Posted by wellness3070 @wellness3070, Jan 5, 2017

Anyone out there wishing to discuss above diagnosis?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I was diagnosed with Myelofibrosis almost 2 1/2 years ago. Lost 50 pounds, have tremendous fatigue, pains that come and go in various spots.

Went to the ER after a long night of abdominal discomfort and chronic constipation. A PetScan indicated possible presence of a second, but extremely rare, blood cancer called Erdheim Chester Disease (ECD).

A couple biopsies later, ECD was confirmed.

After consulting with the few medical experts around the globe who follow ECD (including Mayo), my oncologist prescribed Cotellic by Genentech.

Very quickly, my medical condition improved by perhaps 50-plus percent!

It seems that my symptoms were coming from the ECD as opposed to the Myelofibrosis all along and I could have been treated a year earlier as the ECD showed up a year earlier on a CatScan ordered by my urologist looking for a kidney stone, but nobody read the report carefully. Bad primary!!!

What’s my point here? Get a PetScan!!! Your symptoms that you think are coming from your Myelofibrosis might not be.

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