Stage IV M1 Dr. doing NO TX HEP

I can't really help you with where to go or really even what to do, but it sounds like you only have 2 easily accessable areas. The breast may not even be melanoma, may just be benign cyst or something. I think if I were in your shoes and could remove the one or 2 tumors (if the breast turns out to be mel) with surgery and not have to do anything else, I'd be thrilled. Treatments aren't fun and as you know, surgery is the best way to deal with melanoma if at all possible. As far as where it showed up first- melanoma doesn't have patterns and doesn't follow any rules. Yes, it can be common to have liver or lung mets, but my first mets (and still the most common area for mets) is subcutaneous- I have dozens of them. I have a couple of lung, which came up later and have had more in my brain than I ever wanted (1 in my brain would have been too many), but melanoma goes where it wants and does what it wants. Being 5 years out without any problems and now only having one (or maybe 2)- I think I would do the watch and wait- it could be that the surgery is all you need for another 5 years. If you're having regular checkups and scans you'll know if/when it becomes more agressive and other therapies might be needed. 

If you really feel the need to do SOMETHING (I'm a bit like that too, I don't like the idea of sittiing around waiting for it- I like to be more pro-active) go back and talk to your doctors about trying a course of Ipi after the surgeries, or one of the BRAF inhibitors/combos (assuming you are BRAF positive). I don't think the BRAF would be my choice (I saved them as a last resort), but this isn't my my body, my life, or my choice, it's yours. You may have trouble getting insurance to approve a therapy if there are only 2 areas that can be removed by surgery as well. If you are really that uncomfortable just doing surgery talk to your doctors and push for something and if they're worth their salt they'll listen, and advocae for you (i.e. with insurance companies). 

Good luck to you

I can't really help you with where to go or really even what to do, but it sounds like you only have 2 easily accessable areas. The breast may not even be melanoma, may just be benign cyst or something. I think if I were in your shoes and could remove the one or 2 tumors (if the breast turns out to be mel) with surgery and not have to do anything else, I'd be thrilled. Treatments aren't fun and as you know, surgery is the best way to deal with melanoma if at all possible. As far as where it showed up first- melanoma doesn't have patterns and doesn't follow any rules. Yes, it can be common to have liver or lung mets, but my first mets (and still the most common area for mets) is subcutaneous- I have dozens of them. I have a couple of lung, which came up later and have had more in my brain than I ever wanted (1 in my brain would have been too many), but melanoma goes where it wants and does what it wants. Being 5 years out without any problems and now only having one (or maybe 2)- I think I would do the watch and wait- it could be that the surgery is all you need for another 5 years. If you're having regular checkups and scans you'll know if/when it becomes more agressive and other therapies might be needed. 

If you really feel the need to do SOMETHING (I'm a bit like that too, I don't like the idea of sittiing around waiting for it- I like to be more pro-active) go back and talk to your doctors about trying a course of Ipi after the surgeries, or one of the BRAF inhibitors/combos (assuming you are BRAF positive). I don't think the BRAF would be my choice (I saved them as a last resort), but this isn't my my body, my life, or my choice, it's yours. You may have trouble getting insurance to approve a therapy if there are only 2 areas that can be removed by surgery as well. If you are really that uncomfortable just doing surgery talk to your doctors and push for something and if they're worth their salt they'll listen, and advocae for you (i.e. with insurance companies). 

Good luck to you

I can't really help you with where to go or really even what to do, but it sounds like you only have 2 easily accessable areas. The breast may not even be melanoma, may just be benign cyst or something. I think if I were in your shoes and could remove the one or 2 tumors (if the breast turns out to be mel) with surgery and not have to do anything else, I'd be thrilled. Treatments aren't fun and as you know, surgery is the best way to deal with melanoma if at all possible. As far as where it showed up first- melanoma doesn't have patterns and doesn't follow any rules. Yes, it can be common to have liver or lung mets, but my first mets (and still the most common area for mets) is subcutaneous- I have dozens of them. I have a couple of lung, which came up later and have had more in my brain than I ever wanted (1 in my brain would have been too many), but melanoma goes where it wants and does what it wants. Being 5 years out without any problems and now only having one (or maybe 2)- I think I would do the watch and wait- it could be that the surgery is all you need for another 5 years. If you're having regular checkups and scans you'll know if/when it becomes more agressive and other therapies might be needed. 

