› Forums › Cutaneous Melanoma Community › parent with stage 4…questions
- This topic has 36 replies, 7 voices, and was last updated 10 years ago by
phtreehuggr.
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- March 30, 2014 at 11:56 pm
Hi, all-
My mom was diagnosed with stage 3 melanoma mid-February when she was in for something unrelated. She had "superficial" bladder cancer with a 1% reoccurrence rate and they found a 5mm mass in her lower abdomen. Turns out it was a cluster of nodes gone crazy and it needed to be removed immediately. 5 years ago she had a small piece of melanoma that was removed from her skin with clear margains. They did did a due test and removed her sentinel node and found that the melanoma had not entered her nodes. Well, they were wrong. There is apparently a 1-2% error rate in that test, and after they removed it the melanoma decided to go to the next node where it made its home for 5 years.
Fast forward. They removed both clusters of nodes (18 in total), and 7 of them had cancer in them. It was wrapped around an artery. The nodes were stuck to lining of her stomach (from the outside), and they also found a small lining of cancer near her ovary on the other side, as well as two small masses on that side. The PET scan (a so-called 97-98% accurate) didn't show this.
All VISIBLE cancer has been removed. Because it travelled beyond the nodes she qualifies for ipi, which she starts this coming Friday. She has also completely changed her diet…raw foods, heavy alkaline producing foods –she's a champ!
We have taken the news of no visible cancer as a positive one, as well as the ipi treatment. But since my mom is asking not to know any details from doctor, we are kind of in the dark on where everything stands. She's asked the doctor to provide her only with positive, so at her last appointment he said that people – some – are being cured by ipi, and that technically she doesn't have any in her (other than microscopic…how do they know this?).
Also I'm a bit scared because she has a sporadic light cough over the past year or so. Perhaps the PET scan also didn't show that? Are there other tests that are more accurate??
I guess I'm just wondering what all of this means. Like, it seems like good news…but is it?
Thanks :/
- Replies
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- March 31, 2014 at 12:05 am
Sorry for all the typos! I guess I can't edit from phone…
Dye test…not due*
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- March 31, 2014 at 12:05 am
Sorry for all the typos! I guess I can't edit from phone…
Dye test…not due*
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- March 31, 2014 at 12:05 am
Sorry for all the typos! I guess I can't edit from phone…
Dye test…not due*
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- March 31, 2014 at 12:12 pm
Since your mother has chosen to know as little as possible about her disease and her treatment options, that is going to make things difficult for you. Even if you educate yourself about melanoma and do your own research (like reading the posts here on MPIP), if she only wants to do exactly what her oncologist tells her to do without question, then she probably will not appreciate you pushing her to follow some other course of action that your research has suggested to you.
Whenever anyone reaches Stage IV melanoma, and especially in a case like this, I think the most important thing you can do is to make sure that she is going to a cancer center that specializes in melanoma. Things are changing so fast in the world of melanoma with so many promising new treatments in the clinical trial pipeline, that a general oncologist simply can't keep up with it all. You can find a list of the National Cancer Institute Designated Cancer Centers here http://www.cancer.gov/researchandfunding/extramural/cancercenters If you tell us where your mother lives, other members here may be able to suggest a melanoma specialist in her area.
Melanoma is a deadly disease and most treatments come with unpleasant side effects. But with the new treatments now available, more and more people are living longer and longer with a good quality of life. Many have been NED (no evidence of disease) for so long that it seems as though they may be cured. Your mother is right in wanting to hold onto her positive mental attitude– that is probably the #1 characteristic of patients who eventually "beat the beast". Don't let your personal desire to learn about melanoma or to prognosticate about the unpredictable interfere with her PMA (or your own, for that matter).
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- March 31, 2014 at 2:30 pm
This is no doubt an important question. There is good evidence that dealing with the many emotional components of cancer is crucial. Those who deal with the issues realistically have a better quality of life. The question about having a "positive mental attitude " to improve outcome is different.There is relevant information on the American Cancer Society site http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/attitudes-and-cancer . In part it states:
"Does it help to keep a positive attitude?
People with cancer and their families may feel guilty about their emotional responses to the illness. They may feel pressure to keep a positive attitude at all times, which is unrealistic. This feeling of pressure can come from within themselves, from other people, or both. Sadness, depression, guilt, fear, and anxiety are all normal parts of learning to cope with major life changes, and a cancer diagnosis is a major life change. Trying to ignore these feelings or not talking with others about them can make the person with cancer feel lonely. It can also make the emotional pain worse. And some people feel guilty or blame themselves when they can’t “stay positive,” which only adds to their emotional burden.
