Anyone with Plasma Cell Leukemia or family?

@abby5 Thank you for sharing that with me. It’s always helpful to hear real stories. I’ll keep you in my thoughts and I hope the teclistamab continues to work for you!

👍

Wow, so much to go through. I was primary care giver for my parents. Dad had lung cancer and passed away at home with a little hospice support. Mom had a series of strokes and passed away 6 months later. It was a lot to go through and I still question did I do everything I could. But I tell myself, I did my very best for them at the time. The doctor ordered speech therapy for Mom. She hated it - she did it until she could say you're fired! Mom was a feisty one. But back to now..I have multiple myeloma. Last fall, it turned very aggressive and changed to plasma cell leukemia. I was in ICU for a week and reg room for 3 more weeks. Reg chemo didn't do anything, but then they put me on Teclistamab injections. That worked for me. But I was told it prob will only give me 10 months, then I'm not sure what the doc will do. I'm the meantime, I'm getting my affairs in order. Death will happen, sooner or later. I'm glad you have sisters, built in support team. I hope something I said helped
I guess I wanted you to know, you are not alone in facing tough times and decisions with parent care. Use this board, you have some great support from the other posters. And I'm available if you need me. Best of luck 🤞

Wow, so much to go through. I was primary care giver for my parents. Dad had lung cancer and passed away at home with a little hospice support. Mom had a series of strokes and passed away 6 months later. It was a lot to go through and I still question did I do everything I could. But I tell myself, I did my very best for them at the time. For instance the doctor ordered speech therapy for Mom. She hated it - she did it until she could say you're fired! Mom was a feisty one. But back to now..I have multiple myeloma. Last fall, it turned very aggressive and changed to plasma cell leukemia. I was in ICU for a week and reg room for 3 more weeks. Reg chemo didn't do anything, but then they put me on Teclistamab injections. That worked for me. But I was told it prob will only give me 10 months, then I'm not sure what the doc will do. I'm sorry if I already told you this on previous post , I'm not savvy with this yet! In the meantime, I'm getting my affairs in order. I'm 64 - how old are your parents? I'm trying to face death will happen, sooner or later. I'm glad you have sisters, built in support team. I hope something I said was helpful.
I guess I wanted you to know, you are not alone in facing tough times and decisions with parent care. Use this board, you have some great support from the other posters. And I'm available if you need me. Best of luck 🤞

I was just diagnosed with primary plasma cell leukemia on 3/30/26 at Mayo was being seen elsewhere for low back and rib pain for a couple months. Started treatment and looking for others to connect with.

Hi @lisa47 Welcome to Connect. You popped into the perfect discussion to meet up with other members who have also have experience with PpCL. You may have seen the replies by @abby5 @knikriverstudios @19lesterk @krismikkalson.
Do you have any specific questions for these members? What type of treatment have you started?

@lisa47
Hi I have Primary Plasma Cell Leukemia .
Jim /Alaska
One in 3 million you are also. I was diagnosed April 28 2025.
30 weeks CyBOR D
I’m off chemo since March. Taking a break from side effects .

Let me know if I can help
you with any knowledge I have . Stay Strong .