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!

Saluti from Italy! I was diagnosed Feb of ‘23 and wondered and wandered about how to treat my disease. Kind of hit bottom last December and accepted the advice of my 2-3-4 th opinions to start treatment. Just finished my 4th round of induction and numbers are great 👍🏻 so with Drs approval I’m taking a couple weeks drug free. I feel great but still plan to be on maintenance and not do the SCT or CART. I’m living life in the present moment with gratitude 🙏🏼 Peace and blessings to everyone 😎

I am one year S/P transplant and have been on Pomalyst since January of this year. Has anyone experienced fogginess, brain fog, difficulty focusing with Pomalyst. I would categorize my level somewhere in the significant range, with some days a little better than others. There are days when I have trouble coming up with everyday words. I make mistakes when adding events to my calendar. I certainly do not feel like myself and am very frustrated. In speaking with my specialist about it, I questioned the need for a dementia or neurological examination and he did not feel my problems are dementia related but was ok with a neurological exam to rule out stroke or other issues. I’m wondering if I am the only one struggling with this. Thanks!

Hello All! Any experience a swollen tongue as part of your MM diagnosis?

What are # of days people have taken to collect 5 million stem cells. I will be back for 3 day tomorrow. Current total is 4.11 million with fewer collected today than yesterday

Durante 5 meses del 2017 tuve toda clase de análisis. Mis médicos buscaban un cáncer primario que ocasionó la metástisis en mis huesos, hasta que por fin en Mayo del 2017 con un estudio de positrones el diagnóstico llegó: Mieloma Múltiple y a partir de ahí tuve 4 tratamientos diferentes, orientados a una remisión que me permitió realizar el transplante autólogo de médula ósea a finales del 2019. Dos años de mantenimiento con Lenalidomida, después un año sólo, con buenos niveles hasta que en Junio del 2023, regresó el Mieloma. A sido muy doloroso. El tratamiento con Daratumumab durante 5 meses fue una experiencia muy desgastante, mi cuerpo fue muy atacado, perdí 20 kilos, baje mi densidad y no se erradicó el Mieloma. Dos meses de descanso y a partir de Mayo del 2024 se inició otro tratamiento con Lena, Dexa y Carfilzomib. Después de dos ciclos de quimoterapia semanal, mi cuerpo ha sido más receptivo, no resiento tanto los efectos secundarios, estoy mejor. Espero realizar el tercer ciclo para los análisis y ver si ya se alcanza la remisión y no necesitar los seis ciclos. Tengo mucha confianza de que así será, después de todo con el diagnóstico inicial me dieron una expectativa de 36 meses de vida. Ya llevo 7 años, es decir, 84 meses y quiero tener otros 7, 14 y por qué no, 21 años más. A mis 65 años diagnosticado cuando tenía 58, ya pude conocer a 2 nietas y un nieto, quiero poder verlos crecer como hasta el momento. Espero con ansia la evaluación. Sólo comentar que aparte de mi médico hematóloga, no recibo apoyo o ayuda de nadie más, sólo de mi esposa que es mi cuidadora y las experiencias de personas que están en una situación parecida. Lo que ha sido determinante es la actitud, nunca desfallecer y tener mucha confianza en que vamos a superar este obstáculo, como hemos superado muchos otros. Luis Alberto Yamamoto Vergar

I was diagnosed in May 2016, started induction in June, received a Stem Cell Transplant in November, and then Revlimid maintenance throughout 2017. It returned in January 2018 and was in weekly infusion/injection treatments through December 2022 but these failed to reduce the Myeloma. I was at 95% myeloma when I decided to give CAR T Cell therapy in March of 2023, and it worked to put me in remission for one year. An entire year without chemo has been wonderful. But the reality is in my case, it comes back. Still, research for myeloma has advanced over the years and new treatments are available for relapsed myeloma. I gained some strength over the year I was in remission to keep going.

This book is dedicated to all my fellow cancer patients. NEVER give up! NEVER give in!! As I look back on the last three decades, I am the luckiest person on the face of the earth! Beating life-threatening brain surgery (twice), cancer (three times), and morbid obesity (only once, but it was a long hard fight) has taught me the true meaning of words persistence and relentless. For more, please visit us on the web at; https://www.amazon.com/dp/B08QRB3H3G Thanks, Keith 3X cancer survivor