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AA Aplastic anemia

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  #1  
Old Fri Jul 26, 2013, 11:27 PM
SAA Mom SAA Mom is offline
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Blood and Platelet Transfusions before BMT

My son with SAA has received 4 ATG treatments 1 month ago and is on Cyclosporine/Prednisone. He is receiving approx 1 unit Platelets every week. Last RBC transfusion was in the hospital. We will not know if the treatment is working for at least another month. I have read that transfusions before a BMT can be harmful, decrease the chances of the success of the BMT. Many of the doctors at Barnes have told me they do not believe transfusions to decrease the transplant success. The risk is that he will develop antibodies to the Platelets and they just wont raise his count. Does anyone have any knowledge regarding this topic?
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  #2  
Old Sat Jul 27, 2013, 07:38 PM
evansmom evansmom is offline
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Hi SAA Mom,

It is completely true that transfusions of both platelets and red blood cells can have an impact on the success of a BMT. With every transfusion, a person's immune system recognizes components in the blood products that are foreign and creates antibodies against them. The more transfusions, the more antibodies, the more antibodies, the more potential for complications in BMT. It is also true that, as a result of these antibodies, a platelet transfusion dependent individual can become refractory to platelets in which case no amount of platelet transfusions will effectively raise the platelet count satisfactorily.
But, bear in mind, it does take quite a number of transfusions to get there. My son had roughly 20 red cell transfusions and 55 platelet transfusions and thankfully they had no impact on his course. I have also followed many successful BMT stories where the child or adult had even more and did fine. Plus, in the event that one has developed too many antibodies, one could undergo plasmapheresis or plasma exchange prior to transplant.

Hope this helps,
__________________
Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #3  
Old Sat Jul 27, 2013, 11:55 PM
SAA Mom SAA Mom is offline
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Smile

Thanks so much for your answer. It is wonderful to read your success story. I pray that in 10 years my son has similar results.
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  #4  
Old Mon Jul 29, 2013, 08:06 AM
Marlene Marlene is offline
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All of his blood product should be irradiated to help reduce the potential for these problems in transplants.
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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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #5  
Old Mon Jul 29, 2013, 09:49 AM
SAA Mom SAA Mom is offline
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Yes, all his Platelets and RBCs are to irradiated and CMV neg. Thanks for your thoughts.
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  #6  
Old Mon Jul 29, 2013, 10:19 AM
squirrellypoo squirrellypoo is offline
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I personally had way more than that over my lifetime - I had tons of transfusions as a kid, and then in the ~9 months before my transplant, an awful lot more besides. For my last month before my BMT, I was having two red and two platelets every single week!

If you start to have reactions to pools of platelets (which is very scary, but the nurses can stop the reaction within a minute or two), then next time they'll order single-donor platelets for you. If you still react to that (which I did!), then they'll order HLA-matched platelets for you. The logistics behind getting these are complicated which make them really expensive apparently, so they only do this if absolutely necessary, and they have to plan a day or two in advance so they're ready for you.

Feel free to look through my thread and you can see that I've had nothing short of a miraculous BMT and recovery. So please don't spend your energy worrying over this particular aspect. If blood transfusions are needed, they're needed!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #7  
Old Mon Jul 29, 2013, 03:53 PM
SAA Mom SAA Mom is offline
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That is exactly what I needed to hear. Thank you.
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  #8  
Old Sat Aug 17, 2013, 05:00 PM
dfantle dfantle is offline
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Hi SAA Mom, many experts say it can take up to 6 months before it is truly known if the ATG was successful. So, keep this in mind over the next few months, just in case his progress is not very apparent.

In addition to the irradiated & CMV negative red cells for transfusions, these should also be leukocyte reduced to minimize a chance of a reaction.

