Author Topic: Why not Dara?  (Read 654 times)

Justme

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  • Posts: 2
  • Reason for joining: Husband of Amyloid patient
  • Diagnosed: March 2021
Why not Dara?
« on: May 22, 2021, 07:54:31 am »
Hi everyone. First post on here. My wife has just started treatment (CyBorD) for AL Amyloidosis after a long and rocky road to diagnosis that echoes many on here.
We have been reading about the Dara studies which seem to show real promise in improving outcomes and therefore can’t understand why she wouldn’t have been put on this too. Can anyone share their experience or insights please? Thanks in advance.

Linda R

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  • Posts: 2
  • Reason for joining: AL amyloidosis patient
  • Diagnosed: October 2014
Re: Why not Dara?
« Reply #1 on: May 30, 2021, 12:42:00 am »
Hi Justme,

From reading your post, it looks like the CyBorD is your wife's first treatment. I believe that Daratumumab typically is reserved for relapsed patients. Will your wife have a stem cell transplant? I'm in Scotland, where Dara is available in combination with other drugs either for first line (followed by SCT) or as second line treatment (i.e. after relapse), or on its own as fourth line. For any treatment regime there always seems to be conditions attached, and that can impact on whether we can access that treatment. Can you discuss it with the consultant?

After my own relapse two years ago, the intention was to put me on Daratumumab. I had previously received CyBorD, then VTD (Velcade, Thalidomide, Dex), and Thalidomide/Dex maintainance, which put me in remission for over three years. I actually started treatment a few days ago, but not Daratumumab (it's a long story but over the last nine months I have had many new investigations and now been diagnosed with a rare type of B-Cell Lymphoma as the cause my AL Amyloidosis).

Best wishes, and good luck with your quest.

Justme

  • *
  • Posts: 2
  • Reason for joining: Husband of Amyloid patient
  • Diagnosed: March 2021
Re: Why not Dara?
« Reply #2 on: June 08, 2021, 06:37:21 am »
Hi Linda R
Thanks so much for taking the time to reply. We managed to discuss this with our consultant the other day and you’re right - it’s reserved for second line treatment essentially.
Thanks again for your message and all the best to you in your next round of treatment.