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    • #27369

      An update on my dad:

      We’ve decided to discontinue the Esbriet. He had a recent deterioration where his oxgyen had to be upped from 5L/min to 10L/min (8.5 at rest). So, we don’t think the Esbriet is helping anymore. And even if it is, what’s the point in suffering all the GI issues and loss of appetite if the disease will progress anyway?

      We stopped the medication completely over 1 week ago and I’ve noticed his mood and appetite improve considerably. He’s still not able to eat as much but his appetite is coming back – he actually feels like eating things and gets cravings for snacks. I hope he can gain some weight and strength back – the Esbriet really made him lose so much weight and become so frail.

      • This topic was modified 11 months, 1 week ago by Vishal.
    • #27380

      … So sorry to hear this news, Vishal.
      sometimes I do wonder if there is any tangible benefit to speak of from such controversial (chemo)therapies.

      • #27391

        Thanks Michael – it’s a tough time but the main thing on our minds at this point is to ensure that he doesn’t suffer at all and is as comfortable as possible.

        And I agree, although some studies show that there is a significant slowing in the rate of decline in lung function, the drugs don’t seem to work well in everyone and as the disease progresses, they are less and less effective. Our respirologist left it up to us decide when to discontinue Esbriet because he was unsure of its efficacy after my dad’s previous deterioration where he began needing 5L of oxygen.

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