› Forums › General Melanoma Community › Vitamin C and Ted Howard
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caroljones.
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- November 1, 2016 at 4:41 am
This may be yet another topic that has been discussed but I sort of found out a real inspirational survivor story tonight. Some of you may already have seen and read it but this came at the right moment for me it seems.
Have a listen at his TedTalk (audio and pdf follow up). This guy has something to deliver. And it comes from a scientific and analytic mind.
Tell me what you think
- Replies
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- November 1, 2016 at 2:01 pm
It never hurts to be as fit and healthy as possible when fighting cancer. Ted is correct in that changing one's lifestyle in the manner he did is very difficult….. at first. Once it becomes a way of life, the body adapts and cravings for the "bad foods" will decrease. I am still a firm believer in the conventional medicine that has saved my life, but I do believe the health habits and lifestyle I had developed prior to diagnosis helped in dealing with many of the harsh treatments in the fight, and may have saved me from may more unpleasant side effects. Even taking baby steps and incrimentally improving one's health, will help both mentally and physically when facing the fight of your life. Hang on to that pdf presentation he included. There is some great advice to turn to when it has been a "rough patch". I found that making the physical changes in my life made me feel as though I was taking control of what I could. When the melanoma hit, it certainly made a difference in my mental outlook to turn to those things I had some physical control over (food and exercise)… because I surely felt like melanoma was not one of those things. It may seem like a small thing to take a walk, or prepare a healthy meal… but the mental reward of feeling like you are able to do something about what's going on in your body, could be quite powerful. Particularly for those of you in that "no man's land" of what to do for stage III.
Thanks for the link.
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- November 1, 2016 at 2:01 pm
It never hurts to be as fit and healthy as possible when fighting cancer. Ted is correct in that changing one's lifestyle in the manner he did is very difficult….. at first. Once it becomes a way of life, the body adapts and cravings for the "bad foods" will decrease. I am still a firm believer in the conventional medicine that has saved my life, but I do believe the health habits and lifestyle I had developed prior to diagnosis helped in dealing with many of the harsh treatments in the fight, and may have saved me from may more unpleasant side effects. Even taking baby steps and incrimentally improving one's health, will help both mentally and physically when facing the fight of your life. Hang on to that pdf presentation he included. There is some great advice to turn to when it has been a "rough patch". I found that making the physical changes in my life made me feel as though I was taking control of what I could. When the melanoma hit, it certainly made a difference in my mental outlook to turn to those things I had some physical control over (food and exercise)… because I surely felt like melanoma was not one of those things. It may seem like a small thing to take a walk, or prepare a healthy meal… but the mental reward of feeling like you are able to do something about what's going on in your body, could be quite powerful. Particularly for those of you in that "no man's land" of what to do for stage III.
Thanks for the link.
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- November 1, 2016 at 7:14 pm
Thanks Niki for ypur outlook. I already started changing my nutrition habits on the day I received my first biopsy results last July. It seems I am the kind of person that can turn on a dime logistically. But my main and biggest weakness is my state of mind. I am an expert at sabotage! But now that I have found a "model", a rational model, I feel like a renewed sense of hope. I'll start by setting myself a few goals for the next three months and we'll see where that leads me.
If you read this guy's story carefully, he litterally cured himself without immunotherapy as we understand it here. I'm not saying we should disregard immunotherapy. Not at all. I, like you I think, believe in a global approach.
But nonetheless, he found a cure with Vit C and other stuff from the scientific litterature! And he just wrote back to me very candidly.
I need to do something in my limbo stage 3b position and beat the odds of melanoma coming back. Some on this board have done it. This man did it. I can and will do it too.
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- November 1, 2016 at 7:14 pm
Thanks Niki for ypur outlook. I already started changing my nutrition habits on the day I received my first biopsy results last July. It seems I am the kind of person that can turn on a dime logistically. But my main and biggest weakness is my state of mind. I am an expert at sabotage! But now that I have found a "model", a rational model, I feel like a renewed sense of hope. I'll start by setting myself a few goals for the next three months and we'll see where that leads me.
If you read this guy's story carefully, he litterally cured himself without immunotherapy as we understand it here. I'm not saying we should disregard immunotherapy. Not at all. I, like you I think, believe in a global approach.
But nonetheless, he found a cure with Vit C and other stuff from the scientific litterature! And he just wrote back to me very candidly.
I need to do something in my limbo stage 3b position and beat the odds of melanoma coming back. Some on this board have done it. This man did it. I can and will do it too.
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- November 1, 2016 at 7:49 pm
"Some on this board have done it. This man did it. I can and will do it too." —- HIGH FIVE to that! : ) Control what you can to beat the odds. And when you feel you're beginning to mentally sabotage yourself… turn to Ted's example for a booster shot of hope. : )
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- November 1, 2016 at 7:49 pm
"Some on this board have done it. This man did it. I can and will do it too." —- HIGH FIVE to that! : ) Control what you can to beat the odds. And when you feel you're beginning to mentally sabotage yourself… turn to Ted's example for a booster shot of hope. : )
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- November 2, 2016 at 4:59 pm
So many things are used as coping mechanisms. I lost both parents to cancer (Mom — 65 yrs old… colon cancer and Dad — 68 yrs old… lung cancer), so I was determined to be as aggressive as humanly possilbe. I didn't want my son or my husband to face my death. Initially, I had to break things down into smaller pieces that I could mentally handle. Thinking long term was too overwhelming, so I focused on the immediate treatment set in front of me, and how to manage that. We all still look back sometimes at all that it took to get me here, and think "Wow. Holy hell that's a lot of crap!"… but when going through it, and looking at each step ahead, it really didn't seem so horrible. From the start, my oncologist was telling me about Keytruda, and how it was "the cat's meow" and "the next best thing coming along". I set my goal on surviving long enough to get to its FDA approval….. one step at a time. After a little passing of time, I realized that this cancer wasn't killing me RIGHT NOW. The steps I was taking, were controlling it enough that I was able to live like a normal person. I continued to ride my bike, albeit slower than before. I continued to put the "right" foods into my body, because that gave me some sense of "control" over the cancer. On top of it all, I didn't look like I had cancer, so (most) people treated me as if I didn't. I continued to go to work. I ran my errands. I socialized with friends. The more I could do that didn't involve being a cancer patient, the better. Nights were the hardest times. As with any stress in life, we humans tend to swirl things around in our mind at night, when distractions are minimal. Eventually, I survived enough steps (19 months!) to make it to Keytruda… which, thankfully, has been my "magic potion". I'm not sure what I'd have done had it not worked. I suppose it would have been onto the next step… whatever trial that may have involved. I still have anxious days… scan times are unnerving, particularly since Keytruda treatment concluded in July. But overall, my biggest worries tend to be the typical concerns of anyone in life…. or of my sore joints and what we're going to do about THAT issue now. Not gonna lie… if a brain scan were to crop up a new tumor, I'd have a melt down for the full duration of the 3+ hour drive home. But, I'd wake up the next day, and start planning for "the next step"… whatever that may have to be. Any time and every time there has been bad news, I revert back to the "one step" method and ask "How do we fix this?". There are so many ups and downs with this disease, no course is ever smooth and steady. Each hiccup requires a mental reset.
