https://www.mnn.com/...-all-says-study
Vitamins .... pointless?
#1
Posted 31 December 2017 - 07:15 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
Posted 04 January 2018 - 08:21 AM
Surprised to see no comment about this from you Scuba. What do you think?
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
#3
Posted 04 January 2018 - 10:12 AM
I thought it was interesting when I came across it especially the observation that calcium + vitamin D did not help in bone health. As it turns out calcium is not in short supply in the food chain (western food chain). It is not a shortage of calcium that causes bone loss. And yes - vitamin D is very important in bone health, but vitamin D does not work alone. Adding more calcium and more vitamin D actually causes hardening of the arteries. The calcium gets deposited in the wrong place. And the kidneys get taxed trying to get rid of the excess (i.e. kidney damage). What's missing in many diets is vitamin K2. Most studies I have seen do not mention this. A few (NIH of all places) have looked at the role of K2 (aka menanquinone; MK-7) as vital to the biochemistry of calcium transport. Vitamin k2 uses vitamin D to move calcium from blood and soft tissue to bone. Without K2 - vitamin D + calcium is ineffective - and worse, actually can cause bone loss.
Where do you get K2?
Fermented foods are loaded with K2. Foods such as sauerkraut, kimchi, Natto. In fact, any food that is spoiling, but still edible creates K2. Our modern diet all but eliminated fermented foods (it's an acquired taste).
I take vitamin K2 + vitamin D3 together every day. My arterial stiffness as measured by both exercise induced blood pressure and ultrasound scan measuring carotid artery wall thickness was greatly reduced over several years (more than 75%!). I do not take calcium at all. I eat plenty of Gouda cheese (loaded with K2 and calcium) and any vegetable you eat has calcium. Calcium is what enables plants to stand up. We get plenty of calcium. Supplementing with calcium is not necessary for many people. K2 is not readily available so I do supplement with that vitamin. Vitamin D is only available in sufficient quantity from the sun - and we're taught not to go out in the sun or wear lots of sunscreen. Big mistake. I take vitamin D3 (which converts to D in the body) to compensate for lack of sun exposure.
Other than those two vitamins above, I tend to take minerals magnesium because it is also in short supply in our food chain. Everything else is probably a waste of money - B-vitamins for one. If you eat citrus, you don't need vitamin C supplements. If you eat carrots, you're getting plenty of vitamin A. There's plenty of vitamin E in food.
As the article pointed out everyone is different and some people may have a specific vitamin shortage they need. Supplementation probably makes sense for them. But only testing for deficiency will reveal what shortage.
One final observation not mentioned in the article is the role of "herbs" and other plant derived phytochemicals such as cinnamon, Turmeric (Curcumin) and quercetin and related. There is little data showing efficacy in improving health in a clinical trial setting, but there are studies which show some positive effect. In turmeric alone, there are examples of life saving help in blood cancer (which is why I take it). One such example was in the news recently (http://www.dailymail...ood-cancer.html). Another person with multiple myeloma swears by her use of Curcumin (https://margaret.healthblogs.org/). Much of the benefits cited for "herbs" are anecdotal so no medical institution is going to "prescribe" these remedies. You have to be your own advocate, however and decide for yourself. I am a believer in Curcumin. Not sure about Quercetin, but I do take it. I am trying Cinnamon because diabetes runs in my family although I am free of it. Cinnamon helps in blood sugar control.
I might point out that I never gave a hoot about any of this stuff (vitamins, minerals, etc.) until after I developed CML. CML had a way of focusing my mind on my overall health. If there is anything good about CML - it helped me to improve my health in so many other ways - especially my heart.
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"
#4
Posted 04 January 2018 - 02:04 PM
Now that's the Scuba we all know and love. I discussed K2 with my oncologist and he said he would not take it if he were me. His reasoning was that there is no clinical evidence that K2 hurts or helps so why take the chance that it might hurt.
I take D3 because of less sun exposure due to skin cancers caused by Tasigna (current levels are 59 - trying to get to 70); 1000 mg/ day Niacinamide at the advice of my dermatologist because there is clinical evidence that this reduces future skin cancers by 23%; 400 MG/day magnesium taurate mainly to help minimize benign premature atrial contractions also caused by Tasigna (not sure this is helping as the PAC's continue); 1,000 mcg B-12 at the suggestion of my PCP who says this will reduce future mouth sores also caused by Tasigna (no sores for about 4 months now) and Curcumin because of your advice. I am ready to add K2 particularly because of the studies about Tasigna and arterial thrombotic events, but am torn because of my oncologists remarks. He has allowed aggressive dose reduction for me so he is reasonable progressive.
