Hello. Looking for advice on lower extremity swelling. My wife is currently taking Spironolactone 25mg and it is working. She cannot take Lasix due to an ingredient’s closeness to a sulfa, to which she is allergic. The issue is every night for 3 hours, she has intense pain in her lower extremities. Going to try switching from evening to morning for the medication. Anyone have any advice/experience with this?

For the last 13 cycles I have been taking Velcade, Darcelex, and dexamethasone. My Lambda Light Chains have steadily increased are presently at 75! These drugs are not working! I am totally confused as to which protocols to move forward with! A list of choices are Stem Cell Transplant, Car-t therapy, Bi-Specific antibodies, or a mixture of Carfilzomib, Pomalidomide and Dexamethasone. My goal is to receive the best treatment which will have the longest lasting remission and has the least side-effects.

Hello I recently relapsed 18 months after transplant and I am wondering if anyone has stop taking Dex or just reduced the dosage in their new therapy regiment. Thanks

I recently spoke with a representative from United healthcare/AARP to obtain information about joining a Medigap policy. I currently have Medicare/Medicad A&B coverage along with Part D drug coverage. The agent stated that if I we're to get a policy in New York I would be terminated off the Medicad portion. My 6 month window to purchase with out underwriting is expiring this week. I would appreciate any feedback Thanks

Hello, I am in my 3rd year of remission from MM. My mental health is slowly deteriorating as my husband has had to leave the USA after being here with me under 1yr. He was my sole supporter, assisted with me in every aspect of this journey from shopping, doctor visits and my mental support. I am asking if anyone knows who I can approach to address a letter written to the US Immigration consulate/Jamaican visa office expressing my need to have my husband here with me in the US indefinitely due to my health condition? I have previously submitted a letter from my Oncologist, but that doesn't seem to be sufficient in these times with immigration. I appreciate any suggestions you all may have. Thank you

My wife has MM and we live in Plymouth, MI Is there a Zoom support meeting group?

Hello everyone My husband is considered high risk Multiple Myeloma failed the stem cells transplant this May, I was going through his test and found the Gene testing, I asked Chat GPT to explain in simple terms and he is diagnosed with 17p/TP53 loss, has anyone been diagnosed with 17p/TP53? My oncologist never mentioned or explained it, only she kept on telling me he is high risk Has any one had the CAR T CARVICTY with some good results with 17p? It will help me a lot with your experience. Thank you

Hello , Has anyone experienced an increase of CMV 38 days post Cart T? If so how did you progress and/or treat? Hasn’t shown up until now and post IVIG…. Not sure it is related though. Hope you are all doing well🙏🏼

I have been on kyprolis/pom/dex for 3 months now. For the past month, on the day of my kyprolis infusion I get the chills that evening. It is gone by morning. Has anyone else experienced this?

I was wondering if anyone else had liver lesions associated with MM.That is my greatest concern right at this moment in my journey. Here is my MM journey so far! II was diagnosed with multiple myeloma in January 2025 at 50 yrs old. . I broke my right femur the day after Thanksgiving in November 2024 after trying to connect an air fitting to an airline. I went to the er that night and they informed me that I had cancer, due to part of my bone missing from X-ray. After MRI, CT, PET, Biopsy of femur, and Bone marrow biopsy all within about 4 to 5 weeks. They told me I had MM igG kappa with a 1q+. M-spike was at 3.0 igG was 4241. Pet scan showed multiple bone lesions and liver lesions. I had 10 radiation treatments the end of January for the tumor on femur, was in sling for about 6 months due to bone being hollowed out by MM. It took till May to get cleared to do any kind of therapy to rehab it. Started treatments in Feb but due to not having insurance we just started with dar and Dex. Got insurance first if March. We added valcade and revelmed. All my MM numbers dropped m-spike got down to .26 and igG was 610 but the lesions on my liver have gotten worse more and they have grown, m-spike was slowly climbing to .46 and igG was up to 680. So first of August we switched to Kyprolis and revelmed(had just refilled) still with Dex and dar dropped the valcade. Then yesterday I started pomolyst dropped the revelmed. I will be having a biopsy on liver within next 3 weeks to determine if it has mutated from the original for of MM that was in my femur. If this line of treatment doesn’t work on the liver lesions then next step is car-T treatment. I actually started feeling pretty much normal in June for the first time since November. I think for me it was just getting back to doing all that I could versus just setting thinking I couldn’t do anything like I could before. There are things I cannot do like I did before MM but I can still do things just have to pace myself and know my limits(which I overdue sometime. Sorry this is so long been trying to get it posted for month or so. Just want to say Thank You to everyone who post on this forum. It has been very helpful in my journey. My greatest comfort in all of this is I know God is in control. Even though the outcome one day may not be what I want, I know it will be for His Glory and I get to set a example for my children to trust Him in good times and not so good times.

