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MDS Myelodysplastic syndromes

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  #1  
Old Mon Oct 8, 2012, 11:49 PM
Neel Neel is offline
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help

my father's battle with MDS ended on 28/5/2012. he was diagnosed with MDS RAEB-II in Oct 2010.

Now call it a bad fate or the worst of the worst nigthmare comming true, recently on 26/09/2012, his CBC on 26/9/12 showed platelet count of 120, we thought it was an error, repeated the sample on 3/10/12 and th CBC report showed platelet count of 105. Shocked, though that might be due to side effects of drugs he was taking (Metformin, Dimicroin, Polybion, Evion, Contiflo Icon, Ginkocer). Stopped all drugs n 3/5/12. Repeated the CBC on 5/10/12 platelet count was 140. However took contiflo on 5/10/12 due to urine problem, but did not took any other medicine, Also took papaya leaf juice two times a day. Also took the numerous test ordered by Doc like dengue, HCV, HIV, ANA, ANTI Ds DNA etc. All test came negative. erepeated the CBC on 8/10/12 (today), Platelet count 95 ???. All other count are normal. Contaced oncologist, he is diagnosing it as ITP .

My question is can it be due to these drugs he is taking ?



Is it ITP ?

Can it be any other disease i.e MDS or lukemia ? (though Doc says no it cant be and says there is no need for Bone Marrow test and says you can go for Bone Marrow test if you like. I think it is due to the fact that whetther it is ITP or some bone marrow disease, at these counts it dosent make any diferrence as in any case the treatment will be wait and watch and thats why he is saying no need for bone marrow test. ) Am i Right ?

Can Only low platelet be due to MDS or Lukemia ? Particulalry when all other counts are ok his HB is 15 adn WBC is 6000 with no abnormality in perpherial smear.

Can it be heriditary ? and the time when it is happening ? He is only 44 yr old.


What to expect in furture if it is ITP ?

Can the count stay here or icnrease to normal level on their own from here ?

We are in shock and horrible state right now.

Kindly help

Regards,

Neel

P.S. My brother routine CBC count on June 2012 showed normal platelet count of 150, have been above 150000 all the time sicne we are checking i.e. last 10 years or so.
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Father age 64 diagnosed with MDS RAEB-2, with 15%-18% blasts in October 2010. Only had blood and platelet transfusions. Ayurvedic treatment which showed result for arnd 5 months. Started Tahlidomide 100 mg started on 22 nd April 2011. Revolade 50 mg started on 2 nd april 2012.
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  #2  
Old Tue Oct 9, 2012, 05:03 AM
Birgitta-A Birgitta-A is offline
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Platelets

Hi Neel,
How sad that your father lost his battle with MDS.

As far as I understand your brother's low platelet count can depend on the drugs he is taking. A lot of drugs can decrease platelets and/or increase bleeding risk: Here is a warning list http://www.pdsa.org/about-itp/warnings.html

The urine problem can be an infection and all infections can decrease counts.

As you have understood ITP is no cancer disease. You have to try to calm down and wait as the doctor adviced. Hopefully your brother's platelets will increase when he tries to avoid everything that can harm him. He will manage very well with a platelet count of 95.
Kind regards
Birgitta-A
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  #3  
Old Tue Oct 9, 2012, 08:31 AM
Neel Neel is offline
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can mds or lukemia only have low platelet as symptom

thanx brig, what i wanted to know is that whether the diagnosis is correct for itp ? Can person with mds or lukemia only have low platelets as symtoms, rest all the blood counts normal and no abnormalities in blood picture ?
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Father age 64 diagnosed with MDS RAEB-2, with 15%-18% blasts in October 2010. Only had blood and platelet transfusions. Ayurvedic treatment which showed result for arnd 5 months. Started Tahlidomide 100 mg started on 22 nd April 2011. Revolade 50 mg started on 2 nd april 2012.
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  #4  
Old Tue Oct 9, 2012, 01:58 PM
DanL DanL is offline
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Neel,

Very sorry about the loss of your father. As to your questions, it is possible to have MDS with just low platelets. My initial diagnosis was ITP because my peripheral smear was clean, just reduced platelets. HGB was 14.5 and whites were 6500. We did all of the additional tests like your brother, but the answer was ITP until a bone marrow biopsy was completed. When the BMB was done, there was mild dysplasia in the megakaryocytes, other lines were normal.

I am 38 years old now, My diagnosis has changed from RT (refractory thrombocytopenia) to RCMD with fibrosis, as there is now mild dysplasia in reds and platelets, but only the platelets are down substantially.

I would suggest getting the BMB done just to rule out an emergent disease like mine. My doctor did not think that it was even a remote possibility that I had MDS, so i was treated for ITP with Rituxan, Prednison, and Imuran. The result is that i have avascular necrosis in the hips, shoulders and feet and developed PCP in 2010 when i was getting the treatment. The treatments of course did not help for MDS, platelets stayed around 20k to 30k throughout.

Hope this helps.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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