I have been diagnosed within the last 2 years and I am wondering if I am going to have to deal with the constant pain in my back. From what I have read it seems as though I will have the rest of my life with this condition. Is this true?

The collateral damage of multiple myeloma for me has been extensive compression fractures in most of my thoracic spine. The fractures have healed but the aching pain with any activity that has a gravitational pull (like walking, standing) remains and is quite limiting. I have tried many forms of PT, stretching, Pilates, acupuncture as well as a RFA nerve ablation. Nothing has provided the relief I hoped for. Wondering if anyone has had similar issues and found something that helped.

Extramedullary Disease (EMD) I have been recently diagnosed with MM with extramedullary disease as my high risk factor. I would be interested to hear from others here on when they were diagnosed, what treatments they received and how they are doing. I have seen the recent positive developments with some bispecifics having good response rates with people with EMD which is encouraging.

1 q gain. Looking for feedback from patients who have 1 Q gain. How are they doing with treatment. Did they have a transplant? And how long did that work? Any unique problems due to 1 Q gain.? Thanks.

What is your experience with Tecvayli and/or Elranatamab Injection? I understand multiple infections, on antibiotics, maybe emergency room visits. Also what is your experience with Talvey. I understand that you lose your sense of taste, lose weight, nails fall off and skin peels. And Myeloma comes back when treatment stops. Curious about these treatment options.

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Would you like to learn more about your medication and cancer side effects and hear what other patients recommend? Explore the Side Effects Solutions Tool, see what other patients are saying, and share your own solutions. https://buff.ly/4dHeWfr

copay.org has opened for grants for Medicare patients Please everyone, don't let this enrollment period go by without reviewing your Medicare Advantage plan and Part D. You need to make sure the coverage you have will continue to cover your drugs as they may change for the upcoming year. Don't get stuck with a plan that may not cover your expensive oncology drugs.

Hello, I am a high risk “”q1 and T53 “” MM, had the SCT and now I am VGPR , can patient with high risk tell me how they have been in remission and how many relapse they had

Supposed to have my dara infusion (for maintenance) on Monday. I have a cold. Have to wait until Monday morning to see if I can go or not. I don’t want to screw up my schedule but I’m also concerned that my labs will be off if I have a cold. Thoughts ?

Hello, I'm trying to figure out if I have a neurological issue or If it's normal after 3 1/2 years of treatment to have this type of side effect . Has anyone else experienced consistent confusion feeling like you were drunk, confused and dizzy at certain times of day ? For me, it's a routine side effect 3- 5 times a week for the past several months. It seems like since the having Pomalyst . However, I feel that it's also when the dexamethasone wh with certain chemo, combined for example velcade and kyprolis, and empliciti. I've had brain MRI And it turned out normal.

After a two-year clinical trial measuring the possible effectiveness of iberdomide (solely, no other drugs) on high-risk smoldering multiple myeloma, my MRD measurements dropped from 273,088 clonal cells down to 692, which of course is great. Yet it's not as close to zero as I was hoping for. Part of the trial's intent was to see if iberdomide could be effective in arresting high-risk SMM's possible progression to MM, but could there possibly be another trial that seeks to drive that 692 down to even less? Feels like with these great results, there might also be a way to prevent MM potential (in essence, perhaps a potential 'cure'?). My team at Emory has been great but they are not aware of any clinical trial that would attempt to further reduce the clonal cell count. Anyone here, especially other providers/clinics, know of anything? Thanks.

We’d love for you to share your thoughts on the next question!

I apologize in advance for this long post but I heard a question raised by a patient during the recent 2025 Medicare update/changes presentation given by Healthtree and wanted to share what I know about Revlimed coverage in 2025 Medicare Part D plans. As many of you may know, the brand Revlimed has been removed from many (most?) Medicare D plan formularies because a generic (Lenalidomide) is available. I don't see any plan which is covering Revlimed in 2025 -at least not in my geographic area. They are covering Lenalidomide. The issue is that there are exclusivity patents and availability challenges. The exclusivity patent for Revlimed's use for MM maintenance after ASCT expired 2/22/24, however, Lenalidomide is just not available in my state. Small shipments are received sporadically from time to time. The market doesn't have enough Lenalidomide so this is a challenge nation-wide. In 2024, I had my January denial overturned and an exception was granted by the plan for 2024 because they had just removed Revlimed from their formulary in December (after I selected the plan). I argued successfully that this was unfair. This won't work in 2025 since I have no choice than to accept a plan which clearly states Revlimed is not covered. Note: Health plans will update their formularies throughout the year so one month a drug can be covered and the next it is not (or vise versa). This is so unfair to patients! I called the pharmacist this morning to ask about this (I can't afford to pay the $360,000 for Revlimed out-of pocket next year). Their process is to do a pre-authorization for patients. They have been successful in getting Medicare D plans to cover Revlimed by exception. For those plans which still refuse to cover it, they save any Lenalidomide they receive for these patients. Some plans are easier to deal with than others (she is prohibited in sharing this information as to not steer me to a particular plan). Here is information I pulled off of the Medicare web site: "For formulary exceptions, the prescriber's supporting statement must indicate that the non-formulary drug is necessary for treating an enrollee's condition because all covered Part D drugs on any tier would not be as effective or would have adverse effects, the number of doses under a dose restriction has been or is likely to be less effective, or the alternative(s) listed on the formulary or required to be used in accordance with step therapy has(have) been or is(are) likely to be less effective or have adverse effects." The pharmacist at my facility states that potentially they could have more Lenalidomide available in 2025. They are not sure given dependence on just a couple of suppliers. This is what I understand. I hope this information is helpful. Please check with your pharmacy/provider to understand their process for getting Revlimed covered if Lenalidomide is not available in your area.

Can anyone reco a myeloma specialist in Baltimore? My father was just diagnosed, unfortunately VERY late stage with hip bone tumor that already metastasized to other areas. Local U of MD hospital wants to send him to UofMd Baltimore oncology dept. Thanks

Did anyone get a medical ID bracelet or necklace for their SCT? Some sites (Mayo, Sloan Kettering) say it's important, but my nurse said she'd never heard of it.

Aloha my fellow comrades 🌺. I am contemplating having Car T at UCSF. I am relapsed refractory with having had at least 6 lines of therapy. Diagnosed in 2020. I am looking to hear others experiences with their journey and time to relapse. Appreciate realness , thanks