Has anyone had their blood work remain consistent, but pain , nausea, fatigue etc get worse. Her oncologist is now ordering a pet scan. Could the cancer be getting worse and the pet scan shows it and the blood work doesn't. Please, anyone let me know

My Mother (74) has been on Dara VRD Induction for 6 cycles now. Her treatment had mostly been going smoothly but in March during her 6th cycle she experienced some diarrhea/gastritis, which resolved, but was followed by extreme inappetence where she really wasn't able to eat much and lost a lot of weight very quickly (7 kgs in 3 weeks). She's near Clinical Remission and was meant to be heading towards a transplant but given her current condition that is not happening. Treatment in general was put on hold to give her system time to recover but she is still experiencing extreme early satiety - she feels very full after eating extremely small amounts of food - and that feeling of fullness lasts for hours so she isn't able to eat enough to get the calories she needs to maintain her weight. Her current symptoms of concern are early satiety, post meal fullness, belching during and after meals and bloating. She is not experiencing pain or nausea, discomfort or reflux/heartburn. She has not had any diarrhea for weeks now and is not constipated either. Its mostly just these upper GI issues, but these symptoms are making making her lose her appetite and limiting what she is able to eat. Growing increasingly concerned because despite being off treatment for practically 5 weeks now and being put on a prokinetic, things are not particularly improving and I have no clarity from her doctors on what might be causing them, they don't have any diagnostics planned, nor giving me much input on what else we could be doing to help? Has anyone else experienced this? 1. Did your doctors think this was treatment related toxicity? 2. If so what did they attribute it to and was your treatment modified? 3. Did you have any diagnostics done to rule out other potential GI issues? 4. What, if anything helped with the symptoms? I would really love to hear from folks who may have experienced anything similar. Thank you so much, Aditi

I have very much pain in my entire body. I no longer take any meds right now for multiple myeloma doctor said not on remission however all my numbers are good and normal do I still have this cancer but don't need to take it until my numbers back up. I feel real lucky . What I'm saying is even though normal but still have the bad pain. For now I doing ok. I'll keep you posted. I'm also sending prayers Take care and my God bless

I was diagnosed with stage 3 myeloma in 1992; had 4 SCTs, 6 clinical trials and wrote a book that the LLS reviewed and put in its recommended reading list. We virtually share our lessons learned and strategies with support & other groups. The longest CAR-T myeloma remission I am aware of is 3.5 years. Is anyone aware of a longer myeloma CAR-T remission?

Anyone here received Xpovio based treatment? How did it work? Side effects?

Neuropathy - Feet Since my initial rounds of Kyprolis the front third of both feet have very minimal feeling. As a result I watch my foot care very closely but that did not prevent nail fungus as a result of a lowered immune system (Treating with laser treatment and all is well). Thinking I was watching my feet closely I stepped out of the shower with light color blood emanating from my left foot. Turns out I had developed a big ole blister between the foot pad and base of toes. With no feeling in that area the blister top had opened and torn off leaving a single layer of very red skin. Anyone else have similar foot issues?

I'm Sarah NON- secretory Myeloma with 8 rib fractures and spine compressions - 52 Mum of 3 just adult kids in Melbourne Australia. Diagnosed Nov 23. Completed 4 cycles of VRD. Stem cell transplant schedules 15th May. Thanks for letting me join the group!

So thankful to find this group! 52 year old mother of three grown children (2 in college), wife, and RN in a very busy short-stay ambulatory clinic. I was diagnosed with Kappa IGg MM 12/22 and started induction therapy of VRD in 1/23. Doing pretty well with this for the most part. Looking at SCT in Sept or October, we think, at this time. I have not needed to miss work for my Velcade treatments other than leaving a little early once a week but am curious about transplant recovery. I understand it can take a few months. My job is quite physical, and I stand all day so am concerned about being able to physically perform as needed. For those that have had the SCT, how long did it take to get back to “normal”, or close to it?

How do I find a specialist in AZ-I typed this in your search bar at top-nothing came up?