I had a meeting with, what I call, a metabolic Oncologist (don't think that is an actual term) last night. Several weeks I a had, what they call, a metabolic blood test. This Oncologist is not my primary Oncologist. I have been taking 5000iu of Vitamin D3 for about 5-6 weeks prior to my blood draw. My results was a 29 ng/ml. The "normal" range for this blood test is 30 ng/ml to 150ng/ml. He increased my intake to 8000iu per day until my next blood test. He stated the ideal range for Vitamin D3 is 90 ng/ml to 110 ng/ml. I read a lot about Vitamin D3 and the benefits particularly COVID. If memory serves correct correct over 90% are deficient. What was eye opening to me, was that I have not been taking near enough for my body to run efficiently and would never have not known without this blood work.
Vitamin D3 Levels?: I had a meeting... - SHARE Metastatic ...
Vitamin D3 Levels?
some people don’t absorb vitamin D efficiently even at higher doses and need shots of it. I believe it’s a genetic issue. Might be worth looking into.
Will definitely check into that if I don't see significant movement in my levels after taking 8000iu per day. I have read D3 is not easily absorbed but have opted for a version that has cyclostome delivery for better absorption. I know some companies sell VitD in 15000iu servings for those who might be low are deficient to get a boast or take 1 time a week along with the current dosage to increase within range.
ba5083,
Early on, my oncologist noticed that I was deficient in Vit D also. He put me on 50,000 iu, once a week. When I turned out to have a 1 cm kidney stone (not affecting function) in each kidney, said that he might be responsible for the kidney stones because of the Vit. D that he prescribed. This was last year that I stopped the high dose of Vit. D.
Still, I am not absorbing Vit. D, and my endocrinologist, that I just started seeing, put me back on 50,000 iu, once a week.
I wonder if it is common for those who have cancer to be deficient in Vit. D? Anyone else deficient in Vit. D? Just curious.
Colleen
no I do take 5000mg daily of vitamin D 3, and I have never read anything about D3 and kidney stones being related.
I do think good supplements are important, I believe fighting cancer depletes us of a lot of good nutrients, so we need to ask for those extra blood tests. D3, B12, iron, ,,, pre diabetes…
Yes, when I was diagnosed, I was deficient in Vitamin D.
My levels were low and I have been taking a prescription D3, once weekly, for about a month. Go see my oncologist next week and will get checked to see if my levels have improved. After reading all of the comments I am armed with enough information to ask questions
I read this recently and started taking 5000iu Vit D3 then (before I got hooked up with the 2nd opinion Onc group). 92% of cancer patients at diagnosis are vitamin D deficient ~ 80% very deficient and 12% deficient.
Hi Colleen,I am sorry to hear about yr kidney stones. I have read a few places that too much Iron (iron supplements can cause this also) and Vitamin D has a correlation to kidney stones. They are not good. I am sure I have had some type of kidney stone in the past when I was having severe kidney pain and blood when running long distances. If you can try to get Vitamin D naturally that is what works well for me. This may sound strange but I try to get a lot of natural sunlight. It seems to help my bone and body pain immensely. Just a hopeful thought for you. Best wishes ~
It’s a good reminder to us all to check our vitamin intake for D3! Thanks 🌸
This is what i call a circle effect! Vitamin D is gotten by sunlight so a lot of people are deficient esspecially in northern and rainy areas. Now comes my circle effect . If you spend enough time out side in the sun to have good vitamin d levels you run the risk of sunburn. So you slather on sunscreen to protect yourself then find out the suncreen has chemicals in it that cause cancer!! What The Hay!!!!!!!😏
Actually, all you need is 15min in a sun if your body could generate vitD.
Unfortunately, deficiency of vitD regardless of time spent in the sun is part of aging. Hence, the supplements.
and I wonder if the sunscreen blocks the Vit D from 'getting through'?
I have wondered that also?
Yes it does. Not vitamin d per se but we need sunlight and UV to produce vitamin D in our body. The reason for young people being deficient is the use of sunscreen. We need ten to fifteen minutes in the sun without sunscreen but many people are reluctant because of the cancer risk. I don’t use sunscreen myself at all.
good to know👍. and thanks for clarifying. XO
Please no I completely respect this comment and as long as you aren't getting burned - party on! Those of in Arizona - who grew up here using little or no sunscreen and getting absolutely FRIED with sunburn, shudder at this. I have been told by my dermatologist who I see for a skin check 2x a year (I have had a malignant melanoma removed surgically) that every sunburn is like filling a glass of water. I have to have spots frozen off my face at almost every visit so I am paying for my childhood now.
I don't want to highjack the thread with my skin cancer manifesto so I'll stop with this: there are so many great looking UV outdoor clothing/swim options that I am able to get out without much sunscreen and enjoy the 3 months of nice weather we have here AND I even survived several Hawaii trips without a burn.
