Am I Crazy? Stage 4 Treatment Options

Hi Kevin – personally, that is what we are doing right now. My husband is stage 4 NED and are doing 3 month scans through 2015. MRI's every 6 months. I guess my thought process is I don't want to treat something if I don't know what I'm treating. Like you said, I'd rather save it until we absolutely need it. My husband is healthy & strong. I hope he stays that way. 

Praying you stay NED so you will never ever need any treatments. 

Hi Kevin – personally, that is what we are doing right now. My husband is stage 4 NED and are doing 3 month scans through 2015. MRI's every 6 months. I guess my thought process is I don't want to treat something if I don't know what I'm treating. Like you said, I'd rather save it until we absolutely need it. My husband is healthy & strong. I hope he stays that way. 

Praying you stay NED so you will never ever need any treatments. 

Hi Kevin – personally, that is what we are doing right now. My husband is stage 4 NED and are doing 3 month scans through 2015. MRI's every 6 months. I guess my thought process is I don't want to treat something if I don't know what I'm treating. Like you said, I'd rather save it until we absolutely need it. My husband is healthy & strong. I hope he stays that way. 

Praying you stay NED so you will never ever need any treatments. 

Kevin, I'm not NED, but am stable.  There is one person who has really pushed me to stop what i'm doing to try the treatment they are pushing.  At the rate the treatments are advancing, I'll just continue where I'm at while somewhat "waiting" to.see what is next.  Aat least whaat I'm on is an easier wait the interferon!  You siund reasonable to me.

Kevin, I'm not NED, but am stable.  There is one person who has really pushed me to stop what i'm doing to try the treatment they are pushing.  At the rate the treatments are advancing, I'll just continue where I'm at while somewhat "waiting" to.see what is next.  Aat least whaat I'm on is an easier wait the interferon!  You siund reasonable to me.

Kevin, I'm not NED, but am stable.  There is one person who has really pushed me to stop what i'm doing to try the treatment they are pushing.  At the rate the treatments are advancing, I'll just continue where I'm at while somewhat "waiting" to.see what is next.  Aat least whaat I'm on is an easier wait the interferon!  You siund reasonable to me.

Hi Kevin,

No, you're not crazy, it's a choice we all have to make and it's not an easy one!

From the get go, I was diagnosed Stage IV, with no primary! 

Recently, after spending the past 2 years discussing other options, clinical trials and mostly considering the TIL treatment with my oncologist, at one point considering going to NCI but feeling I had time and knowing the TIL treatment would be coming fairly soon to SCCA,  I decided to wait.  When the treatment was finally available here, I changed my mind when my scans reflected very limited growth in my tumors.  Instead, I decided to do a CLND of the right axilla, which now makes me NED!! This was a very difficult but strong decision that was completely made by me and went against the medical direction of my oncologist.

Early on in my diagnosis a friend suggested the Budwig Diet, which follows a diet rich in flax oil.  That is what I follow and I attribute to my slow progression of this disease.  I feel this diet has made my body strong and although I don't know if it can keep me cancer free, I do feel it has slowed the progression and has stepped up my immune system, which seems to be doing a good job now of keeping the melanoma in check.  I feel I've created an inhospitable enviornment for melanoma cancer cells to grow in : ))    

It's still a precarious place to be but my thought is, if I can hold out a while longer until the next reoccurence then there will be that much more knowledge out there and better treatments for me that hopefully will target my specific melanoma signature and will be less toxic to my body and hopefully a cure!  

Just to be sure, I am not a vegetarian or anti-McDonalds kind of person!  For the most part,  I just follow a good well balanced diet and supplement with the Budwig flax protoccol.

Wishing you great success Kevin in your melanoma journey!

Swanee

Hi Kevin,

No, you're not crazy, it's a choice we all have to make and it's not an easy one!

From the get go, I was diagnosed Stage IV, with no primary! 

Recently, after spending the past 2 years discussing other options, clinical trials and mostly considering the TIL treatment with my oncologist, at one point considering going to NCI but feeling I had time and knowing the TIL treatment would be coming fairly soon to SCCA,  I decided to wait.  When the treatment was finally available here, I changed my mind when my scans reflected very limited growth in my tumors.  Instead, I decided to do a CLND of the right axilla, which now makes me NED!! This was a very difficult but strong decision that was completely made by me and went against the medical direction of my oncologist.

Early on in my diagnosis a friend suggested the Budwig Diet, which follows a diet rich in flax oil.  That is what I follow and I attribute to my slow progression of this disease.  I feel this diet has made my body strong and although I don't know if it can keep me cancer free, I do feel it has slowed the progression and has stepped up my immune system, which seems to be doing a good job now of keeping the melanoma in check.  I feel I've created an inhospitable enviornment for melanoma cancer cells to grow in : ))    

It's still a precarious place to be but my thought is, if I can hold out a while longer until the next reoccurence then there will be that much more knowledge out there and better treatments for me that hopefully will target my specific melanoma signature and will be less toxic to my body and hopefully a cure!  

Just to be sure, I am not a vegetarian or anti-McDonalds kind of person!  For the most part,  I just follow a good well balanced diet and supplement with the Budwig flax protoccol.

Wishing you great success Kevin in your melanoma journey!

Swanee

Hi Kevin,

No, you're not crazy, it's a choice we all have to make and it's not an easy one!

From the get go, I was diagnosed Stage IV, with no primary! 

Recently, after spending the past 2 years discussing other options, clinical trials and mostly considering the TIL treatment with my oncologist, at one point considering going to NCI but feeling I had time and knowing the TIL treatment would be coming fairly soon to SCCA,  I decided to wait.  When the treatment was finally available here, I changed my mind when my scans reflected very limited growth in my tumors.  Instead, I decided to do a CLND of the right axilla, which now makes me NED!! This was a very difficult but strong decision that was completely made by me and went against the medical direction of my oncologist.

