Oh Vicki, thank you for this great information. Yes, I have a my chart account. So much easier🥰

@A MyMyelomaTeam Member

Hi Donna,

Thanks for the explanation. On my next doctor's appt in August 2025, I'm going to ask him if the clones in the BMB he gave me in 2024 are different from the BMB I had prior to treatment in 2023.

Also, when you call ClonoSEQ in November for your labs, it will be the last time. They have advanced their method of how they provide test results to their patients. They will ask you if you have a MyChart acct and if you do they will tell you to login and access your test results from there for now on. If you don't have a MyChart acct they will help you set it up. No more phone calls. I think you will like it.😊

Vicki7

Mentioned Users

A MyMyelo...

Hi Vicki, I don't bother with blood based Cloneseq testing. I go by my yearly one from my bone marrow biopsy. Emory got my first bone marrow biopsy from Northside Atlanta and sent it to Seattle to do the Cloneseq testing. My most recent report states that I still have the clones I started with. It's important to have our first bone marrow biopsy tested before treatment, so they can see how our myeloma changes over time. Dr. Nooka did explain why I needed the first bone marrow biopsy tested for MRD. He knew it was way positive. But he said it was a way to see it I was developing new clones or/and getting rid of the original ones. Also, he told me that one third of myeloma patients never reach mrd negativity. They still can still do well. I called the Cloneseq people. I set up an account and got copies of my report emailed to me. I read through it carefully and found where it said I still had the original clones I started with. Mean little monsters.

Dear Vicki7, I will take a picture of your notes and give it to my pharmacist. I will be getting these pills from I think at the Oncologist office I think but yet CVS pharmacy was the note I received so we shall see but I am going to insist Dr. Reddy I don't need anymore trouble than I already have.i will let you know, thanks or the heads up.

Jaefra10, I have had MM for 6 years now, I started on Revlimid, but it was too harsh for me and stopped within one month. They gave me Pomalyst and daratumumab, and I have successfully been on the two for 4 and a half years, and for the last year I have been taking a Daratumumab shot in the abdomen, which means less time in infusion. There are lots of combinations that fight MM, find one that works the best for you, you should not have to suffer on your cancer meds., there are too many good solutions to fight this cancer, talk to your doctor. Good luck to you, I was 75 when diagnosed and I am happily 81 today because of these meds.