Others out there with CEL (Chronic Eosinophilic Leukemia)?

Posted by John R A @johnra, Feb 26 7:10am

I know there are at least a few. It would be nice if we could start a new discussion just for us so that we could compare notes.
I have had CEL for about six years, three diagnosed and treated. I use hydroxy urea every day and it controls my eosinophils at a moderate level and I have only minor eczema like plaques on my legs and arms. They can be pretty itchy. Only future hazard is conversion to ACL which would not be good.
I am looking forward to meeting you. My name is John, I live in Jacksonville, FL.

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

lindaibm | @lindaibm | Mar 25 5:38pm

In reply to @lindaibm "Yes, my sister. I will forward this link to her. Thank you so much!" + (show)

Thank you. I sent the link to her.

lindaibm | @lindaibm | Mar 23 9:21am

Yes, my sister. I will forward this link to her. Thank you so much!

Lori, Volunteer Mentor | @loribmt | Mar 19 8:17pm

In reply to @lindaibm "Hi Lori, Can you please help find posts or a group that has been diagnosed with..." + (show)

Hi @lindaibm Sometimes the planets align and I feel like a fairy god mother. I found exactly the support group you’re looking for regarding Philip’s CPAP machine.
https://connect.mayoclinic.org/discussion/cpaps-and-cancer/
I hope this helps you out. Did you or a loved one use this machine and now have cancer?

lindaibm | @lindaibm | Mar 19 6:39pm

In reply to @loribmt "Good morning, @johnra I’ve scoured our forum for other members who have Chronic Eosinophilic Leukemia so..." + (show)

Hi Lori,

Can you please help find posts or a group that has been diagnosed with cancer and used a Philip's CPAP machine? I'm not having much luck. Thank you!

John R A | @johnra | Feb 27 8:28am

Noone!!?? That's amazing. I had been going to dermatologists for about two years for treatment of extremely itchy patches of skin mostly on the backs of my legs and some on my arms. I see my PCP regularly and have annual blood tests. He noticed that my eosinophils were climbing and well our of normal range. I had a marrow blood sample taken and the mutation for CEL was identified. My Dr at Mayo Jacksonville started me on Hydrea (hydroxyurea) immediately. I still get occasional outbreaks of the exzema like plaques, and treat them with tacrolimus. Hopefully my CEL does not convert to AEL.

Lori, Volunteer Mentor | @loribmt | Feb 26 8:05am

Good morning, @johnra I’ve scoured our forum for other members who have Chronic Eosinophilic Leukemia so that I could help connect you. You’re a rare bird!

This is a great idea to start a new discussion about CEL. Be patient, it may take a little time for people to start trickling into the forum. But I’m a firm believer of “If you build it, they will come.” ☺️

It’s encouraging to hear you’re maintaining status quo after having this for 6 years. How were you finally diagnosed 3 years after the onset? What were your symptoms?