High Dose Vitamin D: Is it safe?

Apologies for yet another question about vitamin D.

Personal background: retired physician, recently diagnosed at age 73 with "inoperable" adenocarcinoma of the pancreas. Not satisfied so far with the lack of integrative care I've received from my current (university) hospital care system.

Again, I'm not sure of the propriety of just posting links here, so will leave that to the page administrator to say yay or remove offending link. This is also the first time I have attempted to convert one of those lines-long URLs to something more manageable
https://tinyurl.com/4dtjrpjb

I have regarded this man as something of a snake oil salesman, and don't remember how I got on his mailing list. In this column, however, he discusses muscle weakness (which he says is now being called dynapenia) and says it is treatable with the correct combination of vitamins D3 and K2.

I'm hoping that some participants in this group will have relevant information either from personal experience, or from greater knowledge on the subject of vitamin D metabolism and its usefulness for the muscle weakness and wasting that I'm experiencing...

Suggest check a level. If you adjust the vitamin D to a good level such as 50 or 60 and your symptoms are better, it seems you had success. Muscle weakness more common with very low levels. Check the parathyroid level along with the vitamin D. Your primary care provider will likely order if the oncologist doesn't typically do a level. Keep in mind that vitamin D toxicity with high calcium in the blood can be seen, so good to check the calcium and parathyroid levels with the vitamin D. If the parathyroid level is elevated and the calcium is normal the vitamin D level may need to be higher. Also reasonable to check bone density, can be low with vitamin D deficiency. The vitamin D level is covered by Medicare only if the correct diagnostic code is given, most common reason to order is vitamin D deficiency.

I've had my vitamin D level checked twice in the last year.
Mid September 2022 vitamin D (1, 25-Dihydroxy) test was barely above the lower level of normal; as was my calcium.
2 days ago, my vitamin D, 25-Hydroxy test was also barely above the lower level of normal, as was my calcium again.
No parathyroid testing has been done.

I have also dealt with a lack of interest from my oncologist.I have had to fight for Gene testing and looking for clinical trials,she has been no help at all.I am in my 9th month of fighting.Doing ok so far.Through the gene testing I found out that I have a ATM gene mutation.Sloan kettering is doing a clinical trial for that mutation.I have been trying to get in touch with them,its not easy.We have to be our own advocates in this fight.I will continue to fight as long as possible.I was a 70 year young active female.Presently on the flurocil regime.2 day pump every other week,UGH but doing ok.

Sounds like the vitamin D dosing can be increased. If your primary care doctor is not able to help, an endocrinologist should be able to work with you to get the level straightened out so you are optimally dosed.

I have been seen at MSKCC. I read through the oncologists Bios because I have the BRCA gene. I found one of the oncologists who had an interest in BRCA in pancreatic cancer, David Kelsen MD. I referred myself to the doctor without any difficulty. If you have an oncology consultation, the oncologist can refer to the clinical trial and of course review all of the treatment. I can speak highly of the way I have been treated at MSKCC.

I have had previous low serum level of vitamin D 19.5) after a deployment and was put on 50,000 IU pill to be taken weekly. I had no side effects from the pill and it brought my Vitamin D levels up to normal range after a few months.

I’m currently undergoing immunotherapy for stage IV metastatic melanoma in the lung. My vitamin D level was 39 before starting, it is now 9.5. (Unfortunately, Moffitt wasn’t monitoring my vit D levels and just assumed they’d be ok. It is not part of Moffitt’s protocol but it should be).

After having unexplained headaches, low grade fever, and fatigue, I went to my primary care physician and asked her to do a vitamin and mineral blood panel. I have been prescribed 50,000 IU pill to be taken weekly for 12 weeks. Many studies show low vit D negatively impact cancer treatments and survival rates. Just google vitamin D and cancer, as well as high dose vit D and cancer treatment, then select the scholarly papers.

I am a strong believer in vitamin D and have historically tried to maintain levels of 50. I have felt healthiest at this level.

I recommend taking it as your doctor has prescribed.

Both my husband's naturopath and our Pancreatic metabolic cancer specialist at Care Oncology have recommended my husband go on 10,000 D3 every day. His blood results were initially very low. There are many studies in PubMed about the benefits of Vitamin D in fighting cancer. My husband has had no negative effects.