My vitamin D supplements are keeping those levels normal.
XOXOXO
I do wear a hat outside and I don’t swim in the hottest part of the day. I don’t actually lay out in the sun to get a suntan either. There’s lots of issues around tanning and I don’t care if I’m as white as snow and I pretty much am especially compared to my brother and mother who have darker skin than me and tan really quickly. Two of our friends were obsessed with tanning when they were young. The older one had multiple cancers cut out including in her hair and the second one who is actually her daughter had tiny little cancers in her hair follicles. The specialist spent hours treating each follicle with a cream of some sort. They both regretted their obsession with their skin colour but fortunately they didn’t pay a high price for it. Natural skin tones is like natural hair. There’s no need to change either for fashion which is fleeting. Tomorrow pale and interesting will replace tanned and mysterious 😂 and then next week all those things will be considered uncool.
Again wasn't criticizing - there are two days a week I am hopped up on steroids. No offense intended. White skin is healthy skin.
I wasn’t offended! I’m simply an oversharer. And I’m alone with my dog and cat all day and all night so any opportunity to talk to a human and I take it. 😂
interestingly my doctor said we stop making it in our bodies post 50. Thus the reason why many are deficient in middle age.
I take Caltrate plus daily because of taking Xgeva and the plus is vitamin D so I’m not deficient myself. My father was deficient but mum was never tested so I don’t know about her. Dad spent all his time inside but mum didn’t so maybe she looked healthier. We live in Queensland and apparently we only need six minutes a day in the sun, according to an article I read. I’ve never heard that we don’t produce our own vitamin D after 50 but lifestyles today are more sedentary than in past generations so even young people can be affected by low vitamin D levels. We live longer now but living well in old age is an oxymoron! 🙂
‘Older adults are at risk for lower levels of vitamin D as a result of decreased cutaneous synthesis and dietary intake of vitamin D‘ Decreased but not no synthesis. ncbi.nlm.nih.gov/pmc/articl...
I agree with you. I try to get as much natural sunlight as possible. Not more than an hour or sometimes if the weather is nice longer, still it helps me a lot and I feel better. I do however always wear sunscreen- only on my face. Not that it matters much, I just try to be careful.
I understood that some of these things are individual and variable. The important thing is how you feel. X
You all should look into vitamin D3 with K2 which is important together to help absorb. Also Omega 3 is extremely important too. You should have the right balance of omega 3 and 6. More 3 than 6 ratio...this also helps with your cells being able to absorb nutrients. My mom has been taking juice plus capsules and gummies to get her fruits and veggies in. They are not supplements but food. Those have helped bridge the gap since she does not eat much. Hope this is helpful to you all.
Thank you. This was very helpful!
I completely agree with you about Omega3's being an important part of a Cancer Cure Healthy Diet.I eat Chia Seeds/Flax Seeds/Hemp Seeds every day and they help me a lot. All have Omega3's. I cannot however tolerate any gummies at all due to my colon cancer. Though many people find the gummies to be helpful. Also many protein shakes also have these important nutrients. I drink a Soy Protein No lactose Shake every day with Macadamia Nut Milk and it helps me. Also try to eat at least 1 serving of Sea Kelp Seaweed every single day. They now have Avocado flavored kelp plus Teriyaki flavored. Both are tolerable. And every day I drink 2 glasses of Immunity Juice with Zinc and Vitamin C.
Most traditional Onc don't pay attention to how managing inflammation can help or hurt the body's immune system to help fight cancer. From many articles I have read and testimonial's of those with stage IV that have stopped progression and in some cases had regression incorporate a metabolic approach. In most cases along with traditional treatments.
Thank you so much for sharing that with me. At this point I have had Metastacized Cancer since last October with zero nutrition information shared with me including fighting inflammation. I have had to figure everything out all alone. It gives me hope when you say the words like-stopping cancer and dare I even think it- regression. Having my kale salad for dinner w/seaweed right now. Best wishes to you ~
I believe there is a correlation between vitamin D deficiency and breast cancer. It’s good that you figured out that you are not taking enough. My primary care doctor does a vitamin D test every year at my annual physical exam. I take a lot of D and am still on the low side of normal (40). For proper thyroid function the levels should be around 60-80.
Hello ! My doctor started me on D3 5000iu before I found out I had breast cancer. And after sugery my oncologist said stay on it. And after radiation therapy my low energy B12 and a multi vitamin was added. I still don't have any energy. So I pray that I eventually get some energy. Prayers for you to feel better.