Along these same lines, many people want to believe that the power of the mind can control serious diseases. This is a comforting belief that can make a person feel safer from the risk of serious illness. If it were true, you could use your mind to stop the cancer from growing. But the down side of such beliefs is that when people with cancer don’t do well, they may blame themselves.
To learn more about attitude and survival, researchers looked at the emotional well-being of more than 1,000 patients with head and neck cancer to find out whether it affected survival. Over time, those who scored high on emotional well-being showed no differences in cancer growth or length of life when compared to those with low scores. Based on what we know now about how cancer starts and grows, there is no reason to believe that emotions can cause cancer or help it grow.
Can psychotherapy help people live longer?
Research in the area of therapy, stress reduction, and cancer has come up with mixed findings. This can confuse reporters and patients alike. For example, a research study done in 1989 by David Spiegel and colleagues seemed to link a difference in survival with taking part in a support group. But other researchers who did the same kinds of studies did not have the same outcomes.
A 2004 study review pooled the results of many well-designed studies of cancer patients getting psychotherapy. With more than 1,000 patients in the final results, no effect was found on survival.
In 2007, other researchers looked at all the previous studies. They found that no randomized clinical trial set up to look at survival and psychotherapy has shown a positive effect, except in cases where medical care was a confounding factor. (This means that one group’s medical care could have been different enough to affect the results.)
Finally, Spiegel himself tried to repeat the 1989 study with a new group in 2007 to see if the result would be the same as that of their earlier trial. The 2007 study reported better quality of life among those who took part in the group, but there was no difference in survival.
In the last few decades, research has further shown that giving cancer patients information in a support group setting helps reduce tension, anxiety, and tiredness (fatigue), and may lower the risk of depression. Some other studies have shown that supporting cancer patients in keeping doctors’ appointments and teaching them about their treatment may help patients follow their treatment plan. While keeping doctors’ appointments and taking cancer treatment medicines as prescribed may help people live longer, this type of support is more medical and practical rather than mental health care.
It seems clear that support groups can affect quality of life, but the available scientific evidence does not support the idea that support groups or other forms of mental health therapy can help people with cancer live longer."
Accepting the above as fact is an important part of having a realistic approach that is important for the battle ahead. It also relieves the person with cancer from the quilt and oppobrium that characterized societies' approach to the person with cancer in the past. Today we have learned that cancer patients and their families should be allowed to have and share their feelings….whatever they may be.
Brent Morris
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- March 31, 2014 at 2:30 pm
This is no doubt an important question. There is good evidence that dealing with the many emotional components of cancer is crucial. Those who deal with the issues realistically have a better quality of life. The question about having a "positive mental attitude " to improve outcome is different.There is relevant information on the American Cancer Society site http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/attitudes-and-cancer . In part it states:
"Does it help to keep a positive attitude?
People with cancer and their families may feel guilty about their emotional responses to the illness. They may feel pressure to keep a positive attitude at all times, which is unrealistic. This feeling of pressure can come from within themselves, from other people, or both. Sadness, depression, guilt, fear, and anxiety are all normal parts of learning to cope with major life changes, and a cancer diagnosis is a major life change. Trying to ignore these feelings or not talking with others about them can make the person with cancer feel lonely. It can also make the emotional pain worse. And some people feel guilty or blame themselves when they can’t “stay positive,” which only adds to their emotional burden.
Along these same lines, many people want to believe that the power of the mind can control serious diseases. This is a comforting belief that can make a person feel safer from the risk of serious illness. If it were true, you could use your mind to stop the cancer from growing. But the down side of such beliefs is that when people with cancer don’t do well, they may blame themselves.
To learn more about attitude and survival, researchers looked at the emotional well-being of more than 1,000 patients with head and neck cancer to find out whether it affected survival. Over time, those who scored high on emotional well-being showed no differences in cancer growth or length of life when compared to those with low scores. Based on what we know now about how cancer starts and grows, there is no reason to believe that emotions can cause cancer or help it grow.
Can psychotherapy help people live longer?
Research in the area of therapy, stress reduction, and cancer has come up with mixed findings. This can confuse reporters and patients alike. For example, a research study done in 1989 by David Spiegel and colleagues seemed to link a difference in survival with taking part in a support group. But other researchers who did the same kinds of studies did not have the same outcomes.
