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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Fri Aug 16, 2013, 02:14 AM
SAA Mom SAA Mom is offline
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Small Clone of PNH

Is a small clone of PNH something to worry about?
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  #2  
Old Fri Aug 16, 2013, 12:28 PM
Ashley O. Ashley O. is offline
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Hi SAA Mom,

I also have a small PNH clone. I have recently relapsed with SAA and my PNH clone has not changed since my original diagnosis. There are some studies that suggest the presence of a small PNH clone may actually allow for a better response to immune suppression treatment. My doctors have told me my clone is nothing to worry about.

I hope this helps.

Ashley
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Ashley; diagnosed October 2010 while 34 weeks pregnant; treated with ATG and Cyclosporine; tapered in August 2012; relapsed August 2013; currently on Cyclosporine awaiting a decision regarding round 2 of ATG
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  #3  
Old Fri Aug 16, 2013, 11:02 PM
SAA Mom SAA Mom is offline
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Were you placed on Anti fungal meds while on prednisone following ATG?
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Old Sat Aug 17, 2013, 11:27 PM
SAA Mom SAA Mom is offline
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2nd question

With PNH, what is considered a small clone?
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Old Mon Aug 19, 2013, 03:48 PM
Ashley O. Ashley O. is offline
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Hi SAA Mom,
I have never been on Anti Fungal meds and I don't know what constitutes a small clone. My doctors just say "small clone" and I have never thought to ask...I suppose I should though!
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Ashley; diagnosed October 2010 while 34 weeks pregnant; treated with ATG and Cyclosporine; tapered in August 2012; relapsed August 2013; currently on Cyclosporine awaiting a decision regarding round 2 of ATG
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  #6  
Old Mon Aug 19, 2013, 07:53 PM
SAA Mom SAA Mom is offline
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We went for a 2nd opinion at a different facility. The doc there says any PNH is not good. He also said my son should have been placed on an anti fungal when on high dose prednisone.
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  #7  
Old Mon Aug 19, 2013, 11:37 PM
Heather8773 Heather8773 is offline
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SAA Mom
Sorry y'all are going through this my husband has both as well. Pnhdisease.org has good advise for PNH pts. It's a forum like this one.
What is your sons clone size? What is his LDH numbers? Both important to know and keep track of. PNH is very controllable w Solaris. Don't be concerned about cost if you google it. A nurse case manager through alexion will help guide you through financial aide and most ins approves it bc it is currently the only drug available. The biggest concern w PNH is if it's allowed to run rampant w/o treatment (this was confirmed at an aamdsif conference see my "if your on the fence w Solaris " thread). Good news your son has only a small clone bc he is at a point to where Solaris could prevent clots, long term high level hemaloysis (causes the most damage).
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim

Last edited by Heather8773 : Tue Aug 20, 2013 at 12:04 AM.
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Old Tue Aug 20, 2013, 04:45 AM
NLJabbari NLJabbari is offline
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Not sure if this is correct, but I was told that a patient is not treated with Solaris until the clone size is at 50% I could be wrong, but that's what I was told by two different doctors.
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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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  #9  
Old Tue Aug 20, 2013, 05:55 PM
Neil Cuadra Neil Cuadra is offline
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There will be an excellent chance to learn about PNH and ask questions tomorrow.

The AA&MDSIF Online Leaning Center is having a webinar on "Blood Cell Production vs. Blood Cell Destruction: PNH and Other Bone Marrow Failures", including an explanation of aplastic anemia with PNH clones.

Click "Upcoming Webinars" and you'll see it listed with a Sign Up button.
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  #10  
Old Wed Aug 21, 2013, 12:20 AM
Heather8773 Heather8773 is offline
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Nljabbari

Good point. Yes SAA Mom, double check the clone size when Solaris is reccomended before deciding if it's right for y'all.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #11  
Old Thu Aug 22, 2013, 10:43 PM
TonyBegg TonyBegg is offline
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clone size

Hey SAA Mom. I have been reading a lot lately. Karin (mother of my kids) has had PNH for 23 years and has a clone size of 39% (granulocytes are missing either CD55 or CD59 or both i.e. are PNH granulocytes). In my reading I saw a set of slides with an "incidence of thrombosis versus time chart", and the cut off point was 50% (the two charts were very different with much larger incidence of thrombosis if clone size >= 50%). I have also read that PNH is thought to be a response to AA in some cases. AA involves an autoimmune response involving T-cells. T-cells are activated and attack the stem cells from the marrow (T-cells come from stem cells too). PNH stem cells are more resistant to T-cell attack so even though PNH causes other problems (red blood cells are attacked by the complement system and don't live so long) at least there are *some* cells from the AA marrow. Karin is now showing signs of AA (pancytopenia) and needing RBC and platelet transfusions. We have had some early (just 10 days taking it so far) success with Papaya Leaf extract which is a sort of herbal Anti-Thymocyte Globulin but less toxic. There may be a less toxic treatment for AA (Phase II trial NCT00229619) using Rituximab a monoclonal antibody (mab) that attacks B cells which may be stimulating the T cells involved in AA. A case study with a patient with AA/PNH found it virtually eliminated the PNH clone. So there is hope of less drastic treatments for your son's condition.
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