Vit D3 and Cancer's Last Gasp

Parent Cafe
1

I have a question I don’t feel I can ask mom’s doctor and was wondering if anyone here might know.

When I left mom last week for my son’s wedding it really seemed like she could die any day after having had seizures and being in the hospital and not getting much better with a week at home. Now that I’ve returned (yesterday) she seems considerably better. I expected worse because she’s near the end of her second week of chemo and the second week has always been bad - very bad - near death/needing transfusions bad. She’s still on morphine + other pain meds and fatigued, etc, but her brain is back and she’s not sleeping 21 hours of the day with the other 3 hours being minutes here and there rather than long periods of time. Now she’s awake most of the day, just still in bed or in an armchair. Even her BP has improved to 100+/60+ instead of 90/50 and her blood count has stayed in the “normal for her condition” mode instead of dropping.

Two things are different post hospital. She’s on Keppra for the seizures (works well) and she started taking Vitamin D3 as a supplement. Keppra’s effects were noticeable within hours and it’s still noticeable when she nears the end of a dose.

Could she have been seriously deficient in Vit D? (That level has never been tested, but she’s never in the sun anymore and isn’t on a multi-vitamin.) Would taking that for 3 weeks have improved not only the post hospital “stuff” but also the usual extra ill effects from a second week of chemo? Or can Keppra do more?

Or is it more likely the body seeming to miraculously get better before the end as I’ve been warned about and H just experienced with his mom’s death?

I don’t want to ask the doctor because if it’s the latter I don’t need mom hearing the answer (or the question), but I’d like to know if I can keep my optimism and be hopeful or if I’m setting myself up for a crash by doing so.

Any real life experiences/thoughts welcome. I’d like to know what the likely possibilities are.

2

I don’t know about the cancer and vitamin D connection. I do know that the doctor checks my husband and son’s blood work every 6 months for several things, including D3 and iodine. He has prescribed supplements for both of them and changes the doses every 6 months based on the new blood work.

3

Yes D3 can make a difference. Sometimes dramatic.
Are you sure it wasn’t checked for? Why did they start it otherwise?

4

I have MS and take 5000 iu of Vitamin D every day, doctor’s orders.

Vitamin D is very hard to absorb from nature, even for light skinned, dog walking, gardeners like myself. My levels were tested and they were well below normal before I started taking the megadose. Vitamin D is an anti-inflammatory, so it should help with a multitude of things.

My doc started me out at 10,000 iu and had me tested after a few months and then lowered it.

I have to say, I haven’t noticed any dramatic changes with it, but I haven’t gotten worse either.

5

I’ve never seen it on her online results. It ended up being started by a fluke. She’s supposed to take a multivitamin and did for quite some time, but now they’re large and hard to swallow, plus she has multiple things she takes so she hasn’t taken them for a bit. The Vit D3 came free as a promotion with other meds she needs. They’re much smaller and I asked if she wanted to try taking them in place of the multi she’s not currently taking to at least have something. She agreed.

I’ve no idea why they choose what tests they run or don’t. This is our family’s first malignant cancer experience. I know I wish she would go to a higher level place. The small town is nice staff-wise and convenient, but I’m not convinced the knowledge for her type of cancer is as high as it could be - probably because it’s a more rare type (my guess). Even the chemo she’s on now (far better than others she’s been on) came as a suggestion from a chance encounter with a doctor who works at a research hospital who told her to ask about it. In hindsight I’d have done a lot more research myself 2 1/2 years ago. I’ve found a couple of things via suggestions that I’ve confirmed to be worth a try via Mayo/NIH/similar. When I find them I’ll admit to bristling about not being told about them from her oncologist. (Most suggestions get debunked with research.)

Vit D3 was just a fluke - not a suggestion - and I don’t think it’s helping with the cancer, but it seems to be helping with those other things. Maybe it’s chance though - or the getting better before the end. I honestly don’t know. I’m just really surprised at how things are vs what I expected so my “problem solving” mind instantly started looking at what had changed. Only Keppra and Vit D3.

6

No sunlight, no supplement (until now)… was she eating any of the few foods with vitamin D?

7

^^^ Her eating is almost non-existent now and she rarely will do Ensure or Boost. She’s been getting only about 300 calories a day, some days less. It might go up to 500 on a good day. The cancer is starving her to death, but she doesn’t want a feeding tube.

I wonder if I can talk her into cutting the multi into two parts to make it easier to swallow. We all know the end is near, but if getting some other needed vitamins can help by doing what they do, it could make the journey a little easier. I need to get different ones though. Hers have iron and they’ve finally figured out like me she can’t process iron in pills (or even a lot in food) and it causes quite a bit of chest pain (no clue why). Since her levels have tested fine, they dropped that one. It may also be part of why she dropped the entire multi. She may not realize they make them without extra iron.

Up until the seizures in May she was handling all her own meds. I’ve only found out about this since her return from the hospital earlier this month.

ETA: Thinking about it this morning, just dropping the iron could have helped with the fatigue. When they had me on supplements due to a single low/bad number taking them made me very tired. Dropping them fixed it. That and the very significant chest pains are how we figured out the Fe connection to some of my issues. I had to drop some foods too (fortified cereals, etc).

