Jump to content


Photo

Vitamins?


  • Please log in to reply
67 replies to this topic

#41 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 25 March 2015 - 04:00 PM

Hi Teds - when did you start eating Natto?

Hi Scubes!  (I'll use your new name)

 

I have been eating it for years.  However, not consistently.  A major issue I have with it is that they package it in polystyrene (styrofoam) which is totally toxic (also bad for the enviroment).  It is hard to find in other packaging.  I just had a sushi roll with natto.  It was delicious!  I have a couple of questions for you.  I think you mentioned a new type of curcumin that is the most bioavailable, and a person doesn't have to take 7-8 capsules (choke :blink: ).  Could you send me a link?  Also, what kind of vitamin D suppliment and how much is best absorbed by the body?  I have no idea what my level was at dx, but it was prob. zero since I live in the land of eternal winter. 

 

Take care!  Be well!

 

Teds



#42 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 25 March 2015 - 05:31 PM

Tedsey, I love you to death,but please never invite me to your house for dinner.        Billie



#43 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 25 March 2015 - 07:58 PM

Sorry scoobs the name is sticking:)

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.


#44 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 25 March 2015 - 08:22 PM

Sorry scoobs the name is sticking:)

 

This is not good .... not good at all.

When I Scuba Dive - I hunt Frogs - so be careful...be very careful.


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"


#45 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 25 March 2015 - 10:22 PM

RUT ROW scoobs.....frog legs can be poisiness! Lol

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.


#46 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 25 March 2015 - 10:28 PM

RUT ROW scoobs.....frog legs can be poisiness! Lol

 

382925218_60b510f9e6.jpg


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"


#47 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 25 March 2015 - 10:50 PM

Busa,

 I saw this on CSI so it has to be true if you smile it stops the gag reflex, It works, when I brush my tongue I gag so I just look in the mirror and smile I usually have toothpaste and slobber all over my face but I'm not gagging anymore! :D



#48 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 26 March 2015 - 04:25 PM

We recommended hanging your tongue out as far as it would go, then panting like a dog for nausea. Billie, with bug eyes in the morning you could look really, really crazy by alternating big smiles with panting. Would have best effect if you left the toothpaste and slobber on your face.
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

#49 Antilogical

Antilogical

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • LocationPittsburgh, PA

Posted 26 March 2015 - 05:20 PM

Busa,

 I saw this on CSI so it has to be true if you smile it stops the gag reflex, It works, when I brush my tongue I gag so I just look in the mirror and smile I usually have toothpaste and slobber all over my face but I'm not gagging anymore! :D

Now I'm gagging.  You've seen owls gag, right?  Not pretty.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#50 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 17 April 2015 - 07:24 PM


There is some background on vitamin D and the RDA being based on bad statistical calculations

http://www.ncbi.nlm....cles/PMC4210929

 

"The public health and clinical implications of the miscalculated RDA for vitamin D are serious."

 

Just as I have previously said.  Good reference, Vitamin T.



#51 JPD

JPD

    Advanced Member

  • Members
  • PipPipPip
  • 258 posts

Posted 17 April 2015 - 08:13 PM

Hi,

 

My daughter is taking stats and they use this as an example of how not to do statistics

There is some background on vitamin D and the RDA being based on bad statistical calculations

http://www.ncbi.nlm....cles/PMC4210929

Geezus, I read about half of that when my brain fell out


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#52 carrie

carrie

    Advanced Member

  • Members
  • PipPipPip
  • 72 posts
  • LocationShow Low, Arizona

Posted 20 April 2015 - 03:28 PM

Scuba,

Just curious.

How long were you on a TKI, which one, and so your Onc finally said you could stop the meds?

Lucky you.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#53 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 20 April 2015 - 03:42 PM

Scuba,

Just curious.

How long were you on a TKI, which one, and so your Onc finally said you could stop the meds?

Lucky you.

