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  #1  
Old Mon Nov 28, 2011, 04:44 PM
Nadia T Nadia T is offline
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Join Date: Nov 2011
Location: Eugene, OR
Posts: 16
Anyone with MDS in Oregon

I'm in Eugene, diagnosed 7/11. Would love to contact people on the West Coast or nearby.
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  #2  
Old Fri Dec 2, 2011, 04:24 AM
cathybee1 cathybee1 is offline
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Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
Hey, Nadia. We are in State of Jefferson .. south of Medford on the California side.
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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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  #3  
Old Sun Dec 4, 2011, 04:26 PM
Nadia T Nadia T is offline
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Join Date: Nov 2011
Location: Eugene, OR
Posts: 16
Anyone in Oregon

I'd love to talk with you. My email is ntelsey@gmail.com
Nadia
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  #4  
Old Mon Feb 27, 2012, 11:30 PM
johnrb johnrb is offline
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Join Date: Dec 2011
Location: Roseburg, OR
Posts: 2
MDS in Oregon

I was diagnosed in November 2011. Live in Roseburg and I am starting my third round of Vidaza this week. No change yet. I have had 4 blood transfusions and spent a week in the hospital in January due to fungal infection in lungs and then pneumonia. Also receiving 3 shots of Neupogen (not sure how to spell that) each week and taking boat load of pills. I'm 58 years old and was a smoker for about 15 years, I quit in early 1980s.

I have started the process of getting a bone marrow transplant at OHSU. Luckily I can still work and have health insurance.

I lived in North Eugene for 21 years. My son is a senior at U of O. My daugther graduated U of O and lives in Portland.

Anyway, I would like to hear how you are doing and what is being done to treat your MDS. I hope things are going well.

John
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John; diagnosed Nov 11 with MDS; currently receiving Vidaza infusions
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  #5  
Old Sun Apr 1, 2012, 05:18 PM
Nadia T Nadia T is offline
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Join Date: Nov 2011
Location: Eugene, OR
Posts: 16
Living with MDS in Oregon

John -- apologies for the late reply -- I took a break from the site and meanwhile started a trial of Campath at NIH.

All my counts are low, and even lower post-treatment though that will hopefully change. Last WBC-.7, Neutrophils-.34, Hemoglobin- 8.9 and platelets-20. I was getting tranfusions every week or so but have now gone
2 1/2 weeks and may have my blood tested less (weekly instead of twice a week)

I go back to Bethesda and the NIH in May and *may* get a sense whether the campath is working. Otherwise I should know in August.

A transplant has never been offered to me as an option. I have no family donor and they tell me my MDS isn't bad enough. My fear is that by the time it is, I will be too old (I'm almost 65)

How are you doing these days? Let's stay in touch.
Nadia
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  #6  
Old Mon Apr 2, 2012, 09:45 PM
cathybee1 cathybee1 is offline
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Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
Nadia, I am sending prayers your way.
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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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  #7  
Old Fri Apr 6, 2012, 02:25 AM
Nadia T Nadia T is offline
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Join Date: Nov 2011
Location: Eugene, OR
Posts: 16
Thank you, Catherine. I'm sending warmest wishes back your way.
I'm a big fan of Jefferson Public Radio by the way.
Nadia
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  #8  
Old Fri Apr 6, 2012, 06:51 PM
cathybee1 cathybee1 is offline
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Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
Me too, Nadia! I love JPR too, in fact just made a pledge today!
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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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  #9  
Old Mon Apr 9, 2012, 05:31 PM
Nadia T Nadia T is offline
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Join Date: Nov 2011
Location: Eugene, OR
Posts: 16
We may have pledged the same day!
There's a chance my partner and I will be driving down the Coast to Calif. in late Sept. If we do, I'll let you know in case we can make a detour.

I hope all is going well for you both.

Nadia
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  #10  
Old Tue Apr 10, 2012, 12:52 AM
cathybee1 cathybee1 is offline
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Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
That would be awesome, Nadia!
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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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