If you really feel the need to do SOMETHING (I'm a bit like that too, I don't like the idea of sittiing around waiting for it- I like to be more pro-active) go back and talk to your doctors about trying a course of Ipi after the surgeries, or one of the BRAF inhibitors/combos (assuming you are BRAF positive). I don't think the BRAF would be my choice (I saved them as a last resort), but this isn't my my body, my life, or my choice, it's yours. You may have trouble getting insurance to approve a therapy if there are only 2 areas that can be removed by surgery as well. If you are really that uncomfortable just doing surgery talk to your doctors and push for something and if they're worth their salt they'll listen, and advocae for you (i.e. with insurance companies). 

Good luck to you

When a patient has only one or two metastses that can be safely removed by surgery, that is often the best course of action.

You have to bear in mind that, despite the rapid improvements in melanoma treatments in the last few years, there is still no treatment that completely cures 100% of the patients. Every and any systemic treatment is a crap-shoot. Surgery is the only thing that is 100% effective. So many patients and oncologists prefer to surgically remove the tumors. And, indeed, there are several patients here who have been Stage IV NED (No Evidence of Disease) for many years by having isolated mets surgically removed whenever they pop up. So your doctors are not wrong. 

Meanwhile, as long as you are NED it is unlikely that your insurance company would pay hundreds of thousands of dollars for you to get systemic treatment– with no visible tumors, how would you even know if it was working? 

I understand that you want to do everything you can to prevent the melanoma from recurring. Absolutely. And there might be a few clinical trials for Stage IV NED patients. You could check the clinicaltrials.gov web site for that. But truth be told, there are few treatments available for either Stage III or Stage IV patients.

Let us hope that the suspicious area in your breast is not melanoma. Please do let us know your biopsy results. If it is melanoma, that might change your treatment options. 

When a patient has only one or two metastses that can be safely removed by surgery, that is often the best course of action.

You have to bear in mind that, despite the rapid improvements in melanoma treatments in the last few years, there is still no treatment that completely cures 100% of the patients. Every and any systemic treatment is a crap-shoot. Surgery is the only thing that is 100% effective. So many patients and oncologists prefer to surgically remove the tumors. And, indeed, there are several patients here who have been Stage IV NED (No Evidence of Disease) for many years by having isolated mets surgically removed whenever they pop up. So your doctors are not wrong. 

Meanwhile, as long as you are NED it is unlikely that your insurance company would pay hundreds of thousands of dollars for you to get systemic treatment– with no visible tumors, how would you even know if it was working? 

I understand that you want to do everything you can to prevent the melanoma from recurring. Absolutely. And there might be a few clinical trials for Stage IV NED patients. You could check the clinicaltrials.gov web site for that. But truth be told, there are few treatments available for either Stage III or Stage IV patients.

Let us hope that the suspicious area in your breast is not melanoma. Please do let us know your biopsy results. If it is melanoma, that might change your treatment options. 

When a patient has only one or two metastses that can be safely removed by surgery, that is often the best course of action.

You have to bear in mind that, despite the rapid improvements in melanoma treatments in the last few years, there is still no treatment that completely cures 100% of the patients. Every and any systemic treatment is a crap-shoot. Surgery is the only thing that is 100% effective. So many patients and oncologists prefer to surgically remove the tumors. And, indeed, there are several patients here who have been Stage IV NED (No Evidence of Disease) for many years by having isolated mets surgically removed whenever they pop up. So your doctors are not wrong. 

Meanwhile, as long as you are NED it is unlikely that your insurance company would pay hundreds of thousands of dollars for you to get systemic treatment– with no visible tumors, how would you even know if it was working? 

I understand that you want to do everything you can to prevent the melanoma from recurring. Absolutely. And there might be a few clinical trials for Stage IV NED patients. You could check the clinicaltrials.gov web site for that. But truth be told, there are few treatments available for either Stage III or Stage IV patients.

Let us hope that the suspicious area in your breast is not melanoma. Please do let us know your biopsy results. If it is melanoma, that might change your treatment options. 

