› Forums › General Melanoma Community › Vitamin D deficiency… suggestions, experience or insight?
- This topic has 60 replies, 11 voices, and was last updated 10 years, 9 months ago by
LivingNTN.
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- January 31, 2013 at 6:01 pm
I requested my Vit D levels checked here at St Louis yest. Got a call from the nurse that it is pretty low, at 16, when she said normal should be 30.Dr Linette does not routinely give rx for this issue and recommended I contact my fam Dr for a high dose supplement. I have seen posts on here concerning vit D levels ( which is why I asked to have it checked to begin with). To be honest, I feel the best I have in a year, so I am not feeling symptoms that I can tell. Nevertheless, it does seem like an important issue.
I requested my Vit D levels checked here at St Louis yest. Got a call from the nurse that it is pretty low, at 16, when she said normal should be 30.Dr Linette does not routinely give rx for this issue and recommended I contact my fam Dr for a high dose supplement. I have seen posts on here concerning vit D levels ( which is why I asked to have it checked to begin with). To be honest, I feel the best I have in a year, so I am not feeling symptoms that I can tell. Nevertheless, it does seem like an important issue. I always like to be informed as best as possible beforehand, so wanting to research it before I call Dr.
Thanks!
Tina
- Replies
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- January 31, 2013 at 6:46 pm
When my levels were low my family Doctor just wrote a prescription for a 2 week (I think) prescription of 25,000IU daily and then I bought online the Now brand of 5,000IU that I take 4 to 5 times per week. But getting the prescription from your family Doc shouldn’t be a big deal. Just let them know what your level was and they’ll give you the correct prescription.Thandster
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- January 31, 2013 at 6:46 pm
When my levels were low my family Doctor just wrote a prescription for a 2 week (I think) prescription of 25,000IU daily and then I bought online the Now brand of 5,000IU that I take 4 to 5 times per week. But getting the prescription from your family Doc shouldn’t be a big deal. Just let them know what your level was and they’ll give you the correct prescription.Thandster
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- January 31, 2013 at 6:46 pm
When my levels were low my family Doctor just wrote a prescription for a 2 week (I think) prescription of 25,000IU daily and then I bought online the Now brand of 5,000IU that I take 4 to 5 times per week. But getting the prescription from your family Doc shouldn’t be a big deal. Just let them know what your level was and they’ll give you the correct prescription.Thandster
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- January 31, 2013 at 8:10 pm
Hello Tina,
I have done extensive research on Vitamin D3. Check a search on my name and Vitamin D and you will see many posts. In short what I have found is that all cancer patients should be in the 80 – 100 range. If you were at 16 you were very low as 30 is the minimum anyone should be. It is a real possiblity that your breast cancer was also caused by a deficiency of Vitamin D3. You should also be taking Ubinquinol (CoQ10) make sure it is not the one that ends in e (ubinquinole). A few other places for you to check out Dr. Mercola and Vitamin D and also naturalnews.com and vitamin D.
Congratulations on being a home schooler. We need more people to teach their kids a good education. Best Wishes, Gene
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- January 31, 2013 at 11:31 pm
Gene,
I can't wait for the anonymous (a.k.a. no guts) posters that will trash your recommendations. I "do battle" with them very often. I'm not saying that I agree or disagree with your recommendations as I know very very little about these supplements. Just saying that there are some people on here that don't believe that food, supplements, and anything aside from a drug can make a difference.
Jake
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- February 1, 2013 at 1:24 am
Ok this is not anonymous.1) I think to tell Tina that her low vitamin D levels might have contributed to her breast cancer is insensitive and cruel. I KNOW my Mel was caused by sun exposure. So what? I take the needed steps to protect myself moving forward, as Tina is obviously doing. No need to rub someone’s nose in what is merely your opinion, Gene.
2) I believe that Dr. Mercola is a quack.
3) I believe that foods, supplements, etc. can play an important part in our health. I also think that we should inform our medical teams of what we take.
3) I do not think that anonymous necessarily means no guts, and in some cases, I think it can serve a purpose. If I had a very sensitive subject about which I were seeking advice, I might choose to post anonymously. However I have trouble when it’s used repetitively by the same posters–I don’t feel as connected or empathetic with them as when I know someone’s name, and sometimes it’s downright confusing.
Just my own opinions, folks.
Karen -
- February 1, 2013 at 1:24 am
Ok this is not anonymous.1) I think to tell Tina that her low vitamin D levels might have contributed to her breast cancer is insensitive and cruel. I KNOW my Mel was caused by sun exposure. So what? I take the needed steps to protect myself moving forward, as Tina is obviously doing. No need to rub someone’s nose in what is merely your opinion, Gene.
2) I believe that Dr. Mercola is a quack.
3) I believe that foods, supplements, etc. can play an important part in our health. I also think that we should inform our medical teams of what we take.
3) I do not think that anonymous necessarily means no guts, and in some cases, I think it can serve a purpose. If I had a very sensitive subject about which I were seeking advice, I might choose to post anonymously. However I have trouble when it’s used repetitively by the same posters–I don’t feel as connected or empathetic with them as when I know someone’s name, and sometimes it’s downright confusing.
Just my own opinions, folks.
Karen -
- February 1, 2013 at 1:24 am
Ok this is not anonymous.1) I think to tell Tina that her low vitamin D levels might have contributed to her breast cancer is insensitive and cruel. I KNOW my Mel was caused by sun exposure. So what? I take the needed steps to protect myself moving forward, as Tina is obviously doing. No need to rub someone’s nose in what is merely your opinion, Gene.
2) I believe that Dr. Mercola is a quack.
3) I believe that foods, supplements, etc. can play an important part in our health. I also think that we should inform our medical teams of what we take.
