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#26
Sat Jul 27, 2013, 01:20 PM
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Thank you for your love
I just want to thank you for your thoughtful support. Facing mortality head in does not feel as awful as I had imagined. But being a take-charge person, there's so much to do!! Blessings to you all and may love and strength guff yours and your loved ones' journeys
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB. 
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#27
Sun Jul 28, 2013, 01:13 PM
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leukemia cutis
Hello Bambam,
I am so sorry to hear that your disease has progressed to AML. I know it must be a shock to you. I wish you the best of luck in obtaining remission with induction chemo and hope that you might be eligible for BMT. I wanted to thank you for educating us about the importance of being aware that certain unusual skin lesions, itching, blisters, etc can occur in MDS patients and can portend or predict progression of the disease. Although rare, I have heard of similar cases who developed the rash long before leukemia was suspect from the blood or bone marrow. Of course we all get the normal age related skin lesions or sun related skin cancers but it is good to be aware of any new skin lesions like you describe and tell our hematologists about them. Good luck and keep us informed about how you are doing. Thanks tytd
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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#28
Sun Jul 28, 2013, 08:30 PM
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I'm so sorry to hear your news. A year seems soon from low-risk MDS to AML. You mentioned you have good WBCs, neutrophils and platelets but bad RBCs. My husband's numbers are the same and it's certainly different than most MDS patients.
Take good care and we're sending our best wishes your way. Liz & Bob
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Liz, wife of Bob (64) dx 11/2012 RAEB II now 15% blasts rare t(1;3)(p36.3q21) Vidaza, Aranesp, Exjade
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#29
Mon Jul 29, 2013, 08:07 AM
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So sorry to hear this. Wishing you the best.
M
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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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#30
Mon Jul 29, 2013, 11:14 AM
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Miracles do happen
This is a phrase I have chosen to meditate on. Each day I will have a word... Yesterday was GRATITUDE and today is FORGIVENESS. I'm grateful for your support and well wises
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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#32
Sat Aug 10, 2013, 06:25 PM
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I made a clinical trial for MDS->AML
This particular trial is a variation on the traditional 7-3. Same drugs, but given through liposome infusion on days 1,3,5. Phase 2 trials suggested some promising data for AML resulting froMDS. so my fingers are crossed. My roomie just had a transplant, 100% match unformed donor registry. It took a year to diagnose her MDS ... But then it is a syndrome isn't it! With many variations. Goal one is remission. Goal 2 transplant. Here's hoping and praying ...thanks for your love and support
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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#33
Sun Aug 11, 2013, 12:53 PM
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Best wishes
Best wishes to you and your roomie! Hope all goes well -
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Susan Patient, 58, MDS, UPDATED 9/13 Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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