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PNH Paroxysmal nocturnal hemoglobinuria

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Old Sat Feb 22, 2014, 11:17 AM
TLL414 TLL414 is offline
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Join Date: Feb 2014
Location: Wellesley, MA
Posts: 5
Newly dx with PNH

Hi... my name is Tom and I have been diagnosed with PNH. No apparent symptoms' yet other c/o fatigue/tiredness. I have had just under the low range in my blood tests results for several years so my primary care doctor wasn't too concerned... but my wife was. She (my wife) requested that I see a Hem/Onc doctor because she felt that (she works in medicine) 'if a woman has slight anemia, doctor's are not too concerned... but if a man has any anemia, it should be worked up, and not disregarded."

My LDH has been high 800-1,200 and I recently received the following test results. Can this information tell me what my clone size is? I know nothing of biology!

Paroxysmal Nocturnal Hemoglobinuria and related Disorders by Flow Cytometry. Cytometry part B

POPULATION(S) GATED:
Erythrocytes/Granulocytes/Monocytes
RBCS:
Type I: Normal CD59 level. --- 76.07%
Type II: Partial CD59 deficiency --- 0.08%
Type III: Complete CD59 deficiency --- 23.83%

GRANULOCYTES:
FLAER/CD24 deficiency --- 28.12%

MONOCYTES:
FLAER/CD14 deficiency --- 55.83%
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Old Sun Feb 23, 2014, 06:51 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 811
BMB reports

This site is quite technical but it does give some explanations about the CD markers and their meanings: http://www.pathologyoutlines.com/top...rkerscd13.html
Wikipedia also has some explanations: http://en.wikipedia.org/wiki/List_of...ifferentiation

Hope this helps a little bit - there's a lot to learn with BMB reports and if anyone has found a good site which explains all the various aspects, I would be grateful too.
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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. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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Old Sun Feb 23, 2014, 06:14 PM
NLJabbari NLJabbari is offline
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You have a very smart wife
These are a couple of good places to start. Hope this helps...

AAMDS (About PNH)
http://www.aamds.org/about/pnh

Treating PNH in 2013 and Beyond
https://client.blueskybroadcast.com/...AMDSIF_072513/
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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Old Thu Sep 11, 2014, 01:07 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
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You ddnt say how old you are. I believe that PNH usually shows up in middle age/ approaching that time, and of course the symptoms vary greatly between ppl. I'm thinking that a bone marrow biopsy will determine your clone size. I wld also advise you to see a dr who is experienced in treating PNH. That makes a diff for sure since it is so rare. PNH dr's talk to other dr's who treat PNH, etc etc. My PNH developed slowly and got progressively worse the closer I got to 40. I then convinced myself that I was tired bcse I must be low on testosterone. That obv was not the issue!! I was nvr diagnsd until abt 6 mos before getting a trans. Good luck in your treatment.
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Old Fri Sep 12, 2014, 09:17 PM
ussoccer004 ussoccer004 is offline
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Join Date: Feb 2014
Location: Orlando, FL
Posts: 21
Glad you found the site my friend! Let me tell you I was 18-19 when PNH hit me but wasn't diagnosed until I was 26 yrs old this year 2014.

I can tell you right now yours looks pretty good for having PNH still very low clone size. Believe me if you haven't already done the research you will, and definitely will freak yourself out. PNH does suck but it is a new normal, the soliris or eculizumab infusion they came out with is a "God" send. It use to be a scary diagnoses, but don't let it get to you too much. I lived at a 6.9-7.4 hemoglobin and went to the gym almost everyday (being young contributed to that determination) but now after years of prednisone my everything hurts too much.

This board is great and full of great people, very informative and supportive. If you need anything feel free to ask, I am here for you also besides everyone else too.

Quote:
Originally Posted by TLL414 View Post
Hi... my name is Tom and I have been diagnosed with PNH. No apparent symptoms' yet other c/o fatigue/tiredness. I have had just under the low range in my blood tests results for several years so my primary care doctor wasn't too concerned... but my wife was. She (my wife) requested that I see a Hem/Onc doctor because she felt that (she works in medicine) 'if a woman has slight anemia, doctor's are not too concerned... but if a man has any anemia, it should be worked up, and not disregarded."

My LDH has been high 800-1,200 and I recently received the following test results. Can this information tell me what my clone size is? I know nothing of biology!

Paroxysmal Nocturnal Hemoglobinuria and related Disorders by Flow Cytometry. Cytometry part B

POPULATION(S) GATED:
Erythrocytes/Granulocytes/Monocytes
RBCS:
Type I: Normal CD59 level. --- 76.07%
Type II: Partial CD59 deficiency --- 0.08%
Type III: Complete CD59 deficiency --- 23.83%

GRANULOCYTES:
FLAER/CD24 deficiency --- 28.12%

MONOCYTES:
FLAER/CD14 deficiency --- 55.83%
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Diagnosed PNH 2014/ Autoimmune AA 2006 treated with prednisone/ Hemoglobin 10.1; ANC .55; Platelets 150K
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