I just read the research article about CHIP and am thinking I need a discussion with my oncologist. Three years after my SMM dx, I was found to have CHIP with the DNMT3A mutation. The article sounds as if this was a good thing, however, I was treated with cyclosporine because the leukemia specialist believed it was the cause of infections and neutropenia (unrelated to SMM). The neutropenia is now resolved but I am wondering if the mutation persists?

Positives Shares Group is a community where patients and caregivers can share inspiring stories, successes, artwork, hobbies, recipes, advice, lifestyle tips, or anything about themselves and their journeys. Join Here: 👇 https://healthtree.org/myeloma/connect/group/87tPU6BgpkqMXXCv5kke?utm_source=social+media&utm_medium=connect&utm_campaign=PositiveShares&utm_content=general

When I was diagnosed in the fall of 2005 I had two grandkids. This pic was taken a couple of years ago, more grandkids have been added, and now we are up to 23! That's me (curly blonde hair, purple shirt) on the front row holding one of our grandbabies. Right after the MM diagnosis in 2005 I jumped into chemo, then a stem cell transplant 6 months later in March 2006, and went back to work the next August as a high school math teacher. The remission has continued since the transplant, which I know is an outlying event. I don't take any maintenance drugs, but faithfully go in for cancer checks every 6-12 months. I'm grateful every day for the blessing of being alive, for my tight knit family, and for my loving Heavenly Father.

Hello! I am in remission and 6 months post ASCT. I am about to receive my first round of vaccines. Does anyone have any feedback on their own experience with post transplant vaccines?

Please join us this year for the 3rd Annual Black Myeloma Health Virtual Movement Event the weekend of August 17th and 18th. This event hopes to spotlight multiple myeloma to spread awareness and education in the African American communities that are disproportionately affected by the disease. We hope you will invite friends, families and colleagues to join you as you create your own teams.Building a team is easy and fun and we are here to assist you. Please reach out to Michelle@healthtree.org if you have any questions. Register for the movement event at this link: https://give.healthtree.org/event/2024-black-myeloma-health-virtual-movement-campaign/e594172?c_src=BMH6/27.

I know it's early but everyone should be gearing up for Medicare review. If you are approaching Medicare age, please take the time to consider Medicare Supplement Plans. Don't just consider Medicare Advantage plans. I will be presenting a webinar in October reviewing upcoming changes to Medicare. Don't forget to apply for financial grants if you need one. Multiple Myeloma-Medicare Access is still taking applications.

I was diagnosed with MM (multiple myeloma) in March 2005. Throughout 2004 I was suffering from severe back issues. Beginning around November I was getting sick and losing energy. In March I was thought I had a flu and went to the doctor. He immediately sent me to the hospital and it took about 2 weeks of tests to diagnose I had MM. I was in kidney failure (not the flu). Through the summer I was in chemotherapy and in the fall had a stem cell bone marrow transplant. After about 4 years of dialysis it was found my kidney function returned. In 2013 my MM relapsed. This time tumors were found on my spine and resulted in my legs becoming paralyzed. I had another transplant plus radiation to shrink the tumors. It took about 18 months, but I finally got to the place where I could walk again. So far that second transplant is still holding. It's 2024 and in April I celebrated my 72 birthday. I'm still able to work effectively. I'm a piano teacher. I thank my doctors most certainly but also to the Good Lord who isn't finished with me yet. One can survive, and even thrive with MM. I pray for more and more survivors.

I was diagnosed in August of 2023. I went to ER in late July, had been vomiting, eating very little and generally feeling bad. I had been bitten by a tick in June and found out later that the symptoms I had, while similar to Lyme disease (from the tick bite), are also like MM. In ER, after multiple tests, I was told my kidneys were failing, and I was transferred to another hospital to start dylasis. I was on dylasis for 3 months, but because of God's blessing, my kidneys recovered enough, so I came off dylasis. I needed to do 2 stem cell collections, not getting enough the first time, but the second time, i harvested enoug! Had my SCT in April and am in remission. My 100 days will be up at the end of July. I've been working a couple of days a week, few hours each day... good therapy for me. (I work in the court system, and, since COVID, my door is locked and i can talk to attorneys through a video/audio system.) In the last few weeks, I've been feeling much better... not as much fatigue nor pain. I did get a state issued canibas card and have found the edibles are good for the bone pain. An MRI in May revealed I have new spinal fractures but can't have kyphoplasty until after the 100 days. It's so good to feel better! Hang in there, friends. We're in this together, and there are lots of discoveries being made in this field.

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!