3) I do not think that anonymous necessarily means no guts, and in some cases, I think it can serve a purpose. If I had a very sensitive subject about which I were seeking advice, I might choose to post anonymously. However I have trouble when it’s used repetitively by the same posters–I don’t feel as connected or empathetic with them as when I know someone’s name, and sometimes it’s downright confusing.
Just my own opinions, folks.
Karen -
- February 1, 2013 at 4:10 am
Karen,
I for one have spent literally hundreds of hours researching the causes of my melanoma and in all of my research it comes up repeatedly that there is a serious deficiency of Vitamin D3 worldwide. As far as breast cancer is concerned this is a well documented fact that Vitamin D3 could cause breast and colon cancers. If you don't believe me look it up. Also according to my research nurse on my clinical trial who was formally working with breast cancer patients before switching to melanoma she said that it was a fact about Vitamin D3 deficiency as well.
As far as telling Tina about her breast cancer is insensitive and cruel, I for one would like to know what caused my cancer. If she feels the same as you I apologize, I have no intentions of being mean and cruel.
In response to "I know my mel was caused by sun", please provide some CONCRETE evidence that sun exposure causes melanoma. In all of my research the only cancer that the sun causes are basal and squamous cell and not melanoma. I would truly appreciate you sending me a link that positively states that research was done in which they can prove that sun exposure causes melanoma.
I have located several reputable sources that state that melanoma is not caused by sun exposure and I am waiting for someone to post a reputable source that states it does cause melanoma. No hearsay or sunscreen BS please! Please don't brother sending info from the American Cancer Society or the Skin Cancer websites as they have no proof.
2) As far as Dr. Mercola is concerned, I believe he is a truthseeker. If you want to see a real quack go to quackwatch.com. Dr. Mercola is informing people about all types of health concerns that do not provide income to Big Pharma, Hospitals and Drs. Many people don't credit Dr. Mercola due to the fact that he has products for sale on his website and what amazes me is if you go to your local Dr. he/she has products for sale too (prescription drugs and vaccines) and no one gets offended by buying these products. And we won't even discuss the side effects!
By the way do you realize that mammograms cause breast cancer. Do you know why they are still in use? The answer is that General Electric, Simens and others sells these very expensive machines and hospitals and Big Pharm make a lot of money off of them. Don't believe me? do a search on "Do Mammograms cause breast cancer". Also another shocking fact is that if you survive Chemotherapy there is a real good chance that you will get some other type of cancer. Chemo causes cancer.
In regards to your food and supplements playing an important part – they are the cure. As far as your statement to inform our medical teams of what we take, the real truth is your medical team has no idea about nutrition, foods and supplements and that is precisely why they never advise you to take any. They only know what big Pharma has to offer and what is acceptable in the course of making big money. This is not to say that your local oncologist is not trying to do the best that he/she can do. The game is ruled by the major players and making big money is their answer. Lastly, keep in mind that President Nixon declared a war on cancer in 1971 and look at where we are today as far as finding a cure!
Best wishes to you and all who are fighting this beast.
Gene
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- February 1, 2013 at 5:01 am
There is some evidence to suggest that vitamin D3 supplemantation can reduce the risk of developing melanoma. Once you do have it though, the story could be very different. Vitamin D3 is a very strong immunomodulator, and receptors for VD are found most abundantly on CD8+ lymphocytes. It seems that VD can stimulate the innate immune system (including Tregs) while suppressing the adaptive/Th1 immune system, which includes CD8+ cytotoxic lymphocytes.
So, if you are undergoing any type of immunotherapy, high VD supplementation could be an extemely risky thing to do as you basically want minimial Tregs and as many CD4/CD8 cells as you can get. VD might be good for autoimmune diseases, but when taking Ipi, that is essentially what you want to get.
I do think supplements and nutrition are hugely important and should be playing a greater role in treatment. However, issuing blanket statements like needing to take 3x the recomended amount of VD can be very dangerous.
Any research done on nutraceuticals and supplements should be done scientifically, and not based on biased websites by companies trying to sell you something.
Ben.
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- February 1, 2013 at 5:01 am
There is some evidence to suggest that vitamin D3 supplemantation can reduce the risk of developing melanoma. Once you do have it though, the story could be very different. Vitamin D3 is a very strong immunomodulator, and receptors for VD are found most abundantly on CD8+ lymphocytes. It seems that VD can stimulate the innate immune system (including Tregs) while suppressing the adaptive/Th1 immune system, which includes CD8+ cytotoxic lymphocytes.
So, if you are undergoing any type of immunotherapy, high VD supplementation could be an extemely risky thing to do as you basically want minimial Tregs and as many CD4/CD8 cells as you can get. VD might be good for autoimmune diseases, but when taking Ipi, that is essentially what you want to get.
I do think supplements and nutrition are hugely important and should be playing a greater role in treatment. However, issuing blanket statements like needing to take 3x the recomended amount of VD can be very dangerous.
Any research done on nutraceuticals and supplements should be done scientifically, and not based on biased websites by companies trying to sell you something.
Ben.
-
- February 1, 2013 at 5:01 am
There is some evidence to suggest that vitamin D3 supplemantation can reduce the risk of developing melanoma. Once you do have it though, the story could be very different. Vitamin D3 is a very strong immunomodulator, and receptors for VD are found most abundantly on CD8+ lymphocytes. It seems that VD can stimulate the innate immune system (including Tregs) while suppressing the adaptive/Th1 immune system, which includes CD8+ cytotoxic lymphocytes.
So, if you are undergoing any type of immunotherapy, high VD supplementation could be an extemely risky thing to do as you basically want minimial Tregs and as many CD4/CD8 cells as you can get. VD might be good for autoimmune diseases, but when taking Ipi, that is essentially what you want to get.
