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?

I was originally diagnosed in mid-2022 in the smoldering state. I have recently had a trend of being anemic and with a decreasing filtration rate <42. My physician has said that I am entering an active treatment stage - somewhat related to my "young" age (51). I am bit nervous about the thought of 4 months of drug therapies leading to a bone marrow transplant. Anyone been on this path? Any guidance to share?

About a year after diagnosis my husband and I got this cute little pup. She is a 5 year old Maltese named Hope, she quickly became a huge part of our family, and helped me through some of my toughest days. Post a picture of your furry friend, and feel free to share their name/age. How have they helped you in your myeloma journey? Let's flood this feed with our furry friends!

My husband is 71 and was diagnosed 5 months ago. He's doing well on dara, velcade, dexa and revlimid and now only every other week. Our hematologist/oncologist, Dr. Vogl at U of Penn, recommended a SCT. We're nervous about dying in the hospital from infection etc. He had a cardiac stent placed in 2015 so will need some anticoagulant added to the process. Considering that Dr. Vogl knows all this and recommends the SCT, we're inclined to go forward. Anyone have any wisdom on attitude, confidence, health tips?

I was diagnosed with MGUS 12 years ago, and with SMM 1.5 years ago. I have been on a gluten free diet for 7 years and for the past two have also reduced cow dairy, grains, legumes (irritants for me). This did a tremendous job of reducing auto-immune issues I was having. I have been on curcumin, quercitin, vitamin D and K and other supps, plus delayed morning fasting, and low carb (to achieve level blood sugar) for years as well . All under the direction of a functional oncologic medical doctor/nutritionist (used while being under the care of an MM specialist, and the day I start treatment, I will do whatever the MM specialist says!). My SMM has been stable with M protein of 1.4, and I get checked every 6 months. What I found funny is that six months after I had hip replacement surgery (trauma and inflammation), a viral illness that inflamed my liver, and much worse eating habits (bad, I know-- I was using food as comfort)--I had totally stable, if not better, blood markers! I am not going to give up on healthy eating, because I truly believe that if and when my SMM turns to MM, I will be in better health to endure treatments that might be toxic to my liver and kidneys. The healthy eating will also keep me (I pray) from unrelated diseases like diabetes, which might complicate MM treatment. Plus, I just feel better when I eat healthy and practice other stress reduction lifestyle elements. But it makes me wonder what healthy eating's connection to MM progression really is, and I wish more studies could be done on food's effect on SMM.

Good evening to all. I was diagnosed in December 2019 with SMM. I remember being really angry and anxious at first and then Covid set in. I decided I was going to fight like hell to beat this beast. I switched to a total plant based, organic diet and exercise and meditate at least 6 days a week. Things are going so well that my doctor now only wants to talk to me once every six months. (and that's cause I insisted instead of once a year). Feeling strong and determined!!

I was dx with MGUS in 2018 with cytogenic factors like t(4:14), 1q and del 13 as well as 5-10% plasma cells. So far so good as I am staying abnormally stable with my labs. LOL! I have always been active but was in a slump with it so recently decided to up my game and exercise 5 days/wk in some form or fashion. Look forward to learning what others are doing to keep from progressing.