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.
@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.
@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.
@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.
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
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
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
@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.
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.
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@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.
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3 Reactions@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.
-
Like -
Helpful -
Hug
3 ReactionsYes. 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
-
Like -
Helpful -
Hug
1 ReactionHi
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
-
Like -
Helpful -
Hug
1 Reaction@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.
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.
-
Like -
Helpful -
Hug
1 Reaction