My wife has osteoporosis and is taking calcium, magnesium and D3 on doctor's orders, but not K2 - should she also consider K2? She is also being treated 2x/year with an IM injection called Prolia
This stuff is all so confusing. Wish there was more money in supplements for bid pharma, then maybe they would sponsor more legitimate clinical trials.
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
#5
Posted 04 January 2018 - 03:09 PM
from CMLJAX, "I discussed K2 with my oncologist and he said he would not take it if he were me. His reasoning was that there is no clinical evidence that K2 hurts or helps so why take the chance that it might hurt."
Your oncologist is mis-informed and that's unfortunate. There is a lot of evidence on K2's benefits.
https://www.healthli...tion/vitamin-k2
But then again - lack of "clinical" evidence strikes again. There will not be a clinical trial on K2 likely ever. It is not a drug. It s not something a pharmaceutical company will spend a billion dollars on to put through a clinical trial because they can't patent the molecule. Vitamin K2 is cheap to produce and available from food. So your oncologist is limited in his thinking that only clinical evidence is required before efficacy is known.
Give the above linked article to your Oncologist and invite him to learn more. Better still - ask him to explain to you the biochemistry of calcium in the body. He likely doesn't know. And that's fine. Can't know everything - but he can learn if he is inclined.
There are a lot of studies on K2 and it's action is largely known (regarding calcium mobilization). Here is but one research article:
https://www.ncbi.nlm...les/PMC4052396/
Your wife taking calcium supplements is likely doing damage and adding rather than helping osteoporosis:
https://www.drweil.c...lement-dangers/
I would never take calcium supplements. No need to - there is plenty available in our food. What is important is understanding how calcium is used and moved around in the body.
It's actually pretty simple. Calcium is taken up in our intestines through the action of vitamin D. This is why vitamin D is important in getting calcium absorbed. Once in the blood, Calcium is regulated by the action of several proteins (enzymes) especially MGP (matrix GLA protein). MGP mobilizes calcium out of soft tissue and transport it to bone. Other vitamin K2 dependent proteins in bone then release the bound calcium into our bones. Vitamin K2 uses vitamin D to facilitate bone deposition. Without vitamin K2, vitamin D does nothing to help put calcium into bone.
https://www.ncbi.nlm...les/PMC4566462/
So it's easy to see that if you only force one part of the calcium system (i.e. take excess calcium and vitamin D) you create a worse problem because you are accumulating calcium into soft tissue with no way to get the increased calcium to the bone ( without K2). Vitamin D and K2 work TOGETHER to move calcium where it needs to go.
By the way - after I started taking vitamin K2 every day (200 mcg minimum) along with eating Japanese Natto (yum) - about a year later when I had a bone aspiration done, my bone density was very high and it took a "drill" to get through my bones whereas a year earlier, it was easy. I now have very hard bones. I wonder why ....
https://www.ncbi.nlm...pubmed/15320745
Your wife should consider taking vitamin K2. Waiting for a clinical trial to "confirm" will be never. She can be her own trial. I would eliminate calcium supplementation (but make sure to be eating calcium rich foods whether cheese and other dairy, etc.), take adequate vitamin D3 and couple with k2. In one year (takes time for all of this to work) - I would not be surprised to learn from you that her osteoporosis is reversed. Her osteoporosis doctor should know this and be able to advise accordingly. There may be other more clinical reasons for her osteoporosis (genetics plays a role) - but helping the chemistry of calcium in the body is at least a start in the right direction.
p.s.
Here is a study that just popped into my inbox just now:
https://www.news-med...-mortality.aspx
Edited by scuba, 04 January 2018 - 03:14 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"
#6
Posted 04 January 2018 - 04:04 PM
Thanks as always Scuba. My wife and I will try to digest (no pun intended) all of this and will let you know if we have more questions.
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
#7
Posted 04 January 2018 - 04:22 PM
Do an online search of vitamin K2, osteoporosis, vitamin D. There is a lot of information out there.
One key point. Vitamin K is not the same as vitamin K2. They are very different vitamins in how they act in the body. I wished "they" used a different letter. Vitamin K2 is also known as Menanquinone and is also known as MK-7. You may see reference to MK-4 which is not as good as MK-7 form.