I was very reactive to platelet transfusions so had high doses of Benedryl & some tylenol before every platelet transfusion to help eliminate reactions. Also, there are 2 possible types of reactions, that I know of. The type that I had which just required the Benedryl & Tylenol, and an antibody reaction. The antibody reaction is much more rare and this is when the blood center looks for single red cell or platelet donors. Even with all the reactions I had, I never had an antibody reaction so was still able to use any donor platelets. (With any reaction I had, my clinic always ran an antibody test during my reaction to be certain)

Also, I had an unrelated donor stem cell transplant this year & even though I had received 77 red cell transfusions and even more platelet transfusions, I had no issues with the transplant.

Best,
__________________
Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #9  
Old Sat Aug 17, 2013, 11:24 PM
SAA Mom SAA Mom is offline
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Dena,
Thanks for the info.
Question: How did you decide to have a BMT and how are you doing?
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  #10  
Old Sun Aug 18, 2013, 09:14 AM
Karenish Karenish is offline
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I took 10 months to respond to ATG - so I would say to everyone - don't give up x
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  #11  
Old Sun Aug 25, 2013, 07:53 PM
dfantle dfantle is offline
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Quote:
Originally Posted by SAA Mom View Post
Dena,
Thanks for the info.
Question: How did you decide to have a BMT and how are you doing?

SSA Mom, the reason I had my Donor SCT is a little more than 3 months after my Horse ATG, I ended up with a very tiny skin infection which ended up being staph, and instead of my blood counts "rising" to fight the infection, they crashed, even tho the infection was not present in my blood.

Prior to the infection, I had started responding to the ATG so although my counts were still very low, I hadn't needed platelets or a GCSF shot for 6 weeks and red cells for 2-1/2 weeks. When my cell counts immediately crashed with the infection, my Hematologist suggested we initiate the donor search just in case the negative impact to my counts with illness or infection occurred again as this is not the norm with most AA patients. It took 3 rounds of anitibiotics to finally clear the infection and my counts never recovered from this. I required platelets 2-3 x weekly, red cells weekly and gCSF shots every 2-3 days. So at 7 months post ATG I decided to move forward with transplant & had it 10 months post ATG. I could have had it sooner and it was risky to delay it, but the timing worked better and we knew that if the infection returned or I had another issue, we could move up the date quickly as the donor had already committed.

In most cases with AA patients my age (54), people have a repeat ATG prior to having a transplant, but because of how my cells crashed with infections, the experts did not recommend this for me.

I was very lucky with my transplant as so far it has been very successful and I feel terrific at almost 7 months post. My counts are all normal now & I haven't had a red cell transfusion since April (3 months post transplant) and no platelets since early February (the week after transplant). So far no GVHD issues either.

Best,
__________________
Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #12  
Old Mon Aug 26, 2013, 02:53 PM
Whizbang Whizbang is offline
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Dena,

It's great to hear success stories such as your own, it is a great inspiration to those of us who follow...

God bless...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #13  
Old Mon Aug 26, 2013, 05:24 PM
Sally C Sally C is offline
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Dena,
That is such great news. So glad you're doing well!
God Bless,
Sally
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  #14  
Old Tue Aug 27, 2013, 12:38 PM
sbk007 sbk007 is offline
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"MINI transplant"

Dena, I am interested in these mini transplant such as you had.
At my consult the option wasn't mentioned, they advertised the standard medium intensity for me. After reading very encouraging stories from you and others, its something I'm going to bring up. SCT with little or no hospitalization, and lower ghvd probabilities sounds great to me. I'm the same age as you. Keep up the good work on your remarkable road to recovery.
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  #15  
Old Tue Aug 27, 2013, 02:35 PM
Whizbang Whizbang is offline
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sbk007,

it appears that your donor must be the same blood type, and CMV type, as your blood cells, and the donor's blood cells must co-exist for a while... Dena's blood tested 80%/20% a short while after the 'mini' transplant...
(I'm inferring all this from reading Dena's past posts)...

