Author Topic: AL amyloidosis - first line treatment  (Read 927 times)

freecurry

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  • Posts: 8
  • Reason for joining: husband newly diagnosed, type unknown as yet
  • Diagnosed: Dec 2020
AL amyloidosis - first line treatment
« on: May 21, 2021, 10:48:23 am »
I'd be really grateful for any observations from those forum members who've already been through treatment as to the rationale used for ceasing their initial treatment when there had been a response.
My husband has completed two cycles of CyBordD for his newly diagnosed AL amyloidosis (heart, liver spleen and GI tract) and is now midway through cycle three. It's been tough so far but the good news is that it appears to us that he's responding. At his initial NAC visit his Kappa light chains were 191 (Lambda 16.6) and at the end of cycle two Kappa were within the reference range at 14.7 (Lambda 4.0). According to the really helpful end of cycle notification of results from the NAC his dflc was 94.
The pandemic has made dealing with any health issues challenging as telephone consultations don't really allow one to build up any rapport with the clinician or to talk things through as one would at a face to face meeting. At the telephone review with the local haematologist prior to commencing cycle three we asked what would happen if/when his light chains normalised and the answer was that he'd have 6 - 8 cycles anyway. We know that the NAC will review results following cycle three but don't know how long this would take or how much influence their feedback would have on local clinicians. Obviously we're content for him to continue treatment for as long as is clinically necessary but equally we don't want him to endure more than is actually required.

Pat Martin

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  • Posts: 28
  • Reason for joining: AL Amyloid heart
  • Diagnosed: Dec 15
Re: AL amyloidosis - first line treatment
« Reply #1 on: June 02, 2021, 03:42:01 pm »
Hi Freecurry.  Regarding CyborgD.
I had this Chemo combination five years ago with a very good response at 3 months after 4 months I was desperate to stop. Dr Wechalekar advised me to stay on board and I kept going although the last month was very hard, but I am so glad I did, as I am still in remission.
He explained that the longer I could shut the factory producing the misfolded proteins down the longer the response would last.
Best to keep going if possible.
Very best wishes.
Pat Martin

freecurry

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  • Posts: 8
  • Reason for joining: husband newly diagnosed, type unknown as yet
  • Diagnosed: Dec 2020
Re: AL amyloidosis - first line treatment
« Reply #2 on: June 02, 2021, 09:27:06 pm »
Hi Pat,
It was good of you to take the trouble to respond; it's so helpful to learn from others who are going/have been through similar when you're just starting out on this journey.
I understand what you say and we heard something similar from Darren at the NAC when we contacted him yesterday. It helps to understand the rationale for continuing when all the side effects make one so desperate to stop, particularly now that fainting episodes have been added into the mix too! We'll hang on in there and keep everything crossed for the future.

Here's hoping that your remission goes on and on.

Thanks and very best wishes,
Sue and Steve
(aka freecurry)