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"
#8
Posted 04 January 2018 - 09:32 PM
MDA has studied curcumin on numerous leukaemia scenarios. I know of several who were sent to hospice and tried this protocol and lived years. See below
https://www.dailystr...atments-for-aml
Also, I completely agree with Scuba about osteoporosis and calcium supplements. I was mega dosing due to an osteo dx and suffering big time with severe muscle cramps. Scuba recommended I stop and cramps ended that day. I am following the protocol above and getting a dexi in a year. I'm a believer. Now I have to get me some Natto come on SHARTS
.
Blessings
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."
#9
Posted 04 January 2018 - 09:40 PM
My oncologist makes me take b12 (sublingual) every day, and it has a noticeable effect on my get-up-and-go. I never even heard of K2 before this thread. I eat sauerkraut at breakfast (its a Philadelphia thing; slaps the sleep out of you). I hope that gives me enough.
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
#10
Posted 04 January 2018 - 10:00 PM
"I eat sauerkraut at breakfast (its a Philadelphia thing; slaps the sleep out of you)."
It slaps more than that out of you. Can you spell S-H-A-R-T-S?
SHARTS = "Slaps Hemmorhoids And Rectal Tissues Silly"
#11
Posted 05 January 2018 - 06:45 AM
Sauerkraut at breakfast ..... Wow....
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
Posted 05 January 2018 - 11:54 AM
In turmeric alone, there are examples of life saving help in blood cancer (which is why I take it). One such example was in the news recently (http://www.dailymail...ood-cancer.html).
I found this and want to share with you. Details of the type of curcumin taken by Dieneke Ferguson
This is the description of her case: Case report "Long-term stabilisation of myeloma with curcumin"
#13
Posted 05 January 2018 - 12:56 PM
I was wondering what brand of curcumin this woman was taking?
I found this and want to share with you. Details of the type of curcumin taken by Dieneke Ferguson
This is the description of her case: Case report "Long-term stabilisation of myeloma with curcumin"
I take exactly that brand and have been do so for years.
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"
#14
Posted 05 January 2018 - 08:20 PM
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."
#15
Posted 06 January 2018 - 08:36 AM
Japanese Natto (fermented soybeans) is an acquired taste. The fermenting process removes much of the phytic acid (phytates) which are a problem when eating non-fermented soybeans. I never eat regular soybeans because of the phytates. But fermented soybeans in small quantity (typical Natto packet) are very good for you and have little phytates left. It's loaded with vitamin K2 and protein.
Natto is nutty in flavor but has a nasty smell. I smother it in mustard (the hot kind) and that helps a lot. After a time, I got used to it. No one in my family touches the stuff - so it/s always there waiting for me to open. I eat it for only one reason - it's loaded with vitamin K2.
Natto is sold frozen in most Asian food stores. I thaw a packet one at a time in the refrigerator a day before. One packet a day is enough for me.
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"
#16
Posted 06 January 2018 - 09:26 AM
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
#17
Posted 06 January 2018 - 10:24 AM
Youse people in Philly who eat cheesesteak wit whiz on it and sauerkraut are the best. Followed with ice cream and Jimmies!
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"
#18
Posted 08 January 2018 - 10:15 AM
Whiz on a real cheesesteak is an abomination that started sometime in the late 80's to early 90's, while we were not in the area. When we were kids you would not ever have seen an actual Philly sandwich with anything but provolone or the occasional LoL white american. Whiz was nothing but a cost cutter in both material and labor.
rct
#19
Posted 10 January 2018 - 06:25 AM
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#20
Posted 10 January 2018 - 12:35 PM
My doctor recommended magnesium for lower leg cramps. I started with the inexpensive supplements from CVS and had bad diarrhea. I recently started magnesium taurate (Thanks to Scuba's rec) and I am getting the benefits with little to no gastro issues.
DX 3/30/2016 WBC 484.2 FISH 95.3
took Hydrea 3/30-4/11
taking Sprycel 100 mg since 4/5
10 day break from Sprycel for platelet count of 12 4/26-5/8
7/07/2016 1.47% (IS)
9/30/16 BMB PCR .1259 switched to new onc
12/30/16 PCR .1569
4/7/17 PCR .0904 MMR
7/14/17 PCR .0520
12/1/17 PCR .0148
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