Advice Needed

BuzzBrown,

Did you have SNB or a CLND?  Where was your original primary?

I don't think there's a whole lot more available for you to do right now.  You should be staged at IIB and there's not a whole lot of adjuvant options out there for stage IIB .  You could check to see if there's any adjuvant clinical trials for IIB but I'd be surprised if there was. 

It would be highly unlikely insurance would approve a Brain MRI for IIB but you never know unless you ask.  The only way they'd probably do it would be if you were complaining of headaches. 

It's a helpless feeling to know you have a possiblity to recurr and there's nothing you can do.  I've been there myself.  One thing I did to combat that feeling was I really improved my nutrition and exercise.  I figured that's at least one thing I could control.  I also read a book called Anti-Cancer, A new way of Life.  It was a good book to get me in the right frame of mind to fight this awful disease.

Good luck.

Brian

BuzzBrown,

Did you have SNB or a CLND?  Where was your original primary?

I don't think there's a whole lot more available for you to do right now.  You should be staged at IIB and there's not a whole lot of adjuvant options out there for stage IIB .  You could check to see if there's any adjuvant clinical trials for IIB but I'd be surprised if there was. 

It would be highly unlikely insurance would approve a Brain MRI for IIB but you never know unless you ask.  The only way they'd probably do it would be if you were complaining of headaches. 

It's a helpless feeling to know you have a possiblity to recurr and there's nothing you can do.  I've been there myself.  One thing I did to combat that feeling was I really improved my nutrition and exercise.  I figured that's at least one thing I could control.  I also read a book called Anti-Cancer, A new way of Life.  It was a good book to get me in the right frame of mind to fight this awful disease.

Good luck.

Brian

BuzzBrown,

Did you have SNB or a CLND?  Where was your original primary?

I don't think there's a whole lot more available for you to do right now.  You should be staged at IIB and there's not a whole lot of adjuvant options out there for stage IIB .  You could check to see if there's any adjuvant clinical trials for IIB but I'd be surprised if there was. 

It would be highly unlikely insurance would approve a Brain MRI for IIB but you never know unless you ask.  The only way they'd probably do it would be if you were complaining of headaches. 

It's a helpless feeling to know you have a possiblity to recurr and there's nothing you can do.  I've been there myself.  One thing I did to combat that feeling was I really improved my nutrition and exercise.  I figured that's at least one thing I could control.  I also read a book called Anti-Cancer, A new way of Life.  It was a good book to get me in the right frame of mind to fight this awful disease.

Good luck.

Brian

Your experience sounds somewhat like ours, except that we've been a bit pushier.  If you're not already, you should be in the hands of a melanoma oncologist, preferably one at a melanoma center.  Since we have connected up with a melanoma center ourselves, the pace has picked up a few notches, and everyone knows what to do.  This was not the case when we were dealing with local resources.  Our local MDs are good people, and they are very knowledgeable in general, but melanoma oncology is a fast-moving field — too fast for people to follow when not in the field.

Breslow thickness of 2.65, Clark IV, no ulceration, and mitotic rate of 2 are all not too alarming.  The Breslow is a bit thick for comfort, but not horribly so.  It's entirely possible the surgery cleanly removed the melanoma from your body.  If the lymph nodes were negative, then melanoma cells certainly would not have bypassed them and gone into circulation.  Unfortunately melanoma cells can invade blood vessels directly and go into circulation that way.  Chances are excellent this did not happen.

You can have genetic testing on the tumor if there is unstained material left.  The tissue would have been formalin fixed and paraffin embedded (FFPE).  Unstained FFPE tissue is suitable for genetic testing.  The most useful genetic test is for the BRAF mutation status, particularly for BRAF V600E.  That is because there are BRAF inhibitors available to treat tumors with this mutation.  That said, if you do not have a lot of material available, you might want to wait on testing.  The tumor specimen should last indefinitely, and your lab will probably hold onto it for a decade or so (but ask them).  According to ET's oncologist, BRAF inhibitors should be reserved for fighting stage IV cancer, as they lose their effectiveness after about 10 mo of treatment.  It's better to use that 10 mo of efficacy in stage IV, when it can do more good.  Meanwhile, you might need the material to test for other things, for instance to qualify for a clinical trial.  I don't think info on BRAF mutation status would make much difference to you at this time.

A melanoma oncologist (not an oncologist who occasionally sees a melanoma patient) will be your ray of light.  You can discuss treatment options, get on a schedule for monitoring, and chart a path forward.

While you're waiting for appointments, STUDY, so that you'll know the right questions to ask and have a better idea the best paths to pursue.

