I was diagnosed with MGUS in 2009 and lambda IgG MM Jan 2023. I had fallen hard on a concrete floor Oct 2022 and broke my radius and ulna in my left wrist. Within a month, my ribs were hurting, followed by my back. A PET scan mid-Jan revealed multiple lesions on my ribs and a vertebral fracture and by the end of Jan 2023, I was hospitalized for four vertebral fractures. I was treated with kyphoplasty and then went through 9 months of D-RVd (although actually I went from 40 to 20 mg of dexamethasone in three months and quit dexamethasone entirely within 6 months.) I needed another kyphoplasty on another fractured vertebra in April. My M-spike has been reduced from 4.7 to 0.2 g/dL and has been stable since September. A PET scan in Oct showed I probably had had at least one more fracture in between April and Oct, but the scan showed all fractures and lesions and fractures were healed or healing. I have been trying to build strength carefully on my own, but I still need to lie down several times a day and still feel better with a lumbar support binder and a natural posture brace. It seems to me that there has to be others with MM who need special help with their backs. I would like some good PT, but I don’t want to just try someone blindly as I suspect the fractures after hospitalization were from PT, both rehab and after. My oncologist / palliative care team have been unable to recommend anyone specifically. Does anyone know of a good PT in the Chapel Hill / Durham area that they can recommend? Or a good spine doctor, familiar with MM?

"Should I be concerned about my health numbers? I'm not sure, but I don't have a great feeling or confidence in the doctor treating me. They missed my Lyme disease for 5 years until it really took hold. They said it's just MGUS, and nothing to worry about." KAPPA FREE LIGHT CHAINS Feb 13, 2024 -2.16mg/dL Nov 28, 2023 -2.33mg/dL LAMBDA FREE LIGHT CHAINS Feb 13, 2024 -9.83mg/dL Nov 28, 2023 9.1mg/dL KAPPA/LAMBDA RATIO Feb 13, 2024 0.22?

I am wondering if anyone can speak on tp53 mutation. I was diagnosed in August 2021 with MM and pathology indicated I am standard risk, no mutations/high risk. Fast forward to stem cell transplant Jan 2023 and relapse 10 month later. Started KDaraDex, failed and now adding Pomalyst. Biopsy of Lesion on l2 vertebrae indicates one test that is positive for tp53 and one that is undetermined. My oncologist is saying it is very unusual (but not unheard of- nothing is with Mm) that I would develop tp53 after diagnosis- it would have been there before and yet in my case it wasn’t. So my question, is anyone tp53 positive? If so was it found on initial diagnosis? And is there anyone out there that developed tp53 mutation as they progressed through treatments. Any info to share if you are tp53 positive will be helpful.

Happy Valentine’s Day for my fellow Warriors. I hope this brightens your day about something we take seriously in our broken body. I hope you enjoy. If it makes you smile, I’ve accomplished my goal…. In the bustling city of Immunopolis, five superheroes patrolled the streets, each with a unique power to keep the citizens safe from invaders. Meet the Fab Five Immunoglobulins! IgG, the General: Towering like a seasoned captain, IgG, the most abundant (75%), was the city's stalwart defender. He patrolled tirelessly, neutralizing bacteria and viruses like rogue robots with his powerful antibodies. His motto: "No germ gets past me!" IgM, the Scout: Ever quick and agile, IgM (10%) zipped through the alleys, her many arms reaching everywhere. She detected new threats early, like a watchful scout, alerting the team with her "Danger!" cries before foes could cause widespread damage. IgA, the Guardian: IgA (10%), the friendly neighborhood hero, stood guard at every mucosal gateway, from the eyes to the gut. Like a skilled bouncer, she screened incoming molecules, letting good ones in and bouncing bad ones out, keeping the citizens healthy and infection-free. IgD, the Strategist: Residing in the B-cell headquarters, IgD (less than 1%) was the brains of the operation. Though rarely seen, he strategized, deciphering enemy weaknesses and guiding the team with his tactical brilliance. He ensured every battle was meticulously planned and executed. IgE, the Sentinel: IgE (less than 0.1%), the most controversial hero, had a trigger-happy finger (or rather, molecule). He served as the allergy alert system, sounding the alarm with histamines (itchy warnings) for even the slightest foreign substance, sometimes causing unnecessary chaos. But when a truly dangerous allergen appeared, his swift response saved the day. Together, the Fab Five Immunoglobulins, despite their occasional squabbles (IgE blaming IgG for being too rough, IgA wishing IgE wouldn't overreact), protected Immunopolis with unwavering dedication. They taught everyone that immunity wasn't just about brute force but about teamwork, vigilance, and understanding each other's strengths and weaknesses. So remember, the next time you feel healthy and strong, thank the Fab Five for keeping you safe and sound! — feeling inspired.

Do we have in this group a member that gets Mezigdomide insteads Rev (in a research) . Together with Daxa and Valcaid . If yes, will glad to learn if it helps . Is it 1mg ? And what are the side effects ? Thanks

Hello! I was diagnosed with Smoldering Myeloma a couple of years ago. Bone marrow had 12% bad cells and my IgG has always been slightly high. Other than that, my blood work has been normal. I had my blood work done and a follow up tomorrow afternoon. I just reviewed the numbers all is in the normal range besides, IgG is 1699, Keppa 3.98 and Kappa/Lambda is 2.65. Has anyone else experienced normal range on all other blood work but these? Just need some reassurance. Thanks, Julie

I just wanted to revisit the conversation we had about the skin reaction at the site of the Velcade injection. Many people provided very good suggestions. I tried two of them and they both worked beautifully. The first one, was the advice to ask the nurse to put an air bubble into the syringe, then go at 90 degrees angle, straight in and as deep as possible into pinched skin. I did exactly that, and the result was close to miraculous - there was no skin reaction at all. I waited several days before posting this result just to make sure. This is the first time I had no skin reaction. From now on I will be asking every nurse for this technique. The air bubble worked! The 2nd suggestion was to use Arnicare gel on the older areas that had discoloration after the initial rash has subsided (I used Benadryl cream for the initial reaction). Arnicare gel really helps to remove the discoloration, at least in my case. Thank you everyone!

I am looking to find facilities that do NGS flow cytometry where the sensitivity of the MRD testing can detect 1 cell in a million (a threshold of 1 × 10-6). I am in Florida and have been to the University of Miami Sylvester where this testing has not been successful twice now. My specialist at Moffit in Tampa wasn't aware of other locations for this testing. I'd be interested in any suggestions or information.

Hello everyone. My dear sister was diagnosed with MM 3 months ago. She has been doing chemo (3 weeks on and 1 off). She is experiencing a lot of side effects. We finally got the nausea under control but lately she has stomach aches/cramps after she eats anything. U am concerned she is not eating because she is so afraid her stomach will feel awful. Anyone else deal with this? Any suggestions, ideas, etc. would be greatly appreciated!

I am having a stem cell retrieval in a couple of weeks Was just curious of what to expect.

Hello from the UK. Hope you are all doing well. I had an autologous stem cell transplant 2 1/2 years ago for myeloma. I'm not sure if it's the same in the US but 24 months post AT I have been asked to have the LIVE MMR vaccine (measles,mumps and rubella) by my consultant but my nurse is concerned that with low immunity I'm at risk of being ovewhelmed by the live virus with serious consequences. My neutraphiles hover around .7 to 1.2 due to the lenalidamide/Revlimid treatment but I am generally very well. Has anyone else come across this dilemma? Would very much appreciate any experiences people have had. Unfortunately measles is on the rise here. Thank you.