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Bone Pain/Vitamin D deficiency


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#1 dede5

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Posted 19 June 2016 - 11:35 PM

I've been taking Sprycel for 5.5 years. Two months ago, I started to have excruciating pain in both of my arms. Tried different remedies, such as heating pad, deep heat ointment, otc pain killers, etc. Nothing helped very much. Also had lesser pain in lower extremeties. In early May, mentioned it to my onc who first asked if I had pain in my neck or jaw as well (I assumed he was ruling out heart attack symptoms). Then he ran a test to check my Vitamin D, which came back 6.1. Taking one Vit D pill once a week (have taken 2 so far) and now leg pain is increasing. I read that one of the side effects of Vit D supplement is also bone pain. Right now feel like I'm damned if I do and damned if I don't. There's horrible pain either way. Has anyone else dealt with this, and did it ever go away? 


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#2 scuba

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Posted 20 June 2016 - 06:49 AM

Dede ... Taking a vitamin D pill once a week is the WRONG way to correct deficiency! You're overloading your system at one time (having to do with a shortage of 'vitamin D receptors on the cell membranes') which is a shock to your system.

 

I had very low vitamin D as well. I took vitamin D3 at 10,000 IU's per day per week for six weeks and then re-tested. You want your vitamin D level around 50-70 ng/ml. It will take months to get there at this rate, but start. Once your level is above 50, you can cut back to 5,000 IU's per day alternating with 10,000.  Avoid taking vitamin D2 (which probably prescribed to you) - it is a less bio-available form. Take your vitamin D3 during the day around noon with a meal (that has fat in it). In addition to vitamin D3, I also take vitamin K2 (180 mcg) with it as well. They work together for bone health. 

 

The pain will fade completely in a few weeks. You want to supplement gradually. You'll get there.


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"


#3 dede5

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Posted 20 June 2016 - 10:42 AM

Thank you! I'll try this. I knew something was wrong. 


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#4 scuba

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Posted 20 June 2016 - 11:33 AM

Thank you! I'll try this. I knew something was wrong. 

 

When I first had my vitamin D tested by my 'wellness' physician, it came back at 16 ng/ml (very low). He prescribed 50,000 IU's per week of vitamin D2. I asked him why a prescription when I can buy a high quality pharmaceutical grade version. He told me that prescribing a medication that is "certified" is his practice, but if I wanted to buy an over the counter version that would be fine. And that is what I did. A year later - I tested at 60 ng/ml and he told me to keep doing what I am doing. The highest level I ever had was 72 ng/ml and the lowest (new lowest that is) was 59. I do this by taking 5,000 IU's of vitamin D3 every day with food in summer and alternating 5,000/10,000 IU's in winter. You may need less or more depending on your body's response. 

 

Vitamin D is not really a vitamin - it functions more as a hormone in the body. It is important not to overdo it as it does accumulate in body fat. Fat soluble is nature's way of storing vitamin D for later release. Testing your vitamin D level's twice a year will show how your body responds to supplementing. By the way - since vitamin K2 'uses' vitamin D to work - people who take vitamin K2 rarely have any vitamin D overdose issues. 

 

A side note - since getting my vitamin D level up to high normal (above 50 ng/ml), I have not had the flu or cold. And my blast cells which were always present at CBC/PCR test time went to zero. Vitamin D is very important for the immune system. 


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 dede5

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Posted 20 June 2016 - 03:46 PM

Good information to know. One more question: In your opinion, would a health store vitamin would be better than, say, Walgreen's or Walmart? I've heard some of the cheaper ones have been, diluted, so to speak. I definitely want to get the best value, but don't want to pay a lot of money if the less expensive ones will do the same thing. 


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#6 scuba

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Posted 20 June 2016 - 06:58 PM

I don't know about Walgreen's or Walmart - I buy mine from the Vitamin Shoppe. And since I have been using their brand for over 3 years and it did what my measurements show - I think they are good to go. The key is to have twice a year blood tests to show your response.


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 dede5

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Posted 20 June 2016 - 09:17 PM

Ok. That's what I wanted to know. Thanks so much for your helpful information. I look forward to being pain free  :wacko:


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#8 tiredblood

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Posted 21 June 2016 - 08:39 PM

Vit. D3 helped me so very much.  I hope you have excellent results as well.  I had two people (without CML) tell me their Vit. D deficiency stories and then watched something about it on Sunday Housecalls (Fox News), so I had the primary care doc check my level. Sure enough, I was deficient, and had much improvement once I corrected the deficiency.



#9 scuba

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Posted 21 June 2016 - 09:01 PM

Vitamin D acts more like a hormone than a true vitamin. In that sense it is similar in 'style' to Thyroid hormone (and other hormones). Many cells in the body ESPECIALLY bone/blood cells have vitamin D receptors which need vitamin D in order to do their action. 

 

We now know that Vitamin D is required for cells to differentiate. And in fact - vitamin D is vital for blast cells to differentiate into the subsequent daughter blood cells. CML cells have vitamin D receptors. 

 

Vitamin D is no cure of course any more than any other vitamin is a "cure". But not having adequate vitamin D probably made it easier for CML to take root. Vitamin  D activates T-cells responsible for fighting cancer.

 

https://www.youtube.com/watch?v=3GM0CnO6-ds&feature=youtu.be

 

Everyone should know their vitamin D status. If it is below 30, you are deficient - and if it is around 30, it's not enough. I maintain mine around 70 ng/ml. I started out at 16 or so. No wonder I developed CML. I am positive (not scientific) that if my vitamin D had been over 50 ng/ml those so many years ago - I would never have developed CML. My personal opinion. It is my hope that over time as CML decreases with PCRU success, I will be able to stop taking my 20mg Dasatinib and leave this behind me.

It's my hope anyway. Vitamin D is part of the equation. Curcumin is the other ... and Magnesium, and vitamin C and Scotch and wine and a happy wife (this last one is vital to success).


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 dede5

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Posted 21 June 2016 - 11:17 PM

Never realized that Vitamin D deficiency could cause CML. Even if it's just a theory, I plan to have all of my family get their levels checked. Thank you both for your input!


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#11 scuba

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Posted 22 June 2016 - 05:47 AM

Never realized that Vitamin D deficiency could cause CML. Even if it's just a theory, I plan to have all of my family get their levels checked. Thank you both for your input!

 

I want to be clear. Vitamin D deficiency does NOT cause CML. But having a very low vitamin D level certainly doesn't help prevent it from taking root and becoming disease.

 

What causes CML is a translocation between the 9;22 chromosomes at the bcr abl breakpoints. What causes the translocation is the subject of debate from naturally occurring to radiation or some carcinogen (like benzene 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"


#12 dede5

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Posted 22 June 2016 - 08:47 AM

Oh. Ok. Gotcha!


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#13 mdszj

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Posted 22 June 2016 - 05:11 PM

" and a happy wife (this last one is vital to success)."

 

Happy wife, happy life.


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


#14 gerry

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Posted 23 June 2016 - 05:04 PM

Scuba, interesting thing with the tumeric, I can take it now without issues. Gleevec seemed to increase the bruising when I tried it while on the Gleevec.




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