I do think supplements and nutrition are hugely important and should be playing a greater role in treatment. However, issuing blanket statements like needing to take 3x the recomended amount of VD can be very dangerous.
Any research done on nutraceuticals and supplements should be done scientifically, and not based on biased websites by companies trying to sell you something.
Ben.
-
- February 1, 2013 at 8:28 pm
Gene,
I'm not a fan of Mercola and while it is true that there are many doctors that intentionally benefit from writing prescriptions for medicines, many do not. Just like in almost any field, there are the honest ones and the unscrupulous ones. Personally, I'd rather listen to Dr. Oz than Dr. Mercola. As for your claim that melanoma is not caused by UV damage, I haven't actually seen the proof but my intuition tells me that UV causes spots to appear, spots change over time, spots are biopsied, and spots are found to contain malignant melanoma.
Jake
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- February 1, 2013 at 8:28 pm
Gene,
I'm not a fan of Mercola and while it is true that there are many doctors that intentionally benefit from writing prescriptions for medicines, many do not. Just like in almost any field, there are the honest ones and the unscrupulous ones. Personally, I'd rather listen to Dr. Oz than Dr. Mercola. As for your claim that melanoma is not caused by UV damage, I haven't actually seen the proof but my intuition tells me that UV causes spots to appear, spots change over time, spots are biopsied, and spots are found to contain malignant melanoma.
Jake
-
- February 1, 2013 at 8:28 pm
Gene,
I'm not a fan of Mercola and while it is true that there are many doctors that intentionally benefit from writing prescriptions for medicines, many do not. Just like in almost any field, there are the honest ones and the unscrupulous ones. Personally, I'd rather listen to Dr. Oz than Dr. Mercola. As for your claim that melanoma is not caused by UV damage, I haven't actually seen the proof but my intuition tells me that UV causes spots to appear, spots change over time, spots are biopsied, and spots are found to contain malignant melanoma.
Jake
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- February 1, 2013 at 10:45 pm
Jake,
I lost allot of respect for Dr. Oz when he had Dr. Mercola on his show and asked him to leave the stage when he had another quest that clearly would have lost a debate if he (Dr. Mercola) was allowed to question the other quest. You must always keep in mind that the purpose of TV is to sell you something. Dr. Oz will never tell you the complete truth because the advertisers will drop his show. It is all about money. This show is a gold mine for advertisers,hire a handsome doctor who speaks well and the woman will all dream about him. Do you ever wonder how Dr. Oz knows so much about health issues considering that he is a heart doctor? I personally take any TV show or any printed material such as magazines that are funded by advertising with skepticism.
In regards to the sun and the melanoma issue, yes the sun does cause skin damage. It also caused skin cancer, however I haven't yet found any real proof that it cases melanoma. If the sun is the real cause why does melanoma start from areas that never are exposed to the sun?
Best wishes,
Gene
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- February 1, 2013 at 10:45 pm
Jake,
I lost allot of respect for Dr. Oz when he had Dr. Mercola on his show and asked him to leave the stage when he had another quest that clearly would have lost a debate if he (Dr. Mercola) was allowed to question the other quest. You must always keep in mind that the purpose of TV is to sell you something. Dr. Oz will never tell you the complete truth because the advertisers will drop his show. It is all about money. This show is a gold mine for advertisers,hire a handsome doctor who speaks well and the woman will all dream about him. Do you ever wonder how Dr. Oz knows so much about health issues considering that he is a heart doctor? I personally take any TV show or any printed material such as magazines that are funded by advertising with skepticism.
In regards to the sun and the melanoma issue, yes the sun does cause skin damage. It also caused skin cancer, however I haven't yet found any real proof that it cases melanoma. If the sun is the real cause why does melanoma start from areas that never are exposed to the sun?
Best wishes,
Gene
-
- February 1, 2013 at 10:45 pm
Jake,
I lost allot of respect for Dr. Oz when he had Dr. Mercola on his show and asked him to leave the stage when he had another quest that clearly would have lost a debate if he (Dr. Mercola) was allowed to question the other quest. You must always keep in mind that the purpose of TV is to sell you something. Dr. Oz will never tell you the complete truth because the advertisers will drop his show. It is all about money. This show is a gold mine for advertisers,hire a handsome doctor who speaks well and the woman will all dream about him. Do you ever wonder how Dr. Oz knows so much about health issues considering that he is a heart doctor? I personally take any TV show or any printed material such as magazines that are funded by advertising with skepticism.
In regards to the sun and the melanoma issue, yes the sun does cause skin damage. It also caused skin cancer, however I haven't yet found any real proof that it cases melanoma. If the sun is the real cause why does melanoma start from areas that never are exposed to the sun?
Best wishes,
Gene
-
- February 1, 2013 at 4:10 am
Karen,
I for one have spent literally hundreds of hours researching the causes of my melanoma and in all of my research it comes up repeatedly that there is a serious deficiency of Vitamin D3 worldwide. As far as breast cancer is concerned this is a well documented fact that Vitamin D3 could cause breast and colon cancers. If you don't believe me look it up. Also according to my research nurse on my clinical trial who was formally working with breast cancer patients before switching to melanoma she said that it was a fact about Vitamin D3 deficiency as well.
As far as telling Tina about her breast cancer is insensitive and cruel, I for one would like to know what caused my cancer. If she feels the same as you I apologize, I have no intentions of being mean and cruel.
In response to "I know my mel was caused by sun", please provide some CONCRETE evidence that sun exposure causes melanoma. In all of my research the only cancer that the sun causes are basal and squamous cell and not melanoma. I would truly appreciate you sending me a link that positively states that research was done in which they can prove that sun exposure causes melanoma.
