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MDS Myelodysplastic syndromes

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  #1  
Old Thu Feb 27, 2014, 11:37 PM
aussie danielle aussie danielle is offline
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Location: bundaberg, queensland, australia
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Vitamin K2 andor Vitamin D3

Hi All,can anyone give me some feedback please on whether ,they have tried, or had experience somehow ,with these two vitamins, in the treatment of MDS I have read it on the net in relationto a Japanese study in 2000 in a med Journal. but would like to know, if anyone has tried it, or heard of someone who has??thanks heaps
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  #2  
Old Fri Feb 28, 2014, 04:46 AM
Cheryl C Cheryl C is offline
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There was some discussion on this a while back on this forum. If you do a search on Vitamin K2 and/or D3 you should find some interesting posts.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #3  
Old Fri Feb 28, 2014, 07:14 AM
Birgitta-A Birgitta-A is offline
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Location: Stockholm, Sweden
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Vitamin K2 and D3

Hi Danielle,
I tried these vitamins together Oct 2012 - Feb 2013 without effect.
Kind regards
Birgitta-A
75 yo dx MDS Interm-1 2006. Good response when I first took Thalidomide 2010 - 2013 and since July 2013 Revlimid.
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  #4  
Old Fri Feb 28, 2014, 10:14 PM
aussie danielle aussie danielle is offline
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Location: bundaberg, queensland, australia
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thanks re viamink2and D3

thanks ladies for the replies im not sure I know where to type in, to find posts Cheryl, can you give me a bit of a hand with it please?? I wasnt told anything about my bone marrow tests other than I was low grade MDS.I see the Dr. soon so I will ask for a print out of the results, although I feel as chirley said, I might need a new BM done, as I was diagnosed some 2and a 1/2 years ago. thanks ladies(and gentlemen) I am so glad your there this site is great.
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  #5  
Old Fri Feb 28, 2014, 11:54 PM
Neil Cuadra Neil Cuadra is offline
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Location: Los Angeles, California
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aussie danielle,

There are three ways to find posts in the forums:
  1. Search for posts by a particular user, for example posts by Cheryl C.

    To do this, click on her name (anywhere you see it underlined) and a menu will pop up. Choose Find all posts by Cheryl C.

  2. Search for posts with particular words.

    To do this, click Search at the top of the page to get the search pop-up box. Type in a search and click Go, or click on Advanced Search for the full Search page with more options.

  3. Browse through the forums looking for threads of interest.

    To do this, start at the main forum page, click any forum, e.g., MDS, click on any thread title, and read the posts.
The FAQ and the Quick Guide to the Forums have more forum tips.
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  #6  
Old Sat Mar 1, 2014, 11:37 AM
Mseth Mseth is offline
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Join Date: Sep 2013
Location: New Delhi, India
Posts: 186
Vit K2/D3

Hi Danielle,

My mother has been on Vitk2 + D3 since Sep 2013, no improvement yet on hemoglobin (her other counts have been stable). She started with the recommended dose, as per the Japanese study, at 45 mg/day, but has now reduced it to 30 mg/day. Since she was deficient in Vit D, she takes 3,000 i.u per day.

All the best!!
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #7  
Old Sat Mar 1, 2014, 01:15 PM
sbk007 sbk007 is offline
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Join Date: Apr 2013
Location: NY
Posts: 322
I've had 2 blood tests that showed Vit D deficiency but my counts were fine.
Same thing with B12 came up deficient but counts were fine. That said I started taking 1000 IU of Vitamin D and my platelets went from 80(on diagnosis) to 130 in a month and never went back. My Heme said it was possible but not probable whatever that means and if you think about it makes no sense that it would work that fast but..I take the vit d now.
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  #8  
Old Wed Apr 2, 2014, 08:26 AM
Tominftl Tominftl is offline
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Join Date: Jul 2013
Location: Fort Lauderdale, FL
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Essaic tea?

Has anyone tried this tea? Any results?
I am doing my 7 th round of dacogen. My blast count is down to 2 percent from a high of 10 percent. The doctors don't want to rush into transplant although I have a couple of 10/10 donors waiting. Anyone have any thoughts on maybe clearing this up with Essaic tea so I can skip this whole transplant?
I do take these vitamins together and haven't noticed any changes.
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Tom divorced and retired. Diagnosed in 2013. 65 year old male, on dacogen IV every month until Doctors decide to do the transplant. I have donors, 10/10, unrelated.
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