Hello, I was diagnosed with Multiple Myeloma in September 2023 at age 37. Upon diagnosis, they stuck a tube in neck vein to clean up my blood (apheresis) because I had hyper viscosity (thick blood) due very high IGA (7,000+) and M-spike (over 6.0) levels. After that they started me on the quadruple induction therapy (daratumumab, revlimid, Velcade, dexamethasone). The induction therapy worked for about 4 cycles before my disease developed resistance to it and my numbers became stagnant. Following this, my doctor switched me to venetoclax (400mg at first, and then 800mg) with weekly 20 mg of dexamethasone - because I have translocation 11;14. Within 60 days, venetoclax brought my M-spike down to ZERO. After my M-spike was eliminated, they did a bone marrow biopsy and found that my disease had evolved from standard risk to high risk by gaining 1q23, which is considered a high risk cytogenetic abnormality by the International Myeloma Working Group.... Has anyone had a similar experience where they started out with standard risk then evolved to high risk by gaining 1q? How has the journey been for you? Did you have a stem cell transplant, how did your disease respond to it (did you have a long remission, or did you relapse quickly)? What maintenance therapy drugs did your doctor put you on as patient with 1q? Have you experienced frequent relapses as a result of gaining 1q? I'm having a stem cell transplant on 5 SEP 2024. If you have 1q and have had a stem cell transplant, I would love to hear about your experiences 🙏

Managing fatigue can be challenging, however, gentle exercise along with health coaching may help improve the symptoms of fatigue. This study is being done to gather information regarding the effectiveness of a mindfulness-based physical activity program with remote monitoring and health coaching in ≥65 year-old specifically for patients suffering from fatigue in multiple myeloma. If you would like to participate, tap the link below: https://healthtree.org/myeloma/community/mayo-clinic-fitness-study

Can someone help me interpret my Myeloma FISH panel

Hi! We're looking for newly diagnosed myeloma patients OR patients on their second line of therapy who have had an autologous stem cell transplant. Compensation will be provided for your time. If you'd like to share your experience, please react to this message or comment 'I'm interested.

Just got put on my 4th round of meds to combat MM. Was put on Cyclophosphamide in June and had extreme fatigue and a bloated stomach, which causes me to get very winded. After 2 months found that I went through all that for nothing. It did not work and my light chains went even higher. Now on Carfilzomib, Pomalyst and Dex. Getting scared and need to do whatever I can to get this under control. What do I need to eat? I suppose it tastes terrible. I'm 75 and have had MM for over 8 years.

Hi I am a 75 yo women with multiple myeloma for 6 years I was on Lenalidomide 10 mg now due to feeling tired I am on 5 mg what is the outcome of getting a lower dose it is safe to go back to 10 mg please any one with knowledge of this I would like an I put thanks very much. Gondola

Hola a todos¿que tal? A mi madre le diagnosticaron mieoma multiple,el cual le ha causado insuficiencia renal,siguiendo un tratamiento de hemodialisis. Por favor me podríais recomendar que suplementos o dieta seria más beneficiosa para ella.Muchas gracias a todos.Un fuerte abrazo.

Has any one in this group been diagnosed with Amyloidosis Light chain ? Does this website ever discuss this disease since it’s so linked to MM? If not does anyone have suggestion about different forums. Ty!

I was diagnosed with Multiple Myeloma February 22, 2024. I didn’t know I had cancer until my arms were hurting and the pain kept getting worse and in February I went to the ER and had xrays done. Both arms were broken and that’s when cancer was seen. I did chemo through injections and radiation on my arms after having surgery on both. I am now doing tests to prepare for stem cell transplant in October. Is there anyone who has gone through this procedure? Advice for after my hospital stay? TIA

I am a 72 year old female who was recently diagnosed with multiple myeloma this January 2024. I have completed my induction phase of DVD and now on maintenance care. My doctor is adding lenalidomide 5mg for 21 days , off 7 days with Darzalex 1x per month and 4mg dex 1x per week. I have chose not to go for a SCT at this time. I would like to get a feedback on lenalidomide since this is a new med for me. I appreciate your inputs.

Has anybody had experience with Talquetamab (Talvey) after effects?