Early on in my diagnosis a friend suggested the Budwig Diet, which follows a diet rich in flax oil.  That is what I follow and I attribute to my slow progression of this disease.  I feel this diet has made my body strong and although I don't know if it can keep me cancer free, I do feel it has slowed the progression and has stepped up my immune system, which seems to be doing a good job now of keeping the melanoma in check.  I feel I've created an inhospitable enviornment for melanoma cancer cells to grow in : ))    

It's still a precarious place to be but my thought is, if I can hold out a while longer until the next reoccurence then there will be that much more knowledge out there and better treatments for me that hopefully will target my specific melanoma signature and will be less toxic to my body and hopefully a cure!  

Just to be sure, I am not a vegetarian or anti-McDonalds kind of person!  For the most part,  I just follow a good well balanced diet and supplement with the Budwig flax protoccol.

Wishing you great success Kevin in your melanoma journey!

Swanee

Hi Kevin,

Sounds sane to me!

I've been in this place (Stage 4 NED), and made the choice to watch and wait, try to stay healthy, while being proactive about checking things out. I don't see compelling evidence for a prophylactic use of systemic therapies or vaccines.

Paul

Hi Kevin,

Sounds sane to me!

I've been in this place (Stage 4 NED), and made the choice to watch and wait, try to stay healthy, while being proactive about checking things out. I don't see compelling evidence for a prophylactic use of systemic therapies or vaccines.

Paul

Hi Kevin,

Sounds sane to me!

I've been in this place (Stage 4 NED), and made the choice to watch and wait, try to stay healthy, while being proactive about checking things out. I don't see compelling evidence for a prophylactic use of systemic therapies or vaccines.

Paul

Kevin, interferon may postpone the onset of melanoma. Check with your oncologist to see if there are any prerequisite to get into the trials that you may want. Sometimes you have to fail an FDA approved therapy before you can get into the clinical trial.

think two to three steps ahead.

jimmy b

Kevin, interferon may postpone the onset of melanoma. Check with your oncologist to see if there are any prerequisite to get into the trials that you may want. Sometimes you have to fail an FDA approved therapy before you can get into the clinical trial.

think two to three steps ahead.

jimmy b

Kevin, interferon may postpone the onset of melanoma. Check with your oncologist to see if there are any prerequisite to get into the trials that you may want. Sometimes you have to fail an FDA approved therapy before you can get into the clinical trial.

think two to three steps ahead.

jimmy b

This is what I have learned…………..take it as you will.

I wad DX'D in 1987 Stage III unknown primary.  Following surgeries and some playing around with lax cells, and diet it was nine years before melanoma came back in my body and made me Stage IV.

Back and forth I have went since then with disease and NED ( for me Not Expecting Death) for now 27years. and seven recurrences.

I learned my body, my poop, my pee, my sputum, my mind, my speech, my gait, my breathing, my ejaculate,my vision, my cordination, my heartbeat, my digestion and most of all……how to tell if something was amiss with my body.

Each time there was a recurrence I knew it before any scan or blood test.

Through all of this, I have  learned that for some, Melanoma can truly become a disease of management.

Yes, many will die, but not all.

Cure has never been an operative word or term for me, but management always seem to ring in my mind, and fortunately for me, that has rang true.

You MUST realize that there can indeed be life beyond melanoma at its' worst; all the while realizing there may not be………………….but find a balance.

Keep in mind what the alternative to death is which is living.

Do not let melanoma take that away from you……..ever.

Charlie S

This is what I have learned…………..take it as you will.

I wad DX'D in 1987 Stage III unknown primary.  Following surgeries and some playing around with lax cells, and diet it was nine years before melanoma came back in my body and made me Stage IV.

Back and forth I have went since then with disease and NED ( for me Not Expecting Death) for now 27years. and seven recurrences.

I learned my body, my poop, my pee, my sputum, my mind, my speech, my gait, my breathing, my ejaculate,my vision, my cordination, my heartbeat, my digestion and most of all……how to tell if something was amiss with my body.

Each time there was a recurrence I knew it before any scan or blood test.

Through all of this, I have  learned that for some, Melanoma can truly become a disease of management.

Yes, many will die, but not all.

Cure has never been an operative word or term for me, but management always seem to ring in my mind, and fortunately for me, that has rang true.

You MUST realize that there can indeed be life beyond melanoma at its' worst; all the while realizing there may not be………………….but find a balance.

Keep in mind what the alternative to death is which is living.

Do not let melanoma take that away from you……..ever.

Charlie S

This is what I have learned…………..take it as you will.

I wad DX'D in 1987 Stage III unknown primary.  Following surgeries and some playing around with lax cells, and diet it was nine years before melanoma came back in my body and made me Stage IV.

Back and forth I have went since then with disease and NED ( for me Not Expecting Death) for now 27years. and seven recurrences.

I learned my body, my poop, my pee, my sputum, my mind, my speech, my gait, my breathing, my ejaculate,my vision, my cordination, my heartbeat, my digestion and most of all……how to tell if something was amiss with my body.

Each time there was a recurrence I knew it before any scan or blood test.

Through all of this, I have  learned that for some, Melanoma can truly become a disease of management.

Yes, many will die, but not all.

Cure has never been an operative word or term for me, but management always seem to ring in my mind, and fortunately for me, that has rang true.

You MUST realize that there can indeed be life beyond melanoma at its' worst; all the while realizing there may not be………………….but find a balance.

Keep in mind what the alternative to death is which is living.

Do not let melanoma take that away from you……..ever.

Charlie S