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

Hello Amy warriors. I ran into this article, which gives a pretty good review of AL Amyloidosis, which is especially useful for newly diagnosed fellow warriors. AL Amyloidosis for Cardiologists: Awareness, Diagnosis, and Future Prospects: JACC: CardioOncology State-of-the-Art Review https://www.jacc.org/doi/10.1016/j.jaccao.2022.08.009

I am in Halifax Nova Scotia Canada & they currently introduced Car T cell therapy for other blood cancers like Leukemia & we were told they are 6 months out for MM. I am grateful that they have it here as I expect my husband will require this. His MM, I have been told, is hard to treat. He is in partial remission right now & will be put on Revlimid & Ninlaro. The Dr. thinks this will keep him in remission for a year. I'm hoping that he'll be in remission longer than this.

I had the Stem Cell Transplant in March 2022 at MD Anderson. All is very good so far. I take Revlimid and Ninlaro for maintenance and should be finished with it in June 2023. My maintenance dose of Revlimid has been arriving late since October. Accredo was just not a good Specialty Pharmacy for me. I just changed to CVS Specialty Pharmacy. I hope I don't need CAR T-Cell. I was told at MD Anderson in December they can only get enough Car T-Cell to conduct 2 Car T-Cell therapies per month. I have thought CAR T-Cell was a miracle drug for MM. It just lacked enough trial time to be approved as a first line MM therapy. Is that wrong?

I want to try CAR T but can’t get in clinical trial’s because I’m not relapse/refractory. I’ve got active m-spike and high free light chain/ratio with no remission but no increase. They don’t know what long term treatment or active myeloma will do to my body yet I don’t qualify for something that might put me in remission.

Three weeks into LUMMICAR-2 trial at Huntsman in Salt Lake City and doing well. Fortunately I have not experienced any of the expected side effects. Feel very blessed to be part of the study and praying for best results.

I have relapsed myeloma but doing well on Darzalex for now. Specialist says I’ll probably need car-t at some point. But I’m almost 76 and maybe too old. Any thoughts?

Being a myeloma fighter and survivor is like climbing a mountain. The further you go up, the steeper it gets, the air gets a little thinner. Being nonsecretory is like climbing it blindfolded. I’m honored to be sharing the climb with the members of this forum. Let’s just put one foot in front of the other. Don’t look down.

Had my CarT therapy in September 2022. The process was good and much easier on me then the 2 BMT’s I had 10 years apart. I’ve been fighting, and beating MM for 19 years! I was in remission from the CarT for 16 months, a lot less time than my BMT’s! Right now I’m in the process of finding out just how much of the MM is back. I go to the University of Iowa tomorrow for my 2nd biopsy in 2 weeks, more blood work and an MRI. A spot was found on my L14 vertebrae, so more tests are needed to see what it is exactly. My Dr has laid out 3 different possible treatments, which we’ll decide the best one for me once all the test results are back! Stay strong my fellow warriors!

I just received approval for CAR T at Stanford. I'm not sure yet what kind. I completed a stem cell transplant in December that does not seem to have worked. My PET scan shows new disease in a few areas. My bone marrow biopsy sample does not appear to be good enough to provide accurate info even though they though they had a good sample. This happened previously as well. I don't know why my bone marrow doesn't cooperate! Very much looking forward to when they can get this information out of our blood!