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Hairy Cell Leukemia

Blood Cancers & Disorders | Last Active: Apr 10, 2023 | Replies (39)

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@c1608, I like how @becsbuddy - from one nurse to another - reminded you how you might tap into your nursing persona, even as your role is different as a caregiver for your husband.

You'll notice that I moved your message to this existing discussion:
- Hairy Cell Leukemia https://connect.mayoclinic.org/discussion/hairy-cell-leukemia/

I did this so you can read previous posts (old and new) and connect easily with members like @ptannie who has also recently been diagnosed, @tallyteresa who’s husband has had HCL for 14 years and @phyreguy79 who’s had HCL for 10 years. They will journey along with you.

As you try to get some sleep tonight keep a pen and paper beside your bed. If you mind starts racing, write your questions and worries down. Don't let them whirl around. At the bottom of this article from Mayo Clinic, they provide questions you may wish to ask your hematologist-oncologist
Hairy Cell Leukemia: Questions to Ask https://www.mayoclinic.org/diseases-conditions/hairy-cell-leukemia/diagnosis-treatment/drc-20372962

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Replies to "@c1608, I like how @becsbuddy - from one nurse to another - reminded you how you..."

@c1608 This site has great educational material, listing of centers of excellence for treatment, online support groups and live webinars. https://www.hairycellleukemia.org/about-us
I’ve gotten wonderful small group and individual support from member of this support group: https://m.facebook.com/groups/hairycellleukemiasupport/
The third resource that I would encourage you to explore is NIH. The lead investigator is Dr Kreiman. He is very responsive to inquiries. I send my blood there currently for a study on Covid-19 and HCL. kreitmar@mail.nih.gov
I had a scary couple of months but on the other side of all that and happy to help you if I can.