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.