Hairy Cell Leukemia: What were your symptoms before treatment?

Posted by emeraldeyz68 @emeraldeyz68, Mar 3 11:00pm

Hi, I just found this website via a webinar on the HCL Foundation website. I've learned a lot since my diagnosis via a blood test confirmation on Nov 27, 2023. I'm just curious what symptoms others have experienced before any treatment. I've read what's put online in research, but I'm really looking for those who have it, especially other females since I've read it's more rare for females vs males (4:1). I was in an "HCL" group on Facebook but it wasn't for HCL, it was ALL, AML, CLL and CML discussions, so I'm really hoping to find others I can actually relate to. Thank you

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

ptannie | @ptannie | Mar 4 9:54am

I was diagnosed with HCL in November, 2022. I've found this Facebook group to be very informative and supportive, https://www.facebook.com/groups/hairycellleukemiasupport/ Early in treatment, I connected with a lady there who was on the same time line as me and we private messaged a lot through the process to share experiences and support each other. Before my diagnosis, I was experiencing a lot of what I thought was joint pain, all over. I felt massively inflammed everywhere. For 18 months before diagnosis, a rheumatologist had me try 3 different auto-immune suppressants to treat what was labeled as psoriatic arthritis (misdiagnosis). I felt light headed when exerting myself and had a lot of bruising (also the last medication's side effect). I asked for a rheumatology second opinion and he said we should check platelets to make sure it was the medicine and not low platelets responsible for bruising. All my blood counts were dangerously low. I passed out at a followup appointment and when straight to the hospital for 5 days, 2 blood transfusions and bone marrow biopsy. I started treatment the next week. Apparently my prior CBC results hadn't come back from the lab or the misdiagnosis wouldn't have delayed my true discovery. I'm in remission now, after Cladribine and rituximab treatments. The bone/joint pain resolved after treatment.

Colleen Young, Connect Director | @colleenyoung | Mar 4 12:14pm

Welcome, @emeraldeyz68, I expanded the title of your discussion to reflect your question. Here are a couple of related HCL discussions that you may wish to explore.

- Hairy Cell Leukemia https://connect.mayoclinic.org/discussion/hairy-cell-leukemia/
- Hairy cell leukemia: What are the treatment options? https://connect.mayoclinic.org/discussion/hairy-cell-leukemia-2/

In addition to the helpful reply from @ptannie, I'm tagging other HCL''ers like @rllarocca @phyreguy79 @legacyrock @c1608 @jacg and @tallyteresa to share their experiences regarding symptoms, diagnosis and getting treatment.

@emeraldeyz68, what symptoms led to your seeking a diagnosis? What are the next steps for you?