Hello all, This is the first time I have reached out to others with multiple myeloma. I was diagnosed March 4, 2022. A total shock at age 58. I thought all I had was a pulled muscle in my upper middle back. No, I had rib fractures with dislocation. I had a large tumor and two little friends in my right lung. If that was not enough I had significant lesions along my entire spine and right side of my skull. I had the good fortune to get Dr. Elias Kiwan in Sacramento. Not that I am happy to have multiple myeloma stage III with 1q mutation (high risk) but at least it was not lung cancer with metastasis to the bone. I was misdiagnosed by an egocentric physician who was focused on her data points for her lung cancer studies. Sorry, I digress. I feel I can be critical about medical care because I have been an RN for 22 years. I have a great hematology team even though the beginning was terrible and wrong. I had 5 cycles of DARA (decadron, revlimid, velcad, darzalex) with 10 rounds of radiation to the lung tumor. Dr. Kiwan from the first meeting spoke of autologous stem cell transplant and all cycles were to set me up for transplant. My disease was significant but my labs always remained like a normal person. I was fortunate. In the beginning I made the mistake of looking on the internet for myeloma stats such a mistake. There is such great treatments today with great outcomes aka remission. But, in the beginning I was spinning a lot. I am sure you all can relate. The life I thought I was going to have ended. I still see myself as a newly diagnosed. I had more bad days in the first 3 months with cancer related fevers, bone pain, tremors, rib fractures and nausea. After the 5th cycle I felt almost normal. I was ready to go back to work. My emotional state went up and down. I am still angry that my body failed me and allowed the cancer to grow. Of course this turned to tears. I never even got COVID after taking care of hundreds of people with the disease. After working in hospitals for 38 years I am a realist. We will all get some disease or medical altering event. I was just hoping to have more time with being very healthy and maybe retire with years to leisure. Oh, well. I enjoy what I can and always look for the positive. I do not know what else to say right now. I have stated many other paragraphs. So, stay safe. All my best June.

Hi everyone! My name is Nat, I'm 32 years old. I am Brazilian but I moved to Toronto, Canada, 3 years ago. I was diagnosed last year, in April, and I had my transplant in October. I feel like myself again, after a few complications during transplant, and I just started the maintenance chemo. My goal for this year is to start eating better and start practicing pilates. Do you guys have any app suggestions? :) Thank you and have a lovely week. Nat

I'm Rozalynn, caregiver to my husband Richard, diagnosed at age 39 in 2015. Being a caregiver is so full of ups/downs. Some days I feel great and other days I feel so alone. I'm happy to have this group to connect with others who can relate.

Hi, I’m 75, in good health before MM. encouraged to have SCT last year but not convinced. Felt so good with treatment. Now after PET, looking at SCT I n March. Love to hear stories of success, struggles with procedure. Planning to go to Sloan Kettering in in NYC.

Hi everyone, I just wanted to share something that worked for me. Every year I decide to set personal goals. My goal this year (because of Urvi Shah at MSK) is to eat more plant-based food. So last year I tried it for 2 weeks straight, ran out of ideas and quit. But this January, I decided to take a different approach. My goal was what I was GOING to do and not was I was NOT GOING to do. It has worked well so far. I am going to eat 4 vegan dinners and 4 vegan lunches per week. Not going totally vegan because I don't have the cooking depth for that yet, but I am feeling good, and am doing better at hitting that goal every week. Much better than telling myself I need to lose 10 pounds. We also now have healthy recipes on our site which are plant-based, so please check those out under the Healthy Recipes category. If you have recipes to share, let me know!

I know several of you have had questions about supplements. You might have seen this already, but I wanted to share this 2022 event from Dr. Terry Golombick, one of the leading names in supplement connections to precursor myeloma research. I'll look for a 2023 speaker who can share more information with us but until now, I hope this video is helpful to you. https://youtu.be/znYGu0n_wJ0

Please identify yourself if your MM care is in Moffitt.

Hello all! My mom had her transplant in August 2020, which was very successful. However, she is still having trouble with getting her taste back, even after almost a year and a half. Some days are better than others, but she seems to have the hardest time with salt and sweet. She also has some difficulty with textures of meats from time to time, and says her saliva is generally very low. She uses the drops and mouthwashes to assist with that, but it's still an issue. Does anyone have any pointers for her? Anything that has worked for those that have gone through this and come out on the other side?

Good morning, 60 - male - high risk - 3rd line of therapy - tandem stem cell transplants. Currently on ERD. Has anyone here been on Elotuzumab (Emplicti) and what were your results?

As well as being on mostly veggie diet with supplement regimen, I am looking at medical developments to treat SMM before it becomes active. I pay close attention to any presentation that speaks to this and wish there were more that concentrated on prevention before the fact. Maybe a category of Prevention with diet, supplements, treatments and clinical trials could be in one place for those of us in this predicament. I had to do my own research to find what supplements to use and don't even know where to look about possible supplement interactions that could conceivably do more harm than good. I have a large list of supp's that science has shown kills MM cells (apoptoses) but I think I was taking too many all at once which made me sick. Maybe a special nutritionist that concentrates in this space is possible???

This is Allagash-she gets me out there walking!!

I was diagnosed in October 2020 with MGUS…then SMM month later. My symptom was a feeling of neuropathy in my feet. The neurologist determined that I didn’t have neuropathy. My BMB revealed 20%. I am considered intermediate risk with no genetic markers. I am anemic. I have a local hematologist that I see every 2 months, bloodwork every 2 months, specialist that I see every 4-6 months. I have had 2 PET scans (yearly intervals). Will have MRI instead of PET along with bone density test in April. I feel fine and am a active marathon runner. I take B Complex, Curcumin, pre and probiotics, multivitamin. My only prescription is a statin. I eat a balanced diet. My numbers rose rapidly at first but have stabilized the last 8 months. I am 70, my wife paseed January 3, 2021 after loosing her battle with Alzheimers.

My little Mystee. A great cuddler, comforter and entertainer! ❤️

I’m about a month into my diagnosis. The good is that I have my care team and I love them already. I just had my first injection treatment this week, so we’re moving right along. Trying to do all of right things (show gratitude every day, perform a mitzvah (or good deed every day), prioritize the outdoors, drink 100 ounces of water a day, wash out my mouth to clean it every time I eat, and the list goes on. So many new habits to instill. Mornings are hardest because I wake up every day remembering that I have cancer. That’s when I cry the most. I spend an hour or two trying to ramp up to positivity and then I try to get busy. I feel this urge do early spring cleaning and to organize everything that can be organized. Trying to control what I can control I guess but mostly because if something sudden happens it’s not hard to find what they need and because I want to catalog memories for my girls—the first thing I did was create a family cookbook. I’m also realizing that I need different types of people. Those that remind me that I’m a badass, those who let me cry, those who will just listen and those who give me space to be alone when I need to. But I also need a group like this which is why I joined connect both to share own experience in the event it could help someone else but also because I need people that get it. That’s what is going on today. Nice to meet all of you. Kristen

I am curious. Myeloma goes undetected so often. It tends to be when someone breaks a bone or has kidney failure that doctors start suspecting myeloma. Would a specifically myeloma oriented blood test be able to detect myeloma and should such a blood test be routinely administered to all patients 65 and older?