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Old Sun Sep 17, 2006, 10:51 AM
pbaxter pbaxter is offline
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1 year birthday of a second stem cell transplant.

Fellow Caregivers, family and brave MDS/AA patients,

My wife Julie is celebrating the one birthday of her 2nd Stem cell transplant, today.
Her quality of life is very close to 100% and her counts are very good.
Hmg-13.7
PLt-287,000
wbc-8.0

She has tapered down to 2.5 mg of prednisone and 1mg of prograf.
A little bit of cGVHd persists in her mouth....but that is good.

I detailed her experiences and the fantastic care she has received from Dr. Anasetti and the complete staff at Moffitt Cancer in Tampa, 3 months after her second transplant.

The email below was sent Dec.16, 2005.

Praise God and I pray for His abundant grace for all of you who are going through the trials and tribulations of this disease.

paul


dec 16/05

I have not posted in a few months as we have gone through a hectic, scary, yet amazing few months.

Julie, my wife was diagnosed with MDS RAEB1 4/20/04 with 10% blasts and all 3 lines (Hmg, WBC and Platelets) affected. She had a Stem Cell transplant 8/17/04. Her blasts had increased to 14 % by that time. Her sister was the donor, being an exact 6/6 match. We had the procedure done at Moffitt Cancer Clinic in Tampa Bay and Dr. Claudio Anasetti was her surgeon. She underwent Busulfan/ Fludarabine chemo protocol for 6 days before the transplant.

On day 14 her neutrofils were sufficient that she was discharged and stayed near the clinic for 100 days. She developed some acute (first 90 days) Graft vs. Host Disease (GVHD) on her skin and liver but immuno-suppresants kept them under control and her CBCs and labs were normalized. She did not develop any chronic (after 90 days) GVHD and came home 2 days before Thanksgiving last year.

Everything was pretty routine until June of this year when her counts started to drop. They tried giving her a Thalidomide regimen to reverse the process but her WBC and Platelets worsened. A week before Labor Day a new BM aspiration indicated that she had indeed relapsed and had AML….20 % blasts and moving quickly in the wrong direction. She had no circulatory blood blasts.

We found out the Friday before Labor Day. The 2 of us and Dr. Anasetti had a couple of long conversations over the week-end. Her WBC was .8 with almost nil ANC and her platelets were 14000. She had few options.

1) Do the AML chemo induction therapy for 6 days and wait til day 28 and see if she went into remission. The DR. had major concerns that infection would overtake her with nothing to fight it. If it did not take she would go into hospice. If it did take they would re- infuse her with her sister’s cells after day 28 .

2)Do the AML chemo induction and re- infuse her with her sister’s cells immediately after the chemo and hope for remission in 12-14 days. The clinical study, using this novel protocol had a cohort of only 16 AML allogenic transplant relapsed patients.

We chose the second option and the Dr. had her procedure expedited…. she started the chemo at Moffitt 9/9/05 and the second transplant was performed 9/16.Her sister came down on 2 days notice. Her first transplant they used her chest for the central line and it got infected. They used the groin this time, which is far more susceptible to infection. NO INFECTION and it was taken out day 14. She has been on oral medication since then. It was touch and go for a few days and a couple of days it did not look good. They did a BM aspiration on 9/28 and she was discharged on 9/30. We found out on 10/3, day 16 that she was 100% donor cells and 0 blasts. Remarkable. She is taking minimal dosages of Prograf and Celcept for immuno-suppressants.

He allowed her to go home and she has been very good.. living very actively. She has a 30 minute rest in the afternoon. She had some liver acute GVHD and over the last week developed Chronic GVHD in her upper GI and in her mouth. It is under control and a positive indicator as it proves the Graft versus Leukemia affect is also at work. Her blood counts yesterday, day 90, were: WBC- 7.5 Hmg- 14.5 Platelets- 275000.

All the Thanks and Praise be to God...I have the best Christmas gift ever.

The battle goes on. God bless all of you and have a great Christmas.

Regards,

Paul
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  #2  
Old Sun Sep 17, 2006, 03:37 PM
Ruth Cuadra Ruth Cuadra is offline
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Join Date: Jul 2006
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Congratulations to you both, Julie and Paul. Thanks for sharing your story. It's very reassuring to patients and families in a similar situation to know that, despite all you went through, today you are well and your quality of life is excellent.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #3  
Old Tue Nov 1, 2011, 03:36 PM
Juli F. Juli F. is offline
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Location: Seminolle, FL
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Thank God

Though I am reading this posting in 2011 I am so very happy for you. I am always afraid that I will relapse and wonder what my options would be. I too have Dr. Anasetti at Moffitt Cancer Center and am amazed at his knowledge (plus I wonder if he ever sleeps). To think of all that you must have gone through in the first transplant, let alone have the courage and strength to do it again is inspiring to say the very least. God must truly have a special mission for the two of you Julie and Paul ~ never doubt his love. Each time I hit an obstacle I will remember the two of you and all you have survived. Thank you for sharing your story.
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