Hi Donna Andrew, You are right about the maintenance drug, especially Revlimid. It is not chemo, its a type of immunotherapy. It works very well, as I hae been on it for six years. I have heard some patients being on Revlimid and Darzalex as Samar mentioned. I have a friend that was on Revlimid 10 mg for quite a while. Then switched over to another maintenance drug that was working very well. After a while she developed an allergic reaction to the new maintenance drug. She went back on good old Revlimid this time 15mg instead of 10mg. Everything is going well. Thank God that more drugs are being developed for all of us. I pray a lot for the researchers and doctors working very hard to keep us in remission, Its amazing that not so long ago that all of these new drugs were not available or discovered in a somewhat short period of time. Best wishes and prayers to all multiple myeloma patients. To think I never even heard of Multiple Myeloma just six years ago. Try to be careful what you read on line about Multiple Myeloma I remember crying in the beginning after I would read older articles about this disease. I do think being involved with support groups really helps a lot. My doctor gave me the names of two of her patients that went through stem cell transplants. It was very helpful!! Plus I am still friends with them, and speak to them on the phone frequently. They are both doing very well.

I had my SCT back in June 2022. I’m in full remission since then. M spike ups and downs can be caused by the type of chemo meds used in maintenance so my doctors are not concerned with this. I’m in a clinical trial using Daratumad monthly which he says can cause the variance. You may have similar and I would ask.

Hello Samar, I was diagnosed in June 2017. I didnt even know I was sick. I had back pain, so my primary care doctor sent me to physical therapy a few times. My blood tests from my check ups looked ok. Finally, my primary care dr. sent me for a cat scan. Thats when the multiple myeloma was detected, I had fractures in my back as well. Made an appointment with a Multiple Myeloma specialist at Sloan Kettering in NYC for the following week. I was given a lot of tests, MRI, Pet scan, bone marrow biopsy, blood tests that were more involved then the kind you get for routine checkups, urine tests, cat test lots of tests, My daughter and I met with a lovely doctor, myeloma specialist. We spoke to her for a long time. She explained what I needed to have done. First, I needed five months of Revlimid, Dexamethazone, and Carfilsomid. It was not constant chemo, on two weeks, off one week, on again, off again on a schedule. I used my own stem cells.. A month or so after that, I went to the hospital in NYC for my stem cell transplant. Stayed there for two weeks. It really was not that bad. I was nervous before I went, but had a lot of support from the hospital staff. After two weeks, i went back home. I needed a whole list of things to be careful with. I had the stem cell transplant in May 2018, I have been doing fine since then., On May 1st 2024 it wil be six years already.. I see my doctor every three months for my checkup with my myeloma specialist. I have been on Revlimid 10mg maintenance. On maintenance three weeks, off one week, then repeat again.. I live in NJ, so sloan Kettering has four satellite offices in NJ so you do not have to keep going to NYC. I see my specialist in NJ every three months, nice and easy. There are also satellite offices in parts of NY as well. One thing that is very important, no matter where you live, you need to see a Multiple Myeloma specialist. This is a somewhat rare type of blood cancer, that needs doctors that are very familiar with the in's and outs of this disease, the latest in the various medications that are available, and the various types of myeloma. God bless all, and prayers too, A cure will hopefully be not that far off. Sunny

Dianel
I was in remission for 5yrs after my first transplant and 7,5yrs. after my second transplant but for a very long time after I was sleeping 20hrs.out of 24hrs. It took me about a year to recover and I still have to take naps. Being fatigued is just a wonderful side effect of the MM.

Yes the beginning is just a blur for me but it was a very long busy year.