MLL Gene

[Rich]

I had my one month follow up today and my results are:

Moderately hypocellular marrow (30-40 percent) with mild myeloid hypoplasia
Mild erythroid megloblastiod changes and mild megkarycoytic dysmorphic features
MLL gene mutation

My doctor wants to wait 3 months and do more blood work. Should I be concerned? I am 40 years old and it’s been 5 months already. He says these types of things take time to figure out. Thoughts?

[Barb]

Hi 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

[Rich]

Thank you Barb, great articles. My original doctor (Hoffman) at Sinai specializes in MPN so I will look for another in NJ at one of the centers for excellence. Do you recommend anyone in NJ I can seek out?

[Barb]

Rich,
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

[Author]

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