown up as enlarged on my breast MRI so they sent me for an ultrasound and then a core biopsy…where they learned it was metastatic melanoma. Then I went in for all the scans which revealed that the melanoma was in several lymph nodes in my right and left arm pits, as well as behind my chestwall plate, wrapped around my heart and there was a mass on my liver. So instead of doing any surgery, they opted to keep everything as it was and to use a sample of my core biospy to get me into the Merck MK-3475 drug trial back in Oct 2012 (when I was 38 years old.) In order to be in the drug trial, that bad node that was biopsied, but still intact, had to remain in my body for the drug trial, as that was the node they were going to base their data on. If they removed that bad node, they would have had to biopsy another node that they would follow during the drug trial.
As it turned out…all other enlarged nodes and the mass on my liver disappeared within the first three months of treatment, and my biopsied bad node doubled in size. And when I scanned again 6 months into treatment, the bad node had finally started to respond to treatment and it has been shrinking about 15% every 5 weeks for the past year. It had reach about the size of a peach in April 2013….and it is now about the size of my thumbnail and considered stable.
Everyone is different, but it seems that the treatment I am on is one of the ones with the least side effects. So I am super happy with the care I've gotten and the treatment I was offered. I have done great, haven't had to miss work, and have kept living a basically normal life. Just a day here or there that I was nauseous and went home. The side effects have all been manageable without any kinds of drugs, because I choose not to take any prescription pills if I do not have to. I tend to believe in feeding my body as many healthy organic fruits and veggies, instead of processed foods loaded with chemicals, to help it get through treatment. I think it helps me greatly.
MK-3475 is now available to patients via the Expanded Access Program, as long as you have tried and failed another drug. It is also called Lambrolizumad and Pembro. It is doing so well, that it is likely that the FDA will approve it to be prescribed to patients maybe as early as a couple months from now.
So good luck in your appointment today. I know the doctor will throw a lot of information at you and it will be overwhelming. But at least you know that there are a few new and great options to try out there, where a few years back it wasn't so easy.
Please let us know what you and your doctor decided was the best option for you.
Laurie
-
- July 7, 2014 at 4:19 pm
Hi Delora,
I had a core biopsy done on a lymph node that was in my right arm pit, close to my breast. I guess it had shown up as enlarged on my breast MRI so they sent me for an ultrasound and then a core biopsy…where they learned it was metastatic melanoma. Then I went in for all the scans which revealed that the melanoma was in several lymph nodes in my right and left arm pits, as well as behind my chestwall plate, wrapped around my heart and there was a mass on my liver. So instead of doing any surgery, they opted to keep everything as it was and to use a sample of my core biospy to get me into the Merck MK-3475 drug trial back in Oct 2012 (when I was 38 years old.) In order to be in the drug trial, that bad node that was biopsied, but still intact, had to remain in my body for the drug trial, as that was the node they were going to base their data on. If they removed that bad node, they would have had to biopsy another node that they would follow during the drug trial.
As it turned out…all other enlarged nodes and the mass on my liver disappeared within the first three months of treatment, and my biopsied bad node doubled in size. And when I scanned again 6 months into treatment, the bad node had finally started to respond to treatment and it has been shrinking about 15% every 5 weeks for the past year. It had reach about the size of a peach in April 2013….and it is now about the size of my thumbnail and considered stable.
Everyone is different, but it seems that the treatment I am on is one of the ones with the least side effects. So I am super happy with the care I've gotten and the treatment I was offered. I have done great, haven't had to miss work, and have kept living a basically normal life. Just a day here or there that I was nauseous and went home. The side effects have all been manageable without any kinds of drugs, because I choose not to take any prescription pills if I do not have to. I tend to believe in feeding my body as many healthy organic fruits and veggies, instead of processed foods loaded with chemicals, to help it get through treatment. I think it helps me greatly.
MK-3475 is now available to patients via the Expanded Access Program, as long as you have tried and failed another drug. It is also called Lambrolizumad and Pembro. It is doing so well, that it is likely that the FDA will approve it to be prescribed to patients maybe as early as a couple months from now.
So good luck in your appointment today. I know the doctor will throw a lot of information at you and it will be overwhelming. But at least you know that there are a few new and great options to try out there, where a few years back it wasn't so easy.
Please let us know what you and your doctor decided was the best option for you.
Laurie
-
- July 6, 2014 at 12:03 am
I'd love to know more about it. I have such terrible memories of interferion and am not sure I can go through that again. With that being said, I am a 39 year old single mom of an 8 year old, so I know I need to do something. At this time I only have the one place in my breast. I am changing Doctors from Levine Cancer Center to Duke, so I feel like i have lost some time in getting something started.
With these treatments, should I be planning to be off work? Do I need someone to help with myself and my child? Is there a great deal of side effects associated with the treatments? Are there medicines that help contol the pain?
I'm probably not even asking the right questions. Still in the stunned stage.
Delora
-
- July 6, 2014 at 12:03 am
I'd love to know more about it. I have such terrible memories of interferion and am not sure I can go through that again. With that being said, I am a 39 year old single mom of an 8 year old, so I know I need to do something. At this time I only have the one place in my breast. I am changing Doctors from Levine Cancer Center to Duke, so I feel like i have lost some time in getting something started.
With these treatments, should I be planning to be off work? Do I need someone to help with myself and my child? Is there a great deal of side effects associated with the treatments? Are there medicines that help contol the pain?
I'm probably not even asking the right questions. Still in the stunned stage.
Delora
-
- July 5, 2014 at 5:35 pm
I am stage IV with mets to ovary and breast. I was dx when I had my ovary removed (didn't know it was melanoma). My breast met is still there and I just completed my second week of HD IL-2. I go in two weeks for scans to see if the IL-2 is working. I am braf negative, NRAS positive so was only offered IL-2 and ipi. I will start the ipi if scans show that IL-2 was ineffective.
I did not have interferon but if you want to know about IL-2, I'll behappy to share.
-
- July 5, 2014 at 5:35 pm
I am stage IV with mets to ovary and breast. I was dx when I had my ovary removed (didn't know it was melanoma). My breast met is still there and I just completed my second week of HD IL-2. I go in two weeks for scans to see if the IL-2 is working. I am braf negative, NRAS positive so was only offered IL-2 and ipi. I will start the ipi if scans show that IL-2 was ineffective.
I did not have interferon but if you want to know about IL-2, I'll behappy to share.
-
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