You'll find this entire process moves at the speed of molasses.  I think you've experienced more of that already than most of us.  All these little delays add up.  ET and I have pushed and pushed and pushed to get everything done yesterday and move to the next step today.  After a month of pushing, pushing, pushing, we finally got a staging that was more advanced than we expected.  That opened us up to a phase III clinical trial comparing ipilimumab with nivolumab — two great drugs.  Our immediate reaction to the trial was "heck yes, of course!"  Unfortunately as we inquired the next day about the study, we found out that it had been closed only days before.  There was a long chain of "if only" events that got us to that point.  The worst of these for me was/is, "if only I had remembered to plug the answering machine back in after we tried receiving a fax."  That one cost us a week, because we missed a return call with an appointment scheduler.  I cried.  And then we moved forward with the options we still had, none of which were anywhere near as good.

Push!  Don't let needless delays happen!

Your experience sounds somewhat like ours, except that we've been a bit pushier.  If you're not already, you should be in the hands of a melanoma oncologist, preferably one at a melanoma center.  Since we have connected up with a melanoma center ourselves, the pace has picked up a few notches, and everyone knows what to do.  This was not the case when we were dealing with local resources.  Our local MDs are good people, and they are very knowledgeable in general, but melanoma oncology is a fast-moving field — too fast for people to follow when not in the field.

Breslow thickness of 2.65, Clark IV, no ulceration, and mitotic rate of 2 are all not too alarming.  The Breslow is a bit thick for comfort, but not horribly so.  It's entirely possible the surgery cleanly removed the melanoma from your body.  If the lymph nodes were negative, then melanoma cells certainly would not have bypassed them and gone into circulation.  Unfortunately melanoma cells can invade blood vessels directly and go into circulation that way.  Chances are excellent this did not happen.

You can have genetic testing on the tumor if there is unstained material left.  The tissue would have been formalin fixed and paraffin embedded (FFPE).  Unstained FFPE tissue is suitable for genetic testing.  The most useful genetic test is for the BRAF mutation status, particularly for BRAF V600E.  That is because there are BRAF inhibitors available to treat tumors with this mutation.  That said, if you do not have a lot of material available, you might want to wait on testing.  The tumor specimen should last indefinitely, and your lab will probably hold onto it for a decade or so (but ask them).  According to ET's oncologist, BRAF inhibitors should be reserved for fighting stage IV cancer, as they lose their effectiveness after about 10 mo of treatment.  It's better to use that 10 mo of efficacy in stage IV, when it can do more good.  Meanwhile, you might need the material to test for other things, for instance to qualify for a clinical trial.  I don't think info on BRAF mutation status would make much difference to you at this time.

A melanoma oncologist (not an oncologist who occasionally sees a melanoma patient) will be your ray of light.  You can discuss treatment options, get on a schedule for monitoring, and chart a path forward.

While you're waiting for appointments, STUDY, so that you'll know the right questions to ask and have a better idea the best paths to pursue.

You'll find this entire process moves at the speed of molasses.  I think you've experienced more of that already than most of us.  All these little delays add up.  ET and I have pushed and pushed and pushed to get everything done yesterday and move to the next step today.  After a month of pushing, pushing, pushing, we finally got a staging that was more advanced than we expected.  That opened us up to a phase III clinical trial comparing ipilimumab with nivolumab — two great drugs.  Our immediate reaction to the trial was "heck yes, of course!"  Unfortunately as we inquired the next day about the study, we found out that it had been closed only days before.  There was a long chain of "if only" events that got us to that point.  The worst of these for me was/is, "if only I had remembered to plug the answering machine back in after we tried receiving a fax."  That one cost us a week, because we missed a return call with an appointment scheduler.  I cried.  And then we moved forward with the options we still had, none of which were anywhere near as good.

Push!  Don't let needless delays happen!

Your experience sounds somewhat like ours, except that we've been a bit pushier.  If you're not already, you should be in the hands of a melanoma oncologist, preferably one at a melanoma center.  Since we have connected up with a melanoma center ourselves, the pace has picked up a few notches, and everyone knows what to do.  This was not the case when we were dealing with local resources.  Our local MDs are good people, and they are very knowledgeable in general, but melanoma oncology is a fast-moving field — too fast for people to follow when not in the field.

Breslow thickness of 2.65, Clark IV, no ulceration, and mitotic rate of 2 are all not too alarming.  The Breslow is a bit thick for comfort, but not horribly so.  It's entirely possible the surgery cleanly removed the melanoma from your body.  If the lymph nodes were negative, then melanoma cells certainly would not have bypassed them and gone into circulation.  Unfortunately melanoma cells can invade blood vessels directly and go into circulation that way.  Chances are excellent this did not happen.

