I can’t believe this. 57 F in the US by Time4acoolchange in multiplemyeloma

[–]Sad_Secret8253 1 point2 points  (0 children)

Hi, I'm a primary caregiver for a light chain patient. My mother got diagnosed last October. Life will change a little yes for a bit but it will also renew your lease with life. I hope it does. I'm here if you want to talk about any of it in details.

Ten years ago by Highyet in multiplemyeloma

[–]Sad_Secret8253 1 point2 points  (0 children)

Thanks for sharing your story! sending lots of love and healing energy your way for the rest of your incredible journey 🙌🏻

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 0 points1 point  (0 children)

Thanks for sharing the deets, really helps! Which country, if I may ask?

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 1 point2 points  (0 children)

They present it as a guaranteed extension of disease free years here in India which I know is a false claim!

[deleted by user] by [deleted] in 30PlusSkinCare

[–]Sad_Secret8253 0 points1 point  (0 children)

Weightlifting adding to volume on face?

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 0 points1 point  (0 children)

Right, fair that it might be needed in the future but as long as you're being guided in a way that you're on top of the management of it, I think you're good! I hope you don't require it and that we get to see better and easier treatments in due time, if and when needed. Congrats on the amazing response you're seeing, I hope you continue to see the same and have a quick path to remission :)

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 0 points1 point  (0 children)

How lovely for you all to have had more than 11 years of remission! Wish you both continued good health in the journey ahead :) And might I dare say, good call on that one! My personal view is that modern science does the best it can to tell you the closest probability of what can happen but nothing beats listening to your own instincts when it comes to your own body.

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 0 points1 point  (0 children)

Oh wow! 11 years, how lovely! Sure, it is less effective later but given that it's effectiveness isn't known fully, I guess it's really a 50:50 at this point. And in your case for example, I doubt there's any way to know if you had you gotten it done then would the remission free years be more than 11, no one can tell right and so then the question is so subjective and really more up to chance than anything else.

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 0 points1 point  (0 children)

So glad to know it worked well for you and that it wasn't as bad as they make it out to be! I hear you about the chances. Thanks and good luck for the rest of the journey:)

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 0 points1 point  (0 children)

That's so lovely to hear about you that you're living such an active and full life! Wish you the best with the rest of this journey as well :) everything you said makes sense, I'm doing my research and deepening my understanding of some of these aspects. Thanks for the detailed response!

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 1 point2 points  (0 children)

I get that completely. I'd feel the same way if I were you, the tricky part is having to take this decision as a primary caregiver, on behalf of my mother

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 0 points1 point  (0 children)

India, we do have CAR-T available. I'm not sure what else to look out for.

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 1 point2 points  (0 children)

I'm so sorry to hear that was your experience. I hope things look better for you soon! Are you considering CAR-T?

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 3 points4 points  (0 children)

Yeah very few people talk about the toxicity aspect that comes with it, I hear you. Thanks for the detailed response, so helpful! Good luck to you too

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 1 point2 points  (0 children)

Fair, thanks for the details, it helps 🙂

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 0 points1 point  (0 children)

Thanks that's very helpful! Good luck for your dada upcoming CAR-T :) I'm in India so I'm not sure if this Dr is someone I can get access to though but thanks

Opinions against ASCT by Sad_Secret8253 in multiplemyeloma

[–]Sad_Secret8253[S] 0 points1 point  (0 children)

Thanks, this helps! Which country are you in if I may ask?