Hey SJ,

Sorry you are having to contemplate such things.  I think it is imperative that you seek out a melanoma specialist.  A general oncologist should be happy to refer you to one, or you can find one on your own.  And, it you don't have a melanoma specialist who is LISTENING and HELPING…find a different one!!  It makes a tremendous difference in your care and options. (See my blog post from 2/2/2013) 

But, first things first.  You need to find out what the lesion in your breast is.  Is it melanoma or not?  If it is, be sure that BRAF testing is done on it, if you do not know your BRAF status already.

Second, especially if the breast lesion is positive, but even it it isn't…I would have an MRI done of my brain.  A PET is ok for a look at the body, but not so good for the brain. (You can see the post I made explaining the difference between MRI, CT, and PET scans on momof4boys 1/21 post on this forum "ct vs pet".)

Yes, many people do fine with surgical "cherry picking"…I have friends that made it out 5, 12, 17 years….unfortunately, they all happen to have active melanoma currently.  NOT that all folks who take that tack end up that way.  I made it 7 years myself.  (I have a post re: cheery picking on my blog…June 3, 2012)

But…to your NED but looking for treatment question.  I was NED, Stage IV, when I started a Nivolumab 2 1/2 year study at Moffitt over 3 years ago and remain NED.  The patients in my NED arm in that trial have all done very well.  Obviously time will tell, but we are beating the odds. (The data is on the June 11, 2013 post on my blog.) Dr. Weber is convinced that treating patients when they are NED is the only way to really prevent patients passing literally and figuratively into active disease states. 

So…what are your options?  Cherry picking, certainly.  But, there are many adjuvant trials ongoing…NOW.  My own trial at Moffitt for Resected Stage IIIC or IV, NED, giving treatment with the anti-PD1 product Nivolumab is still recruiting.  There is a trial at 208 locations recruiting patients with resected cutaneous BRAF mutant melanoma, Stage IIC or III using Vemurafenib as adjuvant therapy.  (If you are interested…I would still check here as there may be Stage IV studies ongoing at the same location.  Additionally, sometimes they make exceptions especially in cases like yours if there is no visceral involvement.)  Lots of BRAF/MEK studies are recruiting…some are IIIC, but I would still ask.  There are several vaccine trials recruiting currently, not to mention some with various combo's of ipi.

So…lots of options (thankfully) and lots of decisions.  Please see a melanoma specialist to help guide you.  Ultimately, however, it is your decision and only you will know what is best for you.

Wishing you my best, Celeste

Hey SJ,

Sorry you are having to contemplate such things.  I think it is imperative that you seek out a melanoma specialist.  A general oncologist should be happy to refer you to one, or you can find one on your own.  And, it you don't have a melanoma specialist who is LISTENING and HELPING…find a different one!!  It makes a tremendous difference in your care and options. (See my blog post from 2/2/2013) 

But, first things first.  You need to find out what the lesion in your breast is.  Is it melanoma or not?  If it is, be sure that BRAF testing is done on it, if you do not know your BRAF status already.

Second, especially if the breast lesion is positive, but even it it isn't…I would have an MRI done of my brain.  A PET is ok for a look at the body, but not so good for the brain. (You can see the post I made explaining the difference between MRI, CT, and PET scans on momof4boys 1/21 post on this forum "ct vs pet".)

Yes, many people do fine with surgical "cherry picking"…I have friends that made it out 5, 12, 17 years….unfortunately, they all happen to have active melanoma currently.  NOT that all folks who take that tack end up that way.  I made it 7 years myself.  (I have a post re: cheery picking on my blog…June 3, 2012)

But…to your NED but looking for treatment question.  I was NED, Stage IV, when I started a Nivolumab 2 1/2 year study at Moffitt over 3 years ago and remain NED.  The patients in my NED arm in that trial have all done very well.  Obviously time will tell, but we are beating the odds. (The data is on the June 11, 2013 post on my blog.) Dr. Weber is convinced that treating patients when they are NED is the only way to really prevent patients passing literally and figuratively into active disease states. 