You can have genetic testing on the tumor if there is unstained material left.  The tissue would have been formalin fixed and paraffin embedded (FFPE).  Unstained FFPE tissue is suitable for genetic testing.  The most useful genetic test is for the BRAF mutation status, particularly for BRAF V600E.  That is because there are BRAF inhibitors available to treat tumors with this mutation.  That said, if you do not have a lot of material available, you might want to wait on testing.  The tumor specimen should last indefinitely, and your lab will probably hold onto it for a decade or so (but ask them).  According to ET's oncologist, BRAF inhibitors should be reserved for fighting stage IV cancer, as they lose their effectiveness after about 10 mo of treatment.  It's better to use that 10 mo of efficacy in stage IV, when it can do more good.  Meanwhile, you might need the material to test for other things, for instance to qualify for a clinical trial.  I don't think info on BRAF mutation status would make much difference to you at this time.

A melanoma oncologist (not an oncologist who occasionally sees a melanoma patient) will be your ray of light.  You can discuss treatment options, get on a schedule for monitoring, and chart a path forward.

While you're waiting for appointments, STUDY, so that you'll know the right questions to ask and have a better idea the best paths to pursue.

You'll find this entire process moves at the speed of molasses.  I think you've experienced more of that already than most of us.  All these little delays add up.  ET and I have pushed and pushed and pushed to get everything done yesterday and move to the next step today.  After a month of pushing, pushing, pushing, we finally got a staging that was more advanced than we expected.  That opened us up to a phase III clinical trial comparing ipilimumab with nivolumab — two great drugs.  Our immediate reaction to the trial was "heck yes, of course!"  Unfortunately as we inquired the next day about the study, we found out that it had been closed only days before.  There was a long chain of "if only" events that got us to that point.  The worst of these for me was/is, "if only I had remembered to plug the answering machine back in after we tried receiving a fax."  That one cost us a week, because we missed a return call with an appointment scheduler.  I cried.  And then we moved forward with the options we still had, none of which were anywhere near as good.

Push!  Don't let needless delays happen!

It can seemingly be a razor thin line between not doing enough and doing too much. The sentinel lymph node biopsy isn't perfect, but it's a good procedure. The identified node(s) SHOULD be the node(s) most at risk, and it prevents the morbidity of a complete lymph node dissection (which sucks, as I've found out!).

Try to take some solace in the fact that your sentinel node was negative, but never be afraid to go get a second opinion!

I echo some of the lifestyle comments that Brian had. I think one of the best things any cancer patient can do is find ways to start living a healthier lifestyle. I read a lot on nutrition and cancer after my diagnosis and have completely renovated my diet (e.g. I dropped almost all processed foods, no sweets, eat whole grains, added lots of veggies, and picked up a nutrition system to supplement my diet and make sure I'm getting all the parts my immune system needs). Is it helping in my cancer fight? Quite possibly, but it's impossible to say. What I can say is that I'm a healthier person overall, and that's never a bad thing in this battle! I'm tolerating the dreaded interferon therapy well, and I have lots of energy for all that I'm going through. I'll never know exactly how much it helps prevent a relapse (which God willing never happens), but there's something to be said for feeling like you're taking your life into your own hands and doing what you can by living healthy! Same for exercise too, which definitely improves your overall health. I also had a bad tendency in the past to stay up too late and sleep too little ("Just one more episode…"), and I made the concscious choice finally that adequate, quality sleep was necessary for this battle.

Do what you can to live a healthy lifestyle (maybe you already are, and if so, kudos to you!), stay on the cutting edge of your treatment options, and have faith that you can beat this beast (because lots of people are!).

Best of luck to you!

It can seemingly be a razor thin line between not doing enough and doing too much. The sentinel lymph node biopsy isn't perfect, but it's a good procedure. The identified node(s) SHOULD be the node(s) most at risk, and it prevents the morbidity of a complete lymph node dissection (which sucks, as I've found out!).

Try to take some solace in the fact that your sentinel node was negative, but never be afraid to go get a second opinion!

I echo some of the lifestyle comments that Brian had. I think one of the best things any cancer patient can do is find ways to start living a healthier lifestyle. I read a lot on nutrition and cancer after my diagnosis and have completely renovated my diet (e.g. I dropped almost all processed foods, no sweets, eat whole grains, added lots of veggies, and picked up a nutrition system to supplement my diet and make sure I'm getting all the parts my immune system needs). Is it helping in my cancer fight? Quite possibly, but it's impossible to say. What I can say is that I'm a healthier person overall, and that's never a bad thing in this battle! I'm tolerating the dreaded interferon therapy well, and I have lots of energy for all that I'm going through. I'll never know exactly how much it helps prevent a relapse (which God willing never happens), but there's something to be said for feeling like you're taking your life into your own hands and doing what you can by living healthy! Same for exercise too, which definitely improves your overall health. I also had a bad tendency in the past to stay up too late and sleep too little ("Just one more episode…"), and I made the concscious choice finally that adequate, quality sleep was necessary for this battle.

