Myeloma newly diagnosed

@susanp2139 Welcome to Mayo Clinic Connect. You will find a great group of people here to support you and answer questions based on our own experiences.

Be gentle on yourself. Please don't "awfulize" things. While we may have the same or similar diagnoses, we are each unique persons. What works for one may not work for another. Rest when you need to rest. Follow your medical team's advice and instructions. Keep a journal if you'd like, of your symptoms, how you are coping, etc. Ask questions if you don't understand something. Focus on the positive.

Yep, that's a lot of things, isn't it? How long ago were you diagnosed with MGUS or SMM?
Ginger

@gingerw
Weird thing. I was in a car accident. I swerved to avoid a deer and ended up totaling my car and going to the Emergency Room. Ct scans showed lesions on my skull and neck. Well….. yes the deer was my guardian angel . I did all the tests, got two opinions and was diagnosed in February. I begin treatment in March 9th. The diagnosis is multiple myeloma. I have been journaling, meditating and a whole lot of praying. Every step towards treatment causes me angst. And then I get through it and I feel better. I don’t always feel positive. Sometimes I’m angry and sad.
Sue

@susanp2139 hello Susan, my best advice came from a man named Mike Katz who lived, I believe, 27 years with myeloma. His advice was to get organized, not in all of life but for myeloma testing and treatment. I met him when he was an advocate for the international myeloma foundation.
My husband has lived 16 years with myeloma and I still have to recount information about his past treatments and testing fairly frequently. Just the ever changing meds and doses can be challenging.
My husband was diagnosed with full blown myeloma with lytic lesions as well. MGUS and smoldering myeloma are the precursor to myeloma and a lot of people now are diagnosed with those, but that won’t always lead to myeloma.
You said you are starting treatment on the 9th, what treatments are planned? Did you seek out a specialty clinic or doctor?

I also was just diagnosed with MM and start first treatment next week. I wish you much success and strength of spirit. Let me know how your first infusion is.

@auntieoakley I was diagnosed with the full blown MM. I initially went to Wausau Aspirus Cancer Center. I had more tests including a bone marrow biopsy and diagnosis. I am getting treatment in Aspirus near me. I live in Michigan’s Upper Peninsula. I will eventually be referred to Mayo for a consultation about an auto transplant.

@donna195 welcome to Mayo connect, and the club you never wanted to join. I hope you can find the information and support you need here. I do not have myeloma but I have walked every step with my husband, and if I can answer questions, I am happy to help. About a dozen types of treatments and a couple of transplants later we are still walking the walk.
May I ask what treatment you are starting? How are you doing with all of this?

@auntieoakley
Thank you for reaching out. I was disgnosed with MGUS IgG lamda in June 2023 , SMM in May 2025 and MM in March 2026. I have had 2 bmb, PT CT scan and 2 pelvic MrI’s in past 9 months. I had an appointment january 13 with my hematologist/oncologist to discuss treatment for SMM and getting a second opinion on treatment options because of my history of DVT, Stroke and Leiden Factor V discovered the summer of 2023. My doctor sent me to the ER because of a large swelling in my neck and I was hospitalized for 13 days in January for a rare abscess in my neck caused by streptococcus pneumoniae .

During my stay they uncovered a small PE in my lung, a spot on my left kidney and two leaky valves in my heart. At the time it was overwhelming but I am grateful for the experience because a follow up MRI of my kidney and pelvic region showed that instead of 2 pelvic focal enhancements I now have 10 with the largest being 2.2 cm. I slso have a mass on my left kidney suspicioss of renal cell carcinoma . My m protein increase 33% since December 2.

I have a full body NM PET scan This Friday to address all my isdues but they have ordered Daratumumab/Darvalex for first infusion to see how my body reacts. There is a concern about adding Revlid because of my inherited thrombosis.

I have been cycling between grief and the strength if a warrior goddess. I am 60 with a loving spouse, family children and grandchildren. My goal is to live to 104. I am struggling with the speed of which this transition occurred but trying to becstrong for those who love me while screaming on the inside. I have all of my medical records organized and I have researched this disease and treatment for the past two years as my energy wained.

I have no idea how I will react to treatment but I feel confident in my care team that they are all well versed in all of my underlying conditions. Thank you for reaching out. I am praying for good results.

@susanp2139 Buy diarrhea medication ahead of time in case you get diarrhea as a side affect. Everyone I talked to that had taste problems did like I did and got chicken broth to drink.

New CAR T-cell therapy extends remission in heavily relapsed ...
CAR T-cell therapy for multiple myeloma involves genetically modifying a patient's T-cells to target the BCMA protein on cancer cells, providing a highly effective, often one-time treatment for relapsed/refractory patients. Approved options like cilta-cel and ide-cel show deep responses, with some trials showing 33% of patients remain progression-free at 5 years.
PubMed Central (PMC) (.gov)
PubMed Central (PMC) (.gov)
+4

Stay positive and strong !
I have Plasma Cell Leukemia,
It’s a highly aggressive blood
Cancer. Sub type of MM .
You can beat it !
All the Best !
Induction therapy will become normal . Don’t worry,
and get tons of Rest !