I was diagnosed in Nov 2021, IgG Lambda MM. I have t(4,14). I have been MRD negative or quite close to that since June 2022, when i had my ASCT. I took Revlimid 10 mg and Velcade 1 mg as maintenance beginning in Sept 2022. At the two year mark after my ASCT, in June 2024, I was taken of Revlimid, and my Velcade dose was reduced from 1 mg to .7 mg. I get Velcade every two weeks and for the past three months it has made me very sick and I throw up the night after I get the shot and I am really nauseous for about a week after I get the shot. My phosphorous, LDH and other kidney indicators were very high today and I am concerned that that the meds are hurting my kidneys (my protein numbers seem to indicate that I am still in remission). Does anyone ever just take the week off of chemo? I am interested only in people who have considered skipping a treatment and have made a decision one way or another. To be clear - I like my doctor and follow his advice to a t. I just feel that my LDH, phosphorous and other numbers seem to indicate that my organs are suffering more than my cancer is right now and should I take a week off to try to give my kidneys a break? I am not seeking advice, but I'm interested in experiences, and I'm grateful for them. I listen to my doctor. I am interested in hearing about others' experience. Thank you for your thoughts and experiences.

Hello All, I was just diagnosed Dec 2024. Just starting to get a handle on things. Any recommendations on what I can do for my back pain? I have lesions on my spine. Will it get better with the treatment? I just finished my first cycle. Iam high risk, stage III and 46 years old.

Since my SCT in September I have had occasional bone pain that doesn’t last very long and for the most not in the same spot. I also have lots of snap, crackling and popping. Is this something of concern? I had a PET scan in December showed no active myeloma and told I was in complete response in January. I mentioned to the oncologist and she said let her know if continues. Thoughts?

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Are there any diet restrictions to slow down the progression from SMM to MM? I have read here and there that vegan diet is better for people with SMM. Is there any downside switching to vegan?

My friend's lactate dehydrogenase level is extremely high. What does this mean? What can she do to bring it down?

Hello All. Just to keep you in the loop. There may be changes coming soon to Medicare and Medicaid as the New Administration has indicated they like a Republican lead bill to heavily cut Medicaid spending and cuts to Medicare. Some state are already trying to back out of MEdicaid expansion that has helped cover the cost of care for tens of millions of people including children, the disabled and pregnant women. I will let you know more as it moves through the chambers. This is sure to be contentious. In the meantime, make sure you have the best coverage for you and if you are covered by Medicare and or Medicaid make sure you do your part. Reapply for Medicaid benefits if you qualify before your year runs out. If not you will be automatically be dropped.

Hello all. I’m looking for input/tips/suggestions from people who have gone through Car T as an OUTpatient. While it’s the same treatment as inpatient, the outpatient presents different circumstances. My target is May and we will be renting an apartment for 30 days to be near the hospital. Hoping to benefit from your experiences. Thank you!!

What is your experience with Darzalex/Daratumumab ( sub q injections every 2 weeks) and adding Venetoclax? I am considering this new treatment option. I am currently on Darzalex/Daratumumab with Dexa. I have AL Amyloidisis and MM - AL labs are good, it is the MM that remain elevated.

Hello All, If you are having trouble getting Revlimid covered by your insurance and Lenalidomide which may be hard to access, I have heard of patients asking doctors about other alternatives. Always contact your drug manufacturer to see if they have a patient assistance program.

I have been taking Valcave for maintenance. It's been working for me the past 4years. I go once a week for treatment but it was better then Revlimid. That medication gave me DVT in my right leg and PE in my lungs. This is just my experience with Revlimid. Stay strong and talk with your doctor about the difference med that could help. I'm praying for all of us to stay strong.

I WAS TAKEN OFF RVD ABOUT FOUR YEARS AGO BECAUSE BECAUSE MY HEALTH HAD BEEN DETERIORATING. I HAVE TURNED OUT TO BE IN TOTAL REMISSION SINCE THEN AND HAVE HAD NO TREATMENT. MY MAJOR PROBLEM HAS BEEN SEVERE NEUROPATHY AND LUNG ISSUES CAUSED BY MY CHEMOTHERAPY. I WAS OVERDOSED BY VELCAID WHICH CAUSES NEUROPATHY.

I was diagnosed with IGA multiple myeloma four and a half years ago. I completed, 16 weeks chemotherapy and then completed a successful stem cell transplant. Following my 100th day testing showed complete remission. Remission lasted until last May when a solitary plasmacytoma was detected in my upper humerus bone. A PET scan showed the tumor very clearly. But no other site involved . Following radiation I started daralex faspro. An additional PET just before surgery showed multiple lytic lesions throughout my body. Surgery was suggested because of damage to the bone and worry of fracture. I had a complete reverse shoulder replacement in November. Following surgery Velcade and dexamethasone were added to the chemotherapy. These were to work to reduce the lesions. They seem to be working but on a lumbar vertebrae it not recovering as one would hope. So we continue chemotherapy and will be back to radiation on the vertebrae. The hope is to get back to remission. Does anyone have experience with IGA? It's the second most common but a little more aggressive than IGG. Thanks for any experience you can share.