We're all motivated by different things. We just have to find something to grab hold of, because there will be those moments when we need to turn to a reminder that we can face this. I believe, like any other traumatic life event, a cancer diagnosis brings about the five stages of the grieving process. Eventually, acceptance settles in. The timeline for that will vary from person to person.
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- November 2, 2016 at 4:59 pm
So many things are used as coping mechanisms. I lost both parents to cancer (Mom — 65 yrs old… colon cancer and Dad — 68 yrs old… lung cancer), so I was determined to be as aggressive as humanly possilbe. I didn't want my son or my husband to face my death. Initially, I had to break things down into smaller pieces that I could mentally handle. Thinking long term was too overwhelming, so I focused on the immediate treatment set in front of me, and how to manage that. We all still look back sometimes at all that it took to get me here, and think "Wow. Holy hell that's a lot of crap!"… but when going through it, and looking at each step ahead, it really didn't seem so horrible. From the start, my oncologist was telling me about Keytruda, and how it was "the cat's meow" and "the next best thing coming along". I set my goal on surviving long enough to get to its FDA approval….. one step at a time. After a little passing of time, I realized that this cancer wasn't killing me RIGHT NOW. The steps I was taking, were controlling it enough that I was able to live like a normal person. I continued to ride my bike, albeit slower than before. I continued to put the "right" foods into my body, because that gave me some sense of "control" over the cancer. On top of it all, I didn't look like I had cancer, so (most) people treated me as if I didn't. I continued to go to work. I ran my errands. I socialized with friends. The more I could do that didn't involve being a cancer patient, the better. Nights were the hardest times. As with any stress in life, we humans tend to swirl things around in our mind at night, when distractions are minimal. Eventually, I survived enough steps (19 months!) to make it to Keytruda… which, thankfully, has been my "magic potion". I'm not sure what I'd have done had it not worked. I suppose it would have been onto the next step… whatever trial that may have involved. I still have anxious days… scan times are unnerving, particularly since Keytruda treatment concluded in July. But overall, my biggest worries tend to be the typical concerns of anyone in life…. or of my sore joints and what we're going to do about THAT issue now. Not gonna lie… if a brain scan were to crop up a new tumor, I'd have a melt down for the full duration of the 3+ hour drive home. But, I'd wake up the next day, and start planning for "the next step"… whatever that may have to be. Any time and every time there has been bad news, I revert back to the "one step" method and ask "How do we fix this?". There are so many ups and downs with this disease, no course is ever smooth and steady. Each hiccup requires a mental reset.
We're all motivated by different things. We just have to find something to grab hold of, because there will be those moments when we need to turn to a reminder that we can face this. I believe, like any other traumatic life event, a cancer diagnosis brings about the five stages of the grieving process. Eventually, acceptance settles in. The timeline for that will vary from person to person.
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- November 2, 2016 at 6:25 pm
Hi Niki,
I just wanted to take a moment to thank you for all your wonderful contributions to this board. You are a good model for many to follow, especially those who are ridden with anxiety and fear, usually after an initial diagnosis. This disease presents itself in many shapes and forms, and recognizing that individuals reactions, and how they handle their situation varies greatly. Those in earlier stages constantly fear the worst, but those of us truly battling for our lives, who see scans of our insides looking like a fruit salad of tumors, are fighting a very different battle. Thanks for your level head and ability to reach everyone. Best to you in all future scans and defeating the beast.
Gary
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- November 2, 2016 at 6:25 pm
Hi Niki,
I just wanted to take a moment to thank you for all your wonderful contributions to this board. You are a good model for many to follow, especially those who are ridden with anxiety and fear, usually after an initial diagnosis. This disease presents itself in many shapes and forms, and recognizing that individuals reactions, and how they handle their situation varies greatly. Those in earlier stages constantly fear the worst, but those of us truly battling for our lives, who see scans of our insides looking like a fruit salad of tumors, are fighting a very different battle. Thanks for your level head and ability to reach everyone. Best to you in all future scans and defeating the beast.
Gary
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- November 2, 2016 at 9:21 pm
Thank you Gary. That's really sweet of you to say. I've been tied into cancer organizations in some way or another since long before it became a commonly spoken word in my family or personal life. I've seen people fear the worst, and people clinging to any shred of hope, because they are facing the worst. We all find our way in different ways. I hate to see cancer "win"… be it the physical battle, or the mental one. Isn't it strange how the fear seems somehow diminished when you've heard shitty news so often? At one point, i was clinging to the thought that "worse come to worse", my life has been given purpose, simply because my doc had used my case in a research study. Somehow knowing that we can learn from one another, and help one another, was very liberating. But then, I thought… why does the paper matter? All of us can and may be someone's hope. Even when things are going to hell in a handbasket… because they can learn from you… even if it's just to learn how not to lose to cancer mentally, when your physical world is a "fruit salad of tumors". ; ) So, thank you… for being a part of this forum and sharing your hell with us, along with words of wisdom or encouragement. Keep throwing punches at the beast! There is a virtual world full of MFers (melanoma friends/family) in your corner. : )
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- November 2, 2016 at 9:21 pm
Thank you Gary. That's really sweet of you to say. I've been tied into cancer organizations in some way or another since long before it became a commonly spoken word in my family or personal life. I've seen people fear the worst, and people clinging to any shred of hope, because they are facing the worst. We all find our way in different ways. I hate to see cancer "win"… be it the physical battle, or the mental one. Isn't it strange how the fear seems somehow diminished when you've heard shitty news so often? At one point, i was clinging to the thought that "worse come to worse", my life has been given purpose, simply because my doc had used my case in a research study. Somehow knowing that we can learn from one another, and help one another, was very liberating. But then, I thought… why does the paper matter? All of us can and may be someone's hope. Even when things are going to hell in a handbasket… because they can learn from you… even if it's just to learn how not to lose to cancer mentally, when your physical world is a "fruit salad of tumors". ; ) So, thank you… for being a part of this forum and sharing your hell with us, along with words of wisdom or encouragement. Keep throwing punches at the beast! There is a virtual world full of MFers (melanoma friends/family) in your corner. : )
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- November 2, 2016 at 9:21 pm
Thank you Gary. That's really sweet of you to say. I've been tied into cancer organizations in some way or another since long before it became a commonly spoken word in my family or personal life. I've seen people fear the worst, and people clinging to any shred of hope, because they are facing the worst. We all find our way in different ways. I hate to see cancer "win"… be it the physical battle, or the mental one. Isn't it strange how the fear seems somehow diminished when you've heard shitty news so often? At one point, i was clinging to the thought that "worse come to worse", my life has been given purpose, simply because my doc had used my case in a research study. Somehow knowing that we can learn from one another, and help one another, was very liberating. But then, I thought… why does the paper matter? All of us can and may be someone's hope. Even when things are going to hell in a handbasket… because they can learn from you… even if it's just to learn how not to lose to cancer mentally, when your physical world is a "fruit salad of tumors". ; ) So, thank you… for being a part of this forum and sharing your hell with us, along with words of wisdom or encouragement. Keep throwing punches at the beast! There is a virtual world full of MFers (melanoma friends/family) in your corner. : )
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- November 2, 2016 at 6:25 pm
Hi Niki,
I just wanted to take a moment to thank you for all your wonderful contributions to this board. You are a good model for many to follow, especially those who are ridden with anxiety and fear, usually after an initial diagnosis. This disease presents itself in many shapes and forms, and recognizing that individuals reactions, and how they handle their situation varies greatly. Those in earlier stages constantly fear the worst, but those of us truly battling for our lives, who see scans of our insides looking like a fruit salad of tumors, are fighting a very different battle. Thanks for your level head and ability to reach everyone. Best to you in all future scans and defeating the beast.
