I was diagnosed in February 2022 with -17,+1q LLC (HR) myeloma. My lambda counts were above 9000mg/L with 80-90% marrow involvement. I did 1 cycle of VrD and then 3 cycles of Dara VrD. The LLC numbers dropped precipitously with the Dara at first, then leveled off. To prepare for ASCT, I had to go through 2 rounds of chemomobilization to get enough stem cells. I lost my hair from this, even though they said it would not happen until the ASCT. After ASCT, my LLC count was just below 300, which was still very disappointing. I was afraid maybe the whole stem cells process was a failure, but my Myeloma doctor was not worried. She put me on "intensive maintenance" of Dara rD - recommended for HR people. My lambda counts started going down further! Th ASCT regimen included Busulfan treatment as well as the usual Melphalan (again, something used for HR people here at M.D. Anderson in Houston), which my Stem Cell doc said would make my remaining myeloma more sensitive to further treatment. It did, but it also made my liver sensitive, so my maintenance was changed to just Dara + Dex once per month. I am happy to share that my LLC numbers keep going down and were just 63mg/L (last month) I am feeling great and able to travel and do my activities, including figure skating. I am so happy to have the daratumumab antibody and am optimistic about all the research and development of CAR-T, the bispecific and even trispecific antibodies that are reported here on Health Tree. Fighting myeloma is a difficult road to be on, but focusing on the positives of each day is the way to go. P.S. I would love to hear how other HR people are doing. -Leslie

I would like to encourage all myeloma patients to have hope. I have been a myeloma survivor for almost 21 years. I have had many treatments, including drugs, SCT and CAR-T. However fortunately no bone damage or other serious problems. I have traveled the world (Australia, China, Israel, Egypt, Italy and many other places). I play golf and walk 2 miles everyday and the only pause for me was after SCT. I have been to the weddings of 3 of our grandchildren and have two great grandkids with two more on the way. I feel so blessed to have wonderful husband who has given me great support. And I am thankful every day for the great quality of life that I have. So, have hope, set goals for yourself and remember that every day is a gift.

After spending four painful years with my spouse, fighting ovarian cancer, and watching her slowly succumb to that horrible disease, I was diagnosed shortly after with my own cancer, Multiple Myeloma LGG KAPPA in 2019. I had learned a great deal from spending many days in hospitals while trying to find the best answers to my wife’s issues and so I thought I was very well prepared for my own. What I would like to share with everyone is that there are some very basic “ must do’s”in putting the best food forward fighting MM. First, find the best hematological oncologist that you can find in your area , and back that person up with one or two others so you and they can bounce things off each other. Try to get an oncologist that is a hematologist that specializes in MM and some of the other blood related cases. Meet with them with a list of your questions and do not leave the examining room and all your questions have been answered. Remember there isn’t such a thing as a stupid questio.For the rest, you can always work with your team at the Myeloma Crowd. I suggest that you try to reduce your stress level as much as possible, exercise every day for an hour to hour and a half followed by a healthy breakfast. Eat well and get the advice of a nutrition specialist that is versed with your particular needs but keep it healthy. Ask your doctor to have you speak to their nutrition specialist on staff. Meat should not occupy your plate more than once or twice a week. Remember, doctors are in most cases nutritional illiterates. And finally get a good night sleep with blessed dreams and repeat the next day. I was diagnosed in 2019 when 80 years old, no SCT, ( Stem ell Transplant) and am now on my third treatment with Daratumumab FastPro, Dexamethadone and Pomalidomyde. I’ve never really achieved remission but like to say that my cancer is not that active. I’m currently pwatching my monoclonal proteins ( M- Spike) and Light chain ratio carefully as they are modestly on the upswing. Hope this helps

I was diagnosed February 8th 2016, Stage 3, kidney failure, vertebra collapse and lytic lesions. My bone marrow was 90% blasts. I was admitted to hospital as an emergency. I commenced induction, had 4 cycles of CTD (I’m from UK)! And had STC 30th June 2016. It was tough and fraught with many complications, so much so I was given 50/50 chance of survival. I lost my central vision in my left eye due to haemorrhaging. I’m here, thank the good Lord and have had no treatment since. I am coming up to 8 years in remission. My bone marrow after transplant was MRD-ve. I have adapted my diet and take 8g of curcumin a day.

