1. < Blood Cancers & Disorders
Profile picture for wanettra

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

Posted by wanettra @wanettra, Oct 2, 2025

Does anyone use the drug Daratumumab to treat Myeloma?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for katfit
katfit | @katfit | Apr 7 1:17pm
In reply to @sherego "Hello -- In July, I started a two-year treatmment plan of Dara-VCD (Daratumumab with bortezomib, cyclophosphamide,..." + (show)
Profile picture for sherego @sherego

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.

Jump to this post

@sherego Hello! My husband was just diagnosed with MGRS and has started daratumumab injections. I was wondering how your treatment has gone and if you are finished at this point. My husband is being treated with only the injections (weekly then bi-weekly) for 4 months and we're not quite sure what to expect once the treatment is done.

REPLY
1 reply
Profile picture for sherego
sherego | @sherego | Apr 8 6:17am
In reply to @katfit "@sherego Hello! My husband was just diagnosed with MGRS and has started daratumumab injections. I was..." + (show)
Profile picture for katfit @katfit

@sherego Hello! My husband was just diagnosed with MGRS and has started daratumumab injections. I was wondering how your treatment has gone and if you are finished at this point. My husband is being treated with only the injections (weekly then bi-weekly) for 4 months and we're not quite sure what to expect once the treatment is done.

Jump to this post

@katfit
Hello! I am so glad to hear from you. In the 10 months since I was diagnosed, this is the first time I’ve met someone else with the same diagnosis. I’m very busy with family visiting this week so I’ll write more later. But yes, I finished the initial 6 months of treatment, just as you described it, and everything is looking good! More details in a few days.

REPLY
Profile picture for dickmm
dickmm | @dickmm | Apr 8 3:55pm

Yes. I’ve had MM for over 3 yrs. Started weekly Darsalex along with 20mg of Revelmid 21 da on, 7 off, then repeat. Over time, Darsalex reduced to monthly and Revenid to 5mg every other day. Now in remission and monthly Darsalex continues along with Revelimid

REPLY
Profile picture for knikriverstudios
knikriverstudios | @knikriverstudios | Apr 9 9:06am

Hi
I have Primary Plasma Cell
Leukemia, ultra rare MM.
One in 1 to 3 million .
Blood cancer. I just finished 30 weeks of Chemo ,twice a week . Break now, no remission yet. , anyway Was wondering how Darsalex
Feels . May be in upcoming
treatment . Thanks

REPLY
1 reply
Profile picture for hlwd7
hlwd7 | @hlwd7 | Apr 10 7:48am
In reply to @knikriverstudios "Hi I have Primary Plasma Cell Leukemia, ultra rare MM. One in 1 to 3 million..." + (show)
Profile picture for knikriverstudios @knikriverstudios

Hi
I have Primary Plasma Cell
Leukemia, ultra rare MM.
One in 1 to 3 million .
Blood cancer. I just finished 30 weeks of Chemo ,twice a week . Break now, no remission yet. , anyway Was wondering how Darsalex
Feels . May be in upcoming
treatment . Thanks

Jump to this post

@knikriverstudios
That’s a very challenging diagnosis. I have Smouldering MM, high risk. I’m on my 4th infusion of Darzalex, weekly for 2 months, bi-weekly for 4 months then monthly for 2.5 years. I have had no effects so far. I get more from the anti-shingles med taken for the Darzalex. I’d be interested to hear from others about their experiences. I hope if Darzalex is right for you that it will help. Good luck, all best.

REPLY
Profile picture for sb428
sb428 | @sb428 | Apr 10 8:09pm

I was diagnosed with multiiple myeloma and light chain amyloidosis in 2021. Did the 2 year data-CyBorD regime which consisted of daratumumab, Dexamethasone, Cytoxan and Velcade. It has been 5 yrs and I am still doing a monthly daratumumab injection to maintain my condition. I had the option to stop the daratumumab but chose to continue. The only side affect I have is extra fatigue for 2 days after injection. I have shortness of breath but that is from the light chain amyloidosis. It also caused kidney damage. At one point I was on the point of having to go on dialysis but with the treatment my kidneys have improved so I don't have to go on dialysis. The 2 disorders are rare but often will show up together.

REPLY
Please sign in or register to post a reply.