Hello, I’m so happy to have found this webpage and wealth of info. I am 44 and My doctor diagnosed me with smoldering or multiple myeloma. I have a bone biopsy scheduled for March 2. I was curious to hear someone’s experience with this. (Does it hurt, etc)

I was diagnosed in 2015 and had an AutoSCT in 2015. I have been on more than four lines of treatment, and 28 days ago had an Abecma Car-T transplant. My question for those that have had Car-T is, when did you start to see your markers go down? It seems my Lamda light chain increased since it was taken before my transplant. Is it too soon to see any decrease in markers? Unfortunately, I do not see my doctor for two more days and wanted to see what others have experienced, thanks.

I was diagnosed in 2006 and have been on different chemo therapy ever since. I had a bone marrow transplant in 2007 which didn't work. So, this is why I'm willing to try CAR T. I would like to hear from senior citizens (I am 71) who have gone thru this therapy. Thanks. Eleanor Olson

Hi everyone, Occasionally the pharma companies invite patients to share their story about being on certain therapies. It helps other patients know what to expect or can also be used to put a face to the reality of the patients' experiences for the company's employees. If you are interested in sharing your story about Abecma with BMS (employees, as a patient ambassador, etc), please contact a BMS representative at: 1-855-436-5866 or visit ShareToInspire.com.

At the start of my Myeloma "trip" (spring 2019) CAR-T was on the horizon for us in Europe. My doctor told me it would probably be the holy grail for MM patients. It would work like an allochtonous transplant without its dire side effects. Alas, it turns out he has been a bit too optimistic. Yet impressive results are forthcoming. Especially since ever more "handles" to beat the cancerous cells are detected. I recently read an article on this platform about scientists/physicians exploring the potential of FLC(Free Light Chain) targeted therapy. Maybe one of these days we may even use the M-Proteïn secretor itself as a target. The "handles" in use nowadays do come with (a lot of) side effects. BCMA for instance is also expressed on healthy cells. And they too will be targeted by CAR-T. Leaving the patient to sometimes suffer from nasty side effects and having to bear the burden of a continuous maintenance therapy i.e. immunoglobuline transfusions to fight off immuno system suppression. One of my MM Coaches being a case in point. Nevertheless there is hope. And ample of it. For a great many different - and new - inroads to fight off MM are investigated or discovered almost on a montly basis. I have been treated with VTD (Induction), have had a tandem (double) autologous STC and I am now on maintenance (Revlimed 10mg). I was diagnosed with a high risk variety (translocation(4;14)). Already during my induction period - so prior to any STC - neither M-Proteïn nor an elevated FLC Lambda was detectable. My hematologist condidered a miracle. I told him Who is responsible for miracles and Who we are to be grateful for. Although doctors/physicians in Holland are frightfully straightforward/transparant and wil go at great lengths to avoid any hint of false hope he became somewhat more forthcoming. Having faith he concluded cannot be that deceptive. He even encouraged me to keep on gaining strength in my "battle" - "trip" sounds rather less warlike and is my take on the diagnosis - to persevere. So far God has been with me. So far MM has not reared its ugly head for nearly four years. My gratitude knows no bounds as you can imagine.

I have been on my treatment regimen for a month now and I caught a cold that will not go away. I started some antibiotics today but I’m so disappointed by how quickly my immune system is weakening. What precautions are you all taking to stay healthy?

The Inland Empire Multiple Myeloma Support Group in SoCal will be meeting on Zoom tomorrow, February 18th, at 10:30am PST. Rebekah Tobin, from Takeda Oncology, will be speaking on "Lab Values" . ID: 842 5371 3805 Pass: 864785 All are welcome to join us!

I've been on Darzalex Faspro/Revlimid/Dexemetesone for almost 2 years now. One year in we lowered the Rev dose from 25mg to 10mg. Myeloma numbers have continued to look good, so we are considering stopping the Rev altogether at the 2 year mark in April 2023. We will continue with the Darzalex shots and blood tests once a month and see what happens. Anybody have any thoughts on this?

Hello! I recently had cells collected on 02/14/23 (Happy Valentines Day!) for Car-T. I had significant joint and muscle pain the first night. Some still discomfort lingers. Did anyone else experience this? If so, did you find anything that helped alleviate your pain? I do have some trepidation regarding the Car-T treatment and side effects, so I appreciate seeing your experiences in this Connect platform.

I went through CAR-T in November 22. Spent the minimum of 10 days in hospital. I did great, no fever, CRS or neurotoxicity. Spent the remainder of 30 days in a hotel a mile away. The set up was great. The program covered some of the cost. The cell therapy Dr.’s were great, I was not part of a clinical trial, just research study. That’s the good news, the bad news is CAR-T didn’t work. 30 days after being released from cell therapy program I developed pressure and pain in my abdomen. CT-PET reveled plasmacytomas surrounding my kidneys and adrenal glands..Twice a day radiation helped get things under control. Will be starting a new Chemotherapy treatment soon.

A big thank-you to Audrey for your tireless effort to build a community for all of us. Like other support groups and the HealthTree community, It is more than a community; it is our second home!

Algorithm for Treating AL Amyloidosis