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

He's in a lot of pain. after his last 2 ER visits and 1 inpatient stay he finally qualified for the Homebound program (which I've tried to look up and all I found out is a nurse coordinates care so the patient doesn't have to come into Mayo as much). That nurse (Brenda) as of this morning prescribed him something stronger than a lidocaine patch and Aleve for his broken rib pain. He's been in palliative care since his 1st round of chemo. I understand with this disease it's a matter of time. We can't beat it, and it doesn't go away. All we want to know is what to expect. how does this disease progress? We know it's going to kill him but is it going to be constant pain from broken bones or something else? Articles I've found online talk about kidney failure. My dad asked his hematologist at Mayo last week, what kind of timeline he can expect with treatment and what kind of timeline without. He didn't get any useable answer. Articles say without treatment 6-12 months. What will those months look like? What can my mom (who recently got diagnosed with early Parkinsons expect) my dad doesn't want to "worry" my sister and me so getting information from him and my mom is hard. Add his dementia to the mix and it's been a very hard year. Currently my dad gets bloodwork done monthly to monitor plasma levels in his blood. Levels have been rising the last two months and this month rose faster than last month. But the, " Hemotologist isn't concerned yet." I really want to email his dr and ask at what point will they be concerned? how much worse is it going to get when reaching across his body for a drink breaks a rib and isn't concerning to the dr. i appreciate you taking the time to respond. i understand you're a volunteer and just helping. i'm frustrated and helpless. thank you for listening

@knikriverstudios

Hi Jim,

You have been through a lot! You are a true survivor!!!

Giving up is not an option.
Michelle

my dad is receiving care at Mayo Clinic. he went through a round of subq chemo infusions for about 7-8 months. then as his hemotologist here said. it went to sleep. it came back in November. his monthly bloodwork since has shown that things are growing, this month faster than last month. he's has biopsys scans etc. Since it's incurable and the last round of treatment damn near killed him, he's reluctant to go through treatment since when asked the doctors have failed to give him any kind of answers when he's asked how long does treatment buy him vrs how long he has with no treatment.

@krismikkalson

Hi, I just saw your message. How is your dad? I hope he’s doing well. I went through a great deal of pain from Plasma Bone Marrow disease, Multiple Myeloma. lidocaine patch, morphine, didn’t help me. Palliative Care prescribed all kinds of pain killer. Nothing helped. Finally a anesthesia doctor from Palliative Care prescribed Methadone 15mg twice daily while removing all other pain medications. I was under Palliative Care Anesthesiologist’s supervision while transitioning to methadone while I was in-patient at a hospital. This med alone stopped all the pain. I was able to live pain free while under Tx. Now I’m in remission and trying to taper off the last 5mg of Methadone with Palliative Care’s help.

I hope this msg might help blood cancer peers suffering from a great deal of pains.

@krismikkalson
Have they given him , or talked about stem cell transplants?
I was shocked that they suggested it for my father who was 71 at the time but I guess it takes well to people 63 and above, and can prolong life for them a little longer. My dad was given 9 months to a year and after stem cell transplant, he gained 3 more years. It's been 3 since he passed and I miss him everyday. Everytime he had a blood transfusion, he would feel like his old self for about a week then it would break him down again. It's so hard having a loved one diagnosed with this. I hope things improve for you and your dad.

@mother2109
Hi Michelle
Has your Oncologist ever had a PpCL patient ?
Just wondering , mine hasn’t.
Stay the course !
Jim