Vitamin D is very important. Someone on this board posted pertinent information about Vitamin D levels. For some strange reason the cancer that I go to only checked my levels once when I was first diagnosed. It's like pulling teeth to get my primary doctor to check levels with my other blood work. I have since checked primary doctors, and I am much happier with my current one. She does not question me for wanting to check my Vitamins D levels. Having a sufficient vitamin D level will help fight off tumors and yes, covid.
and let's not forget that via D helps to rebuild bone loss from being on an estrogen blocker. I am perhaps going to have major spine correction surgery and need to rebuild some bone before the surgery can take place.
I did read on-line that vit D is more easily absorbed if you take it with food...especially food that has some fat content. XO
My husband and I had been taking 6000 of D. He had blood work done and his calcium was high. His Onc told him to reduce the D as that’s what was causing the spike. We take 4000 now. My Onc won’t test my vitamin d he seems to think he can tell from my other bloodwork. Chris
I also had very low vitamin D levels at diagnosis. 4 years later, I still take 10000-20000iu 4 times a week as I like my levels to test at the upper limit. But you need to take it with vitamin k2 to get the calcium into your bones, teeth etc and not in your organs or arteries.
That's good to know info. 👍
Several yrs ago I asked my Oncologist if there was an ideal Vit D3 Level as it plays a role in so many functions of our bodies(bones, brain, etc) She said above 40 was good for absorbing Calcium, but she does not remember to check so I have to remind her, so I just had mine checked yesterday, I made it to 50, with taking 5,000 units/day plus a tad from my Calcium Supplement and foods. I am very fair skinned and cannot tolerate much sun. I take a cheap brand of D3, mixed in some Corn oil for the little gel filled liqui-pods. Need to find one that is mixed in Olive oil or a better oil.
My primary prescribed 50,000iu once a week but I had a weird reaction. Elevated heart rate etc. So I stopped and am taking D3 with K2. Has anyone else had reaction to high dose D
Yes. I was low when diagnosed, put on 50,000, then they measured again and it was too high, so now I take 2000 a week. Too high causes trouble, too. It should always be based on a blood test. My primary doc orders it annually. My oncologist does not.
Curious if you remember your findings or number.
Sorry, no I don't. I just know that after they reduced the dosage, I was on the low side of the okay range, and they said I should stay there, not try to get to the top of the range. I will know next month where I am now, and whether they think that is okay. (New patient portal keeps the results of tests so I can look up.)
With the normal range between 30-150 (in the US) our Onc wants it to be between 90 and 110. Reports I have read indicate the most efficient level when fighting cancer is around 80.
Confusing! I think I was around 40 when they reduced the dose, and they said to stay there. I will see what they say this time. I wonder why my docs think a bit on the low side is safer with cancer, and yours think it is on the high side.
I am going to start integrative med. I am just referred to pain treatment, but I hope to get the full range of things they offer for cancer, and maybe they can help with that. My oncologist doesn't know much about anything other than treatments; at least she is supposed to be very good at that. Her patients, I have been told, live longer.
If it was your Primary Care Doc or General Practitioner their concern might be to make sure it is within range. The Onc might look at the results differently. If I find the articles I read regarding optimal levels for cancer patients I will post them. I very much appreciate you taking the time to discuss.
If she looked (the onc)....
Onc = Oncologist
I used onc to mean oncologist. Not sure why you are telling me onc=oncologist. She doesn't test or look at D, and has no comment. I wonder about the kidney stones, though. I had kidney stones made of calcium before I had bc, so when they try to put me on calcium, they realize I can't handle it.
I'm sorry I thought you were asking
NP. I thought I used it first and what I said made no sense if onc did not mean oncologist.
Results in. I am low in D3: 29. So I want to get up to 80? Will ask both the primary and the onc. See what they say. (I am very fair, but go in sun without sunscreen and don't change skin color. The only thing that shows is that my hair turns peroxide blond if I am in the sun a lot. I am out a lot in the summer, swimming and gardening. I wonder if it is low now because I haven't been out much.)
Also will want to take it with Cyclosome, or in a form that uses Cyclosome to deliver?
This discussion is timely for me. Thanks, Chris
Our 2nd Onc that we are working with on the metabolic side wants the Vitamin D level to be between 90-110ng/ml (if using US readings). Our primary Onc never mentioned it or tested Vit D levels but have read a lot about how important it is. I had read several articles that indicate 80ng/ml is ideal for those with BC. The range on my blood work states a normal range is between 30-150 ng/ml. My next blood test is early May after increasing to 8000iu per day for about a month so will see how that works out. I take cyclosome Vitamin at 2000iu per tab (4 tabs daily). Course liposomal delivery is very similar to cyclosomal delivery. I would settle for 1 of those 2 delivery systems.