 

Carrie - I need to be clear. My Onc. never said I could stop the meds. In fact, he was against it and told me that I should not stop. He wanted me to continue taking 20mg. Sprycel every day for at least two more years. I was diagnosed in May 2010 and put on Gleevec. Gleevec did not work for me. I was put on low dose Sprycel and became undetected around September 2014. I stopped altogether in February 2015.

 

I made the decision to stop because I believe I may be able to remain disease free naturally (nutrition and knowledge based). My doctor is watching the result and assisting me with monthly tests to track progress. He is curious, but not hopeful that it will work. But he did put me in a "20%" group that might be able to stay off meds and remain low detectable or "undetected" for an extended period of time - perhaps indefinitely. 

 

I don't fear CML so I had no problem taking the risk. I don't feel there is any risk. If this doesn't work (i.e. PCR > 0.05) then I'll just go back on 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"


#54 Lisa Lisa

Lisa Lisa

    Advanced Member

  • Members
  • PipPipPip
  • 62 posts
  • LocationNew York

Posted 20 April 2015 - 11:00 PM

Scuba,
Did your doc ever mention a drug interaction between Sprycel and Magnesium Citrate?

Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15

     22%  5/15     0.13% 6/15   PCRU attained 9/15

Initial dose Sprycel 100 mg 3/15  Lowered 80 mg 5/15   Lowered 50 mg 1/16

Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage

Sprycel: Currently 50 mg per day - taken 10 pm

 


#55 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 21 April 2015 - 07:22 AM

Scuba,
Did your doc ever mention a drug interaction between Sprycel and Magnesium Citrate?

 

No.


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"


#56 mikefromillinois

mikefromillinois

    Advanced Member

  • Members
  • PipPipPip
  • 93 posts

Posted 21 April 2015 - 09:21 AM

A different angle on Vitamins:

 

http://www.mirror.co...ive-you-5556383



#57 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 21 April 2015 - 10:01 AM

A different angle on Vitamins:

 

http://www.mirror.co...ive-you-5556383

 

Vitamin supplements, in general, are not necessary and as the article points out - in excess can be dangerous. 

 

The vitamins that the article cites as a problem when taken in supplement form include E, folic acid and beta-carotene. This has been known for some time. The key here is to get these vitamins from food and avoid supplements unless a doctor notes a deficiency.

 

But note three vitamins missing from the article ... vitamin D, k2, and C. 

 

We do not get enough vitamin D from food. Nature intended for us to manufacture our own vitamin D (as Cholecalciferol, vitamin D3) from the sun. Vitamin D is vital for immune support - especially Nk and T-cells which fight cancer and disease (such as flu and colds). Vitamin D is vital for skin and bone health. I take enough vitamin D (as a D3 supplement) to get my level above 50 - preferably around 70 ng/ml. Noon, clear sky sun exposure at 30 degrees N. latitude will provide 10,000 IU's of vitamin D3 equivalent in 30 minutes. Most of us do not have the time of day to do that. So I take a supplement. Last week when I was in the Bahamas, I took no vitamin D3. And I wore no sunscreen. 

 

Vitamin K2 is also produced by our bodies in the gut by bacteria associated with fermented (i.e. decaying) food. No doubt our ancestors, like our dogs and cats, ate stuff that was not refrigerated or cooked and found in not so pleasant places. In other words, we ate what the land produced and much of that "food" had a ton of bacteria in it. Bacteria in our gut processes food in a way that produces copious amounts of vitamin K2. Vitamin K2 is vital for arterial and bone health. It prevents osteoporosis in women (when there is enough vitamin D around) and arterial calcification in men (when enough D is around). Vitamin K2 is best obtained from fermented foods today such as Natto, Gouda and other hard cheeses. I do take a supplement (menaquinone MK-7 also known as K2) when I am away from Natto. 300 mcg is needed for arterial health. And for blood disorders (http://www.mdsbeacon...k-mds-patients/), vitamin D3 plus k2 are a powerful combo. Unless you are out in the sun a lot and eat decaying food - you need to supplement.

