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#1
Fri Oct 18, 2013, 08:08 AM
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Brand new!
Morning! I was just diagnosed yesterday with this (hard to say) disease. My head is still spinning. I don't fit the normal demographic apparently, of older 65+ Caucasian men. I'm 48 divorced black Mother of a son in college. I've been battling anemia practically all my life, I've had several transfusions and iron infusions. Nothing seem to keep work in keeping my Rbc @ acceptable and normal range. My WBC is now @ 3.1, and my bmb came back abnormal. Additional testing brought the final prognosis of MDS. I am optimistic, relatively healthy with no prior cancer or treatments at all. Uncertain how & why I was chosen but here I am, and I'm ready to fight with the rest of you!
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#3
Fri Oct 18, 2013, 01:30 PM
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Welcome AJ.
I was only diagnosed a couple of months ago myself, it is very overwhelming experience when you are diagnosed. You are among friends here, who have been a great source of information and support for myself and will be for you as well. Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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#4
Fri Oct 18, 2013, 02:40 PM
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A.j,
Sorry that you have to go through this, but the fact that you are young, is a good thing... As for not fitting the profile, many don't, Robin Roberts from the good morning america show is also an MDS survivor (successful bone marrow transplant)... You need to look at where your at, and what category you fit into: Low, Intermediate 1 or 2, or High Risk... This will point you in which direction you need to take with your treatment if any... It's possible that some sort of vitamin / mineral difficency is making your symptoms worse at this time... (ie. Vitamin B's, D3, K, Folic Acid, Copper, etc.) Taking care of these is like low lying fruit, and may help ease some the symptoms... Use this forum, as you will find MUCH useful information... Best of luck, and God Bless...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10  ; 5.5% blasts down to 3%, now 1% (post BMT)
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#5
Sat Oct 19, 2013, 03:23 AM
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 Thanks so much for the warm welcome! I'm looking forward to learning from you all and sharing information. I knew that Robin Roberts was dealing with a serious blood disease, of course when it affects you personally it causes you to pay closer attention. Her MDS, is a result of her chemo treatments from breast cancer. I've never had any type of chemo etc. I guess I'm wondering if there was some way unknowingly I put myself in danger, that could have been avoided. I'm just going to continue to read all of your stories, comments and suggestions and be prepared for the best.Thanks again!
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#6
Sat Oct 19, 2013, 02:00 PM
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Quote:
If MDS isn't secondary to previous treatment and you don't know that you were exposed to dangerous chemicals (like benzene at an industrial job) then chances are that there's no identifiable cause for your MDS. That's true in most cases, including my wife's MDS. Since we can't look back, we look forward!
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#7
Mon Oct 21, 2013, 02:21 AM
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Hi A.j.! I reckon just about everyone on this forum is unique. There are at least 7 different types of MDS and within each type it seems there are numerous variations. Let us know when you can which variety you have. All the very best as you continue on the trail of discovery and find out what if any treatment will suit you the best.
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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.
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