I have located several reputable sources that state that melanoma is not caused by sun exposure and I am waiting for someone to post a reputable source that states it does cause melanoma. No hearsay or sunscreen BS please! Please don't brother sending info from the American Cancer Society or the Skin Cancer websites as they have no proof.
2) As far as Dr. Mercola is concerned, I believe he is a truthseeker. If you want to see a real quack go to quackwatch.com. Dr. Mercola is informing people about all types of health concerns that do not provide income to Big Pharma, Hospitals and Drs. Many people don't credit Dr. Mercola due to the fact that he has products for sale on his website and what amazes me is if you go to your local Dr. he/she has products for sale too (prescription drugs and vaccines) and no one gets offended by buying these products. And we won't even discuss the side effects!
By the way do you realize that mammograms cause breast cancer. Do you know why they are still in use? The answer is that General Electric, Simens and others sells these very expensive machines and hospitals and Big Pharm make a lot of money off of them. Don't believe me? do a search on "Do Mammograms cause breast cancer". Also another shocking fact is that if you survive Chemotherapy there is a real good chance that you will get some other type of cancer. Chemo causes cancer.
In regards to your food and supplements playing an important part – they are the cure. As far as your statement to inform our medical teams of what we take, the real truth is your medical team has no idea about nutrition, foods and supplements and that is precisely why they never advise you to take any. They only know what big Pharma has to offer and what is acceptable in the course of making big money. This is not to say that your local oncologist is not trying to do the best that he/she can do. The game is ruled by the major players and making big money is their answer. Lastly, keep in mind that President Nixon declared a war on cancer in 1971 and look at where we are today as far as finding a cure!
Best wishes to you and all who are fighting this beast.
Gene
-
- February 1, 2013 at 4:10 am
Karen,
I for one have spent literally hundreds of hours researching the causes of my melanoma and in all of my research it comes up repeatedly that there is a serious deficiency of Vitamin D3 worldwide. As far as breast cancer is concerned this is a well documented fact that Vitamin D3 could cause breast and colon cancers. If you don't believe me look it up. Also according to my research nurse on my clinical trial who was formally working with breast cancer patients before switching to melanoma she said that it was a fact about Vitamin D3 deficiency as well.
As far as telling Tina about her breast cancer is insensitive and cruel, I for one would like to know what caused my cancer. If she feels the same as you I apologize, I have no intentions of being mean and cruel.
In response to "I know my mel was caused by sun", please provide some CONCRETE evidence that sun exposure causes melanoma. In all of my research the only cancer that the sun causes are basal and squamous cell and not melanoma. I would truly appreciate you sending me a link that positively states that research was done in which they can prove that sun exposure causes melanoma.
I have located several reputable sources that state that melanoma is not caused by sun exposure and I am waiting for someone to post a reputable source that states it does cause melanoma. No hearsay or sunscreen BS please! Please don't brother sending info from the American Cancer Society or the Skin Cancer websites as they have no proof.
2) As far as Dr. Mercola is concerned, I believe he is a truthseeker. If you want to see a real quack go to quackwatch.com. Dr. Mercola is informing people about all types of health concerns that do not provide income to Big Pharma, Hospitals and Drs. Many people don't credit Dr. Mercola due to the fact that he has products for sale on his website and what amazes me is if you go to your local Dr. he/she has products for sale too (prescription drugs and vaccines) and no one gets offended by buying these products. And we won't even discuss the side effects!
By the way do you realize that mammograms cause breast cancer. Do you know why they are still in use? The answer is that General Electric, Simens and others sells these very expensive machines and hospitals and Big Pharm make a lot of money off of them. Don't believe me? do a search on "Do Mammograms cause breast cancer". Also another shocking fact is that if you survive Chemotherapy there is a real good chance that you will get some other type of cancer. Chemo causes cancer.
In regards to your food and supplements playing an important part – they are the cure. As far as your statement to inform our medical teams of what we take, the real truth is your medical team has no idea about nutrition, foods and supplements and that is precisely why they never advise you to take any. They only know what big Pharma has to offer and what is acceptable in the course of making big money. This is not to say that your local oncologist is not trying to do the best that he/she can do. The game is ruled by the major players and making big money is their answer. Lastly, keep in mind that President Nixon declared a war on cancer in 1971 and look at where we are today as far as finding a cure!
Best wishes to you and all who are fighting this beast.
Gene
-
- January 31, 2013 at 11:31 pm
Gene,
I can't wait for the anonymous (a.k.a. no guts) posters that will trash your recommendations. I "do battle" with them very often. I'm not saying that I agree or disagree with your recommendations as I know very very little about these supplements. Just saying that there are some people on here that don't believe that food, supplements, and anything aside from a drug can make a difference.
Jake
-
- January 31, 2013 at 11:31 pm
Gene,
I can't wait for the anonymous (a.k.a. no guts) posters that will trash your recommendations. I "do battle" with them very often. I'm not saying that I agree or disagree with your recommendations as I know very very little about these supplements. Just saying that there are some people on here that don't believe that food, supplements, and anything aside from a drug can make a difference.
Jake
-
- January 31, 2013 at 8:10 pm
Hello Tina,
I have done extensive research on Vitamin D3. Check a search on my name and Vitamin D and you will see many posts. In short what I have found is that all cancer patients should be in the 80 – 100 range. If you were at 16 you were very low as 30 is the minimum anyone should be. It is a real possiblity that your breast cancer was also caused by a deficiency of Vitamin D3. You should also be taking Ubinquinol (CoQ10) make sure it is not the one that ends in e (ubinquinole). A few other places for you to check out Dr. Mercola and Vitamin D and also naturalnews.com and vitamin D.