A 2004 study review pooled the results of many well-designed studies of cancer patients getting psychotherapy. With more than 1,000 patients in the final results, no effect was found on survival.
In 2007, other researchers looked at all the previous studies. They found that no randomized clinical trial set up to look at survival and psychotherapy has shown a positive effect, except in cases where medical care was a confounding factor. (This means that one group’s medical care could have been different enough to affect the results.)
Finally, Spiegel himself tried to repeat the 1989 study with a new group in 2007 to see if the result would be the same as that of their earlier trial. The 2007 study reported better quality of life among those who took part in the group, but there was no difference in survival.
In the last few decades, research has further shown that giving cancer patients information in a support group setting helps reduce tension, anxiety, and tiredness (fatigue), and may lower the risk of depression. Some other studies have shown that supporting cancer patients in keeping doctors’ appointments and teaching them about their treatment may help patients follow their treatment plan. While keeping doctors’ appointments and taking cancer treatment medicines as prescribed may help people live longer, this type of support is more medical and practical rather than mental health care.
It seems clear that support groups can affect quality of life, but the available scientific evidence does not support the idea that support groups or other forms of mental health therapy can help people with cancer live longer."
Accepting the above as fact is an important part of having a realistic approach that is important for the battle ahead. It also relieves the person with cancer from the quilt and oppobrium that characterized societies' approach to the person with cancer in the past. Today we have learned that cancer patients and their families should be allowed to have and share their feelings….whatever they may be.
Brent Morris
-
- March 31, 2014 at 2:30 pm
This is no doubt an important question. There is good evidence that dealing with the many emotional components of cancer is crucial. Those who deal with the issues realistically have a better quality of life. The question about having a "positive mental attitude " to improve outcome is different.There is relevant information on the American Cancer Society site http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/attitudes-and-cancer . In part it states:
"Does it help to keep a positive attitude?
People with cancer and their families may feel guilty about their emotional responses to the illness. They may feel pressure to keep a positive attitude at all times, which is unrealistic. This feeling of pressure can come from within themselves, from other people, or both. Sadness, depression, guilt, fear, and anxiety are all normal parts of learning to cope with major life changes, and a cancer diagnosis is a major life change. Trying to ignore these feelings or not talking with others about them can make the person with cancer feel lonely. It can also make the emotional pain worse. And some people feel guilty or blame themselves when they can’t “stay positive,” which only adds to their emotional burden.
Along these same lines, many people want to believe that the power of the mind can control serious diseases. This is a comforting belief that can make a person feel safer from the risk of serious illness. If it were true, you could use your mind to stop the cancer from growing. But the down side of such beliefs is that when people with cancer don’t do well, they may blame themselves.
To learn more about attitude and survival, researchers looked at the emotional well-being of more than 1,000 patients with head and neck cancer to find out whether it affected survival. Over time, those who scored high on emotional well-being showed no differences in cancer growth or length of life when compared to those with low scores. Based on what we know now about how cancer starts and grows, there is no reason to believe that emotions can cause cancer or help it grow.
Can psychotherapy help people live longer?
Research in the area of therapy, stress reduction, and cancer has come up with mixed findings. This can confuse reporters and patients alike. For example, a research study done in 1989 by David Spiegel and colleagues seemed to link a difference in survival with taking part in a support group. But other researchers who did the same kinds of studies did not have the same outcomes.
A 2004 study review pooled the results of many well-designed studies of cancer patients getting psychotherapy. With more than 1,000 patients in the final results, no effect was found on survival.
In 2007, other researchers looked at all the previous studies. They found that no randomized clinical trial set up to look at survival and psychotherapy has shown a positive effect, except in cases where medical care was a confounding factor. (This means that one group’s medical care could have been different enough to affect the results.)
Finally, Spiegel himself tried to repeat the 1989 study with a new group in 2007 to see if the result would be the same as that of their earlier trial. The 2007 study reported better quality of life among those who took part in the group, but there was no difference in survival.
In the last few decades, research has further shown that giving cancer patients information in a support group setting helps reduce tension, anxiety, and tiredness (fatigue), and may lower the risk of depression. Some other studies have shown that supporting cancer patients in keeping doctors’ appointments and teaching them about their treatment may help patients follow their treatment plan. While keeping doctors’ appointments and taking cancer treatment medicines as prescribed may help people live longer, this type of support is more medical and practical rather than mental health care.
It seems clear that support groups can affect quality of life, but the available scientific evidence does not support the idea that support groups or other forms of mental health therapy can help people with cancer live longer."
