67 replies to this topic

[Jamie2015]

Going to start taking a daily vitamin. I am on the Sprycel 100 mg. Anyone else taking a multi vitamin that they'd suggest?

Oh and I'd prefer one that's doesn't follow our texas motto... Bigger isn't always better lol

(Have you seen the size of those vitamins lately? GOOD GOLLY)

[Yougotafriend]

Hi I'm on Gleevec 400 mg. I take centrum men with iron but it is a pretty good size pill.

[TeddyB]

Check out this thread for some more tips: http://community.lls...taking-and-why/

[Trey]

I just take the Wal-Sharts Centrum knock-off -- much cheaper and made by the same company.  And an extra C.  Sometimes I add a Vit D.

[dede5]

I'm on Sprycel 100 as well. I take Centrum silver for women, or the knockoff. Either one is very large 

[Billie Murawski]

I can't get those big vitamins down, I choked really bad twice that was one of the scariest moments of my life. It was probably my imagination but I had trouble swallowing for about 6 months after.

[Billie Murawski]

Oh I forgot, never take any kind of vitamins without checking with your doctor, those people in health food stores do not know about interactions especially those of us on tkis.

[gerry]

I just take the Wal-Sharts Centrum knock-off -- much cheaper and made by the same company.  And an extra C.  Sometimes I add a Vit D.

 

Sometimes you add a vit D - is that when you're out golfing and get it from the sun?

[Jamie2015]

I can't get those big vitamins down, I choked really bad twice that was one of the scariest moments of my life. It was probably my imagination but I had trouble swallowing for about 6 months after.

[Jamie2015]

I'm right there with you Billie :/

Tried giving it a go and lets just say I Havnt touched that bottle since then!

Flintston gummies here I come

[dede5]

Oh I forgot, never take any kind of vitamins without checking with your doctor, those people in health food stores do not know about interactions especially those of us on tkis.

This is so important!!!!! I had a recent experience with this. I explained my situation to the clerk in the health food store. He assured me that the item in question was a very mild stimulant made up of all natural ingredients (berries, etc). I took one tablet a day for 4 days, on the 5th day my A Fib kicked into overdrive and it didn't even help when I doubled the dose of beta blocker. This lasted a few days and I wondered if I was dying. I was hesitant to go to ER or to call my doc because I knew what I had done. I wanted a diet pill and was trying to justify by calling it a supplement, and didn't ask doc in advance because deep down I knew what he would say. I'm sure the clerk was giving me accurate info, but he WAS NOT my doc. Don't be like me; don't be stupid.

 

This story is difficult to share, because I don't look very good in it, but I'm doing it in hopes it can help someone else.

[------]

My doc told me to take Womena Centrum Silver or generic.

[scuba]

Going to start taking a daily vitamin. I am on the Sprycel 100 mg. Anyone else taking a multi vitamin that they'd suggest?

Oh and I'd prefer one that's doesn't follow our texas motto... Bigger isn't always better lol

(Have you seen the size of those vitamins lately? GOOD GOLLY)

 

Multi-vitamins are a waste of money. Apart from a psychological benefit one may receive, there's little evidence a multi-vitamin does any good:

 

http://www.livescien...octors-say.html

 

Noting this above - there are individual vitamins and minerals, that if we are deficient, we should supplement from a high quality reputable source. This is not achieved taking a multi-vitamin.

 

For example - it is now known that vitamin D is chronically low in most of our bodies (especially for those in cloudy cold climates). If you avoid the sun and use sun screen - you almost certainly have low vitamin D. Along with low vitamin D most of us are low in vitamin K2 and probably Magnesium (soil is overworked compared to early decades, Magnesium deficiency is a result).

 

So I take enough vitamin D to get my blood level over 60ng/ml (as much as 10,000 I.U's or more per day is needed for me to achieve this level - its very individual so testing, monitoring is important). I noticed at the time that I began doing this, I was able to achieve PCRU and have been able to maintain it even though I stopped taking Sprycel over a month ago (Jury out on whether I will be successful and TKI free, but I am on a month to month monitoring program and I have a bet with Trey (12 months)).

 

I take 400-800 Magnesium Citrate per day. It goes with the extra vitamin D and helps me sleep like a baby (try it - you'll sleep great).

