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MDS Myelodysplastic syndromes

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  #26  
Old Tue Feb 5, 2013, 02:06 PM
Lbrown Lbrown is offline
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That's great Tom. I would definitely stick to what you are doing!

Are you on any other meds?

Thanks,
Deb
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  #27  
Old Tue Feb 5, 2013, 08:10 PM
tom30 tom30 is offline
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Birgitta, best of luck with your new treatment, I hope it improves your condition. Knock on wood I hope the 2.5 is all i need today and I know that these numbers can bounce around without much rhyme or reason.
Deb, Well prior to yesterday I was on no medications, but I went to the doctor because I've been stressed out and not sleeping for the last month, usually I manage stress with exercise, meditation and that works but last march I developed tinnitus and it added a new layer of stress. So I'm trying Xanax .5mg to see if that can help me reset things. I actually started the meditation about 10 yrs ago after a 6 month bout of unexplained stomach issues and the doctor I was seeing said he had success in patients using that technique. He thought the issues were stress related somehow. Anyway it worked for me, I do think my stress levels kick off auto immune issues in my body.Since my hematologist brings up unexplained autoimmune conditions as a possible cause for my low wbc and platelets I try my best to manage stress but is a riddle I cannot seem to solve.
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #28  
Old Wed Feb 6, 2013, 01:40 PM
Lbrown Lbrown is offline
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Hi Tom,

I have had tinnitus for more than 20 years, it is very annoying. I think you're right about stress too, it is definitely not good for healing & staying well.

Deb
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  #29  
Old Thu Feb 7, 2013, 01:55 AM
Darice Darice is offline
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tinnitus

Tom
Interesting that I should read your post today . . . I may have an idea that could help your tinnitus. I like to do as much as I can health-wise with diet. About 6 months ago I got a water distiller . . . not crazy about tap water and bottled water is pretty inconsistent. Anyway, after we had been using it for a while my husband and I both realized that our tinnitus was either vastly improved or gone. Time passes . . . my husband (he's the one with tMDS) picked up the norovirus and wound up in the hospital for a week. I stayed with him pretty much 24/7 and got him home yesterday. Never gave much thought to it, but I was drinking hospital water . . . aware of the chlorine taste, of course, but I had other concerns. Just realized that the tinnitus is back. So, of course, today we are totally back on the distilled water. I'll try to remember to pay attention to how quickly it goes away. I also think it has improved the restless leg syndrome. Might be worth a try, and would certainly fit with your healthy diet.
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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  #30  
Old Fri Feb 8, 2013, 09:02 AM
tom30 tom30 is offline
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Hi Darice, Thanks I'll give that a try....
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #31  
Old Fri Feb 8, 2013, 11:01 AM
Darice Darice is offline
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Hi Tom
I hope you do try it and let me know what happens. I got up this morning with the realization that my tinnitus has really toned down or disappeared again . . . I usually "hear" it the most in the mornings when everything is quiet around me. Today . . . nothing. That would be two days of drinking only distilled water. I would guess it took longer the first time . . . don't know 'cause I was neither expecting nor watching for the change. I recently got a water quality TDS tester . . . it was inexpensive and I was interested . . . and my tap water tests 74-75 ppm and my distilled water 0 ppm.
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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  #32  
Old Fri Feb 8, 2013, 05:28 PM
tom30 tom30 is offline
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Hi, I'll have to do some research on that tester you use, my tinnitus started after a cold clogged my ears it was pretty sudden when it started. ENT doctor had me take mucinex and clartin for a while the fluid went away but the ringing remains. I currently use filtered water so I'll figure out a good source. Thank you for the advice...
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #33  
Old Fri Feb 8, 2013, 09:36 PM
Darice Darice is offline
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I found both the tester and the countertop distiller at Amazon, but I'm certain there are others that would work as well . . . these are just what I have . . . I think the tester was $12 and the distiller around $200 . . . the point is that it is somewhat affordable and has made a real difference to me. You can research water purity and really scare yourself . . . but it's kinda that way with a lot of what we eat and drink . . . and I think it really does contribute to our health issues.

Good luck to you
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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  #34  
Old Thu Mar 21, 2013, 03:33 PM
tom30 tom30 is offline
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Still on the D3/K2... I had blood work today and the numbers are stable wbc3.2,rbc4.5,hgb16.3,mcv99.6,plt92... I'll stick with what I'm doing for now. Since starting the d3/k2 and Paleo diet I can say I'm satisfied with the last 3 blood tests hopefully they stabilize or improve from here.
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #35  
Old Thu Mar 21, 2013, 03:48 PM
Birgitta-A Birgitta-A is offline
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D3/K2

Hi Tom,
I have increased hemolysis (my red blood cells burst much too early) so I am only taking Thalidomide + Prednisone now. Thalidomide is incresed from 4 caps 50mg/week to 6 caps/week and Prednisone from 5mg/day to 30mg/day. My HGB is holding now. Hope my neutrophils will hold too.

