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MDS Myelodysplastic syndromes

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  #1  
Old Sat Aug 20, 2011, 12:57 PM
Birgitta-A Birgitta-A is offline
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Edinburgh 2011 Oral presentations

Hi All,
Now many of the oral presentations from the MDS Congress in Edinburgh 2011 are available. You can for example look at Sekeres talking about combination therapy. You have to register.
http://www.multiwebcast.com/mds/2011/11th
Kind regards
Birgitta-A
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  #2  
Old Sun Aug 21, 2011, 02:20 AM
cathybee1 cathybee1 is offline
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Thank you Birgitta for the link. When I went to register, it required I list my affiliation with the medical profession. I had to laugh when I realized the closest match was "medical student."
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #3  
Old Wed Aug 24, 2011, 05:37 PM
akita akita is offline
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Thank you very much, dear Birgitta, for the information. This is precious.

I also registrated as "medical writer". Isn`t that right, that we are watching the talks and studying the slides/studies for medical purposes?

Also i watched the talk of Sekeres on combination therapy and want to communicate it to MDS-patients i know. The slides origin from studies/articles which are worth extra reading..

Actually i read much concerning Vitamin B12. There is a korean study recently published having found out that patients who had been diagnosed with MDS (RA, RSMD) responded to vitamin B12 substitution and the cytopenias disappeared. I could copy this study from our Viennese Library (did not want to buy it from the web). But then i found a comment which was made to it,which i can read in Vienna only from beginning of November in paper form, because i also do not want to buy it. It seems interesting. Too expensive to me to buy all these articles... Perhaps you have got the access now.

It is:

Acta Haematol. 2011;125(4):198-201. Epub 2011 Jan 20.
Vitamin B(12)-responsive pancytopenia mimicking myelodysplastic syndrome.
http://www.ncbi.nlm.nih.gov/pubmed/21252496

Comment:
http://www.ncbi.nlm.nih.gov/pubmed/21487214

Kind regards, Margarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #4  
Old Thu Aug 25, 2011, 04:26 AM
Birgitta-A Birgitta-A is offline
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B12

Hi Margarete,
Good that you found the info from the Edinburgh Congress interesting!

You know info about B12 defiency is very well known in contrast to info about copper deficiency. They both can mimic MDS. All patients with suspected MDS have their B12 controlled initially.

I have been taking B12 orally since dx though it was normal since both my parents received B12 injections. When my B12 was controlled 2009 it was more than 1100 when the normal value is 150-650.
Kind regards
Birgitta-A
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  #5  
Old Fri Aug 26, 2011, 09:54 AM
akita akita is offline
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Causes and early diagnosis of vitamin B12 deficiency.

Hi Birgitta,

the newer literatur reveals that there have been made mistakes in diagnosing
Vitamin B12 deficiency.

The "normal" blood test for vitamin b12, is the cheapest,but not able to identify the active component of Vit B12, so that it does not detect if this lacks. A HoloTC-Test should be done first in the screening of risk groups, which shows early when the vitb12 stores in organs and body-cells become empty. Also the lower reverence levels for the "normal test" are too low. With a minimum of 200 ng/l/nanograms/liter, = 148 pmol/l /picomol/liter)) you would be in the range.

Prof. Herrmann (and not only he but authors even 20 years ago) recommends a minimum of 400pmol/l (= 542ng/l)in a review from 2008 He is in my knowledge - most specialized professor for laboratory medicine, Prof.Dr. Wolfgang Herrmann. He also has written the B12 - chapter in the standard book "Labor and Diagnose", - even more scientifical. In our Viennese Library there are about 20 exemplaries from it for the students:

Causes and early diagnosis of vitamin B12 deficiency.
http://www.ncbi.nlm.nih.gov/pubmed/19623286
free fulltext, with algorithm for laboratory diagnosis

There is also existing a book on amazon "Could it be B12?" which has 2011 appeared in the 2nd edition with many citations and advices also for medical practicioners. For me it has become already a "must", because it gives an overview. Reports and reviews on pubmed are more specialized.

After having searched in this forum for B12 i am not convinced in some cases that the diagnosis has been done in the way described in both abovementioned publications.

In my case it was only done with the "normal" test on diagnosis in 9/2007, my values were 468pmol/l= 634,14ng/l . On January 2,2008, after three AML-chemothrapies, i organized the counts from a private laboratory: Only 107 pmol/l =144,98 ng/l This was too low. I showed to the doctors and got 2 shots of VitB1. Never again B12 was monitored.Actually my counts are about 256 pmol = 346,88 ng/l . Enough for the normal mesurement but too low for the new one. Also i have got a lot of neurological problems actually and want to try the Vit B12 supplementation.

Also I phoned yesterday to a University Professor from the Institute for Medical and Chemical Laboratory Diagnostics, sent him the article (and he was interested studying the problem).

Probably many patients are not diagnosed in time for vitb12 deficiency. Hopefully, that also in our city the special tests will be re-invented (there was no demand from the doctors so they stopped doing HoloTC some years ago... In the american book "could it be b12" it has been mentioned also in the 1st edition of 2005, also an UMMA test, which seems to be unknown here in Vienna..

This is my status of information

I think, with more than 1000 .... in your blood in most cases you will not suffer from Vit B12 deficiency.


Kind regards,

Margarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD

Last edited by akita : Sun Aug 28, 2011 at 10:31 AM.
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  #6  
Old Fri Aug 26, 2011, 11:03 AM
Marlene Marlene is offline
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Unfortunately, B12 blood serum test tends to be the only test many doctors run to check for B12 deficiency. As you have stated, this test is very unreliable. The low end of reference ranges in the USA is way too low. In Japan, 500 is considered to be the low end of normal. Also, if your body is not converting B12 to an usable form, your blood serum could be falsely elevated. There are doctors who will also check homocysteine and MMA levels. Elevations in these, indicate a B12 problem even if B12 serum is normal. Even then, this is still an inadequate method.

I think many have insufficient levels of B12 and it very easy to correct with oral supplementation. In addition, there are active forms which work better than the common cyno form found in most vitamins and the B12 injections.

Once you correct the deficiency, it can take quite a while for your body to repair things. And then, sometimes repair is not possible if the deficiency has been going on for too long. That doesn't mean it's not helpful for managing the disease. It's alway good to have your nutrition at optimal levels if you can.

Here's a link on B12. It was written back in 2003 but is still useful.
http://www.aafp.org/afp/2003/0301/p979.html
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Fri Aug 26, 2011, 11:25 AM
Birgitta-A Birgitta-A is offline
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B12

Hi Margarete and Marlene,
Thank you both for info about B12 ! In Sweden we are aware of that the methods for B12 testing can be unreliable and homocysteine is always controlled at the same time.
Kind regards
Birgitta-A
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