Why won't my doctor discuss cure options for multiple myeloma?

Hi Lynda, You should try to find an oncologist that specializes in myeloma. I’m sure you will be offered more options that are out there. I was diagnosed 5+ years ago and had 4 failed treatments. In March I had CAR-T cell therapy and my bone marrow biopsy is negative-no myeloma cells seen. Do not give up but be your own advocate for the best care and treatment plan. Cheryl

Cheryl, thank you I really appreciate that information. I mean I am going to University of Miami and I’m seeing a different partner on Thursday after my pet scan to find out, what the what and where we go from there hopefully I get some more definitive answers. Stay in touch take care thank you. LYNDA.

I have multiple melanoma for 2 years now and being treated by the VA and happy with the treatment. Because I have been in and out of maintenance 3 times I've been referred to Hershey for possible CAR-T cell therapy and after what Lynda just said I might do it.

I mean what Cheryl

Hi Walter. Yes it is definitely worth it. I am now in a clinical trial with elranatamab that is to augment the T-cells. It lasts for 6 months with lots of tests to check on the progress. Also three bone marrow biopsies! Still feeling great. Providers are very pleased too. Be well and stay strong. Cheryl

New here too, bone marrow biopsy last Tuesday confirmed! Petscan tomorrow! Letting Go and letting God. I’m saying the Serenity Prayer 50 times a day!

Lynda! Always ask for the disc if you get a scan, an MRI or an X-ray. They are your images and you can print them out and refer to them when talking with your doctor. The app “Osiris-X” costs money but lets you read the disc so you can print it. Remember MM makes for brittle bones. They can track the damage and offer advice.

It sounds incredibly frustrating to feel like important treatment discussions aren't happening, especially when you're bringing healthcare experience to these conversations. Many doctors focus initially on immediate treatment options before discussing long-term outcomes, and it might help to directly ask about prognosis, remission possibilities, and what "cure" means specifically for multiple myeloma, as this can vary significantly between patients. Your medical background gives you great insight into asking the right follow-up questions, and advocating for the comprehensive discussion you need about your treatment goals and expectations.

I was told you will always have them multiple myeloma, but it goes there. We mission to stay strong. I know that you can fight this no matter why never give up. I am a healthcare professional on myself and it is hard being a patient and not the actual one is given a care but now you need to let someone take care of you again hang in there…..