Congratulations on being a home schooler. We need more people to teach their kids a good education. Best Wishes, Gene
-
- January 31, 2013 at 8:10 pm
Hello Tina,
I have done extensive research on Vitamin D3. Check a search on my name and Vitamin D and you will see many posts. In short what I have found is that all cancer patients should be in the 80 – 100 range. If you were at 16 you were very low as 30 is the minimum anyone should be. It is a real possiblity that your breast cancer was also caused by a deficiency of Vitamin D3. You should also be taking Ubinquinol (CoQ10) make sure it is not the one that ends in e (ubinquinole). A few other places for you to check out Dr. Mercola and Vitamin D and also naturalnews.com and vitamin D.
Congratulations on being a home schooler. We need more people to teach their kids a good education. Best Wishes, Gene
-
- February 1, 2013 at 4:39 am
O.K….everyone is right here…we all have a piece of the puzzle and all the pieces are required to complete the picture.
This week there have been two very important posts from long term stage IV survivors, Allen C and Carole K . Both make strong points about their choice to follow holistic treatments and obviously have done well by them. This is a big disease and we need all the input from those who have survived this long, to help us find the answers we are seeking.
It's o.k. to disagree, but we are all entitled to the information and we can all draw our own conclusions based on our own beliefs in treatments, which may include traditional, holistic, or combination of both, spiritual or other………the point being, we all come from different corners all seeking the same answer, we're all searching for the same ….CURE….but we all have our own gut feelings about the treatments we are willing to try.
I think it is very important to make your posts based on facts that we can all research and check for ourselves and it's o.k. to give your opinion too ….but it is just that….you're opinion.
I too take a supplements and hope with all my heart, they are doing something for me to win my battle against this MM. If I do win, will I know exactly what helped me…..probably not, but I will tell others what I did!
Please respect each other….we are all fighting a great battle and we all need the wisdom and support of each other.
love to everyone,
Swanee
-
- February 1, 2013 at 4:39 am
O.K….everyone is right here…we all have a piece of the puzzle and all the pieces are required to complete the picture.
This week there have been two very important posts from long term stage IV survivors, Allen C and Carole K . Both make strong points about their choice to follow holistic treatments and obviously have done well by them. This is a big disease and we need all the input from those who have survived this long, to help us find the answers we are seeking.
It's o.k. to disagree, but we are all entitled to the information and we can all draw our own conclusions based on our own beliefs in treatments, which may include traditional, holistic, or combination of both, spiritual or other………the point being, we all come from different corners all seeking the same answer, we're all searching for the same ….CURE….but we all have our own gut feelings about the treatments we are willing to try.
I think it is very important to make your posts based on facts that we can all research and check for ourselves and it's o.k. to give your opinion too ….but it is just that….you're opinion.
I too take a supplements and hope with all my heart, they are doing something for me to win my battle against this MM. If I do win, will I know exactly what helped me…..probably not, but I will tell others what I did!
Please respect each other….we are all fighting a great battle and we all need the wisdom and support of each other.
love to everyone,
Swanee
-
- February 1, 2013 at 2:25 pm
Thank you all… I really do appreciate you taking the time to give all these responses. Gene… I knew you had done much looking into this, now I know how to search that up & I will enjoy delving into resources you and others mentioned. I had hoped to get just such responses so I could get started at looking into this without having to repeat every bit of research others have done. Has your Dr ever mentioned a concern abt combining Vit D supplementation with the ipi?
Karen, thank you so much for being concerned that I would feel hurt by Gene's post. I promise I did not take it in a negative way… you would have to work pretty hard to hurt my feelings & I know everything here is in response to my request and only intended to help. I never had my Vit D levels checked back in the day 11 yrs ago when I was dx with breast cancer ( and 3 months later, melanoma)… but have always felt there was some type of immunological relation between the 2 cancers, since they occured so closely together and with no family history… what the relationship is, I will probably never know for sure.. I doubt my VitD levels would have been as they are now because I did spend much more time outdoors. Being on Zelboraf last yr and unable to be in the sun for more than 2 minutes without blistering kind-of put the brakes on outdoor work or recreation. I spent my growing up yrs in FL and then our young married life in Central Tx… so I got more than my fair share of time in the sun during those yrs.
Ben, you also bring up something I had not heard of before, so I will look into that as well. I like to be able to look at this from all angles & try to figure out the best dosage and approach. It can be so challenging to get a clear picture, especially when on such a new treatment.
Do any of you have your levels checked on a routine basis?
On a very bright ( and sunny ) note. I am feeling better than I have felt in abt a yr ( surgery and then Zelboraf side effects last yr … and 2 other surgeries unrelated). I have no other health issues aisde from the mel. I am greatly anticipating working in my neglected hoop greenhouse and vegetable garden this spring and summer!! My family worked very hard last year to put a beautiful paver patio out back for me, but the Zelboraf kept me from being able to be out there much at all. It is currently abt 10 degrees outside, so for this girl Spring cant come soon enough!
Thank you, again. I just think that the people on this board are some of the best informed cancer patients anywhere, hands down. I really appreciate all the help.
Tina
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- February 1, 2013 at 4:16 pm
Tina,
Gene has his Vitamin D levels checked on a routine basis? His oncologist also knows that he takes Vitamin D2 supplementation. Living here in NE Ohio we get very little of the good stuff naturally.
Glad to hear you are feeling better. Good luck with your greenhouse and vegetable working this spring we hope to grow more items and trying to get away from buying things that have GMO's and pesticides in them as well.
