Your Feed

Filter by
See content from
Back to the latest
Avatar
AnneB
Multiple Myeloma Discussion • February 25, 2023
Allergic to IVIG? Sharing Tolerable Options
AI-generated title
I have attempted to have 2 different types of IVIG; Octagam and Gammaguard S/D Less IGA. I had some quick allergic reaction symptoms to them. Has anyone had similar reaction and found another product that was more tolerable? I have been recommended Privigen, as well as adding some pre treatment meds. Thanks for the help. Anne
Avatar
MonicaV
Multiple Myeloma Discussion • February 25, 2023
Combining Zometa & IVIG: Pros & Cons?
AI-generated title
I'm considering having Zometa and IVIG at the same appt. Can someone share the pros and cons of Zometa and IVIG being at the same appt. Travel is not an issue.
Avatar
Susanb
Multiple Myeloma Discussion • February 22, 2023
Managing the Wait for CAR-T: Tips?
AI-generated title
I am getting ready for my diagnostics and cell collection at MDAnderson week of March 7. What restrictions or suggestions does patient have for the 5-6 weeks wait when T cells are being processed? I am feeling both excited and anxious about the whole Car-t treatment.
Avatar
Jmam218
Multiple Myeloma Discussion • February 22, 2023
Bone Biopsy Experience: What Was It Like?
AI-generated title
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)
Avatar
MACBILL71
Multiple Myeloma Discussion • February 21, 2023
CAR-T: When Did Your Markers Start to Drop?
AI-generated title
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.
Avatar
eotwin
Multiple Myeloma Discussion • February 21, 2023
CAR T Experiences for Seniors?
AI-generated title
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
Avatar
JennyA • Admin
Multiple Myeloma Discussion • February 21, 2023
Share Your Abecma Story With BMS
AI-generated title
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.
Avatar
SiemVeldboer
Multiple Myeloma Discussion • February 18, 2023
Grateful for 4 Years of Remission, High-Risk MM
AI-generated title
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.
Avatar
hopefulmom
Multiple Myeloma Discussion • February 18, 2023
Avoiding Sickness on Treatment: Your Tips?
AI-generated title
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?
Avatar
MonicaV
Multiple Myeloma Discussion • February 18, 2023
Join Our Lab Values Support Mtg Tomorrow
AI-generated title
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!