I was diagnosed with multiple myeloma in January 2025 at 50 yrs old. I broke my right femur the day after Thanksgiving in November 2024 after trying to connect an air fitting to an airline. I went to the er that night and they informed me that I had cancer, due to part of my bone missing from X-ray. After MRI, CT, PET, Biopsy of femur, and Bone marrow biopsy all within about 4 to 5 weeks. They told me I had MM igG kappa with a 1q+. M-spike was at 3.0 igG was 4241. Pet scan showed multiple bone lesions and liver lesions. I had 10 radiation treatments the end of January for the tumor on femur, was in sling for about 6 months due to bone being hollowed out by MM. It took till May to get cleared to do any kind of therapy to rehab it. Started treatments in Feb but due to not having insurance we just started with dar and Dex. Got insurance first if March. We added valcade and revelmed. All my MM numbers dropped m-spike got down to .26 and igG was 610 but the lesions on my liver have gotten worse more and they have grown, m-spike was slowly climbing to .46 and igG was up to 680. So first of August we switched to Kyprolis and revelmed(had just refilled) still with Dex and dar dropped the valcade. Then yesterday I started pomolyst dropped the revelmed. I will be having a biopsy on liver within next 3 weeks to determine if it has mutated from the original for of MM that was in my femur. If this line of treatment doesn’t work on the liver lesions then next step is car-T treatment. I actually started feeling pretty much normal in June for the first time since November. I think for me it was just getting back to doing all that I could versus just setting thinking I couldn’t do anything like I could before. There are things I cannot do like I did before MM but I can still do things just have to pace myself and know my limits(which I overdue sometime. Sorry this is so long been trying to get it posted for month or so. Just want to say Thank You to everyone who post on this forum. It has been very helpful in my journey. My greatest comfort in all of this is I know God is in control. Even though the outcome one day may not be what I want, I know it will be for His Glory and I get to set a example for my children to trust Him in good times and not so good times.

Has anyone else had problems getting approval for the clonoSEQ test from Kaiser? I've had the test denied and my appeal of the denial was upheld by an external reviewer. Kaiser is saying the test is not medically necessary. How can I persuade Kaiser that it is medically necessary?

Hi: Has anyone else been through this while dealing with severe diverticulosis. I had four months reduction chemo Jan thru April 2024. Stem cell in May. Now on Darzalex and Revlimid. I began with real problems with going to the bathroom about 6 weeks ago. I thought it would calm down. I made the mistake of eating at Taco Bell. Severe issues with cramps, frequent bowel movements, etc,. I went on a low residue diet that calmed it down. But, it has not gone away. I am due for Darzalex shot in 2 days I see oncologist at that time and plan to tell him what is going on. In the past I had antibiotic treatment that took care of the problem. gastro diagnosed me with "severe diverticulosis needing surgery". My last colonoscopy failed because equipment could not make it past the diverticulosis and swelling. If I get a colonoscopy it has to be done at cancer center hospital. Does anyone else have a similar issue. I read that if I have diverticulosis I should not be on Darzalex. I am high risk with a FISH study showing 3 bad chromosomes, so doctor is wanting me on Darzalex. I have 12 more Darzalex shots as part of treatment. Although my cryoglobulin is just at 10%, I have MGRS, coupled with the bad chromosomes. I am losing weight. Hubby and I had a virus back in early summer. Me on May 3, him on June 3. Not Covid. We both lost sense of smell and taste. It is coming back very slowly Still, it is causing a reduction in appetite.

Hello out there, friends. I have a compression fracture on my L3. Any suggestions on how to treat this (please do not tell me to consult a doctor, I am waiting for call backs from many doctors) including exercises that helped, any other thoughts. Has anyone been MRD negative and had a compression fracture?