Hi Will3 & Paula - I've said Point Blank to my Onc and my John Hopkins Onc, that they're Treating MM Wrong. They Overmedicate and cause more harm than is necessary for far too many.

I recently lost a friend due to his very low MM Activity, which was being Overtreated, causing his immune system to be beaten down beyond its ability to fight off an infection. He went to Hopkins for his monthly DarzFP shot (had been for about 18 months), contracted bacterial meningitis, ended up in the hospital a just a few days after that treatment visit and never recovered.

The much bigger problem is the lack of early detection. All it would take is an annual SPEP and Urine Protein test. These would find low levels of monoclonal proteins, long before full blown MM has caused damage.

These simple blood sample Lab tests that should be part of a person's Annual. These would provide early detection that would provide such a greater chance of a person's survival. MM is a known problem for many decades. Those who are diagnosed early with just MGUS can, through Diet, Supplements and Exercise, contain their MGUS and even reverse their condition from progressing.

https://www.mskcc.org/cancer-care/clinical-tria...
Sloan Kettering is currently conducting a Clinic Trial for people with MGUS and SMM, with No MM Meds, using a Plant Based Diet and Supplements to prevent their condition from progressing to MM. Though there about 100,000 cases of MM in the US, there's around 16.5 million Cases of MGUS (including people over 70) that will become MM (around 35,000 per year and around 12,500 deaths per year) if not diagnosed and prevented. Treatment is not always required. Often, Lifestyle Changes have shown to be all that's required.

My MM was missed and was clearly brewing quietly for many years until it resulted in a fractured L4 and a diag of 80+% bad plasma. I've been very fortunate but it's both the MM Meds I received (DarzFasPro - it was not standard in 2021) and my self-education that gave me confidence to form my own treatment plan that my local Onc has supported.

Thank you Helen

Sorry to hear this Lady T . Talk to your Oncologist. There may be other avenues they can take.
Sending lice , hugs and prayers your way

Hi LadyT: I hope you are doing well. My wife made 13 visits to Orthopedics and they still blamed everything on arthritis. After her last visit to Ortho, she went to a critical care facility, after blood work, the MD called me on the phone at 10 p.m. and told me to get LeAnne to ER ASAP. Diagnosed with Kappa Free MM a few days later. After pleading for ASCT after her light chains reached to practically normal, they said no. They continued chemo, on to Bi-Specific, and then CAR-T. Unfortunately we knew nothing about MM, and I am sorry that I didn't do more research. She would not survive. I am now finishing up on a 50 page document to send to an attorney. I have done the research but so sadly it is too late. So all of my friends out there, do your research, and don't count on your doctors for the right answers. LeAnne was in a nationally recognized cancer facility. If she had been diagagnosed earlier and provided with the right treatment, she would still be here to watch her two precious grandchildren graduate from high school. Be vigilant my dear friends!

Greetings from Alaska upon having my first CT scan they said they didn’t see the lesions either but the orthopedic surgeon told the oncologist no intervention he says I’m sure the lesions are there just by looking at the bone structure. So I went into a brace for nine weeks to give my backs stability, and when the next CT scan was performed all lesions where visible. I’m happy that they did not need to do any procedures because now I am able to do quite a few things exercise without back pain. So may God bless you and hopefully your September appointment will yield many answers.