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Vitamin D (Reprise)


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#21 Gail's

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Posted 27 February 2015 - 04:14 PM

So, scuba, Debbie doodad and I both had low levels of D prior to getting CML. Are you keeping track?
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

#22 scuba

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Posted 27 February 2015 - 08:03 PM

So, scuba, Debbie doodad and I both had low levels of D prior to getting CML. Are you keeping track?

 

I am keeping track. So far not one person has had normal or above levels of vitamin D around diagnosis. Everyone has reported low levels of vitamin D. I should ask how low were your levels? Mine were 17 ng/ml. (very very low). Now they are near 60 and I am working to increase it to above 70 ng/ml and hopefully keep it 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"


#23 Gail's

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Posted 27 February 2015 - 08:58 PM

I am keeping track. So far not one person has had normal or above levels of vitamin D around diagnosis. Everyone has reported low levels of vitamin D. I should ask how low were your levels? Mine were 17 ng/ml. (very very low). Now they are near 60 and I am working to increase it to above 70 ng/ml and hopefully keep it there.


Must have been 1. Dr said nearly undetectable. Two years to get to 40 and today's level was 43. My WBC is down to 5000 and rbcs low but stable. Hooray!
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

#24 scuba

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Posted 28 February 2015 - 07:16 AM

Must have been 1. Dr said nearly undetectable. Two years to get to 40 and today's level was 43. My WBC is down to 5000 and rbcs low but stable. Hooray!

 

Gail - Were you at 40 when diagnosed? or did you get to 40 since diagnosis?

 

Aslo - 40 is low for people with cancer. Recommended levels are near 80ng/ml. 40 is sufficient for bone health. 


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"


#25 CallMeLucky

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Posted 28 February 2015 - 08:29 AM

I also had low vit d
Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#26 scuba

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Posted 28 February 2015 - 08:52 PM

I also had low vit d

 

I am formulating a hypothesis that below normal/necessary Vitamin D level was conducive to my CML expansion and that high normal vitamin D will contribute to me maintaining remission even in the absence of a TKI (e.g. Sprycel). The TKI was needed to normalize the bone marrow and kill off the majority of CML daughter cells. Without that - nutrition alone would probably not have been enough (perhaps slow it down some).

 

The key to my hypothesis is that it is normal for blood stem cells to translocate the 9;22 chromosome at the bcr-abl break point. And CML becomes a disease when our bodies are handicapped in eradicating those cells in a normal manner (T-cell, NK cells). Low vitamin D may be a big contributor to handicapping us especially in regard to the blood system. I am testing this theory now that I have raised my vitamin D level back up to high normal as well as taking Curcumin and vitamin K2. I feel I might be able to keep CML in check naturally. If a CML stem cell divides, my healthy immune system might be able to eradicate it - just like it would with normal people.

 

I have been 3 weeks without Sprycel and I feel just fine with lots of energy. On March 10th I go in for my normal CBC and PCR blood test. I expect my RBC's to have increased into the normal range as well as the other blood markers.

 

I am 50-50 on whether my PCR will remain <0.01 or "undetected", either one is fine with me. If I remain <0.01 or "undetected", I will go another month without Sprycel. If I continue to remain the same, I will go two months before PCR testing. And if I continue to remain the same, I will go back to my regular 3 month testing without any TKI. Am I dreaming - perhaps. But I feel the time is right to try this test. If this works, then I'm sure the folks at M.D. Anderson will want to look at this. I do wonder why they don't test for vitamin D as a matter of routine during diagnosis - and if low - get their patients levels up as part of any TKI protocol. But I think we know the answer to that.

 

On the other hand, if my PCR jumps, then I will have my answers. And back on Sprycel I go - probably for the rest of my life. And I will concede somewhat to Trey that a stem cell that goes bad gives you cancer;  Rather than an immune system that becomes weak unable to correct a translocation error through apoptosis.

 

We'll see ... it's exciting.


