Anyone with MDS in Oregon

[Nadia T]

I'm in Eugene, diagnosed 7/11. Would love to contact people on the West Coast or nearby.

[cathybee1]

Hey, Nadia. We are in State of Jefferson :).. south of Medford on the California side.

[Nadia T]

I'd love to talk with you. My email is ntelsey@gmail.com
Nadia

[johnrb]

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

[Nadia T]

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

[cathybee1]

Nadia, I am sending prayers your way.

[Nadia T]

Thank you, Catherine. I'm sending warmest wishes back your way.
I'm a big fan of Jefferson Public Radio by the way.
Nadia

[cathybee1]

Me too, Nadia! I love JPR too, in fact just made a pledge today!

[Nadia T]

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

[cathybee1]

That would be awesome, Nadia! :)