Stable Disease? I am a nine year survivor and non secetory. I have been through almost everything except Car-t and Silexinor. After ending Blen REp in Sept 2021 I have been without treatment for 16 months except for focused vegan diet and mushroom supplements plus DEX. I thought I was in stable disease but the past couple months it rose to an NGS of 18,000. An exponential doubling rate of 30 days. When I ended BLen Rep I was sub MRD so that explains why it took 10 months for my number to go up. This doesn't qualify for relapse and a new drug without changes in other blood markers. So I made more changes to my diet and my mushroom supplement routine and today I got a CBC which showed that it went back into the normal range ( Red count of 4.6, White count of 8.5 and Hematocrit of 45.1)-- so today I am really happy. Looking forward to get my CLoneSEQ results from today's BMB ( #45) nest week. My hunch is that it is back from 18,000 to maybe less than 10,000. Although I think these numbers are really high I feel really good and will be happy with these If I can maintain this level of Stable Disease with just the diet and supplements. Certainly better than weekly infusions and $20,000 per year for Selixnor (LOL). We will see but with these CBC numbers it will be a great bike season this summer.

Hi.....my Drs seem stumped why I randomly experience massive leg cramps at night. One or both legs...below the knee...could be like a charlie horse or like a shin splints that can move down the leg into the feet... very painful and takes up to 15 to 25 min to walk off. Potassium and magnesium levels are good and I am well hydrated. No correlation to Revlimed...Dex... Darzalex or kyprolis. The cramps average 3 to 4 nights each week. Crazy but very painful. Thanks for any words on this topic.

After having read my original post, I don't think I was clear that Deke has not yet had any treatment at all. We go to doc this Friday, Feb.10, and presumably we'll learn about treatment plans then. I've read that Velcade is administered 2x a week, but Deke already has an out of state work assignment next week, so I guess nothing will happen until week after next at the earliest. Also, can anyone comment on Velcade and what we can realistically expect as side efects? I know everybody is different, and I'm just foolishly hoping that some of you will say, "Well, the side effects aren't really bad enough to disrupt your life significantly. Thanks. Patricia

I'm writing this because my newly-diagnosed husband (I'll call him "Deke") would never dream of doing such a thing. However, it's long been my role to be the gatherer of health information for the two of us, and I know we'd be better off if I add legitimate (I hope) info to the real-world experiences of those of you who are walking the same path. Having said all of that, I need to describe our/his situation. Deke, who turned 84 in December, has been monitored by an oncologist/hematologist every 6 months for MGUS since the summer of 2020. Much to our surprise and dismay, the doc announced at the last monitoring--or that's what we thought it was--visit that Deke now had active, "aggressive" multiple myeloma and would be treated with Revlimid and Velcade. That was November 23, 2022. Some of these events run together in my minds, but I think at that point he then had a bone marrow biopsy and a PET scan. When we went to the doc after the PET scan, we were expecting treatment to begin; but the doc said Deke had lost 30-40% of his kidney function and the doc "didn't want to start treatment too soon or two late." Deke has been an insulin dependent diabetic for 40ish years, and he had bypass surgery in 2019; however, he is very active physically and has had no symptoms of kidney disease, and no discernible symptoms from the myloma until the past week. But it's now been 2 months and 2 weeks since his diagnosis, and of course there's no way to know when his MGUS finally morphed into active myeloma prior to November 23 when he was beeing seen on an every 6 months basis. This just doesn't seem to square with what I have read about people's diagnoses and the start of treatment. Deke's doc is highly regarded by other doctors in our area, and, of course, I don't know any myeoma patients I can quiz about this process. I have one friend who was treated by this doc, and she speaks favorably of him--but of course, she didn't have myeloma. I've tried to limit myself to the salient facts, but I do apologize for the length of this post. Any comments that will encourage/inform/whatever will be appreciated.

Welcome to our newest HealthTree Connect group! Whether you are curious about, preparing for, or recovering from a CAR T-Cell Therapy (or had one a while ago!), we invite you to share your experiences and ask your questions here.