Also low amounts of Vitamin D3 causes your body to steal calcium from the bones which causes them to break easily. I know because mine was low and I fell and broke my arm with a compound fracture. It was suggested 50,000 of Vitamin D3 for 12 weeks to help bring the levels up.
Good luck.
Judy (loving wife of Gene Stage IV and now NED)
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- February 1, 2013 at 4:16 pm
Tina,
Gene has his Vitamin D levels checked on a routine basis? His oncologist also knows that he takes Vitamin D2 supplementation. Living here in NE Ohio we get very little of the good stuff naturally.
Glad to hear you are feeling better. Good luck with your greenhouse and vegetable working this spring we hope to grow more items and trying to get away from buying things that have GMO's and pesticides in them as well.
Also low amounts of Vitamin D3 causes your body to steal calcium from the bones which causes them to break easily. I know because mine was low and I fell and broke my arm with a compound fracture. It was suggested 50,000 of Vitamin D3 for 12 weeks to help bring the levels up.
Good luck.
Judy (loving wife of Gene Stage IV and now NED)
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- February 1, 2013 at 4:16 pm
Tina,
Gene has his Vitamin D levels checked on a routine basis? His oncologist also knows that he takes Vitamin D2 supplementation. Living here in NE Ohio we get very little of the good stuff naturally.
Glad to hear you are feeling better. Good luck with your greenhouse and vegetable working this spring we hope to grow more items and trying to get away from buying things that have GMO's and pesticides in them as well.
Also low amounts of Vitamin D3 causes your body to steal calcium from the bones which causes them to break easily. I know because mine was low and I fell and broke my arm with a compound fracture. It was suggested 50,000 of Vitamin D3 for 12 weeks to help bring the levels up.
Good luck.
Judy (loving wife of Gene Stage IV and now NED)
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- February 1, 2013 at 2:25 pm
Thank you all… I really do appreciate you taking the time to give all these responses. Gene… I knew you had done much looking into this, now I know how to search that up & I will enjoy delving into resources you and others mentioned. I had hoped to get just such responses so I could get started at looking into this without having to repeat every bit of research others have done. Has your Dr ever mentioned a concern abt combining Vit D supplementation with the ipi?
Karen, thank you so much for being concerned that I would feel hurt by Gene's post. I promise I did not take it in a negative way… you would have to work pretty hard to hurt my feelings & I know everything here is in response to my request and only intended to help. I never had my Vit D levels checked back in the day 11 yrs ago when I was dx with breast cancer ( and 3 months later, melanoma)… but have always felt there was some type of immunological relation between the 2 cancers, since they occured so closely together and with no family history… what the relationship is, I will probably never know for sure.. I doubt my VitD levels would have been as they are now because I did spend much more time outdoors. Being on Zelboraf last yr and unable to be in the sun for more than 2 minutes without blistering kind-of put the brakes on outdoor work or recreation. I spent my growing up yrs in FL and then our young married life in Central Tx… so I got more than my fair share of time in the sun during those yrs.
Ben, you also bring up something I had not heard of before, so I will look into that as well. I like to be able to look at this from all angles & try to figure out the best dosage and approach. It can be so challenging to get a clear picture, especially when on such a new treatment.
Do any of you have your levels checked on a routine basis?
On a very bright ( and sunny ) note. I am feeling better than I have felt in abt a yr ( surgery and then Zelboraf side effects last yr … and 2 other surgeries unrelated). I have no other health issues aisde from the mel. I am greatly anticipating working in my neglected hoop greenhouse and vegetable garden this spring and summer!! My family worked very hard last year to put a beautiful paver patio out back for me, but the Zelboraf kept me from being able to be out there much at all. It is currently abt 10 degrees outside, so for this girl Spring cant come soon enough!
Thank you, again. I just think that the people on this board are some of the best informed cancer patients anywhere, hands down. I really appreciate all the help.
Tina
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- February 1, 2013 at 2:25 pm
Thank you all… I really do appreciate you taking the time to give all these responses. Gene… I knew you had done much looking into this, now I know how to search that up & I will enjoy delving into resources you and others mentioned. I had hoped to get just such responses so I could get started at looking into this without having to repeat every bit of research others have done. Has your Dr ever mentioned a concern abt combining Vit D supplementation with the ipi?
Karen, thank you so much for being concerned that I would feel hurt by Gene's post. I promise I did not take it in a negative way… you would have to work pretty hard to hurt my feelings & I know everything here is in response to my request and only intended to help. I never had my Vit D levels checked back in the day 11 yrs ago when I was dx with breast cancer ( and 3 months later, melanoma)… but have always felt there was some type of immunological relation between the 2 cancers, since they occured so closely together and with no family history… what the relationship is, I will probably never know for sure.. I doubt my VitD levels would have been as they are now because I did spend much more time outdoors. Being on Zelboraf last yr and unable to be in the sun for more than 2 minutes without blistering kind-of put the brakes on outdoor work or recreation. I spent my growing up yrs in FL and then our young married life in Central Tx… so I got more than my fair share of time in the sun during those yrs.
Ben, you also bring up something I had not heard of before, so I will look into that as well. I like to be able to look at this from all angles & try to figure out the best dosage and approach. It can be so challenging to get a clear picture, especially when on such a new treatment.
Do any of you have your levels checked on a routine basis?
On a very bright ( and sunny ) note. I am feeling better than I have felt in abt a yr ( surgery and then Zelboraf side effects last yr … and 2 other surgeries unrelated). I have no other health issues aisde from the mel. I am greatly anticipating working in my neglected hoop greenhouse and vegetable garden this spring and summer!! My family worked very hard last year to put a beautiful paver patio out back for me, but the Zelboraf kept me from being able to be out there much at all. It is currently abt 10 degrees outside, so for this girl Spring cant come soon enough!
