Diagnosed MM in May 2025, week 10 of 16 DVDR, lab work shows treatment is working great. Has anyone experienced ankles swelling? Doctor prescribed Lasix, which helps until next treatment.

I was diagnosed with MM 8 months ago. Ay that time, my spine had already collapsed with 12 vertebrae fractured. Some of the fractured vertebral bodies do not have lesions. I do not have recent bone density number, but my bones are translucent in X ray images. I have been on IV Zometa since February 2024, 4mg monthly. But I have been experiencing progressive compression of the spine and new fractures. Also, my ALT has been dropping steadily one month after the start of Zometa. Right now the reading is 37, a little below the normal range. Does anybody out there has similar experience? Has anybody used different drug for bone health? Thank you in advance for sharing.

I was diagnosed with MM in 2023 by a bone marrow biopsy. My Iga and lambda numbers were very high but my oncologist did not order the test that types the MM, he just confirmed my assumption that I had Iga lambda myeloma. I changed hematologists and she did order further testing and scans that hadn’t been done and said that according to testing I actually had IgG kappa myeloma. She has never explained to me when I’ve asked, how I can have elevated Iga and lambda values and actually be IgG kappa. Has this ever happened to anyone? Does it sound reasonable? I was also diagnosed with kappa restricted Non-Hodgkin Lymphoma later in 2023. Could that skew the results? No one has been able to give me a straight answer. I even paid for a second opinion from Stanford and still it’s vague.

60 yo high risk 6 months post transplant and my m-protein is still at 0.2, anyone else have same experience?? Was told may take several months to clear and also told may never clear. Thoughts??

Hi, I am Shirley. I live in Australia. I was diagnosed with AML in October, 2021. Like many, my symptoms were not that obvious. I was getting short of breath but that was about it. I was told I had only a short life expectancy. A BMT was not available for me. I was put on a 5 week intensive of chemo during the COVID lockdowns. No one could visit me in the hospital, including my husband. That was a bit of a tough time, but I was innundated with love from many through messages and calls. I went into remission but then 18 months later I relapsed with some extra mutations. One new mutation was TP53. I was now told I could expect about 6 months more life. I was put onto cycles of azacitidine and venetoclax. I did 14 cycles until I could no longer bear to continue these. I have lived way past the expected time, now coming up for almosts 4 years since diagnoses and I am still in remission for AML! I attribute this to prayer. However, I unusually developed MDS late last year. This usually comes before AML, but now I am battling cycles of blood tranfusions and again struggling to breath. I'm still here though! I wrote a book during these past 3 plus years called Living on the Edge of Eternity. Some of you may find it encouraging.

I was diagnosed in January 2021 with high risk oglisecretory Lambda IgA mm. I was on the quad induction before ASCT in September, 2021. I’m currently on just Dex and FastPro. I have had 8 bone marrow biopsies with LOD of low numbers (no more than 24 and trending at 4-7). Although these seem to be good numbers, my IgK sequence A is what drs are following. This is the comment I have received from all 8 biopsies: “Given LOD per million (see page 3) and tracking behavior, it is possible that the presence of IgK Seq A in this sample may reflect “background “ rather than the initial clone of interest.” I guess this is uncommon. My bone marrow sample last time was over 4 million cells collected. Anyone else with this comment on their ClonoSEQ results? Thanks!

Hello there. I start Krypolis tommorow and was wondering if anyone experienced any of the bad side effects that are listed the moment you open up the website. Very concerned 😟 Thank you.

Does anyone else have macular edema and Multiple myeloma . Is there a connection?

I am a bit concerned that my flc ratio is slightly elevated (2.18) My doctor said insignificant until it’s 8 or higher but I’m concerned I’m headed to a relapse. My spep is normal with no m spike and my bmb from 2 weeks prior looked good. I have had stress and diarrhea. Should I be concerned?

I’m about to start the second round of Erantamab. So far, I’ve had high temperatures, an allergic reaction to Allopurinol, vaginal bleeding and overwhelming exhaustion. Do these symptoms subside as the myeloma cells are killed? At the moment, the treatment is worse than the disease. Any advice would be greatly appreciated. Thanks, Janine

My daughter is approaching 100 days post SCT and is still experiencing extreme fatigue and having difficulty breathing after just short walks. Is this to be expected?

My husband will have SCT day -2 on August 11. I will be his caregiver, but haven’t been told to “isolate” ahead of that time. Is that typical? I am starting to be concerned about that. Thank you!

Was diagnosed with lambda light chain in Dec 2023. Put on REVlimid 25 mg +Darafaspro+dexameth. Very shortly after starting Rev, broke out in patches of very itchy rash. Rev reduced to 10mg + Triamcinolone. Steroid cream. Rash resolved. Achieved remission. About 1 yr later rash returned and labs showed remission slipping. Rev replaced with Pomalyst 3mg. Rash becoming wide spread. Again Triamcinolone Dermatologist performed biopsies: result, Hypersensitivity to unspecified drug therapy. (I’m simultaneously on autoimmune rheumatoid arthritis meds). My oncologist (at a nationally renowned cancer university research center) wants me off rheumatoid meds before making myeloma changes. Am off 2 of the 4 rheumatoid meds and am crippling with pain in addition to the rash/itching! Suggestions? (PS As a former researcher myself, I’ve kept impeccable data, dates, drugs, & photos. It sure looks like the rash starts to flare 3-4 hrs after taking Pomalyst) Thanks!

After 10 years of of worsening anemia and a two year diagnosis of SMM, I was confirmed earlier this week of having Myeloma. There is so much good information on these web sites, but I get lost with all of the medicine names and acronyms. Other than googling every other sentence is there a good way to learn what all of this technical jargon is? Thanks

Just started Pomalyst and have an itchy scalp. Anybody else experiencing this.

Hello everyone. I am a multiple myeloma patient who underwent D-VRD therapy (4 cycles) and an autologous transplant. Despite achieving complete remission (CR), my neutrophil count did not increase after 6 months, so the doctors conducted a genetic test to check if I have Benign Ethnic Neutropenia (BEN) and if I lack the Duffy antigen, which was confirmed by the genetic test. I wanted to know if any of you have ever heard of this. Thank you.