Anyone have experience with daratumumab (Darzalex) to treat Myeloma?

Welcome, @wanettra. I expanded the title of your discussion to connect you with members like @tally9004 @wrussell @gitti555 @jefe @meg1685 @heathermcfarland, who have experience with daratumumab (Darzalex) in the treatment of multiple myeloma.

Wanettra, have you been diagnosed with multiple myeloma or are you caring for someone? Is daratumumab being added to the treatment plan? I look forward to learning more about you.

I was on Daratumumab for 4 years. I started with the infusion and then moved to the subcutaneous version. I had very few if any side effects. It worked well for those 4 years. I was also on dexamethasone at that time.

@jefe my husband begins this with his first treatment next Friday. He has been on revlomid multiple times, and I forgot how nerve wracking it could be when he starts a completely new regimen with all new support meds.
Did you have any notable issues from this medication?
You wrote that you were on this for 4 years, did you get a durable response or are you taking a new regimen?

I didn’t have any problems with side effects the entire time I was on it except for a bit of itching at times. I was on Revlimid, Daratumumab and Dexamethasone from 2018-2022. It kept my myeloma under control during that time. It started to not work so opted for a stem cell transplant and switched to Pomalyst as maintenance. That worked for 2 years. I had a CAR- T treatment last March and am currently in remission.
Multiple Myeloma is something you
can not be complacent about. You need to have a good myeloma specialist and always keep learning and advocating for your husband.

My first treatment almost 3 years ago for MM was Darzalex Faspro subcutaneous weekly along with 20mg of Revlimid, dextametasone, and acycovir daily. Stopped dextametasone after about a year. Still take acycovir daily. Revimid was contiuously reduced to now 5 mg every other day (still for 21 days then off 7 and repeat). Darzalex was reduced from weekly to biweekly and now monthly, always subcutaneous. I have been in remission for about a year. No significant side effects except mild fatique. IMg keeps getting too low so an infusion about every 4-6 moms brings it back to an acceptable level.

Hello --
In July, I started a two-year treatmment plan of Dara-VCD (Daratumumab with bortezomib, cyclophosphamide, and dexamethasone) for a rare blood disease, known as MGRS. I live in France, and I am being treated in France, and this is the treatment that is also used here for myeloma. I know it is FDA approved in the US, but I don't know if it is readily used.

I take an oral medication weekly, and then receive two injections weekly at the hospital. My side-effects have been minimal. Some minor nausea, some fatigue and shortness of breath that worsened after 6 weeks as my hemoglobin count decreased -- but a blood transfusion fixed that quickly. In the beginning, I also had very sensitive skin on my arms, and one-night per week of insomnia. But, actually, I have no idea which of the meds in the combo is causing which issue. The doctors told me that the side-effects are genereally "well-tolerated", and I would have to agree. I am more bothered by the frequency of medical appointments that I am of the side-effects of the drugs.

Good luck to you and your husband.

@jefe thank you for responding. He had his first stem cell 4 months after diagnosis, and a second 11 months later, then two years revlomid maintenance. The back on revlomid, dex after a year and a half, then a break, then revlomid, dev, with Ninlaro then a break. Then another year of same. He has been on a break for a year and a half again. This time he is going on Daratumamab, pomalyst, dex.
I noticed others here have required transfusions, and they are sending my husband for type and cross prior.
Did you require transfusions?

I had platelets after my stem cell transplant. I have been on IVIG infusions monthly since my CAR-T treatment. My immune system has not recovered yet. I have not had as much as a cold since the treatment so the IVIG must be working.

Started treatment Feb '25 weekly- Two shots to the stomach: Darzalex & Valcade... no problems.

Revlimid- 21 days on 7 off
Acyclovir- twice daily
Dexamethasone- started on 10 pills and thankfully down to just one pill on treatment day which is now once a month.

Side effects for me-
Revlimid- rash first two rounds, Dexamethasone- kills my sleep 🫤 even with being down to one pill monthly. I've started on Melatonin nightly... helps a little.

Started process for BMT probably Nov/Dec.

@dickmm
I’m glad my story was helpful and in reading some of the other comments from those that have recently been diagnosed, it seems more context may be useful. Bottom line, get your lab tests and understand (from literature or questions) what is important - out of range may or may not be significant, or but way out of range, either high or low, needs to be examined, especially if it changes. And second get to a MM specialist, not just an average hematologist/oncologist. My journey was undoubtedly influenced by being a 30 year survivor of prostate cancer where I saw not only a highly recommended local urologist, but also traveled to be assessed/treated by some of the best in the country. So to start, my primary care physician noticed some troubling numbers on a routine 6 month lab report and she sent me to the local hemo/oncologist who concurred that I likely had MGUS or smoldering MM. He arranged for me to see a MM specialist at a large hospital cancer center (2+hrs away). Independently, I decided to see a MM specialist at Mayo Jacksonville (about 9 hrs away) where more tests and appt was scheduled over 1.5 days. A second trip to Mayo 3 mons later confirmed MM and described a treatment plan. This plan was identical to the one described by the local (2 hr) specialist. And although there are more elaborate treatments (stem cell, car-t) my understanding is they are appropriate only if other less invasive treatments don’t work. Now three years later my treatments are handled locally and I see the “local” MM specialist every 6 mons. I have not been back to Mayo.