I'm on my fourth cycle with pomalyst. The side effects have gotten worse to the point of being unbearable. Has anyone else experienced this?

Are there myeloma patients here that experience a progression of bone disease even though you are in remission? I experienced compression fractures in my spine because of MM damage and in the first year of treatment for the cancer, those fractures healed pretty well. I've been in remission for most the past ten years. However, through the last several years, I notice that my spine hurts whenever I rise up from a lying position. Years ago, it was only a mild pain that lasted less than a minute, then went away without problems. But in the last several months, the pain has gotten much worse - around 7 - 8 on a 1 - 10 scale - and it lasts for many minutes. I've read that myeloma can cause permanent changes to bone chemistry that causes continued damage even without the presence of cancer cells, and I fear that's what I'm experiencing now. My doctors haven't explained much of this to me and I've decided to find out as much as I can about this and what the prognosis is. So I wonder how common this kind of bone pain is among MM patients and would appreciate any input from others. Thanks.

I am 8 months post Car T/Carvykti, doing well. MRD negative, blood counts coming back very slowly. I have always struggled with some wrist issues, due to ulnar impact syndrome (ulnar bone in wrist too long and over time causes pain/damage from the impact- basically bones in my wrist are too long). In July , just a few months post Car T I started to have alot of wrist pain/weakness. I have been doctoring with an orthopedic as these aren’t new issues. The pain/numbness in my hands got so bad about a month ago I had an EMG which showed moderate carpal tunnel on my right hand and mild on my left hand. Very odd to basically develop carpal tunnel over such a short amount of time. Today when seeing my MM specialist he mentioned that there is a connection between Amyloidosis/MM and carpal tunnel. The carpal tunnel is basically a precursor to amyloidosis and he advised that if I have the carpal tunnel fixed to be sure they do a biopsy of the tissue to test for amyloidosis. I was very surprised by this connection and started to do some research but curious if anyone has had the experience to develop carpal tunnel and then eventually amyloidosis.

My husband (65 years old) was diagnosed with multiple myeloma in 2016, had a bone marrow transplant in 2017, took the Revlimid (Lenalidomide) for a while, was in remission but in 2023 had to have more chemo treatments and another bone marrow transplant in January of 2024. Recently he started taking the Revlimid again. Does anyone have an information about a different or a new oral medication that may be better in treating multiple myeloma? Or any other treatments that you may have information about?

Is there a way to search discussions? When I use the "Search HealthTree" UI element at the top of the page, it only returns results for news articles. A way to search the discussion forums would be very useful and would probably reduce the amount of repeated questions.

Vibration therapy. Does anyone have results of using vibration therapy for helping with Multiple Myeloma? It shows to be able to help build bone strength and there is another encouraging study concerning Smoldering myeloma. I can not find any data on using it to strengthen bones or prevent tumors in a patient in remission.

My father is under VPD therapy. His back bone pain is persisting. Oncologist has asked for a PET scan. We want to schedule it in such a way to avoid false positives/false negatives due to treatments. What things should I take into consideration and ensure accuracy of the PET scan

Jaw Necrosis - Antibiotics Help Pain, but It Returns After Stopping Hi, I’ve been taking antibiotics for jaw necrosis, and the pain improves while I’m on them, but returns once I stop. How long is it safe to continue antibiotics for this condition? What else can help short of surgery to remove the dead bone? Any advice or similar experiences would be appreciated. Thanks!

Diagnosed 2023. No SCT due to ovarian cancer reoccurrance risk (NED for ovarian Dec 2020). Maintenance of Pomalyst relapsed in 7 months. Now on cycle 23 of Kyprolis (weekly for 3 of 4 weeks), Darzalex faspro (monthly), 40mg dexamethasone (20mg on treatment day and 20mg day after). Dexamethasone is standard for most treatment protocols for MM. I saw clinical data for Kyprolis that demonstrates a significant improvement with high dose dex rather than low dose. I understand it is important. My question is do others have what seems to be steroid rebound pain? I take 20mg on Thursdays (treatment day) and another 20mg on Fridays. I feel good through the weekend. On Mondays I start feeling like I am bruised on my upper arms, around ribs, and down fronts of thighs. It hurts to drag a shirt over my back. Also the lymph nodes behind my earlobes hurt when touched. That area hurt when at the end of 3 day prednisone cycles when having chemo for ovarian cancer. This is not bone pain. Claritin does not help. The pain wasn't too bad until I took a 6 week break in November to harvest and store stem cells. Since resuming treatment, it has been more intense. I even started taking hydrocodone. Last week, that didn't even work as well for the pain. My oncologist did tell me I can take a 4mg dexamethasone since it seems to help. I am nervous about bridging until Thursday with low dose dexamethasone. I worry what it is doing to my endocrine system. Does anyone else have this reaction as the steroid wears off? I am assuming the steroid is causing it because of past experience with the prednisone. Yet I had been on prednisone for skin rashes prior to cancers and never had this. But, those times had the steroid slowly stepped down. My doctor is not concerned and seems to feel I am a fluke with this. Like I said, it wasn't so bad until resuming treatment after that break.

Hello community. High risk smoldering mm female here age 68. A very general question - if location and insurance concerns weren’t an issue (well they are somewhat but still interested in your responses) which mm cancer center do you think does the best in terms of survival rates and offers a comprehensive care strategy (family counseling, integrated care etc) and also doesn’t make you feel like a number. I have no problem doing Telehealth. I have looked at the health tree resources and elsewhere but just curious what these boots on the ground have to say. Thank you!

Does myeloma treatments medicine side effects cause you to develop another blood cancer? This disease is horrific any fb group with myeloma patients?