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 .

@loribmt I have started on a horizon 2 clinical trial. I did 2 rounds of treatment and now am on the trial. Will have 4 rounds then stem cell transplant.
My main questions now are pain and transplant concerns.

@lisa47 Good morning, Lisa. I’m sure you have a ton of questions as to, what’s next?? With the plasma cell cancer, it’s closely related to multiple myeloma. So if it follows the treatment line, then the type of stem cell transplant you’ll be having is referred to as a ASCT (Autologous stem cell transplant) using your own cells.

When you’re ready for this portion of your treatment, I can provide you with more information. There are also many members in Connect who have had a ASCT as part of their treatment plan. Having the transplant helps keep you in remission and usually, the bone pain you’re experiencing now is diminished as the disease involvement is down.

How are you doing with the trial drugs?

@knikriverstudios; lisa47

I was diagnosed with primary cell leukemia in May 2026. (what a shock!) Oncologist immediately started me on weekly immunotherary. The plan is to have auto transplant between 4 and 6 cycles. Also take Revlimid (daily for 21 days, off 7 days). I'm 61. For months I knew something was wrong (tired all the time) and kept going to my doctor but whatever test they were doing did not pick up on cancer. Although both parents passed from cancer (colon and rectal), I did not ask doctor to specifically check for cancer, even with my history, I did not expect it at 61.
I agree doctors are not very forthcoming and don't give you the full story. I am yet to find anyone who has survived this dreaded disease more than 5 years. Does anyone know of long term survivors of PCL? Please share. Thank you