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What kind of supplements, vitamins, minerals are you taking, and why?


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#1 TeddyB

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Posted 06 February 2014 - 01:28 PM

Hello.

I am curious, and its been a while since this has been revisited, so.....

Which supplements are you guys currently on, and how much do you take?

Im on:

Vitamin D3 800 IU

Fish Oil

Multivitamin

I also try to use Turmeric at least once a day on my food.

All taken at night (Gleevec in the morning)

I had Vitamin D3 deficiency a few months after dx, and im now getting around 1400IU total from my VitD, Fish Oil and Multivitamin which should be enough.

Oh and i almost forgot, my evening Resveratrol, cheers



#2 johnny99

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Posted 06 February 2014 - 02:24 PM

Hey, here's what I'm taking:

- fish oil (EPA to be exact)

- vitamin D

I hope this doesn't interfere with tki's. I am also looking to take something to boost platelets and/or ANC, but so far found nothing for this.

Considering to try (for general health, don't really think there will be much benefit against cml)

-berberine

-curucumin



#3 LivingWellWithCML

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Posted 06 February 2014 - 02:59 PM

- Vitamin C supplement w/ my breakfast Gleevec 400mg dose

It "might" promote acidity in the stomach and improved absorption of Gleevec

- Genistein 125mg w/ my breakfast Gleevec 400mg dose

I did this for 3 months because of the "potential" benefit of a natural TKI to complement Gleevec.  PCR dropped from 3.5 to 4.0 log reduction over this 3 month period.  I decided to stop temporarily, but might restart it again soon.

- Circumin 2g w/ lunch

I did this for several months because of the "potential" benefit of inducing apotosis in leukemic cells and to control inflammation from endurance exercise.  I stopped for no particular reason and will probably start it again soon.  I might even try ramping up to the full 8g/daily that @Scuba is doing.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#4 Rissa

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Posted 06 February 2014 - 04:36 PM

Iron for anemia

Phosphorus (My phosphorus level is low)

B-12 per doc

Multi-B per doc

Multi per doc

C to help the iron absorption

D just because

Magnesium for inflammation

Probiotic for my stomach issues

I used to take turmeric after dinner, but every night I could taste bile and I read somewhere that turmeric could stimulate bile production, so I quit taking it.  But I also had my gallbladder removed, so that could have something to do with it. 



#5 chriskuo

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Posted 06 February 2014 - 05:54 PM

i am taking 1000mcg vitamin B-12 because I tested low last year.

2500mcg turned out to be too much.



#6 Trey

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Posted 07 February 2014 - 10:47 AM

Multi + C daily

When I have muscle cramping issues: potassium + magnesium

Occasional fermented juniper berries mixed with tonic water and a twist of lime



#7 IGotCML

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Posted 07 February 2014 - 01:16 PM

Zinc 50mg twice a week for immune system health.  Started doing this about 10 years ago as a recommendation from my boss.  This has significantly reduced the amount of colds I get.  Worthless against CML, obviously.

Saw palmetto 160mg daily.  Stated taking this about 12 years ago because of possible prostate health benefits.  I have no idea if it is actually doing anything beneficial, but I have had no problems with my prostate, so I keep doing it.

Vitamin E 400 IU per week, to ensure I get enough in my diet.

Magnesium citrate 400mg daily.  This was MD recommendation after I got CML, as I need proper magnesium levels for Tasigna.



#8 GerryL

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Posted 07 February 2014 - 10:16 PM

Thought the tonic water was supposed to fix the muscle cramps. Maybe you're not drinking enough gin and tonics?



#9 GerryL

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Posted 07 February 2014 - 10:19 PM

Hi Dan,

You asked me how much Curcumin I was taking, it is 500mg morning and night. Hands are starting to feel better, so maybe it is working; plus at this level I don't seem to be getting the bruising I got at double the strength.



#10 Susan61

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Posted 08 February 2014 - 05:21 PM

Hi:  I started magnesium 250mg a day, and it has helped my leg cramps tremendously.  I think my Nexium was depleting my Magnesium level.  I take 1000 mg. Vitamin D, and it has brought my Vitamin D level back to the normal range.  I have been told I should take Vitamin E and B-12, but have not started it yet.

