I am in complete remission from mm for a few years now after going through different regimes and a failed transplant. Now I have no maintence Revlimid or Dex as it was very hard on me. About a year into my journey I read an article about a lady in Tuscany with smouldering mm who was having great results when adding black seeds to her diet. Her numbers got so much better. I started with sprinkling the seeds in my food until I read that the Black Seed Oil Or Black Cumin Seed Oil is more effective than the seeds. I started taking a wee bit as it can upset your stomach. I now take 1/2 tsp twice a week to this day and will continue to do so. It enhances your medication. It helps it to be most effective. My numbers improved greatly with it. I wouldn’t be without it. That’s my story. I’m just telling you what helped me so very much along with my medication and treatment. Hope this helps someone.

Got to 4.6 million for my stem cell harvest and store. Took 3 days and by last day I seemed to be reacting more to the meds they give you to help release the stem cells. Fluid retention and fatigue. My Dr said that was good. Line came out yesterday and so glad to be back home. Good to know they are there if I need them

Hello friends and help. I was diagnosed on Nov 1, 2021 with IgG Lambda MM with t(4,14). I had an M spike of .81 at diagnosis and a bad plasmacytoma that crushed my T4. I had an ASCT in June of 2022 and had a good response, fortunately. I have been lucky that my bone marrow biopsies (through flow cytometry only) have shown "no sign of cancer cells" for the most part since then. I was quite eager to see if I was officially MRD negative at the 2 yr mark after my ASCT as if this were the case, that would trump the high risk cytogenetics in the factors that determine my prognosis going forward. In many hospitals this might also mean that I would stop maintenance therapy. I am currently taking Revlimid 5 mg and velcade 1 mg evert 2 weeks. I honestly have been counting down to this week for a long time with the hope of learning that I was officially MRD negative. In the state of NY, you cannot be pronounced officially MRD negative through flow cytometry unless the doctor harvests 3m cells and no cancer cells are found (yes! I agree! this is way above the 10^-6 threshold!). My doctor only took 1.9 million cells and although there seemed to be no sign of cancer, he would not declare me MRD negative because he did not get enough cells. He did say that I could stop Revlimid given these results. He did a clonoseq test but I was referred to his hospital after my cancer cells were mostly gone, so I am not sure if they ever had my cancer cells at this hospital for a clonoseq baseline. Two questions - (1) does anyone know if i will be able to be officially declared MRD negative via clonoseq if my hospital did not do a baseline when I had cancer cells? (2) if clonoseq is not an option, how would you feel if your doctor told you. "you should be very happy that you have had a good response and unofficially it looks like you are MRD negative, but I cannot say it officially because we didn't harvest enough cells." Even a few cancer cells can turn into trouble, as we know, which is why I am eager to be 'officially MRD negative.' Sorry this is so long, but I am distraught and would be so grateful for anyone's input on these two questions. ALL THOUGHTS GREATLY APPRECIATED!