I met with EOS specialist Dr. Jason Gotlib at Stanford Cancer Center on Monday. He still wants to completely rule out any "secondary" causes of elevated EOS before arriving at a diagnosis of HES (hyper eosinophilic syndrome).
Once I've tapered off the steroids in a few weeks, I'll arrange for allergy testing. This is just a matter of doing due diligence because I don't seem to have any allergy symptoms. And Dr. Gotlib is the first to acknowledge that allergies rarely cause EOS to soar into the sky-high "severe" range that mine reached last summer.
So. . . no quickie diagnosis and no quickie cure. If it's determined I have HES, Dr. Gotlib would like to include me in a clinical trial of a monoclonal antibody called mepolimuzab. The drug does a great job of controlling EOS without all the harmful, long-term side effects of steroids.
And if "monoclonal antibody" rings a bell, it could be because I've written about another miracle drug in the same category. Rituxan (aka Susan's relapse prevention), the quarterly maintenance drug I take through an IV, is in the same drug class.
And if "monoclonal antibody" rings a bell, it could be because I've written about another miracle drug in the same category. Rituxan (aka Susan's relapse prevention), the quarterly maintenance drug I take through an IV, is in the same drug class.
11 comments:
Hope you get to the bottom of it soon!
Between you, God, and good doctors with divine ideas, I am confident there will soon be a definitive diagnosis and plan. It's great that you take such a proactive role in being your own medical advocate. I am always shocked by how many patients sit by quietly and wait for the medical community to take charge.
Praying for right answers, good options, and more brilliant days filled with food and fun!
As always you move through these health issues with intelligence, courage and poise and inspire us all. I am sorry I missed your call when you were in S.F. I think I was outside urging a small beagle to go potty in her designated spot.
Am glad you took the initiative. Sorry there were no fast answers. I guess it is one time when one wishes for a quickie! ;-)
What did you think of the Stanford guy? Were you glad you went?
Thanks, Ronni.
Sue, Proactive is always so much better than reactive, isn't it.
Barbara, So sorry I missed you. Hope to do a Sacramento detour next visit.
Trish, I should have known I wouldn't be getting a "quickie."
Margaret, I really liked the doctor. Very smart, unpretentious, good communicator. Just the kind of doctor I love.
Happy May Day and welcome back! You named a worm after me, and I've planted coriander for you.
Isn't it awfully coincidental that both meds are in the same class? Could that mean that both things are connected somehow?
AH, Thanks, I love coriander.
Janet, It may seem like a coincidence, but it's really not. There are probably 20 different types of monoclonal antibodies that fight everything from cancer (various types) to graft versus host disease.
Hey! I like your blog!!!
I am a cancer survivor and like you, I am still looking for the perfect purse!!!
i read your blog for the first time as i recently created one of my own just wanted to say hope u get better soon....
its amazing and great to see someone take all of this in a positive way and try and get the best out of each day
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