Accepting the above as fact is an important part of having a realistic approach that is important for the battle ahead. It also relieves the person with cancer from the quilt and oppobrium that characterized societies' approach to the person with cancer in the past. Today we have learned that cancer patients and their families should be allowed to have and share their feelings….whatever they may be.
Brent Morris
-
- March 31, 2014 at 12:12 pm
Since your mother has chosen to know as little as possible about her disease and her treatment options, that is going to make things difficult for you. Even if you educate yourself about melanoma and do your own research (like reading the posts here on MPIP), if she only wants to do exactly what her oncologist tells her to do without question, then she probably will not appreciate you pushing her to follow some other course of action that your research has suggested to you.
Whenever anyone reaches Stage IV melanoma, and especially in a case like this, I think the most important thing you can do is to make sure that she is going to a cancer center that specializes in melanoma. Things are changing so fast in the world of melanoma with so many promising new treatments in the clinical trial pipeline, that a general oncologist simply can't keep up with it all. You can find a list of the National Cancer Institute Designated Cancer Centers here http://www.cancer.gov/researchandfunding/extramural/cancercenters If you tell us where your mother lives, other members here may be able to suggest a melanoma specialist in her area.
Melanoma is a deadly disease and most treatments come with unpleasant side effects. But with the new treatments now available, more and more people are living longer and longer with a good quality of life. Many have been NED (no evidence of disease) for so long that it seems as though they may be cured. Your mother is right in wanting to hold onto her positive mental attitude– that is probably the #1 characteristic of patients who eventually "beat the beast". Don't let your personal desire to learn about melanoma or to prognosticate about the unpredictable interfere with her PMA (or your own, for that matter).
-
- March 31, 2014 at 12:12 pm
Since your mother has chosen to know as little as possible about her disease and her treatment options, that is going to make things difficult for you. Even if you educate yourself about melanoma and do your own research (like reading the posts here on MPIP), if she only wants to do exactly what her oncologist tells her to do without question, then she probably will not appreciate you pushing her to follow some other course of action that your research has suggested to you.
Whenever anyone reaches Stage IV melanoma, and especially in a case like this, I think the most important thing you can do is to make sure that she is going to a cancer center that specializes in melanoma. Things are changing so fast in the world of melanoma with so many promising new treatments in the clinical trial pipeline, that a general oncologist simply can't keep up with it all. You can find a list of the National Cancer Institute Designated Cancer Centers here http://www.cancer.gov/researchandfunding/extramural/cancercenters If you tell us where your mother lives, other members here may be able to suggest a melanoma specialist in her area.
Melanoma is a deadly disease and most treatments come with unpleasant side effects. But with the new treatments now available, more and more people are living longer and longer with a good quality of life. Many have been NED (no evidence of disease) for so long that it seems as though they may be cured. Your mother is right in wanting to hold onto her positive mental attitude– that is probably the #1 characteristic of patients who eventually "beat the beast". Don't let your personal desire to learn about melanoma or to prognosticate about the unpredictable interfere with her PMA (or your own, for that matter).
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- March 31, 2014 at 3:07 pm
I have gone to all of her appointments with her thus far (both to the oncologist and the surgeon), so I know slightly more than she does at this point. I'm just not sure I'm versed in all the terminology etc.
She is seeing a specialist in melanoma, specifically, in the Chicagoland area. He has come highly recommended by several different sources (both in the medical world, and outside), and we feel confident in his abilities.
I am more of the mind that she can kick what's left of it naturally…or rather, that is her best bet. I don't agree with putting a poison in her to help boost her immune system when I think food can do the exact same thing, whilst allowing her to feel GOOD in the process, as opposed to icky. But, she has opted to do both. She is even toying with the idea of going to Hippocrates Institute after her 10 weeks of ipi treatment.
What I'm really wondering though, is based on where she's at with the disease, what is her prognosis? She's stage IV, so that's bad, I get it…but with only "microscopic" evidence of it (I don't even know what that means and how they determine it's there?) of it, and everything "visible" removed, where does that put her? Wouldn't that make her prognosis better? I don't want it sugar coated…I just want to know if what he's saying actually MEANS anything in the grand scheme of things, given that he IS sugar coating what he says to her.
Thanks!
-K
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- March 31, 2014 at 3:07 pm
I have gone to all of her appointments with her thus far (both to the oncologist and the surgeon), so I know slightly more than she does at this point. I'm just not sure I'm versed in all the terminology etc.