Do what you can to live a healthy lifestyle (maybe you already are, and if so, kudos to you!), stay on the cutting edge of your treatment options, and have faith that you can beat this beast (because lots of people are!).

Best of luck to you!

It can seemingly be a razor thin line between not doing enough and doing too much. The sentinel lymph node biopsy isn't perfect, but it's a good procedure. The identified node(s) SHOULD be the node(s) most at risk, and it prevents the morbidity of a complete lymph node dissection (which sucks, as I've found out!).

Try to take some solace in the fact that your sentinel node was negative, but never be afraid to go get a second opinion!

I echo some of the lifestyle comments that Brian had. I think one of the best things any cancer patient can do is find ways to start living a healthier lifestyle. I read a lot on nutrition and cancer after my diagnosis and have completely renovated my diet (e.g. I dropped almost all processed foods, no sweets, eat whole grains, added lots of veggies, and picked up a nutrition system to supplement my diet and make sure I'm getting all the parts my immune system needs). Is it helping in my cancer fight? Quite possibly, but it's impossible to say. What I can say is that I'm a healthier person overall, and that's never a bad thing in this battle! I'm tolerating the dreaded interferon therapy well, and I have lots of energy for all that I'm going through. I'll never know exactly how much it helps prevent a relapse (which God willing never happens), but there's something to be said for feeling like you're taking your life into your own hands and doing what you can by living healthy! Same for exercise too, which definitely improves your overall health. I also had a bad tendency in the past to stay up too late and sleep too little ("Just one more episode…"), and I made the concscious choice finally that adequate, quality sleep was necessary for this battle.

Do what you can to live a healthy lifestyle (maybe you already are, and if so, kudos to you!), stay on the cutting edge of your treatment options, and have faith that you can beat this beast (because lots of people are!).

Best of luck to you!

I'd wait and go live life to the fullest.

It sounds like you caught it early!  Defineitly go for repeat check ups and scans.  When you do go to the doctor with an ache or pain, ask could this be a melanoma turmor?

The truth is we are on the edge of huges advances in Melanoma care.  In three to five years we will likely be able to treat Melanoma pretty successfully.  At the moment they are still playing guessing games.  Keytruda every 3 wks or Nivo every 2?  For how long? 2yrs? 6months?  What about IPI?  These questions will be answered in the next few years.   Look at how far we have come with HepC in the past few years.  That used to be a wait until you need a liver transplant and hope for the best.  Now there is a drug, albeit an expensive one, that offers a cure.  As long as your body can keep the cancer at bay for a few years, then I think you'll be all set. 

On the practial side, I'd look into things like life insurance, which you can't get easily right now but if you are cancer free for five year you might pick some up.   Also keep tabs on what is or is not covered on health insurance.  Right now you can say you are cancer free.  

Kathy

I'd wait and go live life to the fullest.

It sounds like you caught it early!  Defineitly go for repeat check ups and scans.  When you do go to the doctor with an ache or pain, ask could this be a melanoma turmor?

The truth is we are on the edge of huges advances in Melanoma care.  In three to five years we will likely be able to treat Melanoma pretty successfully.  At the moment they are still playing guessing games.  Keytruda every 3 wks or Nivo every 2?  For how long? 2yrs? 6months?  What about IPI?  These questions will be answered in the next few years.   Look at how far we have come with HepC in the past few years.  That used to be a wait until you need a liver transplant and hope for the best.  Now there is a drug, albeit an expensive one, that offers a cure.  As long as your body can keep the cancer at bay for a few years, then I think you'll be all set. 

On the practial side, I'd look into things like life insurance, which you can't get easily right now but if you are cancer free for five year you might pick some up.   Also keep tabs on what is or is not covered on health insurance.  Right now you can say you are cancer free.  

Kathy

I'd wait and go live life to the fullest.

It sounds like you caught it early!  Defineitly go for repeat check ups and scans.  When you do go to the doctor with an ache or pain, ask could this be a melanoma turmor?

The truth is we are on the edge of huges advances in Melanoma care.  In three to five years we will likely be able to treat Melanoma pretty successfully.  At the moment they are still playing guessing games.  Keytruda every 3 wks or Nivo every 2?  For how long? 2yrs? 6months?  What about IPI?  These questions will be answered in the next few years.   Look at how far we have come with HepC in the past few years.  That used to be a wait until you need a liver transplant and hope for the best.  Now there is a drug, albeit an expensive one, that offers a cure.  As long as your body can keep the cancer at bay for a few years, then I think you'll be all set. 

On the practial side, I'd look into things like life insurance, which you can't get easily right now but if you are cancer free for five year you might pick some up.   Also keep tabs on what is or is not covered on health insurance.  Right now you can say you are cancer free.  

Kathy