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MDS Myelodysplastic syndromes

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  #1  
Old Fri Feb 2, 2018, 11:04 PM
Barb Barb is offline
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Induction therapy and probable BMT

I saw the hemo at the James today. Tuesday I get another BMB. Then Thursday I am admitted for 7+3 induction chemo. He expects I will end up with a transplant. It has all gone so fast from stable 5q- to AML. My head is spinning and my emotions are all over the place. I am trying to get my affairs in order, deal with work, finances, insurance. It feels like so much. Then there is the month in the hospital thing that feels overwhelming in itself. I am trying to plan ahead while just being in the moment. For now I want to just sleep.
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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  #2  
Old Sat Feb 3, 2018, 12:34 AM
DanL DanL is offline
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Barb,

Wanting to take a reprieve from a series of bad news, especially when it is unexpected is natural. Give yourself a day or two to reset your mind and body, then come out fighting, ready to beat this disease that has had several years to get to this point. Know that now it is your turn to win. It is only with hardship and difficulty that you forge great strength, the kind that you did not know you had before.

It is definitely important to get your affairs in order, from making sure that your finances are set, to taking care of pets, getting help with your care, etc. The most important piece is to take care of yourself and make sure that you are healthy and ready in all aspects of what is ahead.

From experience, the month in the hospital goes quickly. You are in a cocoon of sorts, with room service, maid service, personal trainers (physical therapy), a series of best friends (rotating nurses and doctors) and then of course your family and friends that choose to come. You become the most popular person you know for that time. It is the time after the hospital that you will want to coordinate as you will probably want more assistance than you currently expect. I know that I would not have been able to get through without the assistance of my father-in-law.

At this risk of this being too long - ask for help, and know that it may have to enter parts of your life that you haven't asked for it before - paying bills, getting rides, cooking meals, cleaning the house, etc. That was the hard part for me, because I have always done those things for myself, so I had to swallow some pride to even accept help when offered. Hopefully you are not as prideful and stubborn as me

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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Sat Feb 3, 2018, 09:28 PM
Barb Barb is offline
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Thanks Dan. Those are good words to hold onto. I am pretty darn prideful and stubborn. God is using this to break that down in me. I am trying to take one day at a time. Tomorrow I start packing for the hospital. Monday and Wednesday are for getting things in order at work, including gooodbyes to clients and coworkers. Tuesday I will get to talk to the social worker at The James about long term options financially. And Thursday I start my stay at Club James.
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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  #4  
Old Tue Feb 6, 2018, 07:46 AM
lisa3112 lisa3112 is offline
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Good luck Barb! Walk when you can. Rest some of the day. And just keep eating! You will smash it.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #5  
Old Tue Feb 6, 2018, 09:27 PM
Barb Barb is offline
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I had my pre admission BMB at the James today. Being there today, seeing the still wonky cbc/differential, and knowing that in 2 days I will be moving in for a month just made it all too real. I would have cried except I was too sick from the meds they gave me for the BMB. Tomorrow I get to see my coworkers and clients a final time at work. I am grateful to have had a week from dx to admission. There are many other things I wish I could have done, but I could have been in a position to get nothing done. Thank you for your support.
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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Old Wed Feb 7, 2018, 09:56 AM
Hopeful Hopeful is offline
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Good Luck Barb! You have a lot of people here rooting for you!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #7  
Old Wed Feb 7, 2018, 04:21 PM
Meri T. Meri T. is offline
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Barb,
You sound like a quiet and strong person. Rooting for you from the start.
My prayers for your smooth sailing. I will be following your posts.
Meri
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. GVHD GI tract, liver, skin, eyes. Thanking God everyday for Life is wonderful.
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