She is seeing a specialist in melanoma, specifically, in the Chicagoland area. He has come highly recommended by several different sources (both in the medical world, and outside), and we feel confident in his abilities.
I am more of the mind that she can kick what's left of it naturally…or rather, that is her best bet. I don't agree with putting a poison in her to help boost her immune system when I think food can do the exact same thing, whilst allowing her to feel GOOD in the process, as opposed to icky. But, she has opted to do both. She is even toying with the idea of going to Hippocrates Institute after her 10 weeks of ipi treatment.
What I'm really wondering though, is based on where she's at with the disease, what is her prognosis? She's stage IV, so that's bad, I get it…but with only "microscopic" evidence of it (I don't even know what that means and how they determine it's there?) of it, and everything "visible" removed, where does that put her? Wouldn't that make her prognosis better? I don't want it sugar coated…I just want to know if what he's saying actually MEANS anything in the grand scheme of things, given that he IS sugar coating what he says to her.
Thanks!
-K
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- March 31, 2014 at 3:32 pm
I'm not sure that he's the "best," but he's certainly come highly recommended. She was recommended both Dr. Kuzel and Dr. John Richards –both by several different people. Her friend's husband was the head of oncology at a separate hospital, and he recommended Dr. Richards (even outside of his own hospital), as well as Kuzel…but in the end said he would personally go with Dr. Richards because he knows that if he didn't feel conifident in his ability to help her, he would send her somewhere else. That being said, we got equal recommendations for Kuzel from doctor's and patients alike.
The only thing I don't like about Dr. Richards is that he isn't a huge food advocate. He will say things like, "there are no studies that show that food helps attack cancer." Or, "while food helps boost the immune system, there are no studies that show that the boost in the immune system helps specifically fight cancer." That irritates me because I'm trying to keep up her momentum with this raw foods diet, and his weak wording makes it difficult. What he MEANS to say is that there are simply NOT ENOUGH people choosing ONLY food to attack/kill the cancer, therefore there is NOT A LARGE ENOUGH SAMPLE to perform adequate studies…that is not to say it's not helping.
Aside from that, I think he's great.
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- March 31, 2014 at 3:32 pm
I'm not sure that he's the "best," but he's certainly come highly recommended. She was recommended both Dr. Kuzel and Dr. John Richards –both by several different people. Her friend's husband was the head of oncology at a separate hospital, and he recommended Dr. Richards (even outside of his own hospital), as well as Kuzel…but in the end said he would personally go with Dr. Richards because he knows that if he didn't feel conifident in his ability to help her, he would send her somewhere else. That being said, we got equal recommendations for Kuzel from doctor's and patients alike.
The only thing I don't like about Dr. Richards is that he isn't a huge food advocate. He will say things like, "there are no studies that show that food helps attack cancer." Or, "while food helps boost the immune system, there are no studies that show that the boost in the immune system helps specifically fight cancer." That irritates me because I'm trying to keep up her momentum with this raw foods diet, and his weak wording makes it difficult. What he MEANS to say is that there are simply NOT ENOUGH people choosing ONLY food to attack/kill the cancer, therefore there is NOT A LARGE ENOUGH SAMPLE to perform adequate studies…that is not to say it's not helping.
Aside from that, I think he's great.
-
- March 31, 2014 at 3:32 pm
I'm not sure that he's the "best," but he's certainly come highly recommended. She was recommended both Dr. Kuzel and Dr. John Richards –both by several different people. Her friend's husband was the head of oncology at a separate hospital, and he recommended Dr. Richards (even outside of his own hospital), as well as Kuzel…but in the end said he would personally go with Dr. Richards because he knows that if he didn't feel conifident in his ability to help her, he would send her somewhere else. That being said, we got equal recommendations for Kuzel from doctor's and patients alike.
The only thing I don't like about Dr. Richards is that he isn't a huge food advocate. He will say things like, "there are no studies that show that food helps attack cancer." Or, "while food helps boost the immune system, there are no studies that show that the boost in the immune system helps specifically fight cancer." That irritates me because I'm trying to keep up her momentum with this raw foods diet, and his weak wording makes it difficult. What he MEANS to say is that there are simply NOT ENOUGH people choosing ONLY food to attack/kill the cancer, therefore there is NOT A LARGE ENOUGH SAMPLE to perform adequate studies…that is not to say it's not helping.
Aside from that, I think he's great.
