Last 9 mos. treatments have been weekly with Velcade and steroids and Darzalex every 3rd week. My M-1 Spike protein has been pretty steady at 1.1 to 1.3. Still have some fatigue, weakness and get out of breath easily. I get XGEVA shots monthly. Bones (except lower back mainly from golf) are in good shape. Same as with kidneys. I’m not eligible for bone marrow transplant due to age
My 2 oncologist. Will soon discuss a possible different drug regimen and frequency change. But I get the… read more

Had SCT 2/22 and leukemia is in remission, however multiple myeloma is not. Doctors at John Hopkins are taking a wait and see attitude because they say the myeloma hasn’t changed. I’ve lost about 90lbs and have no energy most days. My spleen is enlarged and the doctor says that’s what’s causing the weight loss. My appearance to me looks extremely frail. Appetite is good and I’m taking in a lot of protein but still no weight gain. Doctor says that he’s going to talk to the myeloma team and… read more

I am going for the C T Scan , PET Scan,Eye Cataract Extraction lens implantation,this May and this I got to get through the problem but l pray to God please help me to overcome the problem.🙏

I have had a stem cell transplant and been on maintenance therapy for 2 1/2 years. I have high risk MM with translocation 14;16. I have been MRD negative since the transplant. Will I need to stay on this treatment for as long as it works?

I just had my first follow up after my SCT in November with my local oncologist. He just yelled at me because the nurse didn’t go through my med list one by one. She asked if anything changed. No. I stupidly asked doc if he really felt I should be taking 2400 calcium daily with D3 if my calcium is 10 already. He screamed at me there’s nothing here about your calcium pills. Final answer was ‘ it says you’re taking 200 a day’. No clue why his report said that, but he had no answer for me. He has… read more

My doctor says I'm not in remission; A lot of the tests are measured to gauge remission. I wonder if other doctors say you are in remission when Mspike is undetectable.

Shipmates
I was in perfect health, well maybe a few pounds overweight. I never took any pills except for my migraines. No high blood pressure no high cholesterol, no history of cancer in my family. I’m the first. I had my blood tests done at my physical in November 2020. Everything was fine, no problem. March and April 2021, I received my Covid vaccines and in November, 2021, I was told I had way to much protein in my blood. I needed to go to an oncologist and was diagnosed with… read more

I have stem cells collected and stored since May 2018. Waiting for transplant. Do I have to get a dental Clarence done?

I'd like to know how you made the decision to stop the MM Meds.
Was it your choice or doctor recommended - any details would be great.

I'm now MRD Negative. My Doc has placed me on MM Meds holiday. Now with the Jan 2022 Report about MRD-SURE, I plan to stay in Labs Monitoring Mode with no MM Meds and only add back Revlimid, if a future Labs indicates the need. Keeping my fingers crossed.

MRD-SURE Link:
https://www.cancernetwork.com/view/mrd-adapted-...

Thanks,
Larry2