I was diagnosed with MGUS at age 47. It didn't worry me a lot because I knew the majority of people with MGUS never get myeloma, and I was monitored according to my doctor's recommendations. However, I was diagnosed with myeloma in 2016. The time around diagnosis was incredibly hard. I had just moved, and the new doctor allowed an unconscionable delay between signs of myeloma and definitive diagnosis, during which time a huge tumor grew in my right pelvic bones, leading to the worst pain I have ever felt. Although it is much better, it continues to hurt constantly to this day, and I still use narcotics.
I sought a myeloma specialist in Portland, a five hour drive away, but usually flew with a wonderful organization called Angel Flight. Induction treatment was radiation for the terrible, painful tumors, followed by carfilzomib, revlimid, and dexamethosone for five months. My oldest son, who is a pharmaceutical scientist helped me so much during this time, both helping to evaluate the treatments and flying out often to be with me. And my partner Katy patiently found foods I could eat, and took me outside to be in nature, first in a wheelchair and then with a cane.
The first couple of months remain surreal in my mind. I was in shock and pain, and very anxious. More recent years have been more normal than I could have imagined at that time.
I underwent a stem cell transplant in 2017 with SCCA in Seattle. They were wonderful, and I have siblings there who did some backup care of me when Katy or son Ari couldn't be present. After the stem cell transplant I was in complete response, but had a very small lingering monoclonal spike. They said it might disappear, and it did, so that I was in stringent complete response with negative MRD, and I have not relapsed on revlimid maintenance. In this sense I've been very lucky.
I can now walk and hike 5-6 miles on good days, often without a cane.
Even though I know I've been very lucky, the burdens of living with myeloma do weigh on me. Pain is a daily burden. I have osteonecrosis of the jaw due to taking bisphosphonates. I am required to carry out exceedingly thorough dental care because if I ever lose a tooth the resulting wound may never heal. I worry. I've had quite a bit of digestive problems, which may be due to the revlimid I've been taking since transplant, or may be partially for other unknown reasons. So, experience with diarrhea, nausea, and constipation, and I have a lot of ideas for how to deal with all of them.
I like talking with people and could share my experiences and empathize with a coachee. I'm not really an expert in anything, but all of us who have myeloma are a kind of expert that those who don't, are not. I am bilingual in Spanish and hope to help out with Spanish speakers if the need arises.