Diagnosed IGA Kappa smoldering in 2016, active in 2017. Had Rd induction and AST in 2018. MRD negative post transplant. On Revlimid maintenance for five years until relapsed a year ago. Switched to DKd in December 2023. Achieved very deep response - within five weeks, M protein disappeared and Kappa light chains dropped from 500 mg/L to about 6 mg/L (normal range is 3.3 - 19.4) and have stayed at this level since then. I have two myeloma oncologists. One is suggesting we drop the Kyprolis/Dex and just stay on Dara maintenance. Kd does have side effects - no sleep the night of the infusion and possible damage to heart. The other oncologist, who works for a well known myeloma research clinic, is reluctant to do that because no clinical trial has been conducted to determine if PFS would be adversely impacted by dropping the Kd. Question - after achieving a deep response on DKd, or any combination for that matter, has anyone gone on just Dara maintenance and if so, how long have you stayed in remission.

Stem cell transplant eligible but declined it and went straight to maintenance. I am looking for feedback from those who are stem cell transplant eligible but skipped it.Did they take 3 drug regimen or 4 drug regimen for induction? What made them skip stem cell transplant? Did they achieve MRD negativity or not? How are they doing? How long did their first remission last?thank you.

I had AST in September, and I will be starting Lenalidomide as maintenance treatment. I read somewhere that it sometimes causes diarrhea. How true is this? Is there anyone who is using this medication and has experienced the diarrhea.

Hi All, I read that radiation exposure can increase the chances of getting Multiple Myeloma. I served in the Navy on a nuclear submarine tender where radiation exposure was always a possibility. Anyone out there in Health Tree who also served in the military where radiation exposure may also have increased the possibility for now having Myeloma? Peace, Brian

I was a City Clerk for 35 years. During my last year I began having problems with my left hip. I retired, got boarded, and went to work at the County collectors office. I was constantly getting up and down with customers coming in to pay their taxes. After tax season I decided to go to doctor as I thought I had arthritis in my hip. They took X-rays. The next day I got on line to see if anything had been posted. The radiologist statement made me sick to my stomach. It said my hip bone looked like broken glass. I then went to a hip surgeon, followed by bloodwork and all kinds of tests. He called me at work and told me he was sure I had Multiple Myeloma and was sending me to a doctor who was an orthopedic oncologist. After more X-rays she told me to go home and not do anything for a week or my hip could shatter. I had surgery the following week where they placed a titanium rod in my thigh and connected it to my hip The crazy thing is I replaced a friend at the tax office that was diagnosed with MM. We are now MMSisters. This was 9 years ago. I was given 5 years. I went through several different chemotherapy and a stem cell treatment, that did not work. I feel blessed I have not been sick accept with the Stem Cell treatment.

For those using Cymbalta...what side effects do you experience?

After a year remission, my M-spike started to rise and I started Darzalex FastPro as a single agent on Oct. 14. I had done D-RVd in the first line of induction but couldn’t tell the effect of the Darzalex by itself when on all four. I am using it as a single agent because I had so many side effects from the four: pancreatic lesions, possible SCC in the back of the tongue, optic nerve damage, abnormal foramens and densities in my jaw, severe sinusitis, diverticulitis, and purple nails. I feel totally shut down after each injection. I have learned that the injection is 1800 mg regardless of weight, and that it is considered overdosing if you are lightweight like me. I weigh a little less than 115 lbs. If I were doing the Darzalex IV, which is by weight, the dose would be 16 mg/kg, which for me would be 832 mg. The injection is more than double that! There are risks, such as neutropenia, from overtreatment. There seem to be greater risk of adverse effects from the IV as opposed to the injection. I am wondering how to weigh the relative risks of overdosing vs IV delivery? And what about comfort and effectiveness? Has anyone experienced both the injection and IV, or has had the IV? I would love to feel less overwhelmed by the treatment, which seems logical to think would be possible with a lower dose. I would prefer to feel better on the treatment even if it were a little less effective, especially if it caused less side effects.

