Anyone with Plasma Cell Leukemia or family?

@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

Good morning,
Well , we are definitely in this together. You and I are going to beat this !
Ask me anything, I’m here to help.
Like your mother , diet, exercise, and rest is the key.
I’ve had Prostate cancer, (45 radiation treatments), Colon cancer, partial removal, now this blood cancer . Giving up is not in the blood .
Have a great day
Jim