Stage 4 Melanoma

Tritzy, I am very sorry to hear of your boyfriend's scary situation. Of course he is frightened and angry– I think all of us (patients and caregivers alike) feel that way sometimes. This forum is very good for sharing experiences and information about actual melanoma treatments. If you or your boyfriend have questions about that, please post them here. However, for the equally important emotional and psychological aspects of melanoma, I think that the best place for you to get help is at the Melanoma International Forum site, especially the "For Caregivers Only" forum. Go to http://forum.melanomainternational.org/mif/ They are very active.

The only thing I will say about your boyfriend's behavior is that an occassional lashing out at you might be expected, but anything more than that should not be tolerated. Listen to your friends. 

Tritzy, I am very sorry to hear of your boyfriend's scary situation. Of course he is frightened and angry– I think all of us (patients and caregivers alike) feel that way sometimes. This forum is very good for sharing experiences and information about actual melanoma treatments. If you or your boyfriend have questions about that, please post them here. However, for the equally important emotional and psychological aspects of melanoma, I think that the best place for you to get help is at the Melanoma International Forum site, especially the "For Caregivers Only" forum. Go to http://forum.melanomainternational.org/mif/ They are very active.

The only thing I will say about your boyfriend's behavior is that an occassional lashing out at you might be expected, but anything more than that should not be tolerated. Listen to your friends. 

Tritzy, I am very sorry to hear of your boyfriend's scary situation. Of course he is frightened and angry– I think all of us (patients and caregivers alike) feel that way sometimes. This forum is very good for sharing experiences and information about actual melanoma treatments. If you or your boyfriend have questions about that, please post them here. However, for the equally important emotional and psychological aspects of melanoma, I think that the best place for you to get help is at the Melanoma International Forum site, especially the "For Caregivers Only" forum. Go to http://forum.melanomainternational.org/mif/ They are very active.

The only thing I will say about your boyfriend's behavior is that an occassional lashing out at you might be expected, but anything more than that should not be tolerated. Listen to your friends. 

Until you get results from the PETscan, you won’t know if it’s stage 4 or not. It’s only stage 4 when it’s spread to distant organs. If it’s only on his skin, he’s most likely only stage 1 or 2. Even if it’s stage 4 (which it most likely is not), there are two new treatments…Yervoy and Zelboraf which are extending lives of stage 4 patients for years! If you’re reading information on the Internet, make sure to read current (only from 2012!) information. Things have vastly changed in the past 2 years. waiting is the hardest part, but try to stay calm and patient until you know for sure what you’re dealing with. Stage 4 metastatic melanoma is vastly different than stage 1 melanoma that is contained to the skin.

Until you get results from the PETscan, you won’t know if it’s stage 4 or not. It’s only stage 4 when it’s spread to distant organs. If it’s only on his skin, he’s most likely only stage 1 or 2. Even if it’s stage 4 (which it most likely is not), there are two new treatments…Yervoy and Zelboraf which are extending lives of stage 4 patients for years! If you’re reading information on the Internet, make sure to read current (only from 2012!) information. Things have vastly changed in the past 2 years. waiting is the hardest part, but try to stay calm and patient until you know for sure what you’re dealing with. Stage 4 metastatic melanoma is vastly different than stage 1 melanoma that is contained to the skin.

Until you get results from the PETscan, you won’t know if it’s stage 4 or not. It’s only stage 4 when it’s spread to distant organs. If it’s only on his skin, he’s most likely only stage 1 or 2. Even if it’s stage 4 (which it most likely is not), there are two new treatments…Yervoy and Zelboraf which are extending lives of stage 4 patients for years! If you’re reading information on the Internet, make sure to read current (only from 2012!) information. Things have vastly changed in the past 2 years. waiting is the hardest part, but try to stay calm and patient until you know for sure what you’re dealing with. Stage 4 metastatic melanoma is vastly different than stage 1 melanoma that is contained to the skin.

Okay, step back a moment and breathe deep for one minute…………..no kidding………..actually do that.

Now I want you to understand something while you are breathing and reading this.  A pathology report alone is not an absolute diagnosis of Stage IV Melanoma.  Please read that again.

You are scared, I get that.  He is scared, I get that. You are probably angry, I get that.  He is angry, I get that.  Probably terrified would be a better description…………and I get that too.  And both of you are right now trying to swin in that swirling  cesspool of uncertainty and fear.  I get that too.

