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#21 scuba

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Posted 18 March 2015 - 05:39 PM

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

 

I started taking K2 (also known as Menaquinone or MK-7) in July of 2013 after my first physical in many years revealed hardening of the arteries (calcium deposits). I did not have any blockages showing up - but my artery walls were turning into steel. Very bad. Blood pressure was normal at rest, but once on the treadmill, my blood pressure shot up dangerously high (stroke territory). They took me off the treadmill after only 30 seconds even though I felt fine. My vitamin D also was tested and came in at 17 ng/ml. This was my first vitamin D test, some three years after CML diagnosis. No wonder I struggled with Gleevec and Sprycel early on.

 

I did a lot of reading and learned about the dual dance of vitamin D and K2 to help the body clear out calcium from soft tissue (arteries, lungs, kidneys, etc.). And that high levels of K2 in the blood can reverse artery calcification. And as a bonus, I learned about vitamin D's role in cancer, cellular differentiation and T-cell/NK cell activation.

 

Fast forward one year. In July 2014 I repeated my physical. I had been taking vitamin D and K2 for a year by this time religiously. The calcium artery scan showed a calcification reduction of over 46%! Even my primary care physician thought that was remarkable. He never sees reduction let alone 46%. I suspect my Kidneys and lungs also have experienced calcium deposit reduction as well. But most important to me, I passed the treadmill test with flying colors - nine full minutes at running pace and my blood pressure was normal throughout. All it took was one year.


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"


#22 Frogiegirl

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Posted 18 March 2015 - 08:18 PM

Hey scoobs:) just received my vitamin d hydroxy 25 test and it came back 46.5 ng? So I'm guessing that's not to bad? Although I have been supplementing for two weeks prior to the test. ...not sure if that was enough time to make a difference? Any input?

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.


#23 Trey

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Posted 18 March 2015 - 08:21 PM

Frogsie -- you were right the first time....it is Scubs.

 

Scubs:  Don't forget the spackle in your colon which only a curcumin enema can reverse................aboral, aboral, aboral.  Wait....too Pearl Harbor.



#24 Tedsey

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Posted 18 March 2015 - 08:26 PM

Nice to see I live on through my adjectives...arboreal. About natto, try it with some plum vinegar mixed in. Put it over rice and scoop it up with some seasoned dry seaweed. Call me crazy, but it is my favorite breakfast ever!

#25 Tedsey

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Posted 18 March 2015 - 08:27 PM

Darned spellcheck!

#26 Tedsey

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Posted 18 March 2015 - 08:29 PM

Wasn't referring to living in trees.

#27 Trey

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Posted 18 March 2015 - 09:49 PM

Arboreal aborals. 

 

Thanks, Teds.



#28 scuba

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Posted 18 March 2015 - 10:05 PM

Hey scoobs:) just received my vitamin d hydroxy 25 test and it came back 46.5 ng? So I'm guessing that's not to bad? Although I have been supplementing for two weeks prior to the test. ...not sure if that was enough time to make a difference? Any input?

 

How much were you taking? No doubt supplementing for two weeks increased your reading. 46.6 ng/ml is in the normal range - so you were probably low before taking vitamin D. Goal should be to get your levels over 60. I am shooting to get mine to between 70-80 since I am no longer taking any Sprycel.


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"


#29 scuba

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Posted 18 March 2015 - 10:10 PM

Nice to see I live on through my adjectives...arboreal. About natto, try it with some plum vinegar mixed in. Put it over rice and scoop it up with some seasoned dry seaweed. Call me crazy, but it is my favorite breakfast ever!

 

Hi Teds - when did you start eating Natto?


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"


#30 Billie Murawski

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Posted 18 March 2015 - 10:12 PM

If I tried all those vitamins I would get deathly sick. Top it off with a tki and I know I would be dead!



#31 scuba

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Posted 18 March 2015 - 10:20 PM

Frogsie -- you were right the first time....it is Scubs.

 

Scubs:  Don't forget the spackle in your colon which only a curcumin enema can reverse................aboral, aboral, aboral.  Wait....too Pearl Harbor.

 

That's SCUBES to you, Mr. Trey.


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"


#32 Frogiegirl

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Posted 19 March 2015 - 08:08 AM

Scoobs:) I'm following your lead with the 10000 iu per day(I take 5 2000 iu) so do u think that made a difference only taking for two weeks prior? .....I'm suprised! I'm going to add the k2. I'm a little nervous to start the curcumin, but the pharmacist who was cross referencing was Young and said she does everything by the book. ....

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.


#33 PhilB

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Posted 19 March 2015 - 08:39 AM

Arboreal aborals. 

 

Thanks, Teds.

Is that the one where the Dr makes you hang upside down from a branch while he administers it?



#34 scuba

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Posted 19 March 2015 - 08:40 AM

Scoobs:) I'm following your lead with the 10000 iu per day(I take 5 2000 iu) so do u think that made a difference only taking for two weeks prior? .....I'm suprised! I'm going to add the k2. I'm a little nervous to start the curcumin, but the pharmacist who was cross referencing was Young and said she does everything by the book. ....

 

It absolutely made a difference (i.e. 10,000 per day for two weeks). You want to monitor your vitamin D as it rises. Once it levels off you 'll have a good idea on your proper dose. It will change with the seasons if you get out into the sun with exposed skin. Adding K2 will put downward pressure on vitamin D. K2 "consumes" D in order to make the proteins that move Calcium around. 