Thanks. 4 x a day? I will have to have D tested again after I go up. At one point, I was taking 1000 IU daily, and it got too high, which is also bad. Or maybe that was when I was using drops to get to 50,000 iu -- I think weekly.
It was recommend to me to take 8000iu a day because my last test results came back at 29ng/ml. For the month prior to getting my blood test I was taking 5000iu (so I'm guessing I was really low). I would assume at 50,000iu as a liquid once a week the level could get up there quickly.
I have been taking 1000 iu twice a week, and that was adequate for a while, so I guess I just need to bump up a little. Hoping primary doc will know. Sounds like you are not absorbing so need more...
like with so many other meds and supplements....there is a 'window' for therapeutic levels. too little Vit D not good. but way too much Vit D also not good. Vit D toxicity can contribute to fatigue and weakness (oh no, yet another culprit for causing fatigue😱) and can also cause fast heartbeat and abnormal heart rhythms among other symptoms such as nausea and vomiting. mostly has to do with how the elevated Vit D reacts with calcium absorption, causing hypercalciumia. but this is for very high levels of vit D. I would think that oncologists would want to monitor Vit D and at least do a yearly check? but what do I know😉.
interesting thread. thanks to all for posting.
carole 💛
We are checking monthly until we get within the range our Onc is looking for. Course then we will be testing to make sure we stay within that range.
well it seems they are taking care of you well. I had mine for first time in diagnosis in January and it was low. The dr never addressed it and I took some on my own but I am not taking it regularly. They retested and was normal two months later. With cancers it seems vitamin d3 is low. I wish you the best 🙏✝️
Greetings Sister(s), Warrior(s), Thriver(s), and Over-comer(s)😇. I wrote a 15 line post explaining the importance of D3 supplementation. I lost the post when my WIFI dropped.😏 Suffice to say I believe in the importance of D3 supplementation. We can't supplement our D3 levels by baking in the sun, which can increase our chances for skin cancer 🧐, especially those of us who have had radiation treatment. The darker your skin, the more D3 you will need to take, after knowing your testing levels. If your levels are very low the Dr, may need to give you an I.V. infusion. which my aunt needed a few years ago when she was 88 years young. I research, and get my information on health, and wellness from Integrative Dr's along with my medical Dr's who are on board with my health, and wellness journey😬. Oral D3 supplementation takes 6 months to reach your optimal levels. I do believe low D3 levels contribute to many ailments/illness' , including cancer. I hope/pray this helps. Don't take my word for it, but do the research yourself😇🙏
I worked with a woman who was a stocker in the pharmacy & she told me that we urinate out 3/4 of the goods we need from supplements we take so I guess out of all the 500 iu Calcium+D3 I've been taking, my body has only been absorbing 1/3 of it.🤷 Who knew!
Expensive urine for sure.. When looking for supplements I always try to find liposomal or cyclosome delivery methods for better absorption. Stuff I have read says it helps but still a lot of expensive urine.
Liposomal?Cyclosome?
Can you elaborate please?🤔 I've never heard of these.
Sorry for the delay - I have been on vacation for a couple of days. Liposomal and Cyclosome are very similar with Cyclosome being the newest/latest in delivery and absorption so I will refer to that. Just keep in mind Liposomal is very similar.
In a nut shelled it is coated in a special way to breakdown later in the digestive process to allow for better absorption. I got this from the web. A little scientific but hopefully gives you a better understanding.
Cyclosome delivery refers to a novel drug delivery system that utilizes cyclodextrins as carriers for therapeutic agents. Cyclodextrins are a family of cyclic oligosaccharides that have a hydrophobic cavity and a hydrophilic exterior. This unique structure allows them to encapsulate hydrophobic molecules and enhance their solubility in water, making them more bioavailable and effective.
Cyclosome delivery has several advantages over traditional drug delivery methods. It allows for targeted delivery of therapeutic agents, minimizing their exposure to healthy tissues and reducing side effects. It also improves the pharmacokinetic properties of the drug, enhancing its absorption, distribution, metabolism, and elimination. Cyclosome delivery has shown promising results in preclinical and clinical studies, and it has the potential to revolutionize drug delivery in various therapeutic areas, including cancer, infectious diseases, and inflammation.
The cyclosome delivery system involves the conjugation of the therapeutic agent with a cyclodextrin molecule, which forms a stable complex that can be delivered to the target site. The complex is then further modified with a lipid bilayer, which provides stability and protection to the therapeutic agent during circulation and enhances its uptake by cells. The resulting structure resembles a liposome but with improved drug-loading capacity and stability.
Thank you for the clarification. I think I got it. Is it like the gelcaps surrounding those little beads of timed release aspirin? Or am I still getting it wrong?
Similar concept but difference science regarding the coating process. I was able to find a short video that might also help. youtu.be/rL2lkwzBMz4
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