If you or a loved one has been treated with ELREXFIO™, sharing your experience could make a meaningful difference for others. Interested in participating? Reach out by emailing Olivia at olivia@mypatientstory.com. ELREXFIO is a prescription medication used to treat adults with multiple myeloma who: •have already received at least 4 treatment regimens, including a proteasome inhibitor, an immunomodulatory agent, and an anti-CD38 monoclonal antibody to treat their multiple myeloma, and • their cancer has come back or did not respond to prior treatment

Hi everyone. I live in Fort Wayne IN. We have a new support group next meeting is Tuesday November 5. See link to our website. Feel free to attend in person if you’re in the area or virtual from anywhere https://www.myeloma.org/fort-wayne If you’re interested in the zoom meeting invite I can send this week Jim Fortwayne@imfsupport.org

Hi everyone. I live in Fort Wayne IN. We have a new support group next meeting is Tuesday November 5. See link to our website. Feel free to attend in person if you’re in the area or virtual from anywhere https://www.myeloma.org/fort-wayne If you’re interested in the zoom meeting invite I can send this week Jim Fortwayne@imfsupport.org

I just posted this but not sure which group i put it in..so here it goes again. I am taking teclistamab aka tecvayli. Since taking the abdomen injections I have developed a belly. I am wondering if it is caused by the injections or a change in metabolism. Has anyone else experienced this. I am not taking dexametasone..the usual culprit for a belly. Diet and exercise have not changed.

Hello, for those who have had autologous stem cell transplant, did you experience acne/pimples on your face and scalp after about a month and half? After about 50 days after my ASCT, my skin suddenly started breaking up and I'm now having itchy pimples on my forehead and scalp- something that I've never had before (even as a teenager, I never had acne/pimples during puberty, so this is really weird for me). Thank you for your feedback.

Started Lenalidomide for maintenance, does anyone know if achy joints and bones are a side effect of the medicine?

Anyone taking teclistamab...tecvaley with injections in the abdomen? I have gotten a large lower belly since tarting it and wondering if the injections are the cause. I am not taking dexamethasone...the usual culprit for a large belly. Anyone one else???

Is there anyone on this post that received treatment for AML at Memorial Sloan Kettering in New York? I realize there are several Sloan Kettering hospitals in New York. I have a care giver that would like to speak to someone who was treated for AML at Sloan Kettering in Brooklyn or was a care giver for a patient there. Thank you!

I am passing the following along from one of my coachees: I have a question or two for "On Oct 15th, I started feeling a cold coming on in less than 24 hours. I was admitted into the James Hops and put in isolation. The reason was I contracted the new COVID-19 strain. This is some powerful stuff and it will hit you hard in a short amount of time. My BP dropped as low as 80/50 and my temperature was as high as 102.5°. My hematology oncology doctors ran tests on top of tests, and based on the results, this was the new stronger COVID-19 strain that is running rampant, and it is hitting immunocompromised patients. So they started me on this IV-only medication called Remdesivir; normally it is a 5-round treatment, but since I responded so well after the 3rd round, they felt I did not require the remainder 2 rounds. Now I have been home under COVID house arrest till the 28th under self-monitoring. #1. As far as vaccines, I still need my flu vaccine, but since I had COVID-19, they were on the fence about that vaccine. Obviously, I’m getting the flu vaccine once I’m in the clear. #2. I don’t know about the COVID-19 vaccine yet. I went to the ASCO website to read up on it, and I’m starting to look into this document. Vaccination of Adults with Cancer ASCO Guideline. Kamboj M, et al. Patrick, I think the Health Tree Foundation group is well aware of the new COVID-19 strain. But I wanted to share my experience dealing with this nastiness. And to help other patients be aware of this experience. ASCO Guideline. Kamboj M, et al. Patrick, I think the Health Tree Foundation group is well aware of the new COVID-19 strain. But I wanted to share my experience dealing with this nastiness. And to help other patients be aware of this experience.

I have been on Revlimid maintenance for a year. I was recently informed that I have to change next year to the generic formula of Lenalidomide because my insurance will not cover Revlimid. Has anyone changed from Revlimid to its generic form. And did you notice any changes.