Hairy Cell Leukemia

I just found out that my father has hairy cell leukemia. I know he's had lymphocyte problems in the past but he doesn't communicate well. I'm just looking for people that might have some answers.

Hello @shing and welcome to Mayo Connect. Hairy Cell Leukemia is a rather rare form a blood cancer affecting the white blood cells. It’s generally a very slowly developing disease so your father may not require any treatment for a while. It will depend on the diagnoses and stage of his disease. If this was newly discovered hopefully he’s in the early stages and won’t require anything more than watchful waiting.

Here are a few articles that give you an overview of the disease.

There aren’t many conversations in our forum with HCL but I did find this discussion with a few members. It is older but you can reverse the order of the the conversations by clicking the link under the subject where it says “oldest to newest”. Click there and the latest replies will be first.

Hairy Cell Leukemia
https://connect.mayoclinic.org/discussion/hairy-cell-leukemia/

To help bring other members into the discussion, are there any specific questions you have?

@shing, I'd like to add my welcome. I have moved your message to the existing discussion that @loribmt suggested here:
- Hairy Cell Leukemia
https://connect.mayoclinic.org/discussion/hairy-cell-leukemia/

Not sure how I need to respond to this discussion...while having a routine blood workup last Nov 2021, I was diagnosed with HCL. Further blood work and bone marrow examination verified HCL variant.
I have an enlarged spleen, and many symptoms extreme fatigue, bruising and lower appetite. I was told that when symptoms get severe that I could either have the spleen removed or start chemo treatment. If I delay chemo does that compromise the spleen more?

Welcome @agre. You posted perfectly. I'm confident that members like @shing @dustedeagle @rllarocca @phyreguy79 will appreciate connecting with you.

Agre, you ask a good question about your spleen's health during the watch and wait period or if chemo would help. Have you asked your oncologist about the pros and cons of each treatment approach?

My VA Oncologist only discusses the two treatments when the symptoms get too bad. She focused on chemo or surgery to remove the spleen. I understand the pros and cons of each treatment per the VA.
Of course I then had to ask what the symptoms were and how does one determine the severity of the symptoms prior to making an informed decision...not sure I have enough information. After discovering this site, I just have more questions...which is why I'm now seeking an outside VA oncologist to determine what is my course of action.

Hi
I have HCL-V and had a splenectomy in Oct 2022. I just finished 5 days in a row of Cladribine and started Ritux weekly for 8 weeks but after 3 tries my reaction to it became severe so waiting for new plan

Feel free to ask questions. If I can help answer I will

The Ritux has severe side effects. Muscle spasms are one of them. The reactions or side effects for Ritux are
1. Ineffective
2. Death
And on from there...

Hi @vickismith I’m really sorry to hear that you had such frightening side effects with the Rituxan treatments. Hopefully an alternative will be found for you.

We need to be cautious so that your experience doesn’t deter others, for whom the medication is vital, from getting treatment. I just want to put this out here in the forum that most people don’t experience any side effects or if they do, they’re very minor. Rituxan or Rituximab is well tolerated by most patients and it definitely is a beneficial treatment.

The most common side effect happens at the initial infusion. The speed of the infusion has a lot to do with it. If there’s a reaction, the patient is given Benadryl or other medications to mitigate the reaction and the drip slowed significantly.
Was your reaction immediate or after a few days?