My daughter diagnosed SMM in March 2023with 25% plasma cell in BM and it is IgA kappa with light chain ratio 48%. No symptoms were there up to observation of 6 month except ostopenia. Doctor decided BMT and it done in February 2024. After BMT she is on maintenance therapy till date. M spike not detected now since BMT otherwise before treatment it was 4.5. Now my daughter feels healthy.

Yes, a positive share group... this is worthwhile to ignite the flames of hope not be diminished... hey, if it works for someone else, I can hope too!!! I am only a caregiver for my wife but trust me when I say that MM is not only tough for the patient but for those close as well. Our journey started on mid-2021 but months before had LOTS of dizzy & fainting spells, June diagnosed & verified by bone marrow biopsy July 2021. Followed by 4 cycles of RVD immunotherapy and Melphalan/SCT Dec 2021. This period was mentally & emotionally tough as you grapple with your emotions & the serious & fatal nature of MM, so intense fact finding & research followed plus Eureka moments discovering the many support groups and organizations such as this not only explaining the technical/medical jargon but mainly enlightened by actual shared stories/experiences thru various stages of progression (both failures & successes). Glimmers of hope are kindled as you scroll thru a multitude of cases with the common conclusion that MM is not a regimented procedural certainty but highly individualistic! Each case is the same yet different. It works for others, it doesn't for others but hey, new methods are continually cropping up and new trials opening up... message being Don't Give Up!!! Luckily for us, after a year of Revlimid maintenance, remission &MRD negative with zero maintenance attained on March 2023.... where we've been since then, living life normally with no meds!!! A fairy tale ending which unfortunately we know won't last when reality strikes and it relapses... when, we don't know and what next is unsure but choices and options are there to select from and we'll address that when the time comes. Hopefully there might be some new warriors at their early stage who read this and hope that they too, get a fairy tale ending too. God bless us all🙏

Getting MM literally saved my life! Let me explain: I was diagnosed in Feb. 2018 and didn't need treatment right away. Then in Jan 2020 I was told I needed spine surgery (unrelated to MM). I had that and then had two Stem Cell Transplants-May 2020 and then in Sept. 2020. Both were 15 days each in isolation because of covid. I've been in remission since then and I believe it's because we went aggressively at it with the tandem transplants. I do a monthly maintenance regimen with Velcade and Solumedrol and also take Revlimid 3 days per week. I have a very positive attitude and I make treatment day one that I look forward to-because it's keeping me alive! My spine surgery was the result of the MM original diagnosis - I started doing MRI's, PET scans and Bone scans every six months and they found a benign tumor in my spinal canal and it had tripled in size between June 2018 and Dec. 2019. It was intertwined with spinal nerves and was blocking 90% of the flow of spinal fluid. In fact, when I first met the neurosurgeon at the pre-surgery appt., he was amazed I still had full movement of my arms and legs and said I was very lucky I hadn't had a massive stroke or full paralysis from the tumor because it was blocking so much fluid flow. Surgery was removing 5 inches of my spine to get the tumor out, and then putting in plates and screws to fix. I feel back to normal now but getting MM saved my life! I would have been dead from a massive stroke or would be paralyzed if not for the MRI's, Pet Scans, body scans, etc. that all found the tumor. My belief is to find the positive in your situation-whatever it is. We're still ALIVE and we have options that many do not have!

I'm halfway through my third cycle of DRVd induction and my IgG has dropped over 80%, light chains have almost equalized and are within the normal range. The specialist is even using the term "partial remission." Which is all good and encouraging. My weekly blood draw now shows my overall protein levels are below normal and the local oncologist is recommending boosting plant-based protein intake. I munch partially-salted mixed nuts in the morning to stymie the Rev nausea and have Greek yogurt on my breakfast kibbles instead of milk. What are other good sources of protein or supplements? I want to up my protein, not bulk out with muscle or fat gain.

Hi I’m cmml -1 diagnosed 5/2023 doing wait and c no stem cell said to old I’m 78 in good health anyway just going with flow this is to rare 4 in a million they don’t know much some treatment but not for me yet stay in touch everyone