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?

My MGUS, diagnosed in 2017) progressed to high risk smoldering myeloma in early 2025. It has likely progressed to active myeloma or darn close according to my labs. My labs have been showing steady increases in IgG Kappa light chain ratio and it's at 238 now ( was 188 6 weeks prior) but my Calcium, Kidney function, and Hemoglobin have been normal. My latest hemoglobin dropped to 12.5 from 13.3 six weeks prior. So here's my question. I have felt in the past two weeks tingling in my toes and feet which has become more continuous now. I feel it more in my left foot rather than right foot. I have sent a note to my myeloma doctor at MSKCC earlier today. I am concerned that it may be amyloidosis but i also know it can come with myeloma. I will have a PET scan in 10 days and repeat blood work in a bit less than 4 weeks. My last MRI in mid July showed no lesions. If anyone with just Multiple Myeloma and Myeloma plus amyloidosis could weigh in as to whether this symptom raises a red flag of amyloidosis? I may be starting treatment sooner rather than later as per my doctor.

I have always been very active. For the first year+ of my diagnosis I struggled with fatigue issues to the point that it significantly impacted my quality of life, largely because of my inability to be outside playing and exercising. I have been taking Jakafi for about eight months and on my current dose for four months. I am almost back to my normal activity level! (Hooray!) What I’m wondering is, how long can I expect my current “normal” energy level to last? Anyone else been through this process? Thanks! John

Has anyone had side effects after getting IVIG? I received it Friday and 36 hours later got a terrible headache, chills and body aches. If you did get some side effects what were they and what did you do to alleviate them? How long did the side effects last? I talked to my oncologist and he said to take Tylenol and if it does not improve to come to the ER at the cancer center.