Hairy Cell Leukemia

Posted by Bob @rllarocca, Oct 22, 2016

Anyone here fighting hairy cell leukemia? I was first diagnosed in 2012 and had a 7 day, 24/7 course of chemo using cladribine. My remission lasted 4 years, almost to the day. I recently completed another 24/7 course of cladribine and my oncologist says my blood counts are close to normal except for the red cells which are still low. These take the longest to come back. Are risks of secondary cancers, or reactions to the chemo common with hairy cell?

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

shing | @shing | Nov 9, 2022

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.

Lori, Volunteer Mentor | @loribmt | Nov 10, 2022

In reply to @shing "I just found out that my father has hairy cell leukemia. I know he's had lymphocyte..." + (show)

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.
https://www.mayoclinic.org/diseases-conditions/hairy-cell-leukemia/symptoms-causes/syc-20372956
https://www.cancer.org/cancer/chronic-lymphocytic-leukemia/treating/hairy-cell-leukemia.html
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?

Colleen Young, Connect Director | @colleenyoung | Nov 11, 2022

In reply to @shing "I just found out that my father has hairy cell leukemia. I know he's had lymphocyte..." + (show)

@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/

agre | @agre | Nov 17, 2022

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?

Colleen Young, Connect Director | @colleenyoung | Nov 20, 2022

In reply to @agre "Not sure how I need to respond to this discussion...while having a routine blood workup last..." + (show)

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?

agre | @agre | Nov 20, 2022

In reply to @colleenyoung "Welcome @agre. You posted perfectly. I'm confident that members like @shing @dustedeagle @rllarocca @phyreguy79 will appreciate..." + (show)

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.

vickismith | @vickismith | Feb 2, 2023

In reply to @agre "Not sure how I need to respond to this discussion...while having a routine blood workup last..." + (show)

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

vickismith | @vickismith | Feb 2, 2023

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

vickismith | @vickismith | Feb 2, 2023

In reply to @phyreguy79 "Hello, I was diagnosed with HCL in 2015. I just went through my 2nd round of..." + (show)

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...

Lori, Volunteer Mentor | @loribmt | Feb 2, 2023

In reply to @vickismith "The Ritux has severe side effects. Muscle spasms are one of them. The reactions or side..." + (show)

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?

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