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AA Aplastic anemia

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  #1  
Old Sat Dec 15, 2012, 03:39 AM
NLJabbari NLJabbari is offline
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CMV Negative?

Initially my son was dx'ed as CMV Negative. His Pediatric Hematologist always ordered CMV Negative Blood Products for his transfusions. Now his New "Adult Medicine" Hematologist feels that it's unnecessary to order CMV Neg. Blood products for him since PRBC's are Irradiated. The blood bank told me that even though they are irradiated, they cannot guarantee CMV Negative unless they specifically test the blood product. I have requested that my son receive CMV Neg. Only, but his new doctor seems to think it's not necessary!!! I'm confused and feel like either this doctor is not with the program and not as knowledgeable of AA or am I overreacting? Any thoughts??
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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...

Last edited by NLJabbari : Sat Dec 15, 2012 at 03:43 AM. Reason: I meant to type CMV for Cytomegelovirus, but typed MCV instead
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Old Sat Dec 15, 2012, 06:06 PM
Robi1Knobi Robi1Knobi is offline
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Not an expert...but

Hi there, I'm not an AA expert, but have untreatable moderate AA and would be an advocate for myself if a doctor was trying to refuse my wishes to have CMV- anything.
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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Old Sat Dec 15, 2012, 06:36 PM
Marrowforums Marrowforums is offline
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Norma,

I'm not an expert either, but I read a lot. From what I've read, irradiation alone doesn't prevent CMV infections.

An old article from MD Anderson discusses two other approaches that are apparently more effective:
  1. Blood products from CMV negative donors. This produces the least risk of a CMV infection. The problem is that it may be hard for the blood bank to maintain a supply since so many donors are CMV positive. It's also possible for blood recipients to develop antibodies that further limit their donor pool.

  2. Leukocyte-reduced blood. The leukodepletion filtering process eliminates most CMV risk. You'll want to know that the blood bank tests each unit for successful leukodepletion.
The report concludes that relying on CMV negative donors (choice #1) should be reserved for high-risk patients, such as transplant patients. I think that includes patients who might be considered for transplant in the future. It may be a matter of treatment center or blood bank policies.

In any case, the article isn't recent, so I think it would be worth talking directly to the blood bank at the treatment center for the latest they can tell you. I think the first question is whether Yashar is receiving or should receive leukocyte-reduced blood for his transfusions. If so, ask if they test each unit and make sure that the doctor is ordering leukocyte-reduced blood. This should address the CMV concern.

If Yashar doesn't/won't get leukocyte-reduced blood then I'd ask the blood bank and/or the doctor if there's any reason not to limit his transfusions to CMV-negative blood. Without a good reason not to, I'd insist on getting only CMV-negative blood.

Here is another forum site where the question came up.
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Old Sun Dec 16, 2012, 12:46 AM
NLJabbari NLJabbari is offline
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Thanks so much for the feedback. That has been my understanding, that if a patient is CMV Neg. it's best to try and stay that way especially since BMT is not out of the question yet.
I have requested that Yashar be given CMV Neg. blood products Only and also asked that my request be documented on his Medical Chart. She emailed me the following response:

Hi Norma,
I spoke to our blood bank director and he informed me that :Our official policy is that we do not carry CMV-neg, but regard leukoreduction as a safe method to decrease CMV transmission. Although we do not specifically order or inventory CMV-neg blood, some of our blood just happens to be CMV-neg.
So, I will request and if CMV negative here in our supply than he will get it.
I would also like to inform you of the additional information he gave me:
UCSF and LPCH (Stanford) still offer CMV-neg blood for bone marrow transplant when the following 3 conditions are met: if the patient is serologically CMV-neg AND the patient is about to have a transplant at Stanford or UCSF (like within 30 days is what UCSF uses) AND the donor marrow is CMV-neg, . . All of our blood bank, laboratory, and BMT regulatory agencies require that we use either leukoreduced OR CMV-neg blood. In some parts of the country, like the South, the seroprevalence is nearly 100%. So they do BMTs without any CMV-neg blood. Some academic centers like Emory and Yale do not use CMV-neg at all. Many local community hospitals, such as Santa Clara Valley Medical Center, John Muir, Children's Hospital Oakland do not use CMV-neg.
In one famous randomized clinical trial comparing Leukoreduced to CMV-neg blood, there was no difference.

I'm confused about the (3) reasons as it would seem that just being on the transplant list would qualify a CMV-Neg patient to receive CMV-Neg. The whole 30-day deal doesn't make sense to me!
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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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  #5  
Old Sun Dec 16, 2012, 12:27 PM
Neil Cuadra Neil Cuadra is offline
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Norma,

Given that the blood bank "regards leukoreduction as a safe method to decrease CMV transmission", the doctor is assuring you that Yashar will be protected by getting leukoreduced blood when CMV-negative blood isn't available.

I guess UCSF considers CMV-negative blood to be the slightly safer choice of the two, which is why they use it during transplant preparations as an added measure of safety. Perhaps they ration it, with that 30-day condition, due to limited supplies. When patients considering a possible transplant in the future don't know who the donor will be, they won't meet the third condition (having a donor known to be CMV-negative) either.
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Old Tue Dec 18, 2012, 12:43 AM
Hopeful Hopeful is offline
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I would insist on CMV-negative blood for Yashar, especially given his young age. I was CMV-negative. However, my doctor didn't always note this in my orders for blood. He thought it would be harder to get, and I was on the IST route. Unfortunately, I wasn't wise enough to the self-advocacy thing early in my disease and didn't realize the importance of CMV status. I didn't check the blood bags initially. Consequently, I am now CMV positive. My blood products were irradiated and leukocyte-reduced. It is my understanding that being CMV-positive puts a person at increased risk of transplant complications.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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