› Forums › General Melanoma Community › Am I Crazy? Stage 4 Treatment Options
- This topic has 24 replies, 7 voices, and was last updated 10 years, 8 months ago by kpcollins31.
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- February 22, 2014 at 12:17 am
So I had my surgical follow-up earlier in the week… healing really well, feel great. We discussed the biopsy results, which were confirmed as melanoma (metastasis to the small bowel). Margins were tested and clear. In addition, my surgeon removed 20 lymph nodes in the region… one of which tested positive for melanoma. Bottom line is I am now stage 4 NED.
We discussed treatment options… when you are NED, they are fairly limited. Interferon, clinical trials, or watch and wait. I chose watch and wait with the 3 month scan frequency and I feel very comfortable with it. Am I crazy? I fully expect to have a recurrence at some point… not sure if it will be 3 months or 3 years (or 30 years for that matter), but I hate to start firing my treatment bullets too soon. I do not believe interferon is effective. Some current clinical trials seem to be showing a lot of promise, but I do not want to take something now that might rule out a better treatment down the road. My thought process now is to get my body strong again following the surgery to prepare for the next battle. Any thoughts on this approach?
Kevin
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- February 22, 2014 at 3:31 am
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.
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- February 22, 2014 at 3:31 am
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.
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- February 22, 2014 at 3:31 am
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.
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- February 22, 2014 at 6:12 am
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.
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- February 22, 2014 at 6:12 am
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.
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- February 22, 2014 at 6:12 am
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.
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- February 22, 2014 at 6:41 am
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
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- February 22, 2014 at 6:41 am
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
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- February 22, 2014 at 6:41 am
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
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- February 22, 2014 at 10:28 pm
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
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- February 22, 2014 at 10:28 pm
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
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- February 22, 2014 at 10:28 pm
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
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- February 23, 2014 at 12:28 am
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
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- February 23, 2014 at 12:28 am
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
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- February 23, 2014 at 12:28 am
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
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- February 23, 2014 at 2:06 am
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
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- February 23, 2014 at 2:06 am
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
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- February 23, 2014 at 2:06 am
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
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- February 24, 2014 at 2:51 pm
Appreciate all the feedback on this. I know that Jim noted that interferon might be an option, but I am simply not convinced that the benefit outweighs the personal cost in terms of side effects. For now, I plan to stay the course on watch and wait. As Charlie noted, I know my body and I expect to know when something seems wrong.
Kevin
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- February 24, 2014 at 2:51 pm
Appreciate all the feedback on this. I know that Jim noted that interferon might be an option, but I am simply not convinced that the benefit outweighs the personal cost in terms of side effects. For now, I plan to stay the course on watch and wait. As Charlie noted, I know my body and I expect to know when something seems wrong.
Kevin
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- February 24, 2014 at 2:51 pm
Appreciate all the feedback on this. I know that Jim noted that interferon might be an option, but I am simply not convinced that the benefit outweighs the personal cost in terms of side effects. For now, I plan to stay the course on watch and wait. As Charlie noted, I know my body and I expect to know when something seems wrong.
Kevin
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