Gary
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- November 3, 2016 at 1:31 am
I wish to further add to Gary's comment. Someone I know who is battling with cancer around here says «Your altitude sets your attitude».
Niki, to me, you are flying right up there with the planets. You are a rocket. You truly are. I wish I could really have you guys around.
WHen you say: «I knew the disease wasn't killing me RIGHT NOW»… How did you know that? How long does it take for this cancer to kill us?
I am so clueless and still lost. And I hear you loud and clear when you and Gary say: «the newbies don't have a clue what it is to battle with this cancer.»
Forgive me for being a coward. I am a coward and don't have much courage from one day to the next.
I have pretty much used up all of my local resources to find answers and hope. I am preparing for the fight instead of enjoying the moment mainly because I have not accepted the fact that I may likely die before 5 years of that dreadful disease. And then again, I may get lucky!
My follow up plan with my doctors is so scaring me… As it is probably standard practice in Canada, I will get scans at 6 months only. I am scheduled for next March 2017! I really dont know how I will be able to cope with that. Mets will have plenty of time to invade me before that time and I fear to show up worse than I currently am.
So my apologies again to you, I am just a coward but at least I am able to see it. And yes, we must all go through the five stages of grief, I agree. Seems I haven't even started yet.
THank you for taking the time to read me. You are alive and a true inspiration. I wish I could cry…
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- November 3, 2016 at 1:31 am
I wish to further add to Gary's comment. Someone I know who is battling with cancer around here says «Your altitude sets your attitude».
Niki, to me, you are flying right up there with the planets. You are a rocket. You truly are. I wish I could really have you guys around.
WHen you say: «I knew the disease wasn't killing me RIGHT NOW»… How did you know that? How long does it take for this cancer to kill us?
I am so clueless and still lost. And I hear you loud and clear when you and Gary say: «the newbies don't have a clue what it is to battle with this cancer.»
Forgive me for being a coward. I am a coward and don't have much courage from one day to the next.
I have pretty much used up all of my local resources to find answers and hope. I am preparing for the fight instead of enjoying the moment mainly because I have not accepted the fact that I may likely die before 5 years of that dreadful disease. And then again, I may get lucky!
My follow up plan with my doctors is so scaring me… As it is probably standard practice in Canada, I will get scans at 6 months only. I am scheduled for next March 2017! I really dont know how I will be able to cope with that. Mets will have plenty of time to invade me before that time and I fear to show up worse than I currently am.
So my apologies again to you, I am just a coward but at least I am able to see it. And yes, we must all go through the five stages of grief, I agree. Seems I haven't even started yet.
THank you for taking the time to read me. You are alive and a true inspiration. I wish I could cry…
-
- November 3, 2016 at 1:31 am
I wish to further add to Gary's comment. Someone I know who is battling with cancer around here says «Your altitude sets your attitude».
Niki, to me, you are flying right up there with the planets. You are a rocket. You truly are. I wish I could really have you guys around.
WHen you say: «I knew the disease wasn't killing me RIGHT NOW»… How did you know that? How long does it take for this cancer to kill us?
I am so clueless and still lost. And I hear you loud and clear when you and Gary say: «the newbies don't have a clue what it is to battle with this cancer.»
Forgive me for being a coward. I am a coward and don't have much courage from one day to the next.
I have pretty much used up all of my local resources to find answers and hope. I am preparing for the fight instead of enjoying the moment mainly because I have not accepted the fact that I may likely die before 5 years of that dreadful disease. And then again, I may get lucky!
My follow up plan with my doctors is so scaring me… As it is probably standard practice in Canada, I will get scans at 6 months only. I am scheduled for next March 2017! I really dont know how I will be able to cope with that. Mets will have plenty of time to invade me before that time and I fear to show up worse than I currently am.
So my apologies again to you, I am just a coward but at least I am able to see it. And yes, we must all go through the five stages of grief, I agree. Seems I haven't even started yet.
THank you for taking the time to read me. You are alive and a true inspiration. I wish I could cry…
-
- November 3, 2016 at 4:23 pm
Sole… you don't have to apologize for being scared. It's a perfectly natural thing that we all went through… even those of us who have had to deal with it for a long while now. The thing about us dealing with it for so long, versus "the clueless newbies" is that we sometimes have become so numb to bad news, that we forget how bad the HUGE cloud of smoke on the horizon looked when we have walked across hot coals so often. Sometimes small fires make for large clouds of smoke and sometimes it's an out of control forest fire! We can't judge someone's fear and feelings by how afraid of the smoke they are. Those fears may turn out to be quite legitimate, and none of us will be feeling very good if/when one of "the newbies" progresses and must join those of us who have fought for years. One day at a time is all you can do. Eventually, you'll find that it is one week at a time… then one month… you'll get there, but in your own time and at your own pace. On the occassions when I do think back to my initial diagnosis response, I can clearly recall wondering if I'd be gone in a week, or would I make it to my husband's birthday. Would I make it to our anniversary? My birthday? Christmas? My son's birthday? Nights were horrible and sleepless. I didn't want my husband or son to know that, because I didn't want THEM to freak out that I was freaking out. : ) I think the only thing that helped finally soothe me, was knowing that I didn't FEEL like I was dying. That's whay I meant by "the disease wasn't killing me RIGHT NOW". Physically, I felt stong enough to shower, to go to work, to dress myself, to ride my bicycle. I still had an appetite, even though food tasted "odd". I knew there were lesions in my lungs and in my brain. I had seen them on CT's and MRI's, but I couldn't feel them. I had no neurological or harsh physical deficit from them (**caveat** — other than the initial brain lesion that caused a seizure… but that was removed and used in the pathology for my official diagnosis). I was walking and talking and emailing… generally being "normal". I knew that there would be drastic decline before "the end". Unfortunately, I had witnessed it with both of my folks. Even though the cancer continued to grow (despite initial treatments) for a year, I was feeling ok. We gamma radiated brain tumors as they cropped up, and I watched the largest lung tumor go from 5cm to 9cm… but still… I physically felt fine. I knew that people who are still walking and talking with cancer in their bodies are not very likely going to drop dead overnight from it. That may have been the turning point in allowing me to get some sleep at night. I knew that I'd be waking up to face another seemingly normal day.
I'm not saying any of us will ever feel perfectly comfortable again. There will always be concern of a return. If I were ever in a nasty car wreck, I'd likely carry some level of fear everytime I were to strap into an automobile. But as time passes, the human mind eventually protects itself by pushing memories to the back burner, and bringing about longer spans of happiness and comfort. You are still adjusting to your new normal. Give it some time, and don't be too hard on yourself if it takes longer than you'd like it to. Nobody but you is in your shoes and in your mind, having lived your every moment of existance and all that brings to the table.