So…what are your options?  Cherry picking, certainly.  But, there are many adjuvant trials ongoing…NOW.  My own trial at Moffitt for Resected Stage IIIC or IV, NED, giving treatment with the anti-PD1 product Nivolumab is still recruiting.  There is a trial at 208 locations recruiting patients with resected cutaneous BRAF mutant melanoma, Stage IIC or III using Vemurafenib as adjuvant therapy.  (If you are interested…I would still check here as there may be Stage IV studies ongoing at the same location.  Additionally, sometimes they make exceptions especially in cases like yours if there is no visceral involvement.)  Lots of BRAF/MEK studies are recruiting…some are IIIC, but I would still ask.  There are several vaccine trials recruiting currently, not to mention some with various combo's of ipi.

So…lots of options (thankfully) and lots of decisions.  Please see a melanoma specialist to help guide you.  Ultimately, however, it is your decision and only you will know what is best for you.

Wishing you my best, Celeste

Hey SJ,

Sorry you are having to contemplate such things.  I think it is imperative that you seek out a melanoma specialist.  A general oncologist should be happy to refer you to one, or you can find one on your own.  And, it you don't have a melanoma specialist who is LISTENING and HELPING…find a different one!!  It makes a tremendous difference in your care and options. (See my blog post from 2/2/2013) 

But, first things first.  You need to find out what the lesion in your breast is.  Is it melanoma or not?  If it is, be sure that BRAF testing is done on it, if you do not know your BRAF status already.

Second, especially if the breast lesion is positive, but even it it isn't…I would have an MRI done of my brain.  A PET is ok for a look at the body, but not so good for the brain. (You can see the post I made explaining the difference between MRI, CT, and PET scans on momof4boys 1/21 post on this forum "ct vs pet".)

Yes, many people do fine with surgical "cherry picking"…I have friends that made it out 5, 12, 17 years….unfortunately, they all happen to have active melanoma currently.  NOT that all folks who take that tack end up that way.  I made it 7 years myself.  (I have a post re: cheery picking on my blog…June 3, 2012)

But…to your NED but looking for treatment question.  I was NED, Stage IV, when I started a Nivolumab 2 1/2 year study at Moffitt over 3 years ago and remain NED.  The patients in my NED arm in that trial have all done very well.  Obviously time will tell, but we are beating the odds. (The data is on the June 11, 2013 post on my blog.) Dr. Weber is convinced that treating patients when they are NED is the only way to really prevent patients passing literally and figuratively into active disease states. 

So…what are your options?  Cherry picking, certainly.  But, there are many adjuvant trials ongoing…NOW.  My own trial at Moffitt for Resected Stage IIIC or IV, NED, giving treatment with the anti-PD1 product Nivolumab is still recruiting.  There is a trial at 208 locations recruiting patients with resected cutaneous BRAF mutant melanoma, Stage IIC or III using Vemurafenib as adjuvant therapy.  (If you are interested…I would still check here as there may be Stage IV studies ongoing at the same location.  Additionally, sometimes they make exceptions especially in cases like yours if there is no visceral involvement.)  Lots of BRAF/MEK studies are recruiting…some are IIIC, but I would still ask.  There are several vaccine trials recruiting currently, not to mention some with various combo's of ipi.

So…lots of options (thankfully) and lots of decisions.  Please see a melanoma specialist to help guide you.  Ultimately, however, it is your decision and only you will know what is best for you.

Wishing you my best, Celeste

Had a little look and found this additional study at ClinicalTrials.gov

Search for: NCT01970358.  Uses your tumor (therefore you would need to be into this before tumor removal) to make a vaccine for your cancer. Not yet open.  At Dana Farber Institute in Mass. 

This is a bit presumptive, since it certainly is possible that your breast lesion is NOT melanoma…but just to show the wide variety of options there may be for you…though effort and determination is certainly placed on the shoulders of the patient!

Hang in there.  Hoping for the best for you.  C

Had a little look and found this additional study at ClinicalTrials.gov

Search for: NCT01970358.  Uses your tumor (therefore you would need to be into this before tumor removal) to make a vaccine for your cancer. Not yet open.  At Dana Farber Institute in Mass. 

This is a bit presumptive, since it certainly is possible that your breast lesion is NOT melanoma…but just to show the wide variety of options there may be for you…though effort and determination is certainly placed on the shoulders of the patient!

