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Barb
ParticipantThis one came from the Celgene page. They once told me to not worry they would make sure I would get Revlimed if I needed it. I transformed to leukemia before I ever did, but hopefully they are true to their word.
http://www.celgene.com/patients/celgene-patient-support/
Let up know how it goes.
ParticipantRich,
I am sorry, I am in Ohio and I am clueless about NJ. However, Marrow Forums has a list of Centers of Excellence, and National Cancer Institutes. They list 2 in NJ: New Jersey:
The Cancer Center, Hackensack University Medical Center MDS Foundation Center of Excellence
Cancer Institute of New Jersey, Robert Wood Johnson Medical School NCI Comprehensive Cancer Center.http://www.marrowforums.org/resources.html
Another resource for you in yoour search might be The Leukemia Lymphoma Society. The main site is lls.org
Best wishes in finding the right treatment center for you. Please share how it goes for you.
Barb
ParticipantHi Rich,
I’m curious, does your doctor specialize in MDS? The MLL gene tends, to my understanding, to be related to higher risks in both MDS and AML. I were you I’d be looking at a second opinion.http://www.mdsbeacon.com/resources/mtgs/ash2013/abs/2746/
The second article is specific to leukemia work MLL amplification, which is different than translocation.
http://atlasgeneticsoncology.org/Anomalies/MLLampliID1547.html
ParticipantJennifer, I wish I had answers for you. Other than the fact that some blasts are CD 34- (and that is the main marker flow cytometry seems to use in PB), I don’t know. I asked the hemo/onco that question Friday. He said he was going to figure out the answer. I’ve now had 3 peripheral smears with 10, 6, and 4% blasts, all different pathologists. The flow cytometry said 1%.
Nonetheless, BMB said 34% blasts, even tho less than 5% were CD34+. I start 7+3 induction Thursday. Oh, I get another BMB Tuesday. They are not waiting on those results to start chemo.
ParticipantHi Mark, inner ear infections can cause those symptoms. I don’t know abot anything else.
BarbParticipantMdsfound, thank you for responding. Since my post I have learned that some blasts are CD34-. Even though my marrow only has less than 5% CD34+ blasts, my total blast count is 34%, welcoming me to the world of AML. 5q-, trisomy 8, and amplified MLL gene. I am being transferred to The James Cancer Center at Ohio State U. I meet the new hemo tomorrow.
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