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- November 3, 2016 at 5:37 pm
Niki,
I wont ever have enough time to thank you for the kindest words of comfort you are giving me right now…
As I said, you are a rocket flying through the atmosphere and leaving trails of life and hope everywhere you go.
I get discouraged when I read a survivor story somewhere and find out later that the person has died.
It seems that unless you are "lucky" enough to find the drug that really works for you, there isn't much hope for any sort of recovery at stage 4. Those are, with all the suffering that comes with it, the scariest things insinde of me right now. And of course, my state of mind is surely giving cancer a head start… So the catch 22 is pretty unsolvable and it gets worse and worse. Anyway, it's all about making peace… I'll get there.
Hugs and blessings to you and your cherished ones. Forever.
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- November 3, 2016 at 5:37 pm
Niki,
I wont ever have enough time to thank you for the kindest words of comfort you are giving me right now…
As I said, you are a rocket flying through the atmosphere and leaving trails of life and hope everywhere you go.
I get discouraged when I read a survivor story somewhere and find out later that the person has died.
It seems that unless you are "lucky" enough to find the drug that really works for you, there isn't much hope for any sort of recovery at stage 4. Those are, with all the suffering that comes with it, the scariest things insinde of me right now. And of course, my state of mind is surely giving cancer a head start… So the catch 22 is pretty unsolvable and it gets worse and worse. Anyway, it's all about making peace… I'll get there.
Hugs and blessings to you and your cherished ones. Forever.
-
- November 3, 2016 at 5:37 pm
Niki,
I wont ever have enough time to thank you for the kindest words of comfort you are giving me right now…
As I said, you are a rocket flying through the atmosphere and leaving trails of life and hope everywhere you go.
I get discouraged when I read a survivor story somewhere and find out later that the person has died.
It seems that unless you are "lucky" enough to find the drug that really works for you, there isn't much hope for any sort of recovery at stage 4. Those are, with all the suffering that comes with it, the scariest things insinde of me right now. And of course, my state of mind is surely giving cancer a head start… So the catch 22 is pretty unsolvable and it gets worse and worse. Anyway, it's all about making peace… I'll get there.
Hugs and blessings to you and your cherished ones. Forever.
-
- November 3, 2016 at 4:23 pm
Sole… you don't have to apologize for being scared. It's a perfectly natural thing that we all went through… even those of us who have had to deal with it for a long while now. The thing about us dealing with it for so long, versus "the clueless newbies" is that we sometimes have become so numb to bad news, that we forget how bad the HUGE cloud of smoke on the horizon looked when we have walked across hot coals so often. Sometimes small fires make for large clouds of smoke and sometimes it's an out of control forest fire! We can't judge someone's fear and feelings by how afraid of the smoke they are. Those fears may turn out to be quite legitimate, and none of us will be feeling very good if/when one of "the newbies" progresses and must join those of us who have fought for years. One day at a time is all you can do. Eventually, you'll find that it is one week at a time… then one month… you'll get there, but in your own time and at your own pace. On the occassions when I do think back to my initial diagnosis response, I can clearly recall wondering if I'd be gone in a week, or would I make it to my husband's birthday. Would I make it to our anniversary? My birthday? Christmas? My son's birthday? Nights were horrible and sleepless. I didn't want my husband or son to know that, because I didn't want THEM to freak out that I was freaking out. : ) I think the only thing that helped finally soothe me, was knowing that I didn't FEEL like I was dying. That's whay I meant by "the disease wasn't killing me RIGHT NOW". Physically, I felt stong enough to shower, to go to work, to dress myself, to ride my bicycle. I still had an appetite, even though food tasted "odd". I knew there were lesions in my lungs and in my brain. I had seen them on CT's and MRI's, but I couldn't feel them. I had no neurological or harsh physical deficit from them (**caveat** — other than the initial brain lesion that caused a seizure… but that was removed and used in the pathology for my official diagnosis). I was walking and talking and emailing… generally being "normal". I knew that there would be drastic decline before "the end". Unfortunately, I had witnessed it with both of my folks. Even though the cancer continued to grow (despite initial treatments) for a year, I was feeling ok. We gamma radiated brain tumors as they cropped up, and I watched the largest lung tumor go from 5cm to 9cm… but still… I physically felt fine. I knew that people who are still walking and talking with cancer in their bodies are not very likely going to drop dead overnight from it. That may have been the turning point in allowing me to get some sleep at night. I knew that I'd be waking up to face another seemingly normal day.
I'm not saying any of us will ever feel perfectly comfortable again. There will always be concern of a return. If I were ever in a nasty car wreck, I'd likely carry some level of fear everytime I were to strap into an automobile. But as time passes, the human mind eventually protects itself by pushing memories to the back burner, and bringing about longer spans of happiness and comfort. You are still adjusting to your new normal. Give it some time, and don't be too hard on yourself if it takes longer than you'd like it to. Nobody but you is in your shoes and in your mind, having lived your every moment of existance and all that brings to the table.
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- November 3, 2016 at 4:23 pm
Sole… you don't have to apologize for being scared. It's a perfectly natural thing that we all went through… even those of us who have had to deal with it for a long while now. The thing about us dealing with it for so long, versus "the clueless newbies" is that we sometimes have become so numb to bad news, that we forget how bad the HUGE cloud of smoke on the horizon looked when we have walked across hot coals so often. Sometimes small fires make for large clouds of smoke and sometimes it's an out of control forest fire! We can't judge someone's fear and feelings by how afraid of the smoke they are. Those fears may turn out to be quite legitimate, and none of us will be feeling very good if/when one of "the newbies" progresses and must join those of us who have fought for years. One day at a time is all you can do. Eventually, you'll find that it is one week at a time… then one month… you'll get there, but in your own time and at your own pace. On the occassions when I do think back to my initial diagnosis response, I can clearly recall wondering if I'd be gone in a week, or would I make it to my husband's birthday. Would I make it to our anniversary? My birthday? Christmas? My son's birthday? Nights were horrible and sleepless. I didn't want my husband or son to know that, because I didn't want THEM to freak out that I was freaking out. : ) I think the only thing that helped finally soothe me, was knowing that I didn't FEEL like I was dying. That's whay I meant by "the disease wasn't killing me RIGHT NOW". Physically, I felt stong enough to shower, to go to work, to dress myself, to ride my bicycle. I still had an appetite, even though food tasted "odd". I knew there were lesions in my lungs and in my brain. I had seen them on CT's and MRI's, but I couldn't feel them. I had no neurological or harsh physical deficit from them (**caveat** — other than the initial brain lesion that caused a seizure… but that was removed and used in the pathology for my official diagnosis). I was walking and talking and emailing… generally being "normal". I knew that there would be drastic decline before "the end". Unfortunately, I had witnessed it with both of my folks. Even though the cancer continued to grow (despite initial treatments) for a year, I was feeling ok. We gamma radiated brain tumors as they cropped up, and I watched the largest lung tumor go from 5cm to 9cm… but still… I physically felt fine. I knew that people who are still walking and talking with cancer in their bodies are not very likely going to drop dead overnight from it. That may have been the turning point in allowing me to get some sleep at night. I knew that I'd be waking up to face another seemingly normal day.