Unfortunately my Brother, while a perfect 10/10 match is AB+, I'm B-...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #16  
Old Tue Aug 27, 2013, 06:28 PM
sbk007 sbk007 is offline
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Whizbang, I think the rules for donor matching are same and based on HLA. The 80/20 is expected for this type of transplant. "Unlike the standard allogeneic transplant, cells from both the donor and the patient exist together in the patient’s body for some time after a mini-transplant. But slowly, over the course of months, the donor cells take over the bone marrow and replace the patient’s own bone marrow cells. These new cells can then develop an immune response to the cancer and help kill off the patient’s cancer cells — the graft-versus-cancer effect."
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  #17  
Old Tue Aug 27, 2013, 09:30 PM
DebS DebS is offline
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They are considering a mini or reduced intensity transplant for my husband, but the doctor said they would not know or decide until he has been examined and evaluated. In one way, I would like for him to have this as it sounds like it would be less taxing for him. But in another way, I have heard that the regular intensity chemo regimen is better. Any ideas??
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  #18  
Old Wed Aug 28, 2013, 02:05 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by DebS View Post
They are considering a mini or reduced intensity transplant for my husband, but the doctor said they would not know or decide until he has been examined and evaluated. In one way, I would like for him to have this as it sounds like it would be less taxing for him. But in another way, I have heard that the regular intensity chemo regimen is better. Any ideas??
Deb,

I suggest that you wait for the recommendation of the medical team. That's the starting point for making your decision.

What's best depends in part on Doug's overall health status. At age 61 he's in the gray area where a mini transplant may be appropriate to minimize the chances of complications or interactions with other health conditions, but where if all signs are positive a full transplant might still turn out to be the advisable choice.

Once the doctors recommend one approach or the other, ask them to explain what they see as the tradeoffs and the reasoning behind their recommendation.
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  #19  
Old Wed Aug 28, 2013, 09:42 PM
DebS DebS is offline
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Thanks, Neil. We are not planning on any decisions until the doctors weigh in. I was just wondering what the pros and cons of the procedures are.

In the meantime, he is having to have more frequent transfusions. But as was mentioned, when they're needed--they're needed.
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  #20  
Old Sun Sep 8, 2013, 01:25 PM
dfantle dfantle is offline
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Quote:
Originally Posted by sbk007 View Post
Dena, I am interested in these mini transplant such as you had.
At my consult the option wasn't mentioned, they advertised the standard medium intensity for me. After reading very encouraging stories from you and others, its something I'm going to bring up. SCT with little or no hospitalization, and lower ghvd probabilities sounds great to me. I'm the same age as you. Keep up the good work on your remarkable road to recovery.
Thank you all for your good thoughts =).

SBK007: From what I've heard & read, Dr's usually recommend a full transplant (Myeloablative) because their data shows higher response rates.
However, for Aplastic Anemia, when the patient is above a certain age, their data tells them a mini (Non-Myeloablative) offers lower risk. (I truly do not know what the recommendations or protocols are for MDS however)

Regarding GVHD: I can't remember for certain, though because with a mini the donor cells and recipient cells "co-exist" for a while , if I recall correctly I believe GVHD risk may actually be a bit higher with a mini. However, with a mini since the recipient still has a few remaining cells at transplant, the infection risk is lower. This is why "mini" patients can typically be released from the hospital sooner.

For me, I had what they called a "mini plus", so I received about 30% more radiation than a typical mini patient. My team was concerned about my history of platelet reactions, so decided a little higher radiation would help minimize any potential reactions while receiving my donor cells.

It's all a delicate balance of weighing different treatment options & this is why having a very experienced medical team is so important.

Best,
__________________
Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #21  
Old Sun Sep 8, 2013, 01:32 PM
dfantle dfantle is offline
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Quote:
Originally Posted by Whizbang View Post
sbk007,

it appears that your donor must be the same blood type, and CMV type, as your blood cells, and the donor's blood cells must co-exist for a while... Dena's blood tested 80%/20% a short while after the 'mini' transplant...
(I'm inferring all this from reading Dena's past posts)...

Unfortunately my Brother, while a perfect 10/10 match is AB+, I'm B-...
Hi Whizbang, although your brother has a different blood type, my recollection is when a sibling match is available it is still much better to have a 10/10 sibling transplant than donor....
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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