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I have what?

This topic has 2 replies, 1 voice, and was last updated 14 years, 8 months ago by jaxem.

Viewing 3 posts - 1 through 3 (of 3 total)

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August 12, 2009 at 1:16 am #22208

jnos
Member

In April, after having a routine blood test at my annual ob/gyn appointment, discovered I was anemic..not iron, not B12, on to onccologist, more blood and then BMB, I was given a slip of paper with "myelodysplastic syndrome" written on it. Assured I did not have cancer, was sent home to watch and wait. Then on to Northwestern Memorial Hospital in Chicago for a second opinion. Yes, I do have MDS, RARS, with 2% blasts. She said "I want you to leave here feeling good". Sure…..after telling me I have a chance to live another 10 years. My HGB goes down each month..10.4 in July, with RBC being below normal for the first time at 3.30. I am devastated. I’m only 60..my mother is 87 and I am her caregiver. I work full time. I have grandchildren I want to see grow up. I just can’t believe it. Where else should I go? Mayo, M.D. Anderson? Sorry to ramble on. I just can’t get my head around this.

August 13, 2009 at 7:57 am #22219

katydid
Member

hey jnos – join us on the do I don’t I thread – read bck over the posts and then join in – your thoughts would be valued and welcome

Cathie

August 16, 2009 at 1:20 am #22226

jaxem
Member

jnos
sorry for the diagnosis. many people with RARS have lived long & fruitful lives. it would be nice to know what’s causing your HG to be so low. there are a few injection meds which people have learned to take that have been beneficial to them. Good choice going for a 2nd opinion. If you’re looking for a 3rd opinion, I recommend the Univ. Minn in Minneapolis which is at the cutting edge of technology for MDS. You should go to a place that does a lot of transplants and are fully setup to treat the disease like Minnesota. I’m not a believer in watch-and-wait treatment for MDS unless all clinics have the same opinion. good luck to you!!
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