I'm not saying any of us will ever feel perfectly comfortable again. There will always be concern of a return. If I were ever in a nasty car wreck, I'd likely carry some level of fear everytime I were to strap into an automobile. But as time passes, the human mind eventually protects itself by pushing memories to the back burner, and bringing about longer spans of happiness and comfort. You are still adjusting to your new normal. Give it some time, and don't be too hard on yourself if it takes longer than you'd like it to. Nobody but you is in your shoes and in your mind, having lived your every moment of existance and all that brings to the table.
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- November 2, 2016 at 4:59 pm
So many things are used as coping mechanisms. I lost both parents to cancer (Mom — 65 yrs old… colon cancer and Dad — 68 yrs old… lung cancer), so I was determined to be as aggressive as humanly possilbe. I didn't want my son or my husband to face my death. Initially, I had to break things down into smaller pieces that I could mentally handle. Thinking long term was too overwhelming, so I focused on the immediate treatment set in front of me, and how to manage that. We all still look back sometimes at all that it took to get me here, and think "Wow. Holy hell that's a lot of crap!"… but when going through it, and looking at each step ahead, it really didn't seem so horrible. From the start, my oncologist was telling me about Keytruda, and how it was "the cat's meow" and "the next best thing coming along". I set my goal on surviving long enough to get to its FDA approval….. one step at a time. After a little passing of time, I realized that this cancer wasn't killing me RIGHT NOW. The steps I was taking, were controlling it enough that I was able to live like a normal person. I continued to ride my bike, albeit slower than before. I continued to put the "right" foods into my body, because that gave me some sense of "control" over the cancer. On top of it all, I didn't look like I had cancer, so (most) people treated me as if I didn't. I continued to go to work. I ran my errands. I socialized with friends. The more I could do that didn't involve being a cancer patient, the better. Nights were the hardest times. As with any stress in life, we humans tend to swirl things around in our mind at night, when distractions are minimal. Eventually, I survived enough steps (19 months!) to make it to Keytruda… which, thankfully, has been my "magic potion". I'm not sure what I'd have done had it not worked. I suppose it would have been onto the next step… whatever trial that may have involved. I still have anxious days… scan times are unnerving, particularly since Keytruda treatment concluded in July. But overall, my biggest worries tend to be the typical concerns of anyone in life…. or of my sore joints and what we're going to do about THAT issue now. Not gonna lie… if a brain scan were to crop up a new tumor, I'd have a melt down for the full duration of the 3+ hour drive home. But, I'd wake up the next day, and start planning for "the next step"… whatever that may have to be. Any time and every time there has been bad news, I revert back to the "one step" method and ask "How do we fix this?". There are so many ups and downs with this disease, no course is ever smooth and steady. Each hiccup requires a mental reset.
We're all motivated by different things. We just have to find something to grab hold of, because there will be those moments when we need to turn to a reminder that we can face this. I believe, like any other traumatic life event, a cancer diagnosis brings about the five stages of the grieving process. Eventually, acceptance settles in. The timeline for that will vary from person to person.
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- November 1, 2016 at 7:49 pm
"Some on this board have done it. This man did it. I can and will do it too." —- HIGH FIVE to that! : ) Control what you can to beat the odds. And when you feel you're beginning to mentally sabotage yourself… turn to Ted's example for a booster shot of hope. : )
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- November 1, 2016 at 7:14 pm
Thanks Niki for ypur outlook. I already started changing my nutrition habits on the day I received my first biopsy results last July. It seems I am the kind of person that can turn on a dime logistically. But my main and biggest weakness is my state of mind. I am an expert at sabotage! But now that I have found a "model", a rational model, I feel like a renewed sense of hope. I'll start by setting myself a few goals for the next three months and we'll see where that leads me.
If you read this guy's story carefully, he litterally cured himself without immunotherapy as we understand it here. I'm not saying we should disregard immunotherapy. Not at all. I, like you I think, believe in a global approach.
But nonetheless, he found a cure with Vit C and other stuff from the scientific litterature! And he just wrote back to me very candidly.
I need to do something in my limbo stage 3b position and beat the odds of melanoma coming back. Some on this board have done it. This man did it. I can and will do it too.
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- November 1, 2016 at 2:01 pm
It never hurts to be as fit and healthy as possible when fighting cancer. Ted is correct in that changing one's lifestyle in the manner he did is very difficult….. at first. Once it becomes a way of life, the body adapts and cravings for the "bad foods" will decrease. I am still a firm believer in the conventional medicine that has saved my life, but I do believe the health habits and lifestyle I had developed prior to diagnosis helped in dealing with many of the harsh treatments in the fight, and may have saved me from may more unpleasant side effects. Even taking baby steps and incrimentally improving one's health, will help both mentally and physically when facing the fight of your life. Hang on to that pdf presentation he included. There is some great advice to turn to when it has been a "rough patch". I found that making the physical changes in my life made me feel as though I was taking control of what I could. When the melanoma hit, it certainly made a difference in my mental outlook to turn to those things I had some physical control over (food and exercise)… because I surely felt like melanoma was not one of those things. It may seem like a small thing to take a walk, or prepare a healthy meal… but the mental reward of feeling like you are able to do something about what's going on in your body, could be quite powerful. Particularly for those of you in that "no man's land" of what to do for stage III.
Thanks for the link.
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- November 1, 2016 at 8:08 pm
I just read an article in my local paper. A trial was done for a group of people suffering from chronic back pain. One group received their normal pain medications, and the other group had their normal pain medication plus a second treatment. The additional treatment was clearly marked "placebo" on the bottle, and suggested taking (the sugar pill) twice daily. It what was crazy results, the group taking the additional placebo reported over a 30% improvement in pain relief over the ones taking regular meds who all reported no improvement. Obviously the lesson here is the power of the mind and why virtually every study has a placebo group. What was different, is they were told it was a placebo. Even though we would expect those taking a clearly marked placebo would know the pill had no effect, it did. So if the mind is so powerful, and the idea of mental suggestion so effective, then it means that if we are sabotaging our minds with negative thoughts, we are really doing ourselves a huge disservice and likely making matters worse. This may also explain why there are plenty of anecdotal stories of miraculous cures, that should be taken with a grain of salt (or a sugar pill)
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- November 1, 2016 at 8:08 pm
I just read an article in my local paper. A trial was done for a group of people suffering from chronic back pain. One group received their normal pain medications, and the other group had their normal pain medication plus a second treatment. The additional treatment was clearly marked "placebo" on the bottle, and suggested taking (the sugar pill) twice daily. It what was crazy results, the group taking the additional placebo reported over a 30% improvement in pain relief over the ones taking regular meds who all reported no improvement. Obviously the lesson here is the power of the mind and why virtually every study has a placebo group. What was different, is they were told it was a placebo. Even though we would expect those taking a clearly marked placebo would know the pill had no effect, it did. So if the mind is so powerful, and the idea of mental suggestion so effective, then it means that if we are sabotaging our minds with negative thoughts, we are really doing ourselves a huge disservice and likely making matters worse. This may also explain why there are plenty of anecdotal stories of miraculous cures, that should be taken with a grain of salt (or a sugar pill)
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- November 1, 2016 at 9:38 pm
Agreed.