So three changes to ponder with dropping the Fe supplement being the third.

8

I dont know about this, but I know I dont get sick as much when I got my D# level up

9

My dad can’t swallow those big vitamin pills either. He leaves them overnight in a just a bit of water and they dissolve. Tastes terrible but easy to get down.

10

Giant horse pills are horrible. Every vitamin bottle should show a full size image of the pill so people could choose. I prefer to take 2 smaller ones rather than one huge one. Vitamin D pills are usually small.

11

My DH takes vitamin D in tiny gel-type pills, if your mom is able to swallow something like that.

12

I also take vitamin D in a tiny gel-type pill. I get them at Whole Foods. (I hate giant horse pills, and too many of my supplements are giant.)

13

I wonder if there are chewable multivitamins, maybe ones for kids.

14

I like the gummy candy vitamins.
Many pill bottles now show “actual size” picture on the label.

15

Can’t you just break it up into a few pieces? I used to break up Tylenol pills for my kid.

16

Back from the doctor’s appt…

All of mom’s “basic” numbers have improved - even now at the end of her second week of chemo that has traditionally been really bad. Her BP was 110/68 - never been that good (usually low). Her blood counts are all good (usually very low - both hemoglobin and WBC). Her kidney function is good. Her liver function is on par where she has been. Albumin (sp?) is low, but that is likely due to how little she is eating.

She agrees that the Vit D3 being added could easily account for all of the improvement. They were unaware that she had stopped the multivitamin quite some time ago. They ask mom each time if there are changed to her meds, but she never mentioned it. (sigh)

She’s getting more fluid drained tomorrow, but even that has taken 2 weeks to build up after having had just shy of 4liters drained then.

However, I asked about the latest supplement I’ve been told about and looked into (turkey tail mushrooms)…

https://www.cancer.gov/about-cancer/treatment/cam/patient/mushrooms-pdq

My research shows this one to be very useful for some folks with her type of cancer and no real side effects to worry about. Tests in Asia showed an average of 2-5 years longer lifespan for those using it vs a placebo and some of these tests go back to the 70s and 80s. It’s been known about for decades. It’s part of a first line treatment in Japan. I’m really miffed that we weren’t told about it 2 1/2 years ago when it might have made a real difference. I assumed it was because she didn’t know about it, but no, she told us several of her patients use it and she hasn’t seen any ill effects so go ahead and add it. WTH???

Why can’t doctors tell us about these things? Why must we minions find out about these things via whatever “luck” method we might have? It’s our first experience with cancer. I assumed the doctor was our base for knowledge. It never occurred to me to look for other things. I feel incredibly let down - not sure what word to use - betrayed? Her current chemo is new. I understand not knowing about that when one isn’t in a research hospital, but this has been known about for ages and “several” of her patients use it by her own admission.

“Stay off the internet” so many people say. Crap with that. Intelligently use the internet, but it’s probably too late for mom. 4% with her type of cancer live more than 5 years. She could have been among that % if she’d known about this and it worked “on average” for her. She already beat the 18% odds for one year without it.

I asked med school lad why she wouldn’t have been told about it. Is it illegal in this country since it’s a supplement? He says he thinks it’s legal. He thinks too many doctors are distrustful about these things having not learned about them in med school.

My advice to anyone coming behind is use the internet at full force, just be able to discern between something that’s proven a good possibility in tests not sponsored by the seller and, “Uncle Joe’s Snake Oil Cure All” proven by internal tests to save the world.

Creekland doesn’t cry often, but missing this one because of my cluelessness and trust of the “expert” has crossed that bar. Hopefully someone else can use the info.

The Vitamin D info could be useful too. Mom is using the small gel caps.

And thanks for the chewable vitamin thought too. If I can find some without Fe, I’ll see if mom can tolerate them.

I asked the doctor if there were other single vitamins that should be added since the multi was out and she suggested B12. Mom is/was already taking that one. No others were mentioned. Liquid multis were suggested, but the fact that they taste horrid with a digestive system cancer means there’s no hope for those being tolerated.

17

She tried splitting them, but they are too sharp. Her cancer is a digestive cancer (esophageal that has spread to intestines and liver). Eating is a big issue.

18

Multivitamins marketed to men or senior citizens are more likely to have no iron. There appear to be chewable versions available.

19

Creekland I’m so sorry for your disappointment. When my niece was going through cancer and then leukemia as a side effect of her chemo, her parents had to work so hard with their doctors on her behalf. Nothing didn’t get written down and followed up on by her parents. You would like to believe that a doctor would do the same thing for a patient but that’s not the reality, is it? I firmly believe that my niece would not be alive to day had it not been for her parents german stubbornness.

20

Hate to bring this up, but the studies described in the link are all done in Asia. Nothing wrong with that… but you can’t translate those studies to a population that has a different genetic makeup and different lifestyle etc. as there could be some metabolism differences, gut microbiome differences, etc. Also, it is not a replacement for chemo. It is an adjuvant.