 

You do not want your vitamin D blood level to go above 100. But from what I read, that is very hard to do unless you overdose on vitamin D in a big way. 10,000 IU's per day won't do that. And with vitamin K2 in your system, it will be impossible. I have been taking 10,000 - 15,000 IU's per day this past winter and I can't get my vitamin D level much above 55 ! It's the K2 I eat and take that is using the D. It's amazing how much better I feel (but stopping Sprycel is probably helping in that department). 

 

Here is an additional reference on vitamin D:

https://www.vitamind...y-results-mean/

 

Your level is in the safe range right now.

 

(p.s. As summer returns and I am out in the sun doing my noon run, I will cut back on vitamin D supplements significantly (to 5,000 IU's per day) or even stop taking them during a dive vacation. The sun is the best way to get maximum vitamin D naturally.)


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"


#35 scuba

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Posted 19 March 2015 - 09:04 AM

Scoobs:) I'm following your lead with the 10000 iu per day(I take 5 2000 iu) so do u think that made a difference only taking for two weeks prior? .....I'm suprised! I'm going to add the k2. I'm a little nervous to start the curcumin, but the pharmacist who was cross referencing was Young and said she does everything by the book. ....

 

By the way - there are contrary views out there. Trey will no doubt concur on these:

 

http://www.arkansaso...201/?f=features

 

http://well.blogs.ny...e-or-hype/?_r=0 (from 2010, so may be outdated)

 

Dr. JoAnn Manson is studying vitamin D levels and benefits in one of the largest trials to date (the VITAL study). She does not recommend consuming vitamin D supplements in excess of 4,000 per day. She subscribes to "more is not better" and she is certainly correct on that point. It's not how much you take, it's what your blood level is currently. I take larger amounts to get my blood level up and will lower my intake once I get there.

 

So why do I discount these "studies"? 

 

I have friends of mine who have been taking 10,000 IU's of vitamin D3 for years (on and off depending on time of year) and maintain their vitamin D level at around 80 ng/ml. In one case, she is a breast cancer survivor without chemo or radiation (15 years cancer free). Another friend is out in the sun all of the time (they have a big boat) and her blood level of vitamin D is also around 80ng/ml and she takes only 1,000 IU's per day. Other friends and colleagues of mine have similar results. So I go have my blood tested as part of my first in a long time physical and wow...I had really low vitamin D.

 

So I came to my own conclusion that I need to get my vitamin D level up to where nature would put it anyway if I was out in the sun. That's the key. What is natural. Natural is not staying indoors at a keyboard avoiding the sun. But if I am not going to be out in the sun, I'll take D3 supplements and test my blood level and get it the heck up. 

 

(and just today - a new report: http://www.ctvnews.c...ests-1.2287342)


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"


#36 Gail's

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Posted 19 March 2015 - 11:15 AM

Hey scuba. My understanding is that it would take a tremendous amount of sun exposure to get even 400 mg a day. The article you posted on how to raise levels said it would take a naked body a full year of sun to get close. I do appreciate the discussion. Goes along with the articles I've read on cancer and vitamin d. My dermatologist recommends 20 min of sun per day even with my history of skin cancer. I think sun exposure has much to do with sleep cycles and mood as well as vitamin d
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#37 snowboots

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Posted 24 March 2015 - 08:47 PM

Well, I have been asking both my primary physician and my hemo/onc for a Vitamin D test for the past 3 months now, and they always say "we'll do it next time". At today's visit I had a CBC done and again asked for a Vitamin D test, and now he tells me he cannot order that done because it has nothing to do with CML! Neither will order the test unless you have a legitimate "reason". Very frustrating - is there a home test you can do on your own? And if there is, does it give you dependable accuracy? He has no problem with me supplementing with D, K, and magnesium, but how would I know how much to take if I didn't have a baseline?



#38 CMcLain

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Posted 24 March 2015 - 09:23 PM

I also tried to get my onc to test me for vitamin D deficiency and they denied running the test because he said it wasn't something they were monitoring. Very frustrating!

#39 scuba

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Posted 25 March 2015 - 05:20 AM

I also tried to get my onc to test me for vitamin D deficiency and they denied running the test because he said it wasn't something they were monitoring. Very frustrating!

 

I have two physicians. One for CML at M.D. Anderson and the other is my primary care physician (Wellness doctor). I see my primary care physician once a year for an annual physical (primarily for heart checkups). He is the one who tested for vitamin D and set my path on getting this vitamin level up. M.D. Anderson, however, will run any blood test I ask for (lipid panel as well as the 25-Hydroxy test (which is vitamin D)). They know what I am trying to do and are very accommodating.

 

Go see a primary care physician (the kind that have athletes for customers). Don't depend on your CML doctor to think outside the box or care about your overall "wellness". He's not monitoring your "health". He's monitoring your CML disease. Put yourself in charge.


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"


#40 scuba

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Posted 25 March 2015 - 05:32 AM

Well, I have been asking both my primary physician and my hemo/onc for a Vitamin D test for the past 3 months now, and they always say "we'll do it next time". At today's visit I had a CBC done and again asked for a Vitamin D test, and now he tells me he cannot order that done because it has nothing to do with CML! Neither will order the test unless you have a legitimate "reason". Very frustrating - is there a home test you can do on your own? And if there is, does it give you dependable accuracy? He has no problem with me supplementing with D, K, and magnesium, but how would I know how much to take if I didn't have a baseline?

 

No surprise on your hem/onc regarding vitamin D, but your primary physician? Replace your primary physician. He or she is not competent. Everyone should have their vitamin D tested as part of their "primary" checkup. 

 

(note on "K" - I assume you meant vitamin K2 - it is not the same as K, it is a very different vitamin)


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"





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