Dear Fellow Travelers, This is my first time using this platform. I had 4 mos of Velcade, Darzalex (Faspro) and Methylprednisolone last fall followed by a stem cell transplant in March. For the first time on Friday I started Carfilzomib 54mg,m2 (along with Faspro and the Methylpredisone) which is the drug that has been prescribed for my monthly maintenance treatment. I am a breast cancer survivor. In 2008 I had 27 lymph nodes removed from my right arm. I had the Carfilzomib infusion in my left side but my right arm the very next day was swollen and bloated & has now developed lymphemena. Has anyone else had this happen while on Carf?

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I've been thinking a lot about both fatigue and stamina during my time in maintenance as I have random issues with both. While doing my exercises this morning I came up with a gas tank metaphor that helps me get it straight. Please let me know if this makes sense. Fatigue: You wake up and the needle is below E. Blinking takes effort. No matter how much you try to put in the tank, the needle steadfastly remains on E. Try again tomorrow, maybe the hole in the tank will self-repair over night. Stamina: You wake up, the needle shows there's fuel in the tank but the gauge may or may not be broken. At some point in the day, usually unannounced, you WILL run out of gas. No matter how much was in the tank to start, you're just not getting the mileage you thought you should. Refilling the tank may take an hour (rest, snacks) or it may take over night.

Prior to being diagnosed with MM, I was being managed by an endocrinologist and was on Prolia injection every 6 months, for years. Once I was diagnosed with MM, my oncologist started Zometa infusions, every 3 months. Just recently, I was referred to the rheumatologist by my PCP, when I complained of bilateral TENDON pain, practically everywhere. The rheumatologist ordered an MRI and the bigger issue was that I encountered a stress fracture. Currently, I am 1.5 years post-ASCT and MRD negative. I did have bone lesions with my diagnosis, but nothing major or debilitating. I seem to be caught between a rheumatologist and my oncologist, determining what med I should actually be on. I do have a DEXA ordered and maybe that will be the deciding factor, but I wonder if seeing an endocrinologist would be better? I do know that my calcium rises, just over normal, by the time I am ready for the next Zometa infusion. NO idea why that has been a trend since ASCT. I would think I would not want to return to Prolia, if this is the case. Any thoughts or wisdom to share? Who manages your osteoporosis after ASCT? How long post-ASCT have you been on Zometa? Thank you kindly.