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- March 31, 2014 at 3:33 pm
Jon Richards* (no "h")
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- March 31, 2014 at 3:33 pm
Jon Richards* (no "h")
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- March 31, 2014 at 4:38 pm
I totally appreciate that you are upset that the oncologists don't advise or help their patients by letting them know that a healthy diet of raw organic fruits and veggies can really help their bodies. It is something that also hits a sour note with me. My doctor also didn't advise me to change my diet, but when I told him that I had done so, he said that he wished all his patients took that lead to do the same.
I changed my diet because I knew I needed my body to be as healthy as possible to fight through whatever treatment the doctors planned to put me on for my stage IV diagnosis (I was 38 years old at the time.) It just makes sense to me…if we eat junk, our body is a junk yard. If we eat healthy…our body has a much better fighting chance to be healthy and heal.
So I chose to see my oncologist (for the MK-3475 drug trial) and a holistic doctor as well (for my diet and overall body health.) The holistic doctor is not covered by my insurance, but I didn't care. He was a huge help and I made a bunch of changes in my diet to help decrease the chemical intake into my body. I've been much healthier since I have made the changes (no flu or bronchitis since)…and my metastatic disease is shrinking greatly.
I had also found the Kris Carr Crazy Sexy Cancer books and movie very helpful. She was 31 years old when she received her incurable stage IV diagnosis and she was not offered any sort of treatment to help. So she chose a holistic approach and has halted her cancer growth for 11 years now. She went to Hippocrates Institute as well and learned a lot there.
I wish health and healing for you and your mum!
Laurie
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- March 31, 2014 at 4:38 pm
I totally appreciate that you are upset that the oncologists don't advise or help their patients by letting them know that a healthy diet of raw organic fruits and veggies can really help their bodies. It is something that also hits a sour note with me. My doctor also didn't advise me to change my diet, but when I told him that I had done so, he said that he wished all his patients took that lead to do the same.
I changed my diet because I knew I needed my body to be as healthy as possible to fight through whatever treatment the doctors planned to put me on for my stage IV diagnosis (I was 38 years old at the time.) It just makes sense to me…if we eat junk, our body is a junk yard. If we eat healthy…our body has a much better fighting chance to be healthy and heal.
So I chose to see my oncologist (for the MK-3475 drug trial) and a holistic doctor as well (for my diet and overall body health.) The holistic doctor is not covered by my insurance, but I didn't care. He was a huge help and I made a bunch of changes in my diet to help decrease the chemical intake into my body. I've been much healthier since I have made the changes (no flu or bronchitis since)…and my metastatic disease is shrinking greatly.
I had also found the Kris Carr Crazy Sexy Cancer books and movie very helpful. She was 31 years old when she received her incurable stage IV diagnosis and she was not offered any sort of treatment to help. So she chose a holistic approach and has halted her cancer growth for 11 years now. She went to Hippocrates Institute as well and learned a lot there.
I wish health and healing for you and your mum!
Laurie
-
- March 31, 2014 at 4:38 pm
I totally appreciate that you are upset that the oncologists don't advise or help their patients by letting them know that a healthy diet of raw organic fruits and veggies can really help their bodies. It is something that also hits a sour note with me. My doctor also didn't advise me to change my diet, but when I told him that I had done so, he said that he wished all his patients took that lead to do the same.
I changed my diet because I knew I needed my body to be as healthy as possible to fight through whatever treatment the doctors planned to put me on for my stage IV diagnosis (I was 38 years old at the time.) It just makes sense to me…if we eat junk, our body is a junk yard. If we eat healthy…our body has a much better fighting chance to be healthy and heal.
So I chose to see my oncologist (for the MK-3475 drug trial) and a holistic doctor as well (for my diet and overall body health.) The holistic doctor is not covered by my insurance, but I didn't care. He was a huge help and I made a bunch of changes in my diet to help decrease the chemical intake into my body. I've been much healthier since I have made the changes (no flu or bronchitis since)…and my metastatic disease is shrinking greatly.
I had also found the Kris Carr Crazy Sexy Cancer books and movie very helpful. She was 31 years old when she received her incurable stage IV diagnosis and she was not offered any sort of treatment to help. So she chose a holistic approach and has halted her cancer growth for 11 years now. She went to Hippocrates Institute as well and learned a lot there.
I wish health and healing for you and your mum!