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"


#27 Trey

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Posted 28 February 2015 - 10:05 PM

I hope you stay PCRU.  That would be wonderful news.



#28 Gail's

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Posted 01 March 2015 - 12:34 AM

Gail - Were you at 40 when diagnosed? or did you get to 40 since diagnosis?
 
Aslo - 40 is low for people with cancer. Recommended levels are near 80ng/ml. 40 is sufficient for bone health.


I was near undetectable and two years later at 40. I assume I was still there at diagnosis since my vit D was 43 last week-- 1 month into diagnosis.
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

#29 scuba

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Posted 01 March 2015 - 05:36 AM

I hope you stay PCRU.  That would be wonderful news.

 

Perhaps this might give you incentive to try cessation if my experiment works. You have been PCRU for such a long time. 

 

Have you had your vitamin D level checked? We've let our guard down by avoiding the sun with sunscreen. I do wonder if CML would ever have gotten a foothold if our natural defenses were maintained. In other words, is it possible to get CML if ones vitamin D level was elevated to what the sun would do with normal noon time exposure (around 80 ng/ml)? And that by allowing vitamin D to fall - we are essentially starving our immune cells (especially the ones that fight cancer) causing them to be largely inactive (http://www.scienceda...00307215534.htm).

 

In my case - it was dramatic - my vitamin D was 17 when I finally had it tested a year and a half ago.  What an eye opener. All those years avoiding dairy, no sun (because I was always in a wet suit), no vitamin D enriched food of any kind. When the trigger came for CML (probably a series of cat scans. I had for something unrelated), I had no defense. I also would catch the flu like every year and colds all of the time. Not any more. My wife, by the way, never got sick over the years - and her vitamin D is high normal (because of her doctor prescribing it for breast and bone health years ago). I never connected the dots.

 

http://www.ncbi.nlm....pubmed/21527855

 

I have never been able to get to PCRU with only 20 mg Sprycel. I have had a good response and I suspect Curcumin greatly augmented Sprycel's effectiveness - but PCRU was elusive. But when I started increasing vitamin D (gradual increase over the last 1.5 years), from my near Rickets level, PCR suddenly dropped below detection. Cause and effect? Who knows.

 

Regardless - it's probably a good idea to get our vitamin D levels up and maintained at a very robust level. And not just for CML.

 

(p.s. Vitamin D is not a magic bullet - cure , or anything like that any more than Curcumin or other dietary agents.  It's just part of the arsenal that we have to build so that we attack as many pathways as possible when it comes to cancer.)


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 scuba

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Posted 01 March 2015 - 05:39 AM

I was near undetectable and two years later at 40. I assume I was still there at diagnosis since my vit D was 43 last week-- 1 month into diagnosis.

 

Gail - I'm not sure I follow. When were you diagnosed? 


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"


#31 Frogiegirl

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Posted 01 March 2015 - 10:35 AM

Is vitamin D a level that shows up on our cbc panel? or a whole separate test you have to request? I had them test my iron and do a cbc panel when I was diagnosed....the black bruising was insane. I am however copying you scuba....thank you for posting the amount of d3 you are taking :D just added them to my pill organizer......  Yes I just said pill organizer.


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.


#32 scuba

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Posted 01 March 2015 - 11:34 AM

Vitamin levels are not normally taken as part of CBC blood tests. You have to request it specifically.

Also - you can overdose on vitamin D - so it is vital that you know your level first before taking supplements. Having said that, it's pretty hard to overdose on 10,000 I.U's of vitamin D in winter. Do an internet search on vitamin D supplementation. 

 

I did not know I was vitamin D deficient until I went to a primary care physician who specializes in "wellness" and physical fitness. I haven't been to a doctor like him in many man years (never been "sick" enough). I never thought it necessary to "monitor" stuff. Just eat right and get exercise - right? Well apparently I wasn't eating right - and exercise comes and goes. He ordered the blood tests that included vitamin D, homocysteine, c-reactive protein, PSA (for Prostate, I have one of those), as well as the typical blood and lipid panel. Boy was he surprised when he saw my blood numbers (my new normal, but shocked him). I told him not to be concerned about the blood numbers, that my Oncologist feels they are fine for someone taking Sprycel. I never felt they were fine, however.