But I fail to see why anecdotal stories of miracle cures need to be taken with a grain of salt. A cure from a deadly disease has nothing anecdotal about it. A cure from chronic pain has nothing anecdotal about it. All cures arising from the power of the self and the mind (and most of the time with meds too) are far away from being anecdotal to me.
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- November 1, 2016 at 9:38 pm
Agreed.
But I fail to see why anecdotal stories of miracle cures need to be taken with a grain of salt. A cure from a deadly disease has nothing anecdotal about it. A cure from chronic pain has nothing anecdotal about it. All cures arising from the power of the self and the mind (and most of the time with meds too) are far away from being anecdotal to me.
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- November 1, 2016 at 9:51 pm
Anecdotal is just that, something someone said, not proved by scientific proof. Vitamin C was long ago disproved as a cureall for anything. Yes, a big grain of salt is needed where evidence is lacking. What works for one person shouldn't give false hope to another. Snake oil is still out there!
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- November 1, 2016 at 9:51 pm
Anecdotal is just that, something someone said, not proved by scientific proof. Vitamin C was long ago disproved as a cureall for anything. Yes, a big grain of salt is needed where evidence is lacking. What works for one person shouldn't give false hope to another. Snake oil is still out there!
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- November 1, 2016 at 9:51 pm
Anecdotal is just that, something someone said, not proved by scientific proof. Vitamin C was long ago disproved as a cureall for anything. Yes, a big grain of salt is needed where evidence is lacking. What works for one person shouldn't give false hope to another. Snake oil is still out there!
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- November 1, 2016 at 9:38 pm
Agreed.
But I fail to see why anecdotal stories of miracle cures need to be taken with a grain of salt. A cure from a deadly disease has nothing anecdotal about it. A cure from chronic pain has nothing anecdotal about it. All cures arising from the power of the self and the mind (and most of the time with meds too) are far away from being anecdotal to me.
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- November 1, 2016 at 8:08 pm
I just read an article in my local paper. A trial was done for a group of people suffering from chronic back pain. One group received their normal pain medications, and the other group had their normal pain medication plus a second treatment. The additional treatment was clearly marked "placebo" on the bottle, and suggested taking (the sugar pill) twice daily. It what was crazy results, the group taking the additional placebo reported over a 30% improvement in pain relief over the ones taking regular meds who all reported no improvement. Obviously the lesson here is the power of the mind and why virtually every study has a placebo group. What was different, is they were told it was a placebo. Even though we would expect those taking a clearly marked placebo would know the pill had no effect, it did. So if the mind is so powerful, and the idea of mental suggestion so effective, then it means that if we are sabotaging our minds with negative thoughts, we are really doing ourselves a huge disservice and likely making matters worse. This may also explain why there are plenty of anecdotal stories of miraculous cures, that should be taken with a grain of salt (or a sugar pill)
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- November 1, 2016 at 10:05 pm
Hi SOLE-
I read the entire story and am also intruiged. This seems like a win-win because vitamin C even at high doses is not harmful, so why not try it? I, too, cleaned up my diet when I was diagnosed. I already hadn't eated beef or pork for the last 10 years and not al lot of poultry and I've always eaten lots of fruits and veggies, but I could do a lot better with sugar and dairy.
It is empowering to have something that we can do on our own to cure our mel. I just ordered some Vit C and will be trying it in addition to keeping on doing other self care strategies like yoga, meditation, being with family and friends, and especially walking in nature as much as possible. Yesterday I drove to Lake Michigan and walked along the shore with a friend finding sea glass. Today I walked in the woods with my dogs.
That said, if and when my doctor tells me to start immunotherapy i plan to do it.
Thanks for posting this- I've been thinking about it all day.
All the best-
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- November 1, 2016 at 10:05 pm
Hi SOLE-
I read the entire story and am also intruiged. This seems like a win-win because vitamin C even at high doses is not harmful, so why not try it? I, too, cleaned up my diet when I was diagnosed. I already hadn't eated beef or pork for the last 10 years and not al lot of poultry and I've always eaten lots of fruits and veggies, but I could do a lot better with sugar and dairy.
It is empowering to have something that we can do on our own to cure our mel. I just ordered some Vit C and will be trying it in addition to keeping on doing other self care strategies like yoga, meditation, being with family and friends, and especially walking in nature as much as possible. Yesterday I drove to Lake Michigan and walked along the shore with a friend finding sea glass. Today I walked in the woods with my dogs.
That said, if and when my doctor tells me to start immunotherapy i plan to do it.
Thanks for posting this- I've been thinking about it all day.
All the best-
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- November 1, 2016 at 10:05 pm
Hi SOLE-
I read the entire story and am also intruiged. This seems like a win-win because vitamin C even at high doses is not harmful, so why not try it? I, too, cleaned up my diet when I was diagnosed. I already hadn't eated beef or pork for the last 10 years and not al lot of poultry and I've always eaten lots of fruits and veggies, but I could do a lot better with sugar and dairy.
It is empowering to have something that we can do on our own to cure our mel. I just ordered some Vit C and will be trying it in addition to keeping on doing other self care strategies like yoga, meditation, being with family and friends, and especially walking in nature as much as possible. Yesterday I drove to Lake Michigan and walked along the shore with a friend finding sea glass. Today I walked in the woods with my dogs.
That said, if and when my doctor tells me to start immunotherapy i plan to do it.
Thanks for posting this- I've been thinking about it all day.
All the best-
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- November 1, 2016 at 11:22 pm
I have long posted…for years!!!….all the things that have been touted to cure cancer generally, and melanoma specifically…from coffee and curcumin, to snake venom, to exercise…and a zillion other things. Frankly, the data is much better for coffee and curcumin than anything I've found for Vit C. So, for what it's worth….,
I can't speak for guy you're referencing. Obviously, he can speak for himself. However, if Vitamin C could cure cancer….I don't think any of us would be suffering with cancer or the treatments we currently endure.
But, just like everything in life…and certainly in melanoma….folks have to decide individually, what is best for them. Celeste
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- November 1, 2016 at 11:22 pm
I have long posted…for years!!!….all the things that have been touted to cure cancer generally, and melanoma specifically…from coffee and curcumin, to snake venom, to exercise…and a zillion other things. Frankly, the data is much better for coffee and curcumin than anything I've found for Vit C. So, for what it's worth….,
I can't speak for guy you're referencing. Obviously, he can speak for himself. However, if Vitamin C could cure cancer….I don't think any of us would be suffering with cancer or the treatments we currently endure.
But, just like everything in life…and certainly in melanoma….folks have to decide individually, what is best for them. Celeste
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- November 2, 2016 at 12:03 am
Celeste,
I dont know if you have read Ted's blog and melanoma story or not. He is explaining what he did when confronted with stage 4 terminal diagnostic.
