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#1 scuba

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Posted 08 January 2016 - 08:16 AM

http://www.medicalne...cles/304797.php

 

Just sayin' - vitamin D helps keep your progenitor cells differentiating - even leukemic ones. Keep your vitamin D levels up in the high normal range, but be careful not to fall down (last sentence).

 

In my own case, I always had some blast cells in my bone marrow tests. Once I elevated my vitamin D levels to high normal, blasts disappeared. It is the uncontrolled expansion of blast cells that kill in CML (as well as other Leukemia's). 

 

Disclaimer: vitamin D is not a 'cure', but we do know from emerging science that vitamin D is vital for cellular differentiation and apoptosis (normal cell end of life). It seems reasonable, based on studies now emerging, that low vitamin D status shifts the balance in favor of Leukemia and that high vitamin D (high normal, not overdosing) shifts the balance away from Leukemia. Just another risk factor to reduce. 

http://www.ncbi.nlm....pubmed/19650715

 

Update: http://www.oncologyn...article/463796/


Edited by scuba, 08 January 2016 - 07:29 PM.

Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#2 Cool Hand Leuk

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Posted 08 January 2016 - 08:33 AM

Hi,
I couldn't agree more. After hitting a plateau I decided to stop all supplements Vitamin D3, K2 and Quercetin, to see if they were getting in the way of my TKI therapy. Things got worse my BCR-ABL results went fromthe mid-2 range to the low -2 range. since then I added the D3 and K2 back to my routine. I had a BCR-ABL test this week. I will let you know if it made a significant improvement or not soon.

#3 Buzzm1

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Posted 08 January 2016 - 09:39 AM

when do you take your vitamin D?


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#4 scuba

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Posted 08 January 2016 - 09:51 AM

I tend to take my vitamin D3 (best form which converts to D in the body) mid-day with food that contains fat. I think of it this way - your skin will produce vitamin D naturally when exposed to the sun. When are we in the sun? During the day. When is the sun strongest? At noon. So over a few million years or so - it seems reasonable the body evolved to expect and handle vitamin D showing up mid-day in large quantities (e.g. your body can produce upwards of 10,000 I.U's of vitamin D when exposed to summertime noon sun). 

 

And sure enough - taking vitamin D at night before bedtime disrupts sleep:

https://www.bulletpr...with-vitamin-d/

 

Most times, however, I'll take vitamin D in the later morning when I tend to take Curcumin. I always take vitamin D with K2. 


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#5 pammartin

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Posted 08 January 2016 - 10:50 AM

I watch and read these threads religiously, but admit to lurking about and not posting much.  I have read quite a bit on the Vitamin D subject and I agree it is a 'helper' and if taken responsibly it can do nothing but help the body in many ways.

 

I have read post after post about people's Vitamin D level being low upon detection and during treatment.  I only know of a few of us that had and continue to have normal Vitamin D levels but were still diagnosed with CML and it does not seem to make a difference to our major response to the TKIs. 

 

I was wondering what you thought makes the difference, if you have thoughts on it and why is this seem to be a significant marker in many ways but for a few of us.  I recently had labs completed and my Vitamin D still holds steady, just as it has throughout my life.

 

These things drive me nuts because there seems there should be some way to rationalize why it is so different for a few of us.

 

Points to ponder.  Thanks.



#6 scuba

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Posted 08 January 2016 - 12:16 PM

A good summary of recent work in vitamin D and immune responses:

 

http://www.ncbi.nlm....les/PMC2879394/

 

Perhaps having what we think is a normal level of vitamin D is not sufficient (i.e. 30-50 ng/ml). Perhaps for cancer protection and risk reduction levels of vitamin D need to be in the 60-80ng/ml range. There is a big debate going on regarding what levels are needed.

 

I don't know of anyone who developed CML who had levels of vitamin D in the higher normal range. It is certainly true, however, that having very low vitamin D levels impairs our immune system.

 

There is a clinical study underway to determine what levels of vitamin D confer what level of protection and whether there is a relationship:

 

http://www.vitalstudy.org/index.html


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#7 pammartin

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Posted 09 January 2016 - 06:33 AM

Points to Ponder.

 

Thanks!



#8 mdszj

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Posted 09 January 2016 - 10:49 AM

Does it matter whether you take vit D pills or cod liver oil?


dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16


#9 scuba

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Posted 09 January 2016 - 01:22 PM

Does it matter whether you take vit D pills or cod liver oil?

 

I take vitamin D3 in capsule form. The key is that is should be D3 not D2. 

Also - have yourself tested so you know your vitamin D level. More is not better.

 

Additional reference:

 

https://www.vitamind...upplementation-blood-levels-and-sun-exposure


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#10 Noodle

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Posted 09 January 2016 - 03:50 PM

My vit d level says it is a combo of d2 and D3. And is at 60 with 80 showing high normal. Am I looking at the right lab?

Thanks
Julie

Blessings,

Julie

DXD 22 March 2013 AML M4 Inversion 16 Negative FLT 3 & CKIT

Induction 7+3 & 4 Rounds of HiDAC, lowered dose due to slow count recovery.

Qrtrly PCR & Phlebotomy for high iron stores

Almighty God is my redeemer and HEALER!!@

Psalm 103:1-5 — "Bless the Lord, O my soul, and forget not all His benefits.... who heals all your diseases..


Mark 10:27 (New Living Translation) — Jesus looked at them intently and said, "Humanly speaking, it is impossible. But not with God. Everything is possible with God."





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