What’s your Treatments Meds
How long have you been on them

1) What’s your most recent Labs for B2M, LDH, CRP, IgG, IgA, MSpike, Kappa and Lambda, and any High Risk Factors.

2) From your CBCs - RBC, WBC, Hgb and from your CMPs - BUN, Creat, Alt, Ast, eGFR

As a general perspective (but not necessarily conclusive) The first group 1) define your current MM Activity and the second 2) defines the condition of your kidneys, liver and production of healthy blood cells (definitely diminished by both MM Activity and MM Treatment Meds themselves)

Knowing these Labs can help determine how well you’ve responded to Treatments that can justify additional Testing like a new PET/CT, MRI, BMB and clonoSEQ MRD Negative Test (these are the Definitive Tests for your Current Condition).

It’s important to understand that a significant amount of MM Treatment is to simply Follow the Game Plan Playbook (Standard of Care), without Considering a Patient’s Actual Response to their Treatments.

I just watched a person with 100% bad Plasma, as per his last two years of BMB, who was IgG 8000+, MSpike of 8+, and t4;14 High Risk and was on a Treatment Plan for a Year (DarzFasPro + KRd), actually Respond to having Completely Normal MM Markers in 8 weeks and when the additional Tests of PET/CT, MRI, BMB and clonoSEQ MRD Negative Test were performed (his insistence - not his Treatment Institution), he had returned to Zero Bad Plasma and in Complete Remission (MRD Negative at 10 -6 no Cancer per million cells tested as per his new BMB). He’s now 3-1/2 months off All Treatments and his RBC, WBC, and Hbg are returning to Low Normal (first time in over 4 years).

It’s important to Know and Trust your Labs and use them to help Guide Your Choices.

Also, As Per the Dec 2023 Dana-Farber Press Release - Keep your SCT In Reserve for If All Else Fails.

In 2021, during Induction Treatments, I elected to Not Collect my Stem, due to the Chemicals Involved and to Not get a SCT, due to the long term damage to the Bone Marrow Microbiome. My Choices have proven to be correct for me. I remain MM Cancer Free and on No MM Meds, now at 5 years since my original Diag that also included a t4;14 high risk factor.

Not saying everyone can have the same Outcome but I know for sure that the Treatments are far better today and that avoiding being Overmedicated is Essential - Actively Analyzing Labs does provide a far better strategy than just following the Standard of Care Plan - I’ve seen this work very well for many others.

Unfortunately, I do understand. Life is hard enough without myeloma. I think about stopping treatments often. I talk to my Oncologist and specialist about it often. I am lucky that even with my high risk myeloma, It has been under control since my transplant in 2017. I went through several treatments before they found something that worked. I was very depressed and did not think the transplant would work, but I got a very good partial response and the Pomalyst and Darzalex I started before transplant is still working. I've never been mrd negative. But I do mostly okay except for the awful fatigue. Anyway, what ever decisions you make, I'm here. 🥰

I have recently stopped treatment and am in hospice care. My husband and I had discussed this at length before he died suddenly in February. I had been in constant pain, unrelieved by medication, for several months before his death. I have no desire to continue treatment so I can be in constant pain. I am at peace with my decision.

Mary,
Some people choose quality of life. Treatments do have side effects. Palliative Care can help with pain medication. Hospice is also helpful. If you are taking Revlimid and have been on it a long time, some people are stopping. Some clinical trials are promising, but the side effects look severe. Whatever you decide, it’s okay. There is no wrong decision. It’s your decision.
Paula🌹

Hi Mary, have you talked to your team about changing treatments? If you current treatments are making you miserable, maybe there is something else they could try. There are more options now. Get a second opinion from another specialist if the first one doesn't listen to your concerns. Is your myeloma currently well controlled?