The things that dictate what kind of treatment you will be on after a stem cell transplant will be 1) the success of the SCT; 2) what kinds of treatment you can tolerate; and 3) the type of MM you have. Some people go off treatment when their bone marrow biopsy indicates an absence of MM cells. Most of us stay on some kind of treatment indefinitely. When (and not IF) that treatment stops working, there are lots of other treatments available. Staying on some kind of treatment plan adds years to our lives. I have been on some kind of treatment continuously since 2018, and I expect to be on treatment for the rest of my life. When talking to my medical team to determine what kind of treatment is best, I focus on quality of life. Personally, I look for quality versus quantity. But for those who want quantity, that's okay. Just be sure to discuss it with your doctor and your family. Ultimately, the choice should be yours. Best of luck! ~Sally

I figured that I would be on my chemo for the rest of my life too but life had different ideas and I only take this for 6 months then after that I have no idea.

I was taking chemo,Dexamethasone once a month but I was not able to take chemo for a while because of health issues so now I have a human immunoglobulin subcutaneously called Cuvitru once a week and the only side effects have been fatigue and nausea once in awhile which sure beats being sick in bed for a week out of every month and they are thinking that this treatment might be able to replace chemo.

Mepapermaker1 is right. In my case I have Kappa Light Chain MM with a 11;14 translocation, which makes it medium aggressive. t(11;14) is a chromosomal translocation (abnormality/mutation) in the q32 region of chromosome 14 , as well as in the q13 of chromosome 11. In multiple myeloma, t(11;14) may confer a worse prognosis for overall survival. My maintenance therapy , which I’ll be on till I die, is currently, 4 mg Ninlaro for three weeks, then a week off, 20 mg Revlimid for three weeks, then a week off, and 20 mg Dexamethasone when I take my Ninlaro. So it’s different for everyone, depending on the type and aggressiveness.

Julie478 - I haven’t been dwelling on how much time is left, but I have thought about end of life issues like planning a memorial service. I also saw a TV series called The Gentle Art of Swedish Death Cleaning. It had a big impact on me and made me think about being attached to “things”. I’ve started asking my adult kids what they are interested in. If there are things nobody cares about, I’m getting rid of it now. Some things I had in boxes that didn’t fit in our house, I gave it to them now if they wanted it. Otherwise, out it goes. It was very cathartic. I feel lighter knowing my kids won’t have this burden when I go.

I have also made sure my kids know my wishes and I have all the paperwork for various things like DNR, power of medical attorney, medical directives, and such. The hospital had a packet of information and forms I was able to fill out and have notarized right there at the hospital. Filling out the forms created an opportunity to discuss these things with loved ones. We Americans tend to avoid conversations about death.

Doing these things has helped me a lot. Rather than dwell on these issues alone in my mind, taking action was something concrete that I could do and the dark thoughts seemed to go away.