 

As long a we avoid the sun - we will be vitamin D deficient. You can not get enough of it in food unless you love Cod liver oil. 

 

I don't know if getting my vitamin D level up will add to my ability to defend against CML. CML is a cancer after all - but it has improved my "wellness". I feel better, have more energy and haven't been sick once. So taking vitamin D is just plain good for you regradless. Whether it can effect CML - we'll see. 


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"


#33 Gail's

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Posted 01 March 2015 - 12:39 PM

Scuba, sorry for confusion. Here goes:

About 5 years ago, Vit D near undetectable
1 year later it was 40 and has maintained at that level since.
1 month ago dx of CML. Vit D 3 days ago was 43.

As you know, onset of CML is suspected to be years in the making and most of us don't know when it began. In review of past CBCs, my WBC has been high (about double to triple my usual wbcs) for almost 2 years although crazy jump noted 1/20/14.

A further factor in blood cancers is abnormal death of the type of cancer cells called apoptosis. There is a normal life span of healthy cells then they die off and a new batch takes over. In cancer, apoptosis is disrupted. The cancerous cells are not only abnormal, but they live longer so they build up to higher and higher levels. My mom's oncologist told us adequate Vit D levels keep apoptosis at normal levels so the build up is slowed down. My mom's B cells advanced causing lymphatic tumors to grow and enlarge. The assumption was if her low levels of Vit D were increased, her tumors would shrink or grow more slowly. She was given targeted drugs to kill off the cancerous cells much the same guns TKIs use in CML. It does not, however, prevent the cancerous cells that survive from having prolonged life span since it's a genetic aberration. Thus cancer cells will not die off at the same rate as healthy cells no matter how many of them exist. Unless, as is presumed, Vit D prevents that genetic foul up of apoptosis.

Very interesting stuff. I 100% agree that a healthy immune system is critical in fighting off cancer and other diseases. It is not able, though, to stop progression once the cancerous cells have a strong hold on the replacement of healthy cells. I suspect that the lag time in rebuilding levels of healthy cells once cancerous cells are reduced or wiped corresponds to the length of normal cell maturation. In other words, there's a rate of growth to maturity of normal cells, and once that is achieved the normal cells get back to normal levels.

You probably know this stuff better than I do, but I like to talk about it to remind myself.
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

#34 scuba

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Posted 02 March 2015 - 06:14 PM

Hey Scuba,

 

I was doing some research earlier today on Vitamin D3 dosage and found 2 things of Interest, the higher your muscle mass the more you should take, and that one study recommended 5000 IU per day until levels have improved and then 2000 IU maintenance.

 

Do you have any information to contradict this?

 

Cheers

 

Mr. Tee,

 

I am taking 10,000 IU's per day (winter) and 5,000 IU's per day summer. I test twice a year and I am still not up to the level I want to be at for CML purposes. Right now I am about 60 ng/ml. I want to get to 80 ng/ml. I read that taking vitamin K2 along with D3 causes your body to use more D3 - so I may have to increase my dose some more. When I go diving, I will no longer wear a wet suit while on the boat so I get plenty of sun. On those occassions, I won't take any vitamin D. I'll just let the sun do its thing. Because I am no longer taking Sprycel, I will be less concerned about sunburn (I burned easier with TKI's). If I have to go back on Sprycel, I'll have to cover up in the sun and just take supplements.

 

Measuring D via blood test is the only way to know how much to take. I suspect, however, that current recommendations (5,000, 2000, etc.) are too low for CML. They are more designed to keep people in the 30 - 50 ng/ml range. We need much more without overdoing it in the toxic range (over 100 ng/ml).

