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#1
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Moving towards SCT
Hi everyone!
Due to my recent blood counts my transplant doctor feels we should proceed with preparations for a myeloablative allegeneic transplant. I guess I should feel fortunate since this was supposed to happen in Sept. 2008, but after I left my job my counts stabilized. Three months ago my platelets began to slowly drop again and last month my neutophils fell to .9. I am scheduled to have another BMB done this Friday. After that he will start all the pre-transplant testing which will take some time. They also have to contact the five donors again and test them. We are looking at maybe three months from now. I will let you know when I have more info. Jill
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18) |
#2
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Hi Jill,
Best of luck with this. I hope that your donors work out and everything goes smoothly. We are very similar in our history and age; I will be sending positive thoughts for the best possible outcome. Beth |
#3
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Good luck! Brace yourself for a rough year ahead, but for me at least, I feel a thousand percent better now than I did last year this time!
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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!) |
#4
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SCT
Hi Jill, as you can see things can change very fast in the old immune system. You want to go into this in your best possible health. when I went into my transplant I felt great and probably could have waited but I felt that I was above the power curve and I didn't want to mess with that! the sooner you get it donethe closer you are to being whole again. use this time to really fine tune your body, work on your cardiovascular, and musle tone, it really helps. Don't worry about a few extra pounds you will loose it. Work on positive affirmations! Where will you have your transplant? I will be 7 months post Transplant Feb 1st and I am starting to feel the turn around. I feel stronger then ever. Never forget that you can beat this! Sending you courage!! Vera
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09 ________________________________________________ |
#5
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Thanks girls..I know it's not going to be easy but I have the support of my family and friends, and my new little granddaughter encourages me to fight even harder. I will have my SCT at Stanford. It's 4 1/2 hours from my home which makes it a little difficult, but my parents live within 30 minutes. I really like my transplant doctor there and feel I am getting the best of care. I have been doing pilates and hope to start walking again once the weather warms up a bit. I am 5' 9" and originally weighed 124 lbs, now 134 with the help of ScandiShakes. The doctor would like to see me put on 10 more pounds before transplant. I'm so thankful for this site so that I can talk to others that have been through this. I'm sure I will have many questions in the weeks ahead.
Jill
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18) Last edited by Jill2008 : Tue Jan 26, 2010 at 06:13 PM. Reason: add text |
#6
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At least I know you are in good hands at Stanford. I could have gone there but I had more friends and family close to San Francisco. Keep us posted and keep your eye on the goal!!!!
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09 ________________________________________________ |
#7
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Jill,
Best of luck to you!! I agree with what everyone has said so far. You will do well. Just keep a positive attitude and try and keep moving as much as you can so you stay physically fit. You will beat this thing and then be able to go on with your life. Keep us updated frequently on how things are going. Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again... |
#8
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In Limbo
My preliminary biopsy report shows my diagnosis to be consistent with persistent myelodysplastic syndrome although all three of my blood lines are now affected and my marrow is mildly hypocellular at ~20-40%. Can someone with MDS also have AA? I didn't think about asking at the time of my appointment. My counts have stabilized for the second time and my transplant has been put on hold once again. At least it happened before I started the pre-transplant testing! Back to blood work every two weeks and follow-up in one month.
Jill
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18) |
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