Anyone with Plasma Cell Leukemia or family?

Hi @mother2109 Learning that you have life threatening disease is one helluva a shock and shakes you to the core! PCL-plasma cell leukemia is a bit of a rare bird. It shares similarities with its ‘sister’ disease, multiple myeloma (MM), with having abnormal plasma cells. In MM the cells are confined to the bone marrow where PCL has the defective plasma cells circulation in the blood stream. Years ago there was little to be done. But from my understanding, with the newer treatment combinations culminating in a autologous stem cell transplant, long-term survival for primary PCL has increased significantly.

Drawing from my own experience with a highly aggressive blood cancer 7 years ago, it’s very important that you try not to focus on statistics and ‘what if’. Statistics are just ranges between patients with a similar disease who remain alive after a defined period, typically five years post-diagnosis. These rates help in understanding prognosis and treatment effectiveness, but they do not guarantee individual outcomes!! In most cases information is no longer collected past five years and data stops making it appear that it’s the end of the road! It’s not!
Had I paid any attention to the stats or given up hope, I wouldn’t be here. It’s crucial that you stay focused on a future!

You’re in the midsts of treatment that will help lower your leukemic cells. Your doctor is hoping to reduce them low enough for you to have an autologous stem cell transplant (ASCT - using your own cells) While the cancer cell rate is low in your body, you will have stem cells collected and saved to be rein-fused during the transplant. It’s less of a transplant but more so a means to replenish and revitalize your blood.
Once the cells are collected, you’ll have a day or so of reduced intensity chemo to rid your blood of any remaining cancer cells.
After that, your own stem cells will be infused back into your system. You’ll have a few weeks of recovery where you’ll slowly but steadily regain stamina.
You’ll most likely be given maintenance medication such as Revlimid to keep your cancer cells from taking over again.

So please don’t lose hope! This is your own journey and can’t be compared with anyone else. The treatment you’re currently on has been helpful for many people with plasma cell disorders including PCL.

I have much more information I can share regarding the ASCT when you’re ready. Do you live near where the stem cell transplant will be done or will you have to relocate?

@mother2109
Hi , it’s Jim I have PpCL also.Same story for me , tired ,exhausted , went to the doctor he ran a blood panel and sent me to ER. Hemoglobin 3.2 , transfusion, life flight to Seattle , Fred Hutch Cancer Center. Infusion for three weeks (chemo equaled , Hyper CD+ Bortezomib . Then back to Alaska , Then six cycles of CyBorD. or six months.
Currently on a treatment holiday, monitoring monthly MMblood Panels.
I’ve been looking for another one who has it and your the first ! Do you mind sharing information ? Are you in touch or heard of others in Mayo ?
Thank you Jim
I was diagnosed in May of
2025

@knikriverstudios

Hi Jim,
Good to hear from you. I will certainly share anything you need to know - we're in this together. As I mentioned I was diagnosed in May 2026. I am on my third cycle of the cocktail Daratumumab (Darzalex), Carfilzomib (KYPROLIS), a steroid, and Revlimid (21 days). The second week on Revlimid I am out of breath and extremely tired but the third week is the peak - brutal, can barely stand up for more than 3 minutes. My doctor recommend 2 transplants - the first to be done between 4th and 6th cycle.

Aside from modern medicine, I have started researching alternative healing as I believe the body can heal itself. My mom was first diagnosed with Myeloma (bone marrow only), the rectal cancer came later. After she did Chemo for myeloma, she was told the cancer would return in 1 year. The cancer never returned and she died of something else over 15 years later. She lived in Canada and they used her as a case study of someone who was not expected to survive that long. What did she do different - after her Chemo treatments she moved to Trinidad. Sunshine, socialization, daily walks, got her meat from the butcher and chicken from chicken farm where you pick your fresh chicken, by size, for the day. She ate healthy - fresh fruits and vegetables are abundant on the island. You buy from local farmers in market that don't use pesticides. Reduce stress and have a purpose. I have a 5 year old grandson who I want to be around for, to see graduate high school, etc.

I hope it's safe to say this here but I recently purchased 2 books, that come highly recommend:

Chris Beats Cancer (also a podcast)- Chris Wark
Radical Remission - Kelly Turner

Radical Remission is full of personal stories of people who used Western medicine along with changing their lifestyle and lived much longer than their doctors expected. We are suppose to do some of the work, along with our doctors.

I am working on my nutrition, exercise, getting rid of emotion baggage and my spirituality.

You can ask me anything and I am happy to share. However, you have been at this 1 year longer than me. I Did you do bone marrow? If yes, how bad is it? Did you need a full-time caregiver?

There are others on here with this disease, not many. I found a couple testimonies on YouTube.

Hope this was helpful!
Praying for us both.
Michelle

@loribmt

Thank you for your response. I feel much better after reading.

I live in Miami. The hospital is about 30 minutes away. My oncologist is at Mount Sinai Hospital (20 minutes drive). My transplant will be done at University of Miami.
I contacted Mayo for a second opinion and possible transfer for treatment. The closest one to me is in Jacksonville (@3.5 hours drive). I would have to move. However, Mayo assured me that I was in good hands at University of Miami. He said they are also up there and one of the best for Blood Cancers.

Please, any information you have on ASCT you can share is greatly appreciated. The plan is to do auto transplant, and I have my second appointment next week with doctor to discuss further.

Thank you for your response.
Michelle

@knikriverstudios

Hi Jim
Also want to mention - are you in the group ‘Blood Cancers & Disorders Support’? There is a section in there ‘Anyone with Plasma Cell Leukemia or family’. Check it out if not there already.

Michelle