 

Here is a web site that is devoted all things vitamin D:

http://www.vitamindw...om/VitaminDWiki

 

If you do bulk up on vitamin D - make sure you take magnesium with it. 

http://www.easy-immu...-vitamin-d.html

 

I had some nasty headaches develop over the last few weeks (thinking it was my lack of wine since I gave up wine for Lent) - but they went away when I started to take my Magnesium at the same time as vitamin D.


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 snowboots

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Posted 02 March 2015 - 06:57 PM

Appt. with my hematologist tomorrow for results of my bone marrow biopsy so no official diagnosis yet. Very interesting thread here - I am going to ask for a Vit. D test before starting any meds. Then I'll have a baseline and let you know the results.



#36 Billie Murawski

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Posted 03 March 2015 - 12:34 AM

Mr. Tee,

 

I am taking 10,000 IU's per day (winter) and 5,000 IU's per day summer. I test twice a year and I am still not up to the level I want to be at for CML purposes. Right now I am about 60 ng/ml. I want to get to 80 ng/ml. I read that taking vitamin K2 along with D3 causes your body to use more D3 - so I may have to increase my dose some more. When I go diving, I will no longer wear a wet suit while on the boat so I get plenty of sun. On those occassions, I won't take any vitamin D. I'll just let the sun do its thing. Because I am no longer taking Sprycel, I will be less concerned about sunburn (I burned easier with TKI's). If I have to go back on Sprycel, I'll have to cover up in the sun and just take supplements.

 

Measuring D via blood test is the only way to know how much to take. I suspect, however, that current recommendations (5,000, 2000, etc.) are too low for CML. They are more designed to keep people in the 30 - 50 ng/ml range. We need much more without overdoing it in the toxic range (over 100 ng/ml).

 

Here is a web site that is devoted all things vitamin D:

http://www.vitamindw...om/VitaminDWiki

 

If you do bulk up on vitamin D - make sure you take magnesium with it. 

http://www.easy-immu...-vitamin-d.html

 

I had some nasty headaches develop over the last few weeks (thinking it was my lack of wine since I gave up wine for Lent) - but they went away when I started to take my Magnesium at the same time as vitamin D.

I used to give up chocolate for Lent but my BD is March 11 and every year someone would make me a chocolate cake or some incredible homemade dessert all chocolate.



#37 scuba

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Posted 03 March 2015 - 05:40 AM

I used to give up chocolate for Lent but my BD is March 11 and every year someone would make me a chocolate cake or some incredible homemade dessert all chocolate.

 

Billie - Lent is not observed on Sundays during Lent and a couple of special days (March 19,25). The goal is to observe for 40 days. And you get 40 days out of the total 46 calendar days if you exclude Sundays and the special days. Also - Lent ends at Sundown, Thursday before Easter. My wife and I will trade days (i.e. cheat with purpose). If a special event where we have to have a toast or something, then I'll abstain from wine on Sunday as a make up day. Hopefully - no one is watching - but I still get the 40 days in. It's our little tradition.


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"


#38 lsburris

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Posted 03 March 2015 - 01:25 PM

Vitamin D at dx was 25.2



#39 scuba

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Posted 03 March 2015 - 02:08 PM

Vitamin D at dx was 25.2

 

... and the trend continues. 25 is below normal. I am working to get my level up to about 75-80.

It is this range that is believed to be therapeutic. 


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 snowboots

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Posted 02 April 2015 - 03:31 PM

Finally after 3 months I was able to talk my GP into a 25(OH)D test after my onc refused to order one. As suspected from reading here, my vitamin D level is 11!  Doing a little research on dosage before I start a regimen along with K2. Already spoke to the onc about supplementation. He says it won't do any good, but if it makes me feel like I'm doing something positive to go ahead...gosh, there should be a doctor out there who is not so black and white about stuff and willing to work with us a little. I am a true believer that you need to be your own health advocate. Thank God for the internet!

I am 3 weeks into Gleevec, so don't know how much that affected the result.






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