I have a 66 year old coachee (diagnosed in Apr. '24)that has relapsed and will be starting Krypolis, Sarclisa, and Dex. She is apprehensive about the new treatment and what to expect. She has some significant neuropathy and is taking B12 injections and magnesium. I have no personal experience with this line of treatment and some of the information I found here on Healthtree seemed pretty technical. If anyone has personal experience or suggestions for reading I would appreciate you sharing. I didn't want to overwhelm her. Thanks all!

How are you coping with fatigue and does it get better?

Does anyone have any issues with their eyes and a different feeling in their head, almost like a dizziness that connects with their eyes since starting g dexa and chemo?

I’m newly diagnosed with smoldering multiple myeloma last week. I’ve been through a myriad of testing and have a M spike that is riding too quickly I’m told. This is incredibly nerve wracking like I’m a ticking time bomb.? How do you handle this ?

I am getting an MRI at the end of this month as about 13 years ago the Dr. said I was ok and then I had an MRI and I had multiple Myeloma. My new cancer Dr. says I don’t need an MRI as my bloodwork shows I am in remission, but I haven’t had an MRI for two years and want to make sure. I was on Revlimid but have been off of it for a year now. My old Dr. wanted me to stay on it, but my new Dr. didn’t think I needed it. I moved or I wouldn’t have changed Dr.

Diagnosed with MM early 2019. 1st Oncologist had me on Velcade. Received excessive amounts of Velcade & experienced severe Neuropathy early on. Decided after 3 weeks to change Oncologist TG!! My New Oncologist recognized the damage bases on my 1st Chemo Treatments. He immediately aborted my current treament & began a series of Kyprolis Treatments. What a life saver!! in November of 2019 I went through a Stem Cell Transplant. It seemed to have worked for the 1st Month, soon after traces of MM were not at bay. Long story short, it was discovered I had a bad Chomosome, yup, P17 deletion, which began allowing the bad cells to enter in once again. Longer story short, im on now & Oral Med of 3mg of Ninlaro & has been wonderful, all my Markers are at bay & consider in a remission state! Thats my story for now & I'm sticking to it!!!

I have been through 2 SCT’s and have been in remission for 9 years. I went into remission after my first one. However, my transplant team had a tandem protocol based on my age and profile. I do not take any medications related to my MM. I follow the directions of my medical team to the letter. I’m here to support and help anybody who has questions. Stay strong! Stay positive!

In July 2025, my father was diagnosed with Acute Myeloid Leukemia (AML), which exacerbated pre-existing conditions including Alzheimer's and Congestive Heart Failure (CHF), thereby creating substantial obstacles. As his primary caregiver, I have taken a leave of absence from my professional responsibilities, and the associated demands are proving arduous. Recent months have seen a marked increase in hospitalizations for transfusions. The medical outlook is unfavorable, and my mother, who has her own health issues, depends on my support. Considering my diminishing resources and energy, what strategic approaches can I implement to effectively support both parents and my best friend? Furthermore, I have extended housing to a close friend who was recently diagnosed with stage 4b cancer. I am experiencing feelings of guilt related to my limited availability to support her, given my primary focus on my parents' needs.

I’m working with an oncologist who is looking at the connection between MM and diet. After refraining from animal proteins 6 days and today having two boiled egg whites for breakfast Plus tilapia for lunch, I feel awful. I felt much better excluding animal proteins.

For constipation, my MSK oncologist recommended otc magnesium citrate, produce or maybe a stool softener.

Has anyone here been on multiple lines of therapy for their CLL? I am organizing a patient panel for a webinar covering the relapsed and treatment-refractory patient experience and would like to have a CLL patient be a panelist if possible.

What are you using for constipation?