Author Topic: Stopping Dara  (Read 596 times)

deBurca

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  • Posts: 11
  • Reason for joining: AL Amyloidosis patient
  • Diagnosed: Sept 2017
Stopping Dara
« on: January 27, 2021, 02:38:41 pm »
Just wondering if anyone has experience of ceasing daratumumab treatment after a period of normal light chain results. Have you found that light chains remain under control or was there signs of disease progression after a while off treatment? My FLC's have been close to normal range for almost 2 years of Dara monotherapy and the team are considering stopping treatment.I know last year's research shows that the median time for progression free survival in those who achieved an early deep haematological response to dara has not yet been reached. Just wondering what people's experience here is.     

Gary

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  • Posts: 37
  • Married to Joanne. Have a daughter Jessica.
  • Reason for joining: AL amyloidosis patient
  • Diagnosed: March 2007
Re: Stopping Dara
« Reply #1 on: January 27, 2021, 03:14:52 pm »
Hi
I was on dara for around 3 years then had to stop in April last year as I contracted Covid.
I was off the treatment for 7 months.
I did notice a climb in my light chains after around the 4th month of being  off it.
I’ve now had a further 3 treatments and they have gone back to normal.
Hope this helps.
Gary.

Joca

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  • Posts: 64
  • Reason for joining: AL amyloidosis patient: heart, bowel, neuropathy
  • Diagnosed: July 2015
Re: Stopping Dara
« Reply #2 on: March 12, 2021, 05:07:00 pm »
Hi, I've only just noticed your post. I too was on monotherapy Dars for about 16 months with excellent results. I was asked if I would stop last March  to allow the former Covid wards. My focus remained low for nine months but have started creeping up. Still in the "normal range" but my consultant may soon recommend starting again. Jansenn's regime for their clinical trial is very inflexible. Perhaps a quick blast of Dara every few months might be adequate but at present is not allowed, as I understand it.
John

Richardpreston

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  • Posts: 32
  • Reason for joining: Patient, AL amyloidosis
  • Diagnosed: 2010
Re: Stopping Dara
« Reply #3 on: March 17, 2021, 04:59:28 pm »
I started Dara in Nov 2019 and my light chains very quickly fell to the same level as after my SCT in 2012.  Covid stopped treatment in March 2020 and so far there hasn't been much movement.  Sent lates blood in last week and am awaiting results.. I travel in expectation rather than hope (but it's good to see restarting treatment after a break worked for Gary!)

Richard