 

Vitamin C is a strong anti-oxidant and is generally not needed in supplement form. If you eat plenty of citrus and veggies, in general, you are getting plenty of vitamin C. I do take a supplement (1 gram) per day when I don't have citrus around to take.

 

Magnesium is not a vitamin and not mentioned in the article. But magnesium is vital for heartbeat health as well as used with vitamin D to do what vitamin D does. In other words, higher levels of vitamin D (either by sunshine or supplement) use up your magnesium faster. Low magnesium can lead to sleep problems and heart beat irregularities (tachycardia). Almonds, nuts as well as your fruit and veggies provide Magnesium. The problem is that our soil is depleted in this mineral due to over farming of the land (http://www.ancient-m...ources/dietary/). Again - our ancestors did not have access to Industrial scale farms so they had plenty of magnesium. We don't. So I supplement Magnesium (relatively recently I started). I take 400 mg of Magnesium Taurate per day on average. I sleep much better once I started this. 


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"


#58 carrie

carrie

    Advanced Member

  • Members
  • PipPipPip
  • 72 posts
  • LocationShow Low, Arizona

Posted 21 April 2015 - 01:27 PM

Carrie - I need to be clear. My Onc. never said I could stop the meds. In fact, he was against it and told me that I should not stop. He wanted me to continue taking 20mg. Sprycel every day for at least two more years. I was diagnosed in May 2010 and put on Gleevec. Gleevec did not work for me. I was put on low dose Sprycel and became undetected around September 2014. I stopped altogether in February 2015.

 

I made the decision to stop because I believe I may be able to remain disease free naturally (nutrition and knowledge based). My doctor is watching the result and assisting me with monthly tests to track progress. He is curious, but not hopeful that it will work. But he did put me in a "20%" group that might be able to stay off meds and remain low detectable or "undetected" for an extended period of time - perhaps indefinitely. 

 

I don't fear CML so I had no problem taking the risk. I don't feel there is any risk. If this doesn't work (i.e. PCR > 0.05) then I'll just go back on Sprycel. 

I have been on Gleevec for 8 years. I have hoovered near 0 (but up and down) for those 8 years.  Now I am 3.449 on my BCR_ABL PCR blood test so one more blood test on May 1st and if my numbers are still high, he will  switch to another chemo. I would love to be able to quit the next chemo after awhile. I don't like putting chemo into my body. You know, I have gone through a series of eating right and then not eating right at all. I have to wonder if that is why my numbers have gone up and down. I have been a roller coaster with my numbers.  Thanks for all of the information about vitamins. You have encouraged me to start K2 and C. I am already taking D3. Maybe one day I can be chemo free also.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#59 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 21 April 2015 - 01:35 PM

I have been on Gleevec for 8 years. I have hoovered near 0 (but up and down) for those 8 years.  Now I am 3.449 on my BCR_ABL PCR blood test so one more blood test on May 1st and if my numbers are still high, he will  switch to another chemo. I would love to be able to quit the next chemo after awhile. I don't like putting chemo into my body. You know, I have gone through a series of eating right and then not eating right at all. I have to wonder if that is why my numbers have gone up and down. I have been a roller coaster with my numbers.  Thanks for all of the information about vitamins. You have encouraged me to start K2 and C. I am already taking D3. Maybe one day I can be chemo free also.

 

Seems like a new bcr-abl clone may be expanding. Anything above 0.1 is a concern. 

How much D3 do you take and what is your vitamin D level currently?


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"


#60 carrie

carrie

    Advanced Member

  • Members
  • PipPipPip
  • 72 posts
  • LocationShow Low, Arizona

Posted 21 April 2015 - 02:58 PM

Seems like a new bcr-abl clone may be expanding. Anything above 0.1 is a concern. 

How much D3 do you take and what is your vitamin D level currently?

I am not sure of my level. I do remember when I went to my regular doctor about a year ago she said that I was low.

I am taking one pill a day. It says Vitamin D3 1000 IU   250%

I just started taking B2, B6, and B12, and a magnesium daily also.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users