 

I take 300mcg vitamin K2 (for bone and artery health) and may stop taking it as I am developing a taste for Japanese Natto (truly an acquired taste) which supplies K2 naturally. Most fermented foods will do this. Vitamin K2 + D are vital for artery health and eliminate Osteoporosis in women.

 

I take 1000 mg of vitamin C out of habit and because Trey takes it.

 

In addition to the above vitamins and mineral, I take a lot a lot of Curcumin - but I consider Curcumin a spice.

 

And that's it. All of the other vitamins come from food, wine, scotch and cigars. And I probably get some vitamins from my wife, but that's personal.

 

Postscript:

http://www.hindawi.c...rt/2012/713243/

I noted with interest at my last bone marrow that I had no blasts recorded. Prior to my taking vitamin D to get my blood vitamin D levels restored to high normal, I always had some blasts in the bone marrow. Not any more. At diagnosis I had borderline accelerated level of blasts in my peripheral blood - scary time.  I can't stress how important vitamin D is to immune function and blood health. And how many of us had and may still have low vitamin D. I posted a topic in this forum asking how many people had normal or high vitamin D at diagnosis - no one had normal or high vitamin D. It seems that if people have very good vitamin D levels, they don't get CML! That's just my opinion. I don't see anywhere in the literature where they test a patient's vitamin D status at diagnosis. That would be an interesting statistic. Out of the 20,000 or so newly diagnosed, how many had perfectly fine vitamin D levels (i.e. > 50ng/ml)? Hmmm...

[rcase13]

I think I will ask the doctor to check for Vitamin D next time I see him. I will then take a vitamin D depending on results or maybe just increase my milk intake. Spring is here and then summer so that should help us.

Does blast in the blood match the blast in the bone marrow? What was your blast in the bone marrow at at diagnoses? I will have to ask for mine I have no clue what it was. Sounds like something I should know.

[scuba]

You can't get enough vitamin D from milk (one cup has about 100 I.U's). Vitamin D in milk will keep you from getting Rickets, but that's about all. Therapeutic levels need to be higher. http://healthyeating...ogurt-7063.html

 

You can easily start with 1,000 IU's per day prior to your doctor's visit. Depending on the 25-Hydroxy test (vitamin D test), he may suggest increasing your vitamin D (taken as vitamin D3 which is converted into the active form in your body) intake quite a bit higher. I have taken as much as 20,000 IU's per day when I was increasing my very low level. I may even stop taking vitamin D3 altogether when I go Scuba Diving and leave the wet suit off instead of on and get vitamin D from the sun. The important thing is to test a few times per year until a pattern is set for you. If you are indoors mostly, and little sun, a high potency vitamin D3 is probably needed.

 

Blast cells are typically higher in the bone marrow than in peripheral blood. In fact, there should be no blasts in peripheral blood. I don't have my initial data in front of me, but I recall I had blasts in peripheral blood and by bone marrow was higher still. If your body is differentiating blood cells properly - blast cells should not show up at all anywhere. Vitamin D helps your blood to differentiate into the final blood cells we need. Research shows that vitamin D can even cause leukemic cells to differentiate. Vitamin D is pretty amazing stuff.

[Busa]

Alright, I've got to ask...

 

Has anyone else had their "gag reflex" effected?  Since I've been on Gleevec, ever morning I start to brush my tooth  and go into the dry heaves for the next ten minutes.

 

Yeah, yeah, I know I'm strange, my wife tells me allllll the time.

[scuba]

I am following Scuba's lead and taking 6000IU of vitamin D3 and can't remember how much K2.I am sure the K2 is for memory

 

Research shows that if you take 10,000 IU's of vitamin D3 per day (with food that has fat) along with 300 mcg of vitamin K2, it is impossible to overdose on vitamin D. So, if I did not know what my vitamin D level was - I'd have no concern - for me - in taking 10,000 per day (vitamin K2 "consumes" D in order to create - matrix Gla protein (MGP). It is clear from the research reports that the current FDA guidelines for vitamin D (600 IU's per day) is woefully insufficient for people like us. People who have CML (cancer in general). So my game plan is to get my blood level up to around 70ng /ml. And I suspect I will need to take even more vitamin D3 to get there. And - it's seasonal. If I know I am going to be out in the sun without sunscreen and it's summer, I won't need to be taking extra vitamin D3, I might not even need to take any during that week in the sun Scuba diving a gorgeous reef.

