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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Tue Jul 3, 2012, 06:03 PM
donna j. donna j. is offline
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post transplant transfusions

Hello everyone,

I am 5 1/2 mos post transplant. Blood indicates 100% donor however my type O has not yet flipped to her type A. I am in need of blood transfusions every 2 weeks. (whites and platelets are finally coming up: 5.3/92.)

My question is this: my transplant dr. wants to treat me with Rituxan to kill the "B cells" which she believes is causing the problem and preventing the flip over of blood types and need for transfusions. Has anyone post transplant experienced this infusion? Did it help? I have concerns as there are many possible side effects, including lower counts.

thank you all,

Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #2  
Old Tue Jul 3, 2012, 10:09 PM
evansmom evansmom is offline
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My son had the exact same problem. He was O+ pre-BMT and his donor was A+. It took nearly 5 months for his blood type to convert. His last blood transfusion was 4.5 months post-BMT (although he did have a compounding reaction to tacrolimus that caused hemolysis and very increased frequency of transfusions). He had a normal platelet count at that point, which you don't yet have. If you are 100% donor, the conversion will come. I'd rather see your doc hold out at least another month.

As a heads up, make sure you too are not having a drug induced hemolysis reaction, often missed by hematologists. Signs are red cell fragments (schistocytes/bitten cells) on peripheral blood smear, elevated LDH, decreased haptoglobin, rust coloured urine.

Best wishes,
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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 Tue Jul 3, 2012, 11:34 PM
donna j. donna j. is offline
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Nicolle,

Thank you so very much! I will postpone this scary treatment and will explore a drug induced hemolysis.

Again thanks,

Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #4  
Old Wed Jul 4, 2012, 03:33 AM
tserdogan tserdogan is offline
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Hi Donna,

İ had the same problem with the same blood groups.
İ wait nearly 11 months,not to transfuse red blood.
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  #5  
Old Wed Jul 4, 2012, 12:02 PM
donna j. donna j. is offline
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Dear Tserdogan

Thank you. Are you saying you needed transfusions for 11 months? How often? Did your dr. give you any treatments? Did the blood just finally flip over? My dr. is now saying mine won't because of the B-Cells and antibodies. I think she may be speculating though.

Also, Nicolle and Tserdogan,

I just stopped Prednosone on 6/19/12 and Valcyte on 5/21/12. My whites and platelets only began to rise again on 5/28/12 with a continuing upward trend so maybe there is hope the HGB will start to come around.

thank you both!

Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #6  
Old Wed Jul 4, 2012, 12:37 PM
squirrellypoo squirrellypoo is offline
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I was the same as Evan - it took several months for me to switch from B+ to O+, even though I was 100% donor cells and needed no transfusions. The doctors and nurse were totally unconcerned at the length of time involved - they said it varies wildly from patient to patient.
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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 Thu Jul 5, 2012, 04:52 AM
tserdogan tserdogan is offline
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Yes i needed transfuse 11-12 months and every ten days one package.
My blood counts increase suddenly and i give up transfuse.Thank God.
5 months after transplant my doctor give me additional cell.
Also my donor cell %100 and wbc was normal,plt was 50.000 - 80.000.
May be additional cell was a good treatment for me.

My donor is woman and 65 years old.
My blood group was 0 +
My donor blood group is A+
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  #8  
Old Thu Jul 5, 2012, 04:56 AM
tserdogan tserdogan is offline
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i wait 11- 12 months to flip my blood 0+,A+
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  #9  
Old Thu Jul 5, 2012, 09:05 PM
donna j. donna j. is offline
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Question

Very interesting Tserdogan,

Thank you. I have heard of people getting additional cells. Can one get additional stem cells if they originally had a bone marrow transplant with bone marrow? Does one need to go through the chemo and hospitalization again, I wonder.
If anyone has any information regarding my questions, I appreciate hearing from you. I will speak with my dr. next week.

thank you again,

Donnna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #10  
Old Mon Jul 23, 2012, 07:01 PM
donna j. donna j. is offline
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post transplant

Hi everyone,
Just wanted to give an update as to where I am at: Tomorrow is my 6th month anniversary post transplant. As of today my CBC's continue to climb:
Whites; 5.1; ANC 3800; Plates 130; and HGB 8.2. (HGB is good because this week I will be 21 days between transfusions as opposed to 10-14).
My digestion continues to be a problem with my esophogus the main area. So my dr and I agreed I would begin Budesonide, 9 mg, a steroid, not as stemtemic as Prednosone. I will also see a Gastro dr who specializes with transplant patients and determine if different digestive meds and the need for a possible endoscopy, which my platelets can now handle, are necessary.
Although we had planned to begin to reduce my Cyclosporene today, we will wait a couple of weeks to see if the Budesonide has any impact on improving my digestion first.
Because my HGB has begun to improve, I continue to put off the Retuxin treatment infusions. We are still waiting for my O+ type blood to switch to the donor's A+, hopefully it will do that without additional drugs.

Warm regards to all,

Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #11  
Old Mon Jul 23, 2012, 08:37 PM
Greg H Greg H is offline
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Hey Donna!

Great to hear that your counts are going up, Congratulations!

Take Care!

Greg
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  #12  
Old Tue Jul 24, 2012, 12:29 PM
evansmom evansmom is offline
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Budesonide is a good choice and the fact you're going longer between RBC transfusions indicates you are now making A+ blood! Congrats!
__________________
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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