Scoliosis- Has anyone had experience with scoliosis issues? I was diagnosed in 2020 and current X-rays show the degree of curvature at 48, which is severe. Local Ortho drs have not been helpful. I’m in FL looking for specialists but also have a dr in MA, Dr Melvin Makhni (Boston) , reviewing my labs now. Does anyone have any suggestions at all. Special exercises, an amazing specialist, best sleeping position, special clothing (Forme?), things to avoid…. I do not want surgery and want to keep this from progressing. Thanks for any advise.

I'm Diane -- my husband Todd was diagnosed the day after Christmas 2017. He receives his treatment at City of Hope in California with Dr. Amrita Krishnan. He had a SCT in 2018 and has been on a variety of different treatments over the past 5 years. We are still working to reach "MRD Negative" -- ironically, a goal we expected he would achieve in 6 months -- 4.5 years ago! The good news, as of December 2022, his MRD testing came back the lowest it has ever been -- 3! So we are hopefully getting close -- and learning (and relearning) patience and flexibility along the way. I call myself his "care partner" -- we are partnering on this journey together.

I was diagnosed with smoldering myeloma 2017. I went on Revlimid for 6 months and then on monthly Dara for 4 years. Last October my numbers began to rise. The topic of a stem cell transplant came up. I start my workup next week at Mayo Pheonix. It will be all outpatient. I have watched videos and talked to others and believe I am prepared for it all. I am still a bit apprehensive about the whole process. I would like to know what recovery looks like from others.

Hello, I started the process for SCT, I have so much anxiety and second thoughts. I am 70 years old, was in good health before diagnosis in May 2022. Treatment started conservatively because I had a femur break/surgery that had to heal. Started with VRD, numbers came down, then flattened out, so Dara was added. Dr said I have a 95% reduction in MM markers. I am so afraid of putting my body through SCT when I could maybe get same remission from treatment.I’m afraid this anxiety will cause issues Has anyone cancelled/postponed SCT after starting the process? (Testing at this point)

I’m Dolores and I am caregiver to my husband Ken. He was diagnosed October 2017 and had sct in 2018. We seem to roll along and then he ends up with a fever and a trip to the ER. He has been having some dental issues and has been okayed to have knee replacement surgery, if he wants it. Lots of concerns about infections following surgery. He is getting fitted for an unloaded brace for his left knee tomorrow . So glad to talk to others who understand.

Hello, my husband was diagnosed with MM May 2022. It was an incidental find on MRI. Had plasmacytoma on L2. Immediately went to Mayo. Had chemo in Duluth Minnesota while working with Dr at Mayo. Had stem cell transplant on November 23 at Mayo in Rochester. Dr wanted us back day 60 for follow up . Bone marrow looks great, but M spike still at 0.4 now Dr wants 6 weeks of chemo then maintenance. Anyone experience same thing? Thanks Colleen

Hi I am Jen, 57 live in Colorado Spring area. I was diagnosed Dec 2021 after going to PCP for annual work up. Sky high creatinine was the trigger to investigate. Stage 3 kidney damage no bone damage. Had my stem cell transplant Oct 2022 at Mayo Phoenix. All outpatient (but I got admitted for 3 days for hydration issues) It was pretty non eventful and I feel great now. Waiting for hair to grow back! Haven’t had my MRD testing yet so not on any maintenance currently. Happy to talk to anyone about my experience. I’ve had 3 amazing specialists due to a move midway through induction and my stem cell transplant Dr. They were all 100% aligned on my path of care.

My very good buddy, August! He is a 18 month old goldendoodle who thinks he is a cat, person or still a small puppy. He loves to snuggle and really helped me through some rough days. I missed him while in the hospital. I am so glad I got him 6 months prior to my diagnosis. Of course now he is 85 pounds and full of energy. I have reached my 100 days post SCT and one month into my maintenance chemo and remission. I am looking forward to a good 2023. I looking forward to get back to work as an RN and helping others in their illnesses. All my best, June

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

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.