Laurie
-
- March 31, 2014 at 3:33 pm
Jon Richards* (no "h")
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- March 31, 2014 at 4:25 pm
Hello,
Since you are from the Chicago area then I would like to recommend a Vitamin D3 check, the test is hydroxy 25. Most people above Atlanta are deficient in it and my husbands was very low. He tries to get some from the sun but with the long winter a lot of supplementation is needed. It has also shown to help those with colon cancer and breast cancer and according to our research nurse who used to work with newborn babies and most of those are being born deficient and so they are supplementing the mothers before they are born to help with this problem.
The oncologist found out how much it helped my husband and he has started checking more of his patients and advising them to supplement so they are in the higher numbers. So you might want to see about having your mother's checked. We live in Ohio so not enough of the natural stuff here as well and my husbands melanoma was where the sun doesn't shine and he worked mainly midnight turn for 40 years so was really lacking in Vitamin D3.
Judy (loving wife of Gene Stage IV and now NED for 1.5 years after taking IPI)
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- March 31, 2014 at 4:25 pm
Hello,
Since you are from the Chicago area then I would like to recommend a Vitamin D3 check, the test is hydroxy 25. Most people above Atlanta are deficient in it and my husbands was very low. He tries to get some from the sun but with the long winter a lot of supplementation is needed. It has also shown to help those with colon cancer and breast cancer and according to our research nurse who used to work with newborn babies and most of those are being born deficient and so they are supplementing the mothers before they are born to help with this problem.
The oncologist found out how much it helped my husband and he has started checking more of his patients and advising them to supplement so they are in the higher numbers. So you might want to see about having your mother's checked. We live in Ohio so not enough of the natural stuff here as well and my husbands melanoma was where the sun doesn't shine and he worked mainly midnight turn for 40 years so was really lacking in Vitamin D3.
Judy (loving wife of Gene Stage IV and now NED for 1.5 years after taking IPI)
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- April 1, 2014 at 12:11 am
The idea that anyone would push a cancer patient to go "natural," and put their faith in diet rather than put "poison" in their body…..makes me uncomfortable. This is a personal decision and as her doctor said, there is no evidence this works better or at all. There are risks and benefits with any treatment and the patient is the one to choose. If patients ask for help or seem to want it, then opinions and well researched information can be offered.
Sorry, I know you want to help her as much as possible, but this is her choice.
Of course, one should be at least eating a healthy diet, with good organic fruits and vegetables. Since some cancer patients have muscle wasting, protein should also be included. If her meds cause any candida problems, then she could cut back on carbs/sugar. But the thing here to do is find out what effect her meds have on metabolism, etc. and help there.
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- April 1, 2014 at 12:11 am
The idea that anyone would push a cancer patient to go "natural," and put their faith in diet rather than put "poison" in their body…..makes me uncomfortable. This is a personal decision and as her doctor said, there is no evidence this works better or at all. There are risks and benefits with any treatment and the patient is the one to choose. If patients ask for help or seem to want it, then opinions and well researched information can be offered.
Sorry, I know you want to help her as much as possible, but this is her choice.
Of course, one should be at least eating a healthy diet, with good organic fruits and vegetables. Since some cancer patients have muscle wasting, protein should also be included. If her meds cause any candida problems, then she could cut back on carbs/sugar. But the thing here to do is find out what effect her meds have on metabolism, etc. and help there.
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- April 2, 2014 at 4:35 pm
Sorry if I wasn't clear. I'm not pushing her to go natural. I've suggested she change her diet, done the research for her and just guide her. She's willingly doing it; she just doesn't like to do the reading on what's good for her and what's not. If I tell her, she'll go out and buy it.
We have all told her that she needs to feel comfortable with her decision – that she needs to go with what makes her feel good; her intuition – and she has decided to do both. She even says how she feels better than she has in YEARS simply because of changing her diet…heck, we could all stand to do some of the same, cancer or no cancer.
She has always been a huge sweet lover, but she's cut it out without any problems. It will undoubtedly help her in other areas too since she has really horrible arthritis in her hands. She's only 55. Which is a whole other animal. She was on Enbrel for her arthritis and then developed "superficial" bladder cancer (which is actually a documented side effect of the medication). We were cursing the Enbrel, but if it weren't for her taking that, developing symptoms from a lesion on her bladder and performing a CT scan, we would have never know she had metastatic melanoma!
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- April 2, 2014 at 4:35 pm
Sorry if I wasn't clear. I'm not pushing her to go natural. I've suggested she change her diet, done the research for her and just guide her. She's willingly doing it; she just doesn't like to do the reading on what's good for her and what's not. If I tell her, she'll go out and buy it.