I think his reasoning is not too far fetched. And about Vit C, being a biochemist, he dug out the reasons why some studies did not show such good results with it.
At any rate, I dont want to begin an argument on the subject; I wanted to point out that something appears to have definetely work out for this man and a high dosage of Vit C and a strict Vegan diet seem to have played a role in his case. And he clearly states it himself, being a skeptic, a man of science; it is something that we should carefully look at knowing there is no garentee it can work for all.
That is pretty much where we are at with our immunotherapy no? So maybe another bullet in our arsenal?
Personally, at my current limbo stage 3b, this is something I can pro actively do. And what if it helped me stay 3b for a long time? Forever? I'll take that chance for now and wish that pembro becomes a standard adjuvant for stage 3 before too long. Our battle is clearly about buying time up while enjoying the what we have. I'll do all I can to survive as long as possible. These are the cards I've been dealt.
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- November 2, 2016 at 12:03 am
Celeste,
I dont know if you have read Ted's blog and melanoma story or not. He is explaining what he did when confronted with stage 4 terminal diagnostic.
I think his reasoning is not too far fetched. And about Vit C, being a biochemist, he dug out the reasons why some studies did not show such good results with it.
At any rate, I dont want to begin an argument on the subject; I wanted to point out that something appears to have definetely work out for this man and a high dosage of Vit C and a strict Vegan diet seem to have played a role in his case. And he clearly states it himself, being a skeptic, a man of science; it is something that we should carefully look at knowing there is no garentee it can work for all.
That is pretty much where we are at with our immunotherapy no? So maybe another bullet in our arsenal?
Personally, at my current limbo stage 3b, this is something I can pro actively do. And what if it helped me stay 3b for a long time? Forever? I'll take that chance for now and wish that pembro becomes a standard adjuvant for stage 3 before too long. Our battle is clearly about buying time up while enjoying the what we have. I'll do all I can to survive as long as possible. These are the cards I've been dealt.
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- November 2, 2016 at 12:28 am
Yes, I looked at what you posted. I don't comment on that which I have not read. Did you read the many articles in the link I posted? One can only do the best they can. As I noted in one blog post…coffee, curcumin (the main ingredient in mustard and curry), being more zen (decreasing stress), increasing exercise NEVER hurt anyone! And….have helped many with cancer and without…and are backed in those positive effects with more data than Vit C, if that is important to you. Science and data have actually looked at Vit C, E, and D in many regards…and in relation to their effects on cancer in particular. Vit E and D have pro's and cons since they are fat soluble and can actually cause trouble for some folks. Vit C is hard to OD on because you will simply excrete that which your body does not need. Your urine will be a very pretty bright yellow! So no particular risk there.
I am a huge proponent of a diet high in fruits and veg and daily exercise. I eat the veggies no one else will. I've always been a runner. Always worn sunscreen. I have never had high blood pressure, smoked, been over weight….etc. I lived that life before melanoma…and it didn't save me, did it? AND…I live it still!! So, even though a healthy life style didn't keep me from acquiring or progressing in my melanoma journey…I do think it is best to live as healthy a lifestyle you can, no matter who you are!!
I like folks to have the best data possible for whatever they want to examine. If I have some studies that are pertinent, I share them. This is not an argument. This is just a contribution of additional information. If you want to eat veggies, run and take Vit C you will get no arguments from me. C
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- November 2, 2016 at 12:28 am
Yes, I looked at what you posted. I don't comment on that which I have not read. Did you read the many articles in the link I posted? One can only do the best they can. As I noted in one blog post…coffee, curcumin (the main ingredient in mustard and curry), being more zen (decreasing stress), increasing exercise NEVER hurt anyone! And….have helped many with cancer and without…and are backed in those positive effects with more data than Vit C, if that is important to you. Science and data have actually looked at Vit C, E, and D in many regards…and in relation to their effects on cancer in particular. Vit E and D have pro's and cons since they are fat soluble and can actually cause trouble for some folks. Vit C is hard to OD on because you will simply excrete that which your body does not need. Your urine will be a very pretty bright yellow! So no particular risk there.
I am a huge proponent of a diet high in fruits and veg and daily exercise. I eat the veggies no one else will. I've always been a runner. Always worn sunscreen. I have never had high blood pressure, smoked, been over weight….etc. I lived that life before melanoma…and it didn't save me, did it? AND…I live it still!! So, even though a healthy life style didn't keep me from acquiring or progressing in my melanoma journey…I do think it is best to live as healthy a lifestyle you can, no matter who you are!!
I like folks to have the best data possible for whatever they want to examine. If I have some studies that are pertinent, I share them. This is not an argument. This is just a contribution of additional information. If you want to eat veggies, run and take Vit C you will get no arguments from me. C
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- November 2, 2016 at 12:51 am
Celeste,
Yes I read your links. And no, there are no argument. I know melanoma appeared in your life despite your good nutrition habits and all the rest…
I am just a beginner here and maybe I'll see many more years. Who knows? I'm trying to find litle bits of hope here and there from survivors. Because this is what is lacking in my melanoma experience so far. If I'm going to die, I would like it to be a supportive experience. I don't have that so much (medically speaking) on my side of this forum (physical).
You, of all people, have stayed around feeding us on this forum with what's happening. For that you ought to be celebrated. But I want to feed my heart and soul with hope and life I find in survivors. Like Kim from Hawaii. Like this man I found, like Bailey O'Brien on youtube. Like yourself. Not just stats that at the moment are far from festive despite the real landscape change in the last five years.
Again, I havent played my last card yet. But my hand really suck.
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- November 2, 2016 at 12:51 am
Celeste,
Yes I read your links. And no, there are no argument. I know melanoma appeared in your life despite your good nutrition habits and all the rest…
I am just a beginner here and maybe I'll see many more years. Who knows? I'm trying to find litle bits of hope here and there from survivors. Because this is what is lacking in my melanoma experience so far. If I'm going to die, I would like it to be a supportive experience. I don't have that so much (medically speaking) on my side of this forum (physical).
You, of all people, have stayed around feeding us on this forum with what's happening. For that you ought to be celebrated. But I want to feed my heart and soul with hope and life I find in survivors. Like Kim from Hawaii. Like this man I found, like Bailey O'Brien on youtube. Like yourself. Not just stats that at the moment are far from festive despite the real landscape change in the last five years.
Again, I havent played my last card yet. But my hand really suck.
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- November 2, 2016 at 2:36 am
Just want to say your hand doesn't suck, you've gotten close to the best results someone with a deep primary could get…. extremely minimal amount of cells in 1 lymph node. It's gone now. There's no evidence of anything else. There is a really good chance you won't see melanoma in your body again. Absolutely get healthy, boost that immune system, that's good for everyone to do no matter what. Just don't put yourself down, stop telling yourself your circumstance is so grim, there are those on here actually looking at the end of the road. Your road is long and wide, get on it and start living!
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- November 2, 2016 at 2:36 am
Just want to say your hand doesn't suck, you've gotten close to the best results someone with a deep primary could get…. extremely minimal amount of cells in 1 lymph node. It's gone now. There's no evidence of anything else. There is a really good chance you won't see melanoma in your body again. Absolutely get healthy, boost that immune system, that's good for everyone to do no matter what. Just don't put yourself down, stop telling yourself your circumstance is so grim, there are those on here actually looking at the end of the road. Your road is long and wide, get on it and start living!
