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MDS Myelodysplastic syndromes

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  #1  
Old Mon Dec 20, 2010, 08:57 PM
Suzanne Suzanne is offline
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Rapid increase in WBC

My mother has had a rapid increase in her wbc count over the past month. Her normal wbc counts are between 1.2 - 1.9. Over the past 4 weeks I have watched them go from 3.5 to 15.7 today. She actually had a jump from 12.8 - 15.7 on just 5 days. Her doctors aren't flinching with this, they are saying maybe she has an infection. She is on antibotics and they keep going up. I also want to add she is having vaginal bleeding that started as staining and now is much like a menstrual period...she is 69 and hasn't had a period in years. She is receiving platelet transfusions about everyother day because of this. Platelets are about 18-26. She had seen Dr. Azra Raza last month and was to start on her experimental protocol of ON 01910.Na but with the recent turn of events she never put the port in. I wrote Dr. Raza and she wrote I quote "I am afraid that the increasing WBC is not a good sign." She wants another bone marrow biopsy to check the status on her disease.

So I guess I want to know from everyone is this how AML starts? Do they have treatments for AML? Can you actual survive AML after MDS?

I feel so bad for my mother because she has been such a trouper with all this and nothing has worked so far. My heart just breaks
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Mom 69 diagnosed with MDS RA 3/08
TLK-199 started 7/17/08 - no response
Vidaza started 12/15/08 - no response
Dacogen started 01/10 - no response
Bone Marrow Biopsy 10/10 - 13% blasts
Bone Marrow Biopsy 12/22/10 - 45% blasts - AML
I have an angel 1/4/11
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  #2  
Old Tue Dec 21, 2010, 09:04 PM
bebop bebop is offline
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I am no expert for sure but can they do chemo on her?
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Old Tue Jan 4, 2011, 08:13 AM
Paula W. Paula W. is offline
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Hi Suzanne,

I feel like both you and I are in the same boat. My Mom (77) also has MDS. She has tried Vidaza and at first it worked beautifully but then failed. We are going to see Dr. Raza this week (I hope) to go onto the same trial as your Mom. My mother is also on antibiotics fighting a cough and infection. Yesterday she went to the Dr. to find that her WBC also increased from 1.8 to 2.9. Needless to say we were excited, but now that I read your post, maybe it isn't a good thing. This disease is horrible. I am in constant worry for her. The week of Christmas the Dr. told me that my mom has about 6 months to live. I was besides myself. My mom doesn't know this. She looks amazing and feels great, so it's so hard to digest what they tell you. Please keep us posted on your Mom. And know that you are not alone. My heart is breaking with yours. All the best!

Paula
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Old Tue Jan 4, 2011, 07:27 PM
cathybee1 cathybee1 is offline
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Paula

I hope that Dr. Raza can provide your mom with some good news.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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Old Tue Jan 4, 2011, 11:09 PM
bebop bebop is offline
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one thing to remember is that the white count can go up with any infection so if she is coughing and on meds that may be why. another thing....the dr gave my dad 6 months at the time of diagnosis. that was almost 9 months ago. he is still with me. numbers can drive you crazy! I am trying my hardest not to think about that anymore but trying to take each day as it comes. I will keep your mom in my prayers
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Old Thu Apr 23, 2015, 07:48 AM
SarahRS SarahRS is offline
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As of 4/13, WBC 12.8

Hello, I was doing research and found your post. On April 13, my blood work came back, almost, perfect. I say almost because my WBC was 12.8. I woke up with vaginal bleeding and haven't had a period in just under 2 years because of being pregnant and then getting on the depo shot. I am 38-years-old (39 in June). I know you can start a period at any time with the depo shot, but there isn't any clotting and it's not real heavy, right now. It sounds like the same thing your mom is/was going through. I'm kind of nervous because I have a 12-year-old and a 15-month-old and I have to be here for them. I don't know what to think.
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Old Thu Apr 23, 2015, 05:22 PM
Neil Cuadra Neil Cuadra is offline
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SarahRS,

Assuming you haven't been diagnosed with a bone marrow problem, I don't think Suzanne's mom's case is comparable to yours, even though two of the symptoms happen to be similar. Her mom was a patient with myelodysplastic syndrome (MDS) and then acute myelogenous leukemia (AML). She took a series of chemo drugs and passed away in 2011 at about age 70.

I don't think you should panic. You may simply be experiencing side effects of medroxyprogesterone (Depo-Provera). But you should consult your doctor about your higher-than-normal WBC and let him or her know about the bleeding.
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