And, all of that is normal when first hearing a diagnosis of melanoma.

Breathe deep some more, okay?

Again, both the fear and uncertainty are understandable…………..and a very normal reaction to a diagnosis of melanoma.

You feel alone.  He feels alone.  And you are both scared.  Again, normal.

Now for a few specifics.  Pathology reports, by themselves often needlessly scare people.  These reports almost always refer to levels on invasion………….that level of invasion (IV in this case)  is not the same as overall patient staging.

I clearly get the sense that you are just short of frantic………that too is understandable and normal…………….but do understand this : NO pathology stand alone report can diagnose a patient as Stage IV.  None.

So start there and back up.

I am not a doctor, but I actually AM a Stage IV patient, and what I would suggest to you is this:  stop, and I mean right now, stop………….reading about melanoma on the internet and instead pick a forum (like this, but there are others) where you can ask questions and get answers from actual people who have been there and done that or who are here and doing it.

It is very important to do so.  Raw information, though usefull, is hardly a substitute for the actual experiences of others.  You will find  those "others" here and at a few other places.

To close, the turmoil that you each feel is understandable and normal; yes you as a couple compound that in your interaction; but that is okay.

Breathe deep, express your concerns and always know that many here are more than  willing to extend a digital hand.

Cheers,

Charlie S

 

 

 

Okay, step back a moment and breathe deep for one minute…………..no kidding………..actually do that.

Now I want you to understand something while you are breathing and reading this.  A pathology report alone is not an absolute diagnosis of Stage IV Melanoma.  Please read that again.

You are scared, I get that.  He is scared, I get that. You are probably angry, I get that.  He is angry, I get that.  Probably terrified would be a better description…………and I get that too.  And both of you are right now trying to swin in that swirling  cesspool of uncertainty and fear.  I get that too.

And, all of that is normal when first hearing a diagnosis of melanoma.

Breathe deep some more, okay?

Again, both the fear and uncertainty are understandable…………..and a very normal reaction to a diagnosis of melanoma.

You feel alone.  He feels alone.  And you are both scared.  Again, normal.

Now for a few specifics.  Pathology reports, by themselves often needlessly scare people.  These reports almost always refer to levels on invasion………….that level of invasion (IV in this case)  is not the same as overall patient staging.

I clearly get the sense that you are just short of frantic………that too is understandable and normal…………….but do understand this : NO pathology stand alone report can diagnose a patient as Stage IV.  None.

So start there and back up.

I am not a doctor, but I actually AM a Stage IV patient, and what I would suggest to you is this:  stop, and I mean right now, stop………….reading about melanoma on the internet and instead pick a forum (like this, but there are others) where you can ask questions and get answers from actual people who have been there and done that or who are here and doing it.

It is very important to do so.  Raw information, though usefull, is hardly a substitute for the actual experiences of others.  You will find  those "others" here and at a few other places.

To close, the turmoil that you each feel is understandable and normal; yes you as a couple compound that in your interaction; but that is okay.

Breathe deep, express your concerns and always know that many here are more than  willing to extend a digital hand.

Cheers,

Charlie S

 

 

 

Okay, step back a moment and breathe deep for one minute…………..no kidding………..actually do that.

Now I want you to understand something while you are breathing and reading this.  A pathology report alone is not an absolute diagnosis of Stage IV Melanoma.  Please read that again.

You are scared, I get that.  He is scared, I get that. You are probably angry, I get that.  He is angry, I get that.  Probably terrified would be a better description…………and I get that too.  And both of you are right now trying to swin in that swirling  cesspool of uncertainty and fear.  I get that too.

And, all of that is normal when first hearing a diagnosis of melanoma.

Breathe deep some more, okay?

Again, both the fear and uncertainty are understandable…………..and a very normal reaction to a diagnosis of melanoma.

You feel alone.  He feels alone.  And you are both scared.  Again, normal.

Now for a few specifics.  Pathology reports, by themselves often needlessly scare people.  These reports almost always refer to levels on invasion………….that level of invasion (IV in this case)  is not the same as overall patient staging.

I clearly get the sense that you are just short of frantic………that too is understandable and normal…………….but do understand this : NO pathology stand alone report can diagnose a patient as Stage IV.  None.

So start there and back up.

