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Anyone with Plasma Cell Leukemia or family?

Posted by Kris Mikkalson @krismikkalson, Jan 20, 2025

good day,
has anyone here been diagnosed or had family diagnosed with PCL?

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

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Suzanne | @mother2109 | Aug 21 8:38am

Hi Jim,
My Kappa Light Chain is 1.397 (down from 13k), 3.8 and 380. These numbers are from July 1. Don’t have numbers for August. Are these the numbers you’re asking for?
Have a Blessed day
Michelle

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knikriverstudios | @knikriverstudios | 2 days ago
In reply to @mother2109 "@knikriverstudios Hi Jim, Good question. I believe he has but I will confirm at my next..." + (show)
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@knikriverstudios

Hi Jim,
Good question. I believe he has but I will confirm at my next appt. He did introduce me to another Oncologist on his team who currently has a pPCL patient - unfortunately she was not very encouraging. My Hematologist is currently treating 3 other patients with pPCL
Met with Hematologist yesterday. If my numbers keep going down she is planing to do 2 transplants within 3 months - better odds of staying in remission. Rough road ahead!
Michelle

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@mother2109

Hi Michelle,
I’m concerned about you .
Wishing you the very best . Jim

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knikriverstudios | @knikriverstudios | 1 day ago
In reply to @mother2109 "Hi Jim, My Kappa Light Chain is 1.397 (down from 13k), 3.8 and 380. These numbers..." + (show)
Profile picture for Suzanne @mother2109

Hi Jim,
My Kappa Light Chain is 1.397 (down from 13k), 3.8 and 380. These numbers are from July 1. Don’t have numbers for August. Are these the numbers you’re asking for?
Have a Blessed day
Michelle

Jump to this post

@mother2109
Hi Michelle
Wow you’re going down quick . That is so awesome .
I’ll get my numbers mid month . I’ll be in touch.
So happy for you !
Jim

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lm0109 | @lm0109 | 1 day ago
In reply to @abby5 "@colleenyoung I am doing well. I've been on weekly injections since starting it. One more month..." + (show)
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@colleenyoung

I am doing well. I've been on weekly injections since starting it. One more month and then I will start getting the injection every 2 weeks. My doctor's plan is to keep me on the Teclistamab until it doesn't work any longer. I was told the drug lasts on the avg of 10 mos with my type of cancer. There are no specific plans in place but perhaps a clinical trial or try different meds when that time comes.

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@abby5 Hi Abby! I hope you don’t mind me asking you a few questions. Someone very close to me has multiple myeloma that recently transformed into secondary plasma cell leukemia, and she has just started teclistamab.

How were you feeling during the first few doses? Was the beginning of the treatment very difficult, with extreme fatigue or weakness?

Were your hemoglobin, platelets and white blood cells already very low before starting teclistamab?

And how quickly did you start noticing that the treatment was working?

Thank you so much ❤️ Your experience would really help us right now.

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knikriverstudios | @knikriverstudios | 17 hours ago
In reply to @knikriverstudios "@mother2109 Hi Michelle Wow you’re going down quick . That is so awesome . I’ll get..." + (show)
Profile picture for knikriverstudios @knikriverstudios

@mother2109
Hi Michelle
Wow you’re going down quick . That is so awesome .
I’ll get my numbers mid month . I’ll be in touch.
So happy for you !
Jim

Jump to this post

@knikriverstudio
Hi Michelle
Yes , thank you .
These numbers coincide with the Mspike .
I’m learning
Jim

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