 

On vitamin K2 - the best source are fermented foods like Natto. But Natto is not for the feint of heart. Scotch is not for the feint of heart either, but we learn to love it. I am learning to love Natto (not quite there ... but getting close). A package of Natto (45 grams) has about 400-500 mcg of vitamin K2. I also add 200-300 additional mcg of vitamin K2 with supplements. I don't eat Natto every day, but most days. Data suggests one can not overdose on K2 - so I just make sure I have enough over the 300 minimum. I take K2 for artery health, but there is evidence it works with vitamin D for blood disorders (http://www.lef.org/M...tamin-K/Page-01). K2 is an often overlooked vitamin. 

 

(My approach to CML is to hit it on multiple nutritional levels as a life style priority (vitamin D, vitamin K2, Curcumin, etc.) without having to resort to taking Sprycel. I do not want to be taking a toxic drug that has risks of heart disease, pleural effusion, brain issues and a host of other unknowns. I will take it if I have to - but it is sure nice not having to take it in order to keep CML at bay.)

[Jamie2015]

Research shows that if you take 10,000 IU's of vitamin D3 per day (with food that has fat) along with 300 mcg of vitamin K2, it is impossible to overdose on vitamin D. So, if I did not know what my vitamin D level was - I'd have no concern - for me - in taking 10,000 per day (vitamin K2 "consumes" D in order to create - matrix Gla protein (MGP). It is clear from the research reports that the current FDA guidelines for vitamin D (600 IU's per day) is woefully insufficient for people like us. People who have CML (cancer in general). So my game plan is to get my blood level up to around 70ng /ml. And I suspect I will need to take even more vitamin D3 to get there. And - it's seasonal. If I know I am going to be out in the sun without sunscreen and it's summer, I won't need to be taking extra vitamin D3, I might not even need to take any during that week in the sun Scuba diving a gorgeous reef.

On vitamin K2 - the best source are fermented foods like Natto. But Natto is not for the feint of heart. Scotch is not for the feint of heart either, but we learn to love it. I am learning to love Natto (not quite there ... but getting close). A package of Natto (45 grams) has about 400-500 mcg of vitamin K2. I also add 200-300 additional mcg of vitamin K2 with supplements. I don't eat Natto every day, but most days. Data suggests one can not overdose on K2 - so I just make sure I have enough over the 300 minimum. I take K2 for artery health, but there is evidence it works with vitamin D for blood disorders (http://www.lef.org/M...tamin-K/Page-01). K2 is an often overlooked vitamin.

(My approach to CML is to hit it on multiple nutritional levels as a life style priority (vitamin D, vitamin K2, Curcumin, etc.) without having to resort to taking Sprycel. I do not want to be taking a toxic drug that has risks of heart disease, pleural effusion, brain issues and a host of other unknowns. I will take it if I have to - but it is sure nice not having to take it in order to keep CML at bay.)

Hmmmm that is so interesting! My vitamin D lvls pre diagnosis were 26.9. That is when my platelets were found to be elevated. It has not been checked since diagnoses. I will definitely have to ask my doctor to check for that. As far as the vitamin k2. Is that also something doctor should check?

[scuba]

Hmmmm that is so interesting! My vitamin D lvls pre diagnosis were 26.9. That is when my platelets were found to be elevated. It has not been checked since diagnoses. I will definitely have to ask my doctor to check for that. As far as the vitamin k2. Is that also something doctor should check?

 

I don't know of a vitamin K2 blood test; I've never asked for one, but I'm sure there must be a way to test or how would they know that 300mcg is "therapeutic"?

[Jamie2015]

I don't know of a vitamin K2 blood test; I've never asked for one, but I'm sure there must be a way to test or how would they know that 300mcg is "therapeutic"?

Agreed. My mom is a nurse and said she does not see that available on the lab sheet too be checked.... So I wasnt sure how we would know the correct dosage to take