My MGUS, diagnosed in 2017) progressed to high risk smoldering myeloma in early 2025. It has likely progressed to active myeloma or darn close according to my labs. My labs have been showing steady increases in IgG Kappa light chain ratio and it's at 238 now ( was 188 6 weeks prior) but my Calcium, Kidney function, and Hemoglobin have been normal. My latest hemoglobin dropped to 12.5 from 13.3 six weeks prior. So here's my question. I have felt in the past two weeks tingling in my toes and feet which has become more continuous now. I feel it more in my left foot rather than right foot. I have sent a note to my myeloma doctor at MSKCC earlier today. I am concerned that it may be amyloidosis but i also know it can come with myeloma. I will have a PET scan in 10 days and repeat blood work in a bit less than 4 weeks. My last MRI in mid July showed no lesions. If anyone with just Multiple Myeloma and Myeloma plus amyloidosis could weigh in as to whether this symptom raises a red flag of amyloidosis? I may be starting treatment sooner rather than later as per my doctor.

I have always been very active. For the first year+ of my diagnosis I struggled with fatigue issues to the point that it significantly impacted my quality of life, largely because of my inability to be outside playing and exercising. I have been taking Jakafi for about eight months and on my current dose for four months. I am almost back to my normal activity level! (Hooray!) What I’m wondering is, how long can I expect my current “normal” energy level to last? Anyone else been through this process? Thanks! John

Has anyone had side effects after getting IVIG? I received it Friday and 36 hours later got a terrible headache, chills and body aches. If you did get some side effects what were they and what did you do to alleviate them? How long did the side effects last? I talked to my oncologist and he said to take Tylenol and if it does not improve to come to the ER at the cancer center.

I’m 41 yo F w High Risk CLL and on Calquence since May. In the last 6 weeks I’ve started noticing a lot of hair loss. It doesn’t seem to be a typical side effect of calquence. I’m s/p hysterectomy back in 2021 but still have my overies. Anyone else experiencing hair loss? If so has anything helped?

I was considering moving out of state (CA to AZ) but just yesterday I realized employee ppo insurance plans are not the same as Medi-care advantage ppo plans. It seems I will not be able to keep my oncologist unless I pay out of pocket. Is there any way to move and keep my oncologist?