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- November 2, 2016 at 3:48 am
I guess I should shut up now before some get really annoyed. So I will.
Nonetheless, my heart goes out to all of you. End of the road warriors and beginners.
I'll take a break from posting. I realize that in this melanoma mess that we are all in, my situation right now is not bad enough. I get it.
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- November 2, 2016 at 3:48 am
I guess I should shut up now before some get really annoyed. So I will.
Nonetheless, my heart goes out to all of you. End of the road warriors and beginners.
I'll take a break from posting. I realize that in this melanoma mess that we are all in, my situation right now is not bad enough. I get it.
-
- November 2, 2016 at 3:48 am
I guess I should shut up now before some get really annoyed. So I will.
Nonetheless, my heart goes out to all of you. End of the road warriors and beginners.
I'll take a break from posting. I realize that in this melanoma mess that we are all in, my situation right now is not bad enough. I get it.
-
- November 2, 2016 at 2:36 am
Just want to say your hand doesn't suck, you've gotten close to the best results someone with a deep primary could get…. extremely minimal amount of cells in 1 lymph node. It's gone now. There's no evidence of anything else. There is a really good chance you won't see melanoma in your body again. Absolutely get healthy, boost that immune system, that's good for everyone to do no matter what. Just don't put yourself down, stop telling yourself your circumstance is so grim, there are those on here actually looking at the end of the road. Your road is long and wide, get on it and start living!
-
- November 2, 2016 at 12:51 am
Celeste,
Yes I read your links. And no, there are no argument. I know melanoma appeared in your life despite your good nutrition habits and all the rest…
I am just a beginner here and maybe I'll see many more years. Who knows? I'm trying to find litle bits of hope here and there from survivors. Because this is what is lacking in my melanoma experience so far. If I'm going to die, I would like it to be a supportive experience. I don't have that so much (medically speaking) on my side of this forum (physical).
You, of all people, have stayed around feeding us on this forum with what's happening. For that you ought to be celebrated. But I want to feed my heart and soul with hope and life I find in survivors. Like Kim from Hawaii. Like this man I found, like Bailey O'Brien on youtube. Like yourself. Not just stats that at the moment are far from festive despite the real landscape change in the last five years.
Again, I havent played my last card yet. But my hand really suck.
-
- November 2, 2016 at 12:28 am
Yes, I looked at what you posted. I don't comment on that which I have not read. Did you read the many articles in the link I posted? One can only do the best they can. As I noted in one blog post…coffee, curcumin (the main ingredient in mustard and curry), being more zen (decreasing stress), increasing exercise NEVER hurt anyone! And….have helped many with cancer and without…and are backed in those positive effects with more data than Vit C, if that is important to you. Science and data have actually looked at Vit C, E, and D in many regards…and in relation to their effects on cancer in particular. Vit E and D have pro's and cons since they are fat soluble and can actually cause trouble for some folks. Vit C is hard to OD on because you will simply excrete that which your body does not need. Your urine will be a very pretty bright yellow! So no particular risk there.
I am a huge proponent of a diet high in fruits and veg and daily exercise. I eat the veggies no one else will. I've always been a runner. Always worn sunscreen. I have never had high blood pressure, smoked, been over weight….etc. I lived that life before melanoma…and it didn't save me, did it? AND…I live it still!! So, even though a healthy life style didn't keep me from acquiring or progressing in my melanoma journey…I do think it is best to live as healthy a lifestyle you can, no matter who you are!!
I like folks to have the best data possible for whatever they want to examine. If I have some studies that are pertinent, I share them. This is not an argument. This is just a contribution of additional information. If you want to eat veggies, run and take Vit C you will get no arguments from me. C
-
- November 2, 2016 at 12:03 am
Celeste,
I dont know if you have read Ted's blog and melanoma story or not. He is explaining what he did when confronted with stage 4 terminal diagnostic.
I think his reasoning is not too far fetched. And about Vit C, being a biochemist, he dug out the reasons why some studies did not show such good results with it.
At any rate, I dont want to begin an argument on the subject; I wanted to point out that something appears to have definetely work out for this man and a high dosage of Vit C and a strict Vegan diet seem to have played a role in his case. And he clearly states it himself, being a skeptic, a man of science; it is something that we should carefully look at knowing there is no garentee it can work for all.
That is pretty much where we are at with our immunotherapy no? So maybe another bullet in our arsenal?
Personally, at my current limbo stage 3b, this is something I can pro actively do. And what if it helped me stay 3b for a long time? Forever? I'll take that chance for now and wish that pembro becomes a standard adjuvant for stage 3 before too long. Our battle is clearly about buying time up while enjoying the what we have. I'll do all I can to survive as long as possible. These are the cards I've been dealt.
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- November 1, 2016 at 11:22 pm
I have long posted…for years!!!….all the things that have been touted to cure cancer generally, and melanoma specifically…from coffee and curcumin, to snake venom, to exercise…and a zillion other things. Frankly, the data is much better for coffee and curcumin than anything I've found for Vit C. So, for what it's worth….,
I can't speak for guy you're referencing. Obviously, he can speak for himself. However, if Vitamin C could cure cancer….I don't think any of us would be suffering with cancer or the treatments we currently endure.
But, just like everything in life…and certainly in melanoma….folks have to decide individually, what is best for them. Celeste
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- November 2, 2016 at 5:59 am
Thank you SO MUCH for posting this. I've found it so valuable and inspiring! Aside from him having amazing results, it shines some light on the holistic approach — combining mind, body, spirit. I like what he said about "disrupting the cancer" and making lifestyle changes that allow for healing to take place. He's also very up front about what works for one person may not for another, which makes perfect sense as we're all very unique in our biochemisty. Thank you!
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- November 2, 2016 at 5:59 am
Thank you SO MUCH for posting this. I've found it so valuable and inspiring! Aside from him having amazing results, it shines some light on the holistic approach — combining mind, body, spirit. I like what he said about "disrupting the cancer" and making lifestyle changes that allow for healing to take place. He's also very up front about what works for one person may not for another, which makes perfect sense as we're all very unique in our biochemisty. Thank you!
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- November 2, 2016 at 5:59 am
Thank you SO MUCH for posting this. I've found it so valuable and inspiring! Aside from him having amazing results, it shines some light on the holistic approach — combining mind, body, spirit. I like what he said about "disrupting the cancer" and making lifestyle changes that allow for healing to take place. He's also very up front about what works for one person may not for another, which makes perfect sense as we're all very unique in our biochemisty. Thank you!
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- February 10, 2019 at 6:51 pm
Hi.
Our friend started therapy with mega dose VITAMIN C IV from PharmaLife Laboratories Romania 6 months ago.
Therapy was recommended by his oncologist and a medical nurse administers him 75 grams of VITAMIN C 3 times a week. The required dose to reach will be 100 grams per session. Tumors and cancer cells die at a maximum dose of 100 grams Vitamin C IV. so he will continue the treatment as long as necessary.
Carol
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