Hi there, I would like to get in touch with a MM "Colleague" who is also diagnosed with t(4;14) which potentially qualifies as High Risk - and who has relapsed. What is your experience with treatment after relapse? Clinical Trials, regular treatment, etc. After nearly four years of MRD negative (as guessed by my physician; "guessed" because MRD is not allowed in Holland/Europe), I relapsed sometime in December 2022. At the moment, I am in a wait-and-see stage. My physician managed to make his/our hospital eligible for a clinical trial - MonumenTAL - a bispecific - from Janssen & Janssen. Although the M-Protien was low (3.7) at the last blood test, I feel that my body is slowly giving in to the pressure. I increasingly suffer from bone pain, especially in my hip. Anyway, hope somebody will share his or her experience. And maybe we can go through this ordeal together.

Wondering; to anyone on Medicare/Medicaid. Is it possible to have a Multiple Myeloma "Specialist", to work with the oncologist/haematologist? Will Medicare/Medicaid cover the cost? I have asked this a couple of times before this and I've yet to get an answer.

Hi all, wanted to provide an update and information on latest treatment option. Update and time for a new round of treatment. Over the past six months my Serum Kappa has been doubling and now has reached the threshold at over 100 to initiate a new course of action. My last visit at Moffit was looking at Talquetamab, ten-day hospital stay and follow up treatment. At Moffit yesterday under the expert care of the amazing Dr. Baz here is the new plan. Venetoclax, a selective BCL-2 inhibitor administered at home, Daratumumab, local oncologist administered with (Darzalex) showing really good results with my very specific translocation t(11;14). This specific translocation is present in only 15% of MM cases. Bone Marrow Biopsy to start in 10 days, PET scan a few other tests to follow. I’m feeling really positive with this plan. There always seems to be a new “plan B”. Keeping positive and hopeful, Peter

What are the main side effects you are experiencing? My partner with MM has a persistent cough and issues with his respiratory system. Thanks.

Has anyone tried Sea Moss? Friend is encouraging me to take this to help with inflamation, joint, digestive issues, and anti cancer effects. My friends mean well but I get neverous when it comes to herbs with smoldering myeloma.

My mom was recently diagnosed with multiple myeloma. She just finished her 2nd cycle of treatment. She is still experiencing a lot of back pain that wraps around to the front. Has anyone had this feeling and how long did it last before the treatments kicked in and lessened the pain? Her treatment is Daratumumab, Revlimid, and Dexamethasone.

I was on Rev and Dex until the rev stopped working. Then on to polymist and Dex. Side effects are mostly from the dex. Messed up sleeping. 5 years on the Rev after stem cell and a couple so far on polymist

So, dealing with dehydration. Bloodwork says my kidneys are still okay. Question: doc says take electrolytes daily to counter the dehydration. All I can find that I can tolerate is something for kids called KinderLyte. It has dextrose, though apparently not as much as it tastes like it has. But, aren't we not supposed to take in sugar because it feeds cancer? Have you all completely cut sugar out? I largely have until this. (I know some of the other electrolyte drinks use fake sugars, but I can't tolerate the sugar substitutes.) I feel like I have to decide between risking more cancer or getting so badly dehydrated that I end up in crisis and even possibly damage my kidneys. Any help?

Opening up for discussion sharing thoughts on diets, dietary changes or specific foods people have found helpful for side effects or that they feel are attributable to long term progress free Myeloma? My husband, diagnosed July '22, started Vegan, whole food, plant based diet. He has had terrific relief from the neuropathy in his feet that was presumably result of the Melphalan given during ASCT. He has been starting his day juicing celery before eating anything. When he doesn't juice for a few days we usually see a spike in his bilirubin. Correlation or coincidence? Not sure, but we are going to continue just in case. Also, started yoga, strength training and Peloton.

My husband diagnosed MM July '22 at age 53. He did Induction RVD followed by ASCT. For maintenance therapy he was offered a clinical trial Revlimid and Daratumumab. On Dar injection day we were shocked that they were adding Dex. and Singulair (Black Box label warning on this). Neither drug is not listed in the clinical trial information and we were told this study didn't include Dex. The Trial name is DRAMMATIC. Is anyone in this study and if so, is Dex being required? We are considering exiting the trial. Also, considering getting a second opinion on his MM treatment.

I am wondering if anyone knows about any caregiver support groups specific to Myloma that are online and facilitated. I’m not sure why this is showing up as Rose. I have my own account and my name is chaya.