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#26
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Hi - Tracey, sorry about your delay - hopefully they'll fix you up and you'll be good to go - my transplant was delayed a few times for donor and heart issues - sitting in limbo can be tough - but try and enjoy your reprieve. Thanks for asking about me.
Dan - the shower advice was excellent - No matter how bad I feel going in, the shower always makes me feel better - just letting the warm water run over me is somehow very therapeutic. Well, everyone was right about the days following transplant being difficult. The last few days have been hard - I've been indescribably fatigued, not much of an appetite and generally feeling miserable. I feel a bit better this morning and hopefully it will keep up. Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015 |
#27
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Hi Paul - Glad you were able to post this morning! So sorry the last few days have been so hard. Glad to hear you are feeling a bit better today. Hopefully you will continue to feel better every day. I am going to remember Dan's advice about the shower too.
I didn't realize your transplant had been delayed a few times. I did finally get a little bit of good news yesterday - the bmb I had 2 weeks ago showed my blasts have gone from 14% to 10% since the last one I had in March.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML. |
#28
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Hi - Tracey I'm sorry for your delay - hopefully they will fix you up and get you back on track. I was delayed for several months - waiting in limbo can be tough.
The last few days have been difficult for me - extraordinarily tired, not much appetite, miscellaneous pains (more related to the bed then anything else I think). My counts are still down around zero and I'm praying to engraft. Meanwhile pain meds help somewhat but I'm still quite exhausted most of the time. Dan's suggestion about showering was a good one - although it takes all my energy to get into the shower, I always feel good with the water cascading down my face. I'll try and keep you posted as things move along. Its been one week since the transplant! Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015 |
#29
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Hi Paul,
Will be praying for engraftment! Thanks for posting. It's good to know what to expect. Hope you are feeling better every day! I don't really mind the delay. It gives me more time with my family. I do have to give myself IV meds - but I am getting used to that.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML. |
#30
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Tracey - that is good news about your blasts going down -are they doing anything get them down further? I understand that blasts below 10 improve the outcomes - so maybe you'll be able to get them down some more.
Sorry for posting twice - I didn't realize there was a second page and though I had messed up my initial post. Did I mention that my brain is very fuzzy? I started nuepogen tonight - its supposed to speed up engraftment - I'll feel much better when I see signs the transplant is working. Best to all P.
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015 |
#31
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Hi Paul - No, they aren't. I think it must have been the only good thing that came out of the 2 rounds of Vidaza I had. I was just relieved to find out that they had not increased - especially with all my infections.
I am not surprised your brain is fuzzy. I know chemo does that to you. Hope you continue to feel better and that the neupogen helps speed engraftment.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML. |
#32
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Paul, you are in my thoughts and prayers.
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41yo Female, AA with digestive problem in May 2005, hATG+Cyclosporine no response, 11/2005 SLE diagnosed, Cellcept+pred, digest resolved, but still tx, 5/2008,shingles and IV pred, stop cellcept, tx free until 5/2015, MDS EB1, Marrow blast 9%, Monosomy 7 |
#33
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I'm reading your posts with interest, Paul, and am really happy to read that things are going to plan so far. I'm continuing to pray for you, along with the other BMT/SCT friends on this forum and those who are struggling for answers.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood. |
#34
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Paul,
Just wanted to pass along some positive thoughts and strength. Those few days prior to engraftment are really difficult sometimes. I was a little bit of a late bloomer on the neutrophils and was around day +26 before I hit 1000. Even getting on the positive side of the neutrophils helped my energy level and overall well being. Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body. |
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