Susan



#11 LivingWellWithCML

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Posted 08 February 2014 - 07:42 PM

That's good news Gerry!  I think I am going to restart it again, but the 8g/day potential CML benefit is pretty expensive ...


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#12 Pin

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Posted 10 February 2014 - 07:26 AM

Great thread!

For vitamins, I take:

- Magnesium citrate 2000mg (300mg equivalent - for cramps, very helpful at this dose, any less didn't work for me)

- Calcium citrate 2400mg (500mg equivalent - for cramps, bone strength)

- Iron tablets (on and off, depending on ferratin levels)

- Vitamin C, Zinc (occasionally for colds).

My phosphorus levels have been on the low side for my last 3 tests, but so far I've only been advised to eat high phosphorus foods...

I'm wondering if I should start fish oil too, my eye dryness has been off the charts lately. The punctal plugs have helped, but our weather here is so hot and dry, and if I'm not outside I'm in air-conditioning! The other day I was outside jogging and blinked and my contact rolled up into a ball...ouch.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#13 Pin

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Posted 10 February 2014 - 07:27 AM

Susan, that's great! I'm so glad to hear that the magnesium has helped you too


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#14 Frogiegirl

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Posted 10 February 2014 - 01:07 PM

I don't get it??? when I asked my nurse if I could start taking some supplements she replied "the only thing you can take is a prenatal". I have brought up drinking alkalized water and they just laughed. I asked about going to a chiropractor and they said they don't believe in voodoo doctors. I seriously feel like I am a huge bother to them. I called and let my nurse know I was still getting severe headaches and she replied well take you emetrex(not sure how to spell it) I said to her "What the HELL is emetrex"??? she said oh did I not give you a prescription for that??? Um no you didn't. I am considering just taking some vitamins on here that you all are taking, and maybe I could get some relief from the cramps and things. Maybe help with the thinning hair. glad I came across this post:) Also I am taking tasigna FYI.


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#15 tazdad08

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Posted 11 February 2014 - 01:17 PM

Hi Frogiegirl..

Imitrex is a med that I have taken for a few years, It is for migraines. I can honestly tell you from experience that taking an Imitrex for any type of headache other than a migraine is a total waste of money. I have taken them at times when I thought I felt a migraine coming on and they will not do a thing if its stress, sinus, or anything else. I sometimes go a chiropractor. It does help, just beware of them trying to sell you a "package" to get you to keep coming back. I am on Tasigna also. I just take a cheap multi vitamin from Walmart... yeah, I know that our bodies absorb more from a high dollar natural vitamin... but I also know what dealing with cml has done to my bank account lol. not funny... but ya gotta have a sense of humor.


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#16 Frogiegirl

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Posted 11 February 2014 - 06:01 PM

Hey Jimmy walker, I too am a victim of the high costs of our CML treatment I was hoping my doctors staff would be more open minded about taking supplements. Also the imitrex  does very little for me, but they told me it was the lowest dose 25mg I believe.  On another note I just got my three month bone marrow biopsy results back and the doctor told me I was in CCYR ? I think that is good for only 3 months in.???? I 'm still learning so much about this diagnosis. So hopefully someone can fill me in if that's a good thing or a really good thing? She said it was fantastic. any input would be great


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#17 GerryL

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Posted 11 February 2014 - 06:56 PM

Congratulations you've achieved the second milestone, they allow up to 18 months to achieve this. http://www.mycmlcare...ML-testing.aspx



#18 Guest_billronm_*

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Posted 11 February 2014 - 08:59 PM

I'm with you Gerry, tonic water isn't any good unless you put something in it, booze is a great muscle relaxer.   Billie



#19 GerryL

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Posted 11 February 2014 - 10:53 PM

Billie,

I think skip the tonic water and go straight for the booze. .



#20 Guest_billronm_*

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Posted 11 February 2014 - 11:02 PM

Gerry,

  I hear they got some pretty good stuff out there there that doesn't need to be mixed with anything flavored vodka (I gotta try that if I ever get out of my house) Winter UGGG!  It's -2 degrees right now, boy a cup of irish coffee would taste good right now Mmmm.






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