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Hairy cell leukemia: What are the treatment options?

Posted by legacyrock @legacyrock, Oct 31, 2023

I’ve been diagnosed with hairy cell leukemia. What are treatment options? I’ve read that with the research in the past couple of decades that chemo isn’t the only option.

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nicholascatman | @nicholascatman | Nov 2, 2023
In reply to @phyreguy79 "Hello, I was diagnosed in Dec 2013, I've only had chemo. The first round went well..." + (show)
@phyreguy79

Hello, I was diagnosed in Dec 2013, I've only had chemo. The first round went well and with little discomfort other than the loss of some taste and smell. Ist round was just cladribine.
2nd round some 5-6 years later, I was given some rituximab but had a bad reaction to it. No one has been specific about the reaction and how it affected nerves in my shoulders. I finished my week with just the cladribine. The use of my shoulders came back and I'm back to playing hockey and golf.
HCL can be managed.

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I was diagnosed in 2012. I just received my first treatment in August 2023 of cladribine for 5 days. Only the fourth day I had chills & then a temp. Next day I was fine. I was tired for about a week, now I feel great again.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 8, 2023
In reply to @nicholascatman "I was diagnosed in 2012. I just received my first treatment in August 2023 of cladribine..." + (show)
@nicholascatman

I was diagnosed in 2012. I just received my first treatment in August 2023 of cladribine for 5 days. Only the fourth day I had chills & then a temp. Next day I was fine. I was tired for about a week, now I feel great again.

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@nicholascatman, do you continue with regular follow-up appointments? How often? Are you on maintenance treatment now or continue with surveillance?

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nicholascatman | @nicholascatman | Nov 9, 2023
In reply to @colleenyoung "@nicholascatman, do you continue with regular follow-up appointments? How often? Are you on maintenance treatment now..." + (show)
@colleenyoung

@nicholascatman, do you continue with regular follow-up appointments? How often? Are you on maintenance treatment now or continue with surveillance?

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I’m finished with treatment. My doc said see ya in 6 months for blood work. I feel really lucky .

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legacyrock | @legacyrock | Mar 15, 2024

What if any meds were you given for pre treatment and/or during treatment for hairy cell leukemia?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 15, 2024
In reply to @legacyrock "What if any meds were you given for pre treatment and/or during treatment for hairy cell..." + (show)
@legacyrock

What if any meds were you given for pre treatment and/or during treatment for hairy cell leukemia?

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@legacyrock, can you explain what you mean about medications that you would get prior to treatment or during treatment for HCL? Are you referring to medications that would help reduce side effects of treatment?

What treatment are you getting?

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emeraldeyz68 | @emeraldeyz68 | Mar 16, 2024

I was diagnosed in late November. I’m having a BMB in a couple weeks. I’m very lucky to have one of the few elite Drs treating me. He told me most likely chemo & radiation with the common drugs used for HCL (I’m tired, I forget the names but start with C & R, I think). My BMB will determine dosage amounts, duration and anything else they may find which is Hopefully nothing but they’re concerned I may have a secondary cancer. Fingers crossed it’s just the numbers being wacky and I don’t!
But he never mentioned to me anything other than chemo & radiation and I haven’t read about any other treatment options, and I trust him more than anyone considering his background and being one of the top among others in the world at one of the Center of Excellence for HCL

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legacyrock | @legacyrock | Mar 27, 2024
In reply to @colleenyoung "@legacyrock, can you explain what you mean about medications that you would get prior to treatment..." + (show)
@colleenyoung

@legacyrock, can you explain what you mean about medications that you would get prior to treatment or during treatment for HCL? Are you referring to medications that would help reduce side effects of treatment?

What treatment are you getting?

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Sorry for the absence. I have gotten answers for my question. They were the typical meds prescribed is what I’ve found. Anti nausea, something for the acid buildup up and the other I believe was a antibiotic. I am on the wait and see program because I don’t have any symptoms and my numbers, which I have checked monthly, are stable.

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