Thank you, again. I just think that the people on this board are some of the best informed cancer patients anywhere, hands down. I really appreciate all the help.
Tina
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- February 1, 2013 at 4:39 am
O.K….everyone is right here…we all have a piece of the puzzle and all the pieces are required to complete the picture.
This week there have been two very important posts from long term stage IV survivors, Allen C and Carole K . Both make strong points about their choice to follow holistic treatments and obviously have done well by them. This is a big disease and we need all the input from those who have survived this long, to help us find the answers we are seeking.
It's o.k. to disagree, but we are all entitled to the information and we can all draw our own conclusions based on our own beliefs in treatments, which may include traditional, holistic, or combination of both, spiritual or other………the point being, we all come from different corners all seeking the same answer, we're all searching for the same ….CURE….but we all have our own gut feelings about the treatments we are willing to try.
I think it is very important to make your posts based on facts that we can all research and check for ourselves and it's o.k. to give your opinion too ….but it is just that….you're opinion.
I too take a supplements and hope with all my heart, they are doing something for me to win my battle against this MM. If I do win, will I know exactly what helped me…..probably not, but I will tell others what I did!
Please respect each other….we are all fighting a great battle and we all need the wisdom and support of each other.
love to everyone,
Swanee
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- February 1, 2013 at 3:31 pm
I recently posted some links to research that suggests epigenetic factors can be involved in cancer initiation. We know that cancer cells are generated often, but the immune system takes them down. When it doesn't, there is an immune related reason, IMO.
Epigenetic means above the genome level and this can come from the environment. Chemicals, smoke, chronic inflammation can all have epigenetic effects, and we have all heard that these can be cancer causing. Chronic inflammation can also be associated with chronic infections, as in stomach cancer coming from long untreated H. pylori. And there are other infections implicated in other cancers. You've heard of the virus that causes cervical cancer, and the vaccine that has been developed?
So, the way these epigenetic things work is that the create too much ( usually) or too little methylation or acetylation of DNA adjoining tumor suppressor genes, which turns them off.
In addition to all the clinical trials out there for cancer, some researchers are looking at reversing those epigenetic effects, which would be very elegant indeed, and miles ahead of chemo and surgery.
My feeling is that supplements and foods could have epigenetic effects, so don't write those things off. The main thing would be to have a better grasp of what does which effect, so it could be controlled, and not a stab in the dark, like patient initiated supplementation. However, that has not stopped me from supplementing! Now if I could just stomach kale.
Public television in the U.S. did a very good program, here is a link:
http://www.pbs.org/wgbh/nova/body/epigenetics.html
How this fits with mutations, I am not sure. Perhaps certain mutations makes a person more or less susceptible to epigenetic factors, or there is also a genetic level factor in some cancers.
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- February 1, 2013 at 3:31 pm
I recently posted some links to research that suggests epigenetic factors can be involved in cancer initiation. We know that cancer cells are generated often, but the immune system takes them down. When it doesn't, there is an immune related reason, IMO.
Epigenetic means above the genome level and this can come from the environment. Chemicals, smoke, chronic inflammation can all have epigenetic effects, and we have all heard that these can be cancer causing. Chronic inflammation can also be associated with chronic infections, as in stomach cancer coming from long untreated H. pylori. And there are other infections implicated in other cancers. You've heard of the virus that causes cervical cancer, and the vaccine that has been developed?
So, the way these epigenetic things work is that the create too much ( usually) or too little methylation or acetylation of DNA adjoining tumor suppressor genes, which turns them off.
In addition to all the clinical trials out there for cancer, some researchers are looking at reversing those epigenetic effects, which would be very elegant indeed, and miles ahead of chemo and surgery.
My feeling is that supplements and foods could have epigenetic effects, so don't write those things off. The main thing would be to have a better grasp of what does which effect, so it could be controlled, and not a stab in the dark, like patient initiated supplementation. However, that has not stopped me from supplementing! Now if I could just stomach kale.
Public television in the U.S. did a very good program, here is a link:
http://www.pbs.org/wgbh/nova/body/epigenetics.html
How this fits with mutations, I am not sure. Perhaps certain mutations makes a person more or less susceptible to epigenetic factors, or there is also a genetic level factor in some cancers.
-
- February 1, 2013 at 3:31 pm
I recently posted some links to research that suggests epigenetic factors can be involved in cancer initiation. We know that cancer cells are generated often, but the immune system takes them down. When it doesn't, there is an immune related reason, IMO.
Epigenetic means above the genome level and this can come from the environment. Chemicals, smoke, chronic inflammation can all have epigenetic effects, and we have all heard that these can be cancer causing. Chronic inflammation can also be associated with chronic infections, as in stomach cancer coming from long untreated H. pylori. And there are other infections implicated in other cancers. You've heard of the virus that causes cervical cancer, and the vaccine that has been developed?
So, the way these epigenetic things work is that the create too much ( usually) or too little methylation or acetylation of DNA adjoining tumor suppressor genes, which turns them off.
In addition to all the clinical trials out there for cancer, some researchers are looking at reversing those epigenetic effects, which would be very elegant indeed, and miles ahead of chemo and surgery.
My feeling is that supplements and foods could have epigenetic effects, so don't write those things off. The main thing would be to have a better grasp of what does which effect, so it could be controlled, and not a stab in the dark, like patient initiated supplementation. However, that has not stopped me from supplementing! Now if I could just stomach kale.
Public television in the U.S. did a very good program, here is a link:
http://www.pbs.org/wgbh/nova/body/epigenetics.html
How this fits with mutations, I am not sure. Perhaps certain mutations makes a person more or less susceptible to epigenetic factors, or there is also a genetic level factor in some cancers.
