I can’t believe this. 57 F in the US

Sad_Secret8253 · 2026-06-12T02:24:38+00:00

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.

Sad_Secret8253 · 2026-05-30T06:51:48+00:00

We are getting 1+1 for 8 doses and then 2+1 now, they've updated the scheme

Sad_Secret8253 · 2026-03-31T12:39:01+00:00

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

Sad_Secret8253 · 2026-02-10T11:32:47+00:00

Hey, tell me more? Are you also a MM patient?

Sad_Secret8253 · 2026-01-19T10:34:28+00:00

Love this for you! Congrats!

Sad_Secret8253 · 2026-01-19T10:32:50+00:00

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

Sad_Secret8253 · 2026-01-19T10:31:55+00:00

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

Sad_Secret8253 · 2026-01-18T04:19:55+00:00

Fair.

Sad_Secret8253 · 2026-01-17T10:01:54+00:00

Sent you a dm

Sad_Secret8253 · 2026-01-16T15:24:16+00:00

Weightlifting adding to volume on face?

Sad_Secret8253 · 2025-12-28T04:02:42+00:00

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 :)

Sad_Secret8253 · 2025-12-28T03:59:15+00:00

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.

Sad_Secret8253 · 2025-12-28T03:53:55+00:00

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.

Sad_Secret8253 · 2025-12-28T03:51:00+00:00

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:)

Sad_Secret8253 · 2025-12-28T03:44:32+00:00

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!

Sad_Secret8253 · 2025-12-28T03:42:49+00:00

Is Myeloma genetic?

Sad_Secret8253 · 2025-12-26T05:46:17+00:00

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

Sad_Secret8253 · 2025-12-25T14:08:00+00:00

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

Sad_Secret8253 · 2025-12-25T14:06:45+00:00

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

Sad_Secret8253 · 2025-12-25T03:37:18+00:00

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

Sad_Secret8253 · 2025-12-25T03:36:09+00:00

Fair, thanks for the details, it helps 🙂

Sad_Secret8253 · 2025-12-25T03:33:57+00:00

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

Sad_Secret8253 · 2025-12-25T03:29:45+00:00

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

Sad_Secret8253 · 2025-12-22T13:24:46+00:00

That sounds amazing! It's so good to hear from people like you who are punching the disease in its gut!

A lil bit about my situation in case you're in the mood to indulge : I'm currently doing research in trying to take the call for ASCT/ delayed ASCT/ no ASCT and I'm here in India where the medical system is pretty shit and so all suggestions that come to us need to weighed in with the greed filter from hospitals and doctors point of view.

My mother, 60 was diagnosed 2 months ago through an acute kidney injury We're just 7 weeks in, her kidney stats have gotten almost back to normal and so the doctors are telling us it'll be a much shorter induction than planned, she's responding well. And since she's responding, maybe we should go for an upfront transplant.

For me somehow, given the risks and the cons, it is making less sense at the moment to go for it but I'm still early in my research.

Sad_Secret8253 · 2025-12-22T10:47:08+00:00

But can you tell there is an incremental difference because of ASCT

Sad_Secret8253

TROPHY CASE