We have all told her that she needs to feel comfortable with her decision – that she needs to go with what makes her feel good; her intuition – and she has decided to do both. She even says how she feels better than she has in YEARS simply because of changing her diet…heck, we could all stand to do some of the same, cancer or no cancer.
She has always been a huge sweet lover, but she's cut it out without any problems. It will undoubtedly help her in other areas too since she has really horrible arthritis in her hands. She's only 55. Which is a whole other animal. She was on Enbrel for her arthritis and then developed "superficial" bladder cancer (which is actually a documented side effect of the medication). We were cursing the Enbrel, but if it weren't for her taking that, developing symptoms from a lesion on her bladder and performing a CT scan, we would have never know she had metastatic melanoma!
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- April 2, 2014 at 4:35 pm
Sorry if I wasn't clear. I'm not pushing her to go natural. I've suggested she change her diet, done the research for her and just guide her. She's willingly doing it; she just doesn't like to do the reading on what's good for her and what's not. If I tell her, she'll go out and buy it.
We have all told her that she needs to feel comfortable with her decision – that she needs to go with what makes her feel good; her intuition – and she has decided to do both. She even says how she feels better than she has in YEARS simply because of changing her diet…heck, we could all stand to do some of the same, cancer or no cancer.
She has always been a huge sweet lover, but she's cut it out without any problems. It will undoubtedly help her in other areas too since she has really horrible arthritis in her hands. She's only 55. Which is a whole other animal. She was on Enbrel for her arthritis and then developed "superficial" bladder cancer (which is actually a documented side effect of the medication). We were cursing the Enbrel, but if it weren't for her taking that, developing symptoms from a lesion on her bladder and performing a CT scan, we would have never know she had metastatic melanoma!
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- April 1, 2014 at 12:11 am
The idea that anyone would push a cancer patient to go "natural," and put their faith in diet rather than put "poison" in their body…..makes me uncomfortable. This is a personal decision and as her doctor said, there is no evidence this works better or at all. There are risks and benefits with any treatment and the patient is the one to choose. If patients ask for help or seem to want it, then opinions and well researched information can be offered.
Sorry, I know you want to help her as much as possible, but this is her choice.
Of course, one should be at least eating a healthy diet, with good organic fruits and vegetables. Since some cancer patients have muscle wasting, protein should also be included. If her meds cause any candida problems, then she could cut back on carbs/sugar. But the thing here to do is find out what effect her meds have on metabolism, etc. and help there.
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- March 31, 2014 at 4:25 pm
Hello,
Since you are from the Chicago area then I would like to recommend a Vitamin D3 check, the test is hydroxy 25. Most people above Atlanta are deficient in it and my husbands was very low. He tries to get some from the sun but with the long winter a lot of supplementation is needed. It has also shown to help those with colon cancer and breast cancer and according to our research nurse who used to work with newborn babies and most of those are being born deficient and so they are supplementing the mothers before they are born to help with this problem.
The oncologist found out how much it helped my husband and he has started checking more of his patients and advising them to supplement so they are in the higher numbers. So you might want to see about having your mother's checked. We live in Ohio so not enough of the natural stuff here as well and my husbands melanoma was where the sun doesn't shine and he worked mainly midnight turn for 40 years so was really lacking in Vitamin D3.
Judy (loving wife of Gene Stage IV and now NED for 1.5 years after taking IPI)
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- March 31, 2014 at 3:07 pm
I have gone to all of her appointments with her thus far (both to the oncologist and the surgeon), so I know slightly more than she does at this point. I'm just not sure I'm versed in all the terminology etc.
She is seeing a specialist in melanoma, specifically, in the Chicagoland area. He has come highly recommended by several different sources (both in the medical world, and outside), and we feel confident in his abilities.
I am more of the mind that she can kick what's left of it naturally…or rather, that is her best bet. I don't agree with putting a poison in her to help boost her immune system when I think food can do the exact same thing, whilst allowing her to feel GOOD in the process, as opposed to icky. But, she has opted to do both. She is even toying with the idea of going to Hippocrates Institute after her 10 weeks of ipi treatment.
What I'm really wondering though, is based on where she's at with the disease, what is her prognosis? She's stage IV, so that's bad, I get it…but with only "microscopic" evidence of it (I don't even know what that means and how they determine it's there?) of it, and everything "visible" removed, where does that put her? Wouldn't that make her prognosis better? I don't want it sugar coated…I just want to know if what he's saying actually MEANS anything in the grand scheme of things, given that he IS sugar coating what he says to her.
Thanks!
-K
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Tagged: cutaneous melanoma
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