Hang in there.  Hoping for the best for you.  C

Had a little look and found this additional study at ClinicalTrials.gov

Search for: NCT01970358.  Uses your tumor (therefore you would need to be into this before tumor removal) to make a vaccine for your cancer. Not yet open.  At Dana Farber Institute in Mass. 

This is a bit presumptive, since it certainly is possible that your breast lesion is NOT melanoma…but just to show the wide variety of options there may be for you…though effort and determination is certainly placed on the shoulders of the patient!

Hang in there.  Hoping for the best for you.  C

Hi – I agree with some of what the others have stated.  My husband is stage 4 & has never had any type of treatment.  So far, surgery has been able to rid him of the beast.  That said, everyone has to make their own educated decisons based on their situation.  My thoughts with my husband are that if he is currently NED, then what is there to treat and how would we know if the treatment is keeping a reoccurrance at bay?  Not knowing what affect a treatment would have on my husband's quality of life, I would rather stay closely connected to our team of doctors….CT's every 3 months, PET's if necessary, MRI's a few times a year along with body checks….and if something comes up, we then resort to the necessary treatments. These are just my thoughts, at the moment 🙂

I live in Illinois – here are a few Melanoma specialists in the Chicago area.

Dr Kuzel at Northwestern

Dr Gajewski at U of Chicago

Dr Jon Richards at Lutheran General

Dr Joe Clark at Loyola

Julie

Hi – I agree with some of what the others have stated.  My husband is stage 4 & has never had any type of treatment.  So far, surgery has been able to rid him of the beast.  That said, everyone has to make their own educated decisons based on their situation.  My thoughts with my husband are that if he is currently NED, then what is there to treat and how would we know if the treatment is keeping a reoccurrance at bay?  Not knowing what affect a treatment would have on my husband's quality of life, I would rather stay closely connected to our team of doctors….CT's every 3 months, PET's if necessary, MRI's a few times a year along with body checks….and if something comes up, we then resort to the necessary treatments. These are just my thoughts, at the moment 🙂

I live in Illinois – here are a few Melanoma specialists in the Chicago area.

Dr Kuzel at Northwestern

Dr Gajewski at U of Chicago

Dr Jon Richards at Lutheran General

Dr Joe Clark at Loyola

Julie

Hi – I agree with some of what the others have stated.  My husband is stage 4 & has never had any type of treatment.  So far, surgery has been able to rid him of the beast.  That said, everyone has to make their own educated decisons based on their situation.  My thoughts with my husband are that if he is currently NED, then what is there to treat and how would we know if the treatment is keeping a reoccurrance at bay?  Not knowing what affect a treatment would have on my husband's quality of life, I would rather stay closely connected to our team of doctors….CT's every 3 months, PET's if necessary, MRI's a few times a year along with body checks….and if something comes up, we then resort to the necessary treatments. These are just my thoughts, at the moment 🙂

I live in Illinois – here are a few Melanoma specialists in the Chicago area.

Dr Kuzel at Northwestern

Dr Gajewski at U of Chicago

Dr Jon Richards at Lutheran General

Dr Joe Clark at Loyola

Julie

I agree with lots of what others have already said. I will add that there is a wonderful mel specialist in St Louis. Not sure where in IL you are. We are in S Indiana and St Louis is only abt 3 hrs drive. Dr Linette is his name. They have a mel specialty clinic there and also do lots of research.

Also, My only treatment for years was surgical removal of single mets.

Tina

I agree with lots of what others have already said. I will add that there is a wonderful mel specialist in St Louis. Not sure where in IL you are. We are in S Indiana and St Louis is only abt 3 hrs drive. Dr Linette is his name. They have a mel specialty clinic there and also do lots of research.

Also, My only treatment for years was surgical removal of single mets.

Tina

I agree with lots of what others have already said. I will add that there is a wonderful mel specialist in St Louis. Not sure where in IL you are. We are in S Indiana and St Louis is only abt 3 hrs drive. Dr Linette is his name. They have a mel specialty clinic there and also do lots of research.

Also, My only treatment for years was surgical removal of single mets.

Tina