I am not a doctor, but I actually AM a Stage IV patient, and what I would suggest to you is this:  stop, and I mean right now, stop………….reading about melanoma on the internet and instead pick a forum (like this, but there are others) where you can ask questions and get answers from actual people who have been there and done that or who are here and doing it.

It is very important to do so.  Raw information, though usefull, is hardly a substitute for the actual experiences of others.  You will find  those "others" here and at a few other places.

To close, the turmoil that you each feel is understandable and normal; yes you as a couple compound that in your interaction; but that is okay.

Breathe deep, express your concerns and always know that many here are more than  willing to extend a digital hand.

Cheers,

Charlie S

 

 

 

Hello,

Sorry you have had to meet here but let it be known that 3mm deep does not make a person on his/her death bed.  I started at 10mm deep and started at a stage 3 and that was 5 years ago and I am still here.

When the tests are done make sure you find a melanoma specialist to be treated by.  Many clinical trials are out there and he may fit into one of them if needed.

Hello,

Sorry you have had to meet here but let it be known that 3mm deep does not make a person on his/her death bed.  I started at 10mm deep and started at a stage 3 and that was 5 years ago and I am still here.

When the tests are done make sure you find a melanoma specialist to be treated by.  Many clinical trials are out there and he may fit into one of them if needed.

Hello,

Sorry you have had to meet here but let it be known that 3mm deep does not make a person on his/her death bed.  I started at 10mm deep and started at a stage 3 and that was 5 years ago and I am still here.

When the tests are done make sure you find a melanoma specialist to be treated by.  Many clinical trials are out there and he may fit into one of them if needed.

Something else to keep in mind when you do get the results:  My first biopsy was ordered by my GP and she gave me the results. Though she didn't actually give me a prognosis, her tone and attitude made me feel like it was a death sentence. When I finally got to a melanoma oncologist, the attitude was much more upbeat and optimistic because she knew what was happening in the field and had patients who were alive well past the expiration date you'll get from non-specialists and old internet articles.   Dan

Something else to keep in mind when you do get the results:  My first biopsy was ordered by my GP and she gave me the results. Though she didn't actually give me a prognosis, her tone and attitude made me feel like it was a death sentence. When I finally got to a melanoma oncologist, the attitude was much more upbeat and optimistic because she knew what was happening in the field and had patients who were alive well past the expiration date you'll get from non-specialists and old internet articles.   Dan

Something else to keep in mind when you do get the results:  My first biopsy was ordered by my GP and she gave me the results. Though she didn't actually give me a prognosis, her tone and attitude made me feel like it was a death sentence. When I finally got to a melanoma oncologist, the attitude was much more upbeat and optimistic because she knew what was happening in the field and had patients who were alive well past the expiration date you'll get from non-specialists and old internet articles.   Dan

I am sorry for your boyfriends situation, but no one should take their situation and use it to intimitate someone else. What is scary ismthat you do not evenhave a diagnosis yet.
I have a few other cancers, metastic, now dealing with either melanoma or non hopykins lymphoma. Figure we all have to die sometime. This does not mean give up. Fight till the end. Taking it out on others is silly. He needs to try Yoga.
Do not let him mistreat you. We all are going to die. There is no sense taking out your fear of death on others. If he does not lighten up you need to leave him. Do not let,his selfishness destroy your life. If he can not deal withmthis, you can not help him.

I am sorry for your boyfriends situation, but no one should take their situation and use it to intimitate someone else. What is scary ismthat you do not evenhave a diagnosis yet.
I have a few other cancers, metastic, now dealing with either melanoma or non hopykins lymphoma. Figure we all have to die sometime. This does not mean give up. Fight till the end. Taking it out on others is silly. He needs to try Yoga.
Do not let him mistreat you. We all are going to die. There is no sense taking out your fear of death on others. If he does not lighten up you need to leave him. Do not let,his selfishness destroy your life. If he can not deal withmthis, you can not help him.

I am sorry for your boyfriends situation, but no one should take their situation and use it to intimitate someone else. What is scary ismthat you do not evenhave a diagnosis yet.
I have a few other cancers, metastic, now dealing with either melanoma or non hopykins lymphoma. Figure we all have to die sometime. This does not mean give up. Fight till the end. Taking it out on others is silly. He needs to try Yoga.
Do not let him mistreat you. We all are going to die. There is no sense taking out your fear of death on others. If he does not lighten up you need to leave him. Do not let,his selfishness destroy your life. If he can not deal withmthis, you can not help him.