I don't think the D3/K2 had anything to do with the hemolysis but the drugs didn't increase my counts so I am not going to continue with them.

Kind regards
Birgitta-A
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  #36  
Old Thu Mar 21, 2013, 08:54 PM
tom30 tom30 is offline
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Hi Birgitta, I'm cautious on trying new therapy even when its over the counter vitamins or supplements you can never tell if something could make the situation worse. I did start a new diet around the same time as the d3/k2 so they may not be doing anything for me either. I hope your numbers continue to hold....
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #37  
Old Mon Oct 24, 2016, 05:10 AM
Meri T. Meri T. is offline
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vitamin k2/D

I live in Japan. My hematologist prescribed Vitamin K2 and D when my ANC dropped under 500, taken together with Itraconazole 1%, and Primoblan 5mg.

Vitamin K-2 15mg, Vitamin D (Rocaltrol) 0.25mg taken twice daily after meals.
A bit late in this thread, but hope this helps.

Meri
MDS RAEB1
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  #38  
Old Tue Oct 25, 2016, 07:51 PM
Cheryl C Cheryl C is offline
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Has it made a difference to your pathology results yet? Vit D3 alone has really improved my platelets.
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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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  #39  
Old Sun Oct 30, 2016, 03:22 PM
Ugo Ugo is offline
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K-2 and D3 Vitamin combo

I initially showed cytopenias 14 years ago. My hemotologist suggested it might just be me and my sustem. Assome time went by I told the MD that although I had had about wiyh anemis as a young boy (6 or 7) my CBC over the years always fel within the normal range. I insisted that we explore this further.

A BMB was performedand I was told that I had low risk MDS. This was 12 yeaars ago. Since that my RBC, Hemoglobin, Hematocrit, WBC and Platelets have always been somewhat belownormal and stayed within a range that was not any major problem.

A second BMB was performed 2 years ago and ny blasts were falling again into the low risk category.

Last week I sawmy Hematologist and ny CBC resuts surprised me. My RBC, Hemogloibin, Hematocrit all were within the nromal range and my Platelets and WBC although below normal stil had raised up somewhat. I was elated.

Today I decided to begin to eat a Kale salad for lunch. This was prfompted by a friend who was a recent visitor and who eats Kale on a daily basis.

Then after my Kale sald lunch I decided to visit this site and discovered this topic. I will purchase K-2 andD-3 supplements, why not?

This is the most optimistic that I have felt in a long time. I do know that at 80 years of age my time is limited and I am not in charge to my schedued date of departure, but I never was. That is not something that I dwell in but I sure do feel good.
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  #40  
Old Mon Nov 7, 2016, 04:29 AM
Meri T. Meri T. is offline
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Quote:
Originally Posted by Cheryl C View Post
Has it made a difference to your pathology results yet? Vit D3 alone has really improved my platelets.
Cheryl,
Unfortunately the Itraconazole prescribed for fungus gave me a bout of diarrhea, so even after about a week of Vitamins K2/D, my platelets, and everything else, even my eGFR, has dropped.

Plts two weeks before taking vitamins was 61, today 60.
WBC two weeks before 2.3, today 1.9

I've been given some meds for my diarrhea, so maybe the vitamins will work this time. My next blood test is in 2 weeks, hopefully my platelets will rebound like yours.
Meri
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  #41  
Old Tue Nov 8, 2016, 10:02 AM
JamieM JamieM is offline
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Quote:
Originally Posted by Cheryl C View Post
Has it made a difference to your pathology results yet? Vit D3 alone has really improved my platelets.
Hi Cheryl,

How long were you taking the D3 before you seen an improvement in your platelets?
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  #42  
Old Sat Nov 12, 2016, 05:03 AM
Cheryl C Cheryl C is offline
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My recollection is that it was within the first 4-week period between blood tests.
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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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  #43  
Old Tue Nov 29, 2016, 08:04 PM
JamieM JamieM is offline
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Quote:
Originally Posted by Cheryl C View Post
My recollection is that it was within the first 4-week period between blood tests.
Thanks Cheryl. My Mum did 10 weeks on K2 (MK4) and D3 but unfortunately it doesn't seem to have helped her counts.

There is a great video regarding vitamin K for MDS and AML here if anyone is interested:

https://www.youtube.com/watch?v=nN8Y1Uho_wk
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