I am on 21-day cycle maintenance doses of:
monthly Darzalex (daratumumab) infusions and Xgeva injections
3x monthly Velcade (bortezomib)
injections and dexamethasone (corticosteroid pills).

I’ve responded well to treatment and lab work has improved enough to put me in remission. My side effects have now mostly dissipated. I still deal with significant and frustrating edema caused by the steroids. It causes a 15- to 10-pound weight gain in a two-week period. Then it slowly gets better with diuretic medications. It is a balancing act. Hoping to further reduce the steroids. Initially it affected my kidneys and my heart. Other issues are now mostly resolved working with an excellent team - hematologist/oncologist, nephrologist, and cardiologist. During the aggressive doses of these three primary medications I was debilitated causing five falls and two hospitalizations for kidney and heart issues.

I would greatly appreciate any suggestions for dealing with the side affects of edema from the steroids, I’m exercising more and eating a low sodium diet.

Thank you,
Betty

Thanks PALM for your response!T

I am on this treatment now. Other than a little more fatigue, I do not notice any difference than the other treatments that I have been on. The side effects are all the same: fatigue, nausea at first, lack of sleep on dex days, the biggest has been blurry vision. I do have to watch what I eat. Gassy and rich foods can cause vomiting and diarrhea spells. Recently, I had a spell(5 hours long) caused by 2 dark red kidney beans that I thought had been removed. I cannot eat Dark red kidney beans, black beans, pinto beans, refried beans, some lentils along with portions of broccoli, Brussel sprouts and cabbage. All these foods are normally good for you....but not me. I love them. You just have to adjust your eating habits to compensate.