Daratumumab maintenance treatment

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This topic contains 20 replies, has 10 voices, and was last updated by  sophiesgran 2 weeks, 1 day ago.

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  • #152849

    greenlarry
    Participant

    Can he take Pepto Bizmuth?

    #152879

    chellem
    Participant

    Hi Rabbit

    Thank you for your reply. From the very beginning they have told me it would be four cycles. The told me treatment would be intense because they wanted to hit it hard. My treatment has been dexamethasone, daratumumab, bortezomib and lenolidamide every week. Which was pretty tough. They say I’m responding well so at start of cycle 3 they have reduced this to once every 2 weeks and on the other week just the dara, I get the usual 7 days off from len.

    Amazing that you have been in remission for 3 years, so happy to hear this.

    Regards

    Michelle

    #153134

    sophiesgran
    Participant

    I have been on Dara since January 2023,so on maintenance for three years. The side effects have been mounting. At my recent consultation the consultant said I think it’s time to stop this line of treatment. This totally took me by surprise! She said if you stay on it too long, it can damage the bone marrow causing mylodysplasia. Has anyone else been told this? It’s the first I have heard of this possible side effect.
    She said it will stop working at some point and a break from treatment will mean when I do relapse I will be in better shape for another line of treatment

    #153135

    rabbit
    Participant

    Hi Sophiesgran. That’s interesting: both academically and because I also started on Dara in January 2023!

    I hadn’t heard of mylodisplasia. I asked AI (specifically Google Gemini):

    “Long-term exposure to daratumumab itself is not typically considered a direct cause of myelodysplastic syndrome (MDS). However, the broader picture involves several important nuances:
    ​Combination Therapies: Daratumumab is almost always given alongside other myeloma medications, such as lenalidomide, alkylating agents (like melphalan or cyclophosphamide), or autologous stem cell transplantation (ASCT). Certain traditional chemotherapy agents and immunomodulatory drugs (especially lenalidomide, particularly after alkylators or stem cell transplants) carry a well-documented risk of secondary primary malignancies, including MDS.

    ​Underlying Disease and Prior Treatments: Multiple myeloma itself, along with the bone marrow environment in myeloma patients who have received multiple prior lines of therapy, carries a baseline risk for developing marrow disorders such as MDS.

    ​Clinical Trial Observations: In clinical trials where daratumumab is added to backbone regimens (e.g., Daratumumab + Lenalidomide + Dexamethasone), cases of MDS or secondary cancers are tracked. While MDS is occasionally reported in these trial populations, research indicates this risk is primarily driven by exposure to lenalidomide, alkylating agents, or prior radiation/chemotherapy rather than daratumumab’s specific mechanism of action (which is a targeted CD38 monoclonal antibody).

    ​Long-Term Safety Monitoring: Daratumumab can cause prolonged cytopenias (low blood counts, such as neutropenia or thrombocytopenia), which can mimic some signs of bone marrow stress. Your care team routinely monitors full blood counts and will investigate with a bone marrow biopsy if persistent unexplained drops in blood counts occur.

    ​If you or your oncology team are concerned about persistent low blood counts or changes in your bone marrow function, discussing a formal bone marrow evaluation is the standard next step.”

    #153153

    davidainsdale
    Participant

    Hi Sophiesgran

    Thanks for your interesting post above. Daratumumab seems to be much more widely used now than when I first started in 2019 when it ws given intravenously.

    I’ve been on it now for nearly 7 years, I’m on monthly maintenance cycle 82 plus 14 at second line makes a grand total of 96 treatments. A nice bottle of plonl ready when I reach 100.

    My pps started to creep up very gradually at about 0.2 per month, now 5.5 so third line is probably next in the New Year.

    No real problems with Dara only fatigue is a constant companion, worse in week 1 of each monthly cycle.Bloods and organ functions all normal.

    Hope this helps

    David

    #153155

    sophiesgran
    Participant

    Thank you for your replies rabbit and David,
    Much to think about. From what I can see the risk of developing another blood cancer is 1-3 percent. Where as we all know, the risk of relapse is 100 percent at some point. Maybe my consultant thinks I am at higher risk as I have had all the drugs mentioned in your post,rabbit.

    David, you have done amazingly well on this line of treatment. It sounds like you are tolerating it much better than I am.
    I am sorry to hear third line may be on the cards for you next year.

    I will have another chat with my consultant. Part of me is tempted to come off it and live a normal life, but at the moment the treatment is working really well. Will I be jumping out of the frying pan into the fire?

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