Congrats Gramsci, and strength to all of you still enduring.

Gramsci wrote: Tue Jun 11, 2024 2:16 pm So... Clear!

After my treatment my blood test has come back with normal levels of Kappa Light Chains, the fuckers that indicate I have the disease. They will come back, hopefully slowly. Those of you going through this shit or vicariously through loved ones know how much news like this means. Keep fighting the good fight everyone.

Didn't understand quite what this meant, if it was "good news" or "good news... for now". Sorry don't know this stuff. Seems it's some type of good news at least. So uhm, congrats!

kokorodoko wrote: Thu Jun 13, 2024 8:13 am

Gramsci wrote: Tue Jun 11, 2024 2:16 pm So... Clear!

After my treatment my blood test has come back with normal levels of Kappa Light Chains, the fuckers that indicate I have the disease. They will come back, hopefully slowly. Those of you going through this shit or vicariously through loved ones know how much news like this means. Keep fighting the good fight everyone.

Didn't understand quite what this meant, if it was "good news" or "good news... for now". Sorry don't know this stuff. Seems it's some type of good news at least. So uhm, congrats!

Yup, good news. The things that cause the damage aren't showing up in my blood, meaning the root misfiring blood cells are gone. Meaning cancer free, for now. My version will trickle back over time but an early response to treatment is a very good indicator of a long remission.

My condition is a weird one, it just does the one thing, misfiring white blood cells. It doesn't spread or cause tumours, the kind of things people think about when they hear "cancer", it's more like a chronic disease.

Anyhoo, hopefully gone for years...

Alrighty then.

Post treatment tests and clinical team chat… I’ve hit one of the highest responses possible to the treatment which was really positive. There’s another very rare, complete response but it doesn’t significantly change the long term outcome. So not dying any time soon hopefully. Plus the trial I’m on randomised me to the highest level of post transplant maintenance treatment, including the latest immunotherapy, which is unavailable currently as a part of standardised treatment.

Gramsci wrote: Thu Jul 25, 2024 11:52 am Alrighty then.

Post treatment tests and clinical team chat… I’ve hit one of the highest responses possible to the treatment which was really positive. There’s another very rare, complete response but it doesn’t significantly change the long term outcome. So not dying any time soon hopefully. Plus the trial I’m on randomised me to the highest level of post transplant maintenance treatment, including the latest immunotherapy, which is unavailable currently as a part of standardised treatment.

That's AMAZING - especially the latest immunotherapy part because we've had some friends that did that as 'last ditch recovery effort' and the results were short only to magic. Really incredible stuff that is flipping some cancer diagnoses on their head - what used to be a genetic death sentence for some is now the lucky penny to being cancer-free with less side effects from "Standard treatment"

Fucking superb FMGramsci! Sounds like you're on the same protocol and having the same response as my F.i.L. with MM.
Had my first 90 day MRI since recurrence this morning. My new treatment protocol has had very little side effects since about week 2. In the middle of the 3rd month now. I'll now if it's doing its job on Wednesday and will report in.

another plus, my insurance is covering this treatment 100%. ($0 co-pay)

PASTA wrote: Thu Jul 25, 2024 2:39 pm Had my first 90 day MRI since recurrence this morning. My new treatment protocol has had very little side effects since about week 2. In the middle of the 3rd month now. I'll now if it's doing its job on Wednesday and will report in.

another plus, my insurance is covering this treatment 100%. ($0 co-pay)

w00t to all all y'all

Good news lads. Keep at it.

:heart emoji:

Good news, glad to hear.

Excellent!