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#1
Wed Apr 4, 2018, 02:10 PM
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MDS (good news and bad news)
Hi all. I haven't posted since 2008. My mom was diagnosed with MDS RARS way back in 2008. Back at that time her hematologist said she only had roughly 4 years to live. Well.....it's been 10.
She had a few bumps along with the way and when her hemoglobin dropped about 5 years she was given E-prex injections. Those injections did wonders for her and to be honest our family and my mom sort of forgot about the disease for years. She was symptom free and these injections keep her hemoglobin up. In February 2018 she had her semi annual check up and her hemoglobin was done to around 60. She was given 2 units of blood and when she had her recheck it had only gone up to 90. This is with weekly injections of E-prex rather than monthly. At her appointment last week her hemoglobin was 55 and her hematologist sent her for an emergency 4 units of blood and told her the E-prex and her bone marrow are no longer working. Our family is devastated. She did so well for so long. We are now waiting to see her blood test results and her hematologist on the 10th of April and we are just hoping and praying we receive good news. Her last bone marrow biopsy showed NO progression to AML but her hematologist has said her MDS had "progressed". He was no great help in explaining anything else. Her white cell count and platelet count are normal. Just wondering what to expect now and if anyone else has been given similar news? Just so worried. Thanks for reading. 
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#2
Thu Apr 5, 2018, 11:16 AM
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Joanne,
Sorry to hear about your mom but also interested as she has what I was diagnosed with last june, the same version of mds. I hope they have some answers for her. Keep us posted. Good luck. Allan
__________________
MDS-RARS diagnosed with BMB June 2017, wait and watch for now as blood counts have increased from levels that prompted BMB
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#3
Thu Apr 5, 2018, 03:29 PM
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Hi Joanne - thank you for sharing. Talk to your mom's doctor about next steps for treatment. It now may be time to being treatment with Vidaza, Dacogen or Revlimid. If you are interested in seeking a second opinion, contact AAMDSIF and they can help you with locating an expert, help@aamds.org or call 800-747-2820 x140. Best wishes to you and your mom.
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