Daratumumab

eihtak
eihtak Member Posts: 1,473 Member
in Multiple Myeloma #1

Hi,

Just wondering if anyone has had experience with this drug. My husband was initially dx with MM over ten years ago and after 2 transplants, surgery, chemo, and several radiation treatments for various recurrances, then eventually a maintenance chemo routine for the past couple years he once again has active MM. There was a concentration of Myeloma in his arm and collar bone causing both to break while doing almost nothing. Excruciating pain and surgery on the arm and now infusion of Daratumumab weekly for the next 8 weeks. Poor guy is literally breaking!

katheryn

Comments

  • LostWandering
    LostWandering Member Posts: 1 Member
    #2
    Hello, 

    Hello, 

    I'm very sorry about the current condition of your loved one. I can understand and relate to your pain. My father recently passed due to MM and tried almost every drug out there, so I do have some expereince with this drug, Daratumumab. It was a long infusion, a believe It was 8 hours long, so I'd suggest bringlong him a book or iPad with movies/tv shows on it. If he's not in any condition to do that than I'd ask his doctors for a seditive to make the infusion process more bareable. I would imagine that sleeping through it would be the easiest. 

    As far as effectiveness of the drug, I can't really say. It didn't help my father unfortunately. From my very basic understanding of the drug it works much differently than chemotherapy. It uses the body's own immune system to fight the disease. I believe some people have success with it, but again my experience with it wasn't good. Not to frighten you, but it seems like the disease had free range to run compared to the chemotherapy treatment, which was aggressively fighting this disease. The reason I'm suggesting this is because my father's M-protiens jumped much higher after this treatment. It just didn't have any positive effect.

    However, please understand that I'm only speaking about my father's personal experience and I'm sure there are patients which had much better and more promising results. My father began this immunotherapy treatment when all the other drugs were failing and his numbers were very high to begin with. So, it's not fair to blame the result on this treatment. All I can offer you is my experience with the drug And my hopes that it will yield better results for your loved one. I'm very sorry you're going through this with him and feel terrible for you both.  Take care. 

  • vickie16
    vickie16 Member Posts: 3 Member
    edited December 2019 #3
    New drugs for multiple myeloma

    Hello, I have had multiple myeloma since 2017, had a stem cell transplant and currently on revlimid maintenance. It is my understanding that

    multiple myeloma is treatable, but not curable right now.  So many new drugs have been developed and approved, which is good for all of us that

    have this disease.  Research will always be so important for us, such as the moon shot that is at Anderson Cancer Center in Texas and some of the larger

    hospitals.  Continue to support all of this to discover how to fight this disease. God bless all of the patients that have taken  place in clinical trials to help all of us. This disease always tends  to come back, but much more progress than even just ten years ago.  God bless all of you, and heres hoping that 2020 will be the year for some

    major breakthroughs.

    .

  • eihtak
    eihtak Member Posts: 1,473 Member
    #4
    Thankyou...

    Thankyou both for your response. Yes, it is always encouraging to look ahead to new treatments for all types of cancer and I am a supporter of research to do so.

    LostWandering, I am so very sorry about the passing of your father, losing a parent leaves a void that is irreplaceable. My father died a couple years ago and I deeply miss him. I pray you have comforting memories to warm your heart.

    Its been a couple months since my original post on this thread. My husband too has been on so many different drugs over his 10+ years with this disease and so Daratumumab was one of the few treatments left on available drugs. He also has not had good response to this and though managed to complete the 8 treatments, (and yes they were long days) his schedule was often interupted by blood counts way out of wack and cold virus' he could not kick. His recent x-ray of his arm as well as blood work showed very little positive response and they now want to try radiation on his most affected area (at this time) his arm. He has a specialist that he sees who did the transplant 10 years ago but is at a facility several hours away. His local doctor coordinates care closer to home. We are scheduled to see the specialist next week, but we are not new to this game (I myself have been treated for 2 primary cancers as well, but at least for now, doing good)...anyhow, he is just sick of being sick and not sure he will agree to trying anything else. We will keep the appointment and he will decide after that.

    Thank you so much for your insight. I do agree that everyones journey is different, and this drug may have wonderful results for some, but it does not seem to be the case for my husband as of yet.

    Thankyou for your kind thoughts and words.

    katheryn

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