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?

Hello folks! Hope youre keeping well !anyone who is above 60 and fighting with myeloma from anywhere in the world? Or🇵🇰 pk? With diabetes and hypertension asthma How is allogenic stem cell tensplant for frail patients ? Will they tolerate it? Myeloma is horrible disease.its hard to see ur loved ones suffer😔 Kindly enlighten me on this... How long is remission nowdays? Do the medicines make patients very weak?

I am in the early stages of smoldering multiple myeloma. Besides the blood work findings, my only symptom is weak and at times unsteady legs. Is there a relationship? Extensive neurological testing has shown nothing.

Not enough stem cells harvested. My wife is 61 year old and was diagnosed with IgG Kappa multiple myeloma in July 24. She has completed induction phase with quad regimen and is getting ready for a stem cell transplant. She underwent stem cell harvesting with Neupogen and Mozobil. They were able to collect 3.3 million stem cells over a course of two days. The target was to collect 6 million stem cells. Our Myeloma doctor is telling us that she has enough stem cells for one transparent. She has the option to go ahead with one stem cell transplant. There’s a very good chance that she will not need a second stem cell transplant.. There are many new therapies that can be used in case of a relapse instead of a second stem cell transplant. Her other option is to recover for 2 to 4 weeks and come back for another attempt at harvesting more stem cells. Her multiple myeloma is in complete remission and there is no rush to proceed with transplant. The doctor says if it was a family member, he would recommend to proceed with the stem cell transplant and not try another attempt at harvesting however, if she decides to try harvesting one more time. He will be OK with that too. I’m writing to get a feedback from patients who had similar situation and what did they and what was the outcome? Thank you.

After two years of being in remission after a SCT my light chain numbers are creeping up. I am thinking that a second SCT would be an option. I did well with the first one and I am in pretty good health (despite the myeloma) .I believe my doctor will be recommending a CAR T cell transplant. I don’t want to use the option I would like to reserve it for the future. Any thoughts …..

I cannot really add much to a discussion. At this time my myeloma is smoldering for about 6 years. At this time I have blood tests every six months. My Dr. Is in Houston where we moved from 2 years ago. I’m now looking for a Dr. In the Corpus Christi area.

My advice to all with MM is to find the best healthcare providers you can. Not all doctors are the same. I was diagnosed in 2018, had heart valve replacement surgery, vascular surgery, kyphoplasties, stem cell transplant, blood transfusion, 15 months of chemotherapy , and Revlimid. As of last week, my hematologist-oncologist told me the cancer is no longer a concern. Yes, it’s there but the number of cancer cells, originally at thousands per million are now at fewer than 10. Where are the best doctors? A lifetime of healthcare for my family and myself has led me to a publicly funded university hospital. The doctors spend two days a week in clinic, two days a week teaching, and one day a week researching in their field. They don’t order unnecessary tests or procedures and they will be among the first, if not the first, to learn of a cure.