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- February 4, 2013 at 6:38 pm
I also live in St Louis and have seen Dr. linnett. I didn’t hae ant symptoms that i was low in Vit D, but was at 9. I got my pcp to order high dose Vit. D which I took once a wk for six months.Good luck
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- February 4, 2013 at 7:51 pm
Dear Gene,
i hope you’ll accept my apology for being rude. It was certainly uncalled for and I’m sorry.Ben,
Your post is so interesting; I had just read the same thing about Vit. D. I lowered my dose from 10,000 iu to 5,000/day.
I had asked to be tested several months ago and was low, when I asked again my level was 30, the low end of normal. I’ll have it checked next time. btw, my onc never ordered the test; he adds it whenever I ask.Warm wishes to all,
Karen -
- February 4, 2013 at 7:51 pm
Dear Gene,
i hope you’ll accept my apology for being rude. It was certainly uncalled for and I’m sorry.Ben,
Your post is so interesting; I had just read the same thing about Vit. D. I lowered my dose from 10,000 iu to 5,000/day.
I had asked to be tested several months ago and was low, when I asked again my level was 30, the low end of normal. I’ll have it checked next time. btw, my onc never ordered the test; he adds it whenever I ask.Warm wishes to all,
Karen -
- February 4, 2013 at 7:51 pm
Dear Gene,
i hope you’ll accept my apology for being rude. It was certainly uncalled for and I’m sorry.Ben,
Your post is so interesting; I had just read the same thing about Vit. D. I lowered my dose from 10,000 iu to 5,000/day.
I had asked to be tested several months ago and was low, when I asked again my level was 30, the low end of normal. I’ll have it checked next time. btw, my onc never ordered the test; he adds it whenever I ask.Warm wishes to all,
Karen
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- July 27, 2013 at 7:15 pm
Many thanks to all for posting your comments. I would like to share my experience and ask if others had any similar events.
Before my melanoma, my GP had tested my Vit D levels – it was low-16. He gave me a prescription and had it tested three months later. It was high (95) so he told me to stop taking the Vit D.
Apprx. 9 months later my melanoma was found in a lymph node (axilla) via a mammogram. After the PET/CT scan it was determined that I was a MUP – unknown primary – no mole or origin was found. The thoughts were 1) the original location had been "frozen" off but a few cells had remained and got caught in the lymph node under my arm or 2) my immune system had attacked the malignant cells which removed them from the surface of the skin but got caught in the lymph node.
I had axilla surgery, 12 nodes removed (only one positive) then had radiation plus interferon for 11 months. It's been almost two years since I stopped interferon, three years since surgery..
Last week, my GP again tested my Vit D level – it was 17! What is really curious is that I've been taking 1,000 mg daily for over two months…either my body isn't processing the low amount or the generic brand I purchased wasn't any good.
I'd like to know if any other MUP's had increased their Vit D level before their melanoma was found?
Is Vit D a water soluble vitamin that will always fluctuate (based on sun exposure & intake) on a daily basis?
Would appreciate any and all thoughts/comments.
LivingNTN
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- July 27, 2013 at 7:15 pm
Many thanks to all for posting your comments. I would like to share my experience and ask if others had any similar events.
Before my melanoma, my GP had tested my Vit D levels – it was low-16. He gave me a prescription and had it tested three months later. It was high (95) so he told me to stop taking the Vit D.
Apprx. 9 months later my melanoma was found in a lymph node (axilla) via a mammogram. After the PET/CT scan it was determined that I was a MUP – unknown primary – no mole or origin was found. The thoughts were 1) the original location had been "frozen" off but a few cells had remained and got caught in the lymph node under my arm or 2) my immune system had attacked the malignant cells which removed them from the surface of the skin but got caught in the lymph node.
I had axilla surgery, 12 nodes removed (only one positive) then had radiation plus interferon for 11 months. It's been almost two years since I stopped interferon, three years since surgery..
Last week, my GP again tested my Vit D level – it was 17! What is really curious is that I've been taking 1,000 mg daily for over two months…either my body isn't processing the low amount or the generic brand I purchased wasn't any good.
I'd like to know if any other MUP's had increased their Vit D level before their melanoma was found?
Is Vit D a water soluble vitamin that will always fluctuate (based on sun exposure & intake) on a daily basis?
Would appreciate any and all thoughts/comments.
LivingNTN
-
- July 27, 2013 at 7:15 pm
Many thanks to all for posting your comments. I would like to share my experience and ask if others had any similar events.
Before my melanoma, my GP had tested my Vit D levels – it was low-16. He gave me a prescription and had it tested three months later. It was high (95) so he told me to stop taking the Vit D.
Apprx. 9 months later my melanoma was found in a lymph node (axilla) via a mammogram. After the PET/CT scan it was determined that I was a MUP – unknown primary – no mole or origin was found. The thoughts were 1) the original location had been "frozen" off but a few cells had remained and got caught in the lymph node under my arm or 2) my immune system had attacked the malignant cells which removed them from the surface of the skin but got caught in the lymph node.
I had axilla surgery, 12 nodes removed (only one positive) then had radiation plus interferon for 11 months. It's been almost two years since I stopped interferon, three years since surgery..
Last week, my GP again tested my Vit D level – it was 17! What is really curious is that I've been taking 1,000 mg daily for over two months…either my body isn't processing the low amount or the generic brand I purchased wasn't any good.
I'd like to know if any other MUP's had increased their Vit D level before their melanoma was found?
Is Vit D a water soluble vitamin that will always fluctuate (based on sun exposure & intake) on a daily basis?
Would appreciate any and all thoughts/comments.
LivingNTN
-
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