I might as well get this over with. Until a couple of weeks ago I was responding beautifully to the CAR-T treatment, with my cancer load dropping smoothly toward zero. Then it all stopped, with my M-protein level stalled at 0.34:
This is a "partial response," and for all practical purposes it means the treatment didn't work. There's a good chance it will keep me chemo-free for a few months or a year, but that's about it.
This hit me out of the blue. I was convinced everything was going well and it barely even occurred to me that my latest result would be anything but zero. Needless to say, this is pretty depressing news.
I have a lot of respect for you sharing your multiple myeloma timeline.
Keep sharing what you feel comfortable sharing. Wish there were more people like you.
I'm so sorry to hear this news. I hope the remission lasts longer than you say. All the best.
That sucks. Any chance the first CAR-T treatment you were offered might turn out to be a better fit?
I’m really sorry to hear this.
Wishing for all the best for you, really sorry to hear this.
Like any antibody response, is there a protocol for future CAR-T boosters, or is this the end of the treatment protocol?
CAR-T stands for chimeric antigen receptor T-cells. The therapy is T-cell mediated, not antibody mediated. There's no such thing as a "booster."
When KD said it was a "partial response", I assumed the custom T-cells were expected to also trigger B-cell humoral response to generate antibodies targeting cancer cells.
Is that not correct?
Otherwise, it would then seem that all that was required would be to have another go at it with more CAR-T cells.
Kevin is enrolled in a clinical trial. I don't know that the trial protocol includes generating new CAR-T cells. I doubt it. This is very expensive technology.
I suspect the clinical endpoint is mitigation of the myeloma, not the number of tries.
AFAIK, the mechanism of CAR-T immune response is cell-based, not humoral (e.g., not B-cell-mediated).
Obviously I wish you to the best and you have turkey dinner next time you come to Virginia. That said your numbers aren’t the worst. Don’t want to speculate but talk to your MDs about continuing ongoing treatments that may well go for another 10-20 years before you die of something else.
So sorry to hear this. Please know that those of us here in Commentland are pulling for you.
Kevin: thank you for sharing this news. I hope they find an alternative therapy that works better.
I was going to quote some silly poetry or Shakespeare of something on the vicissitudes of life...but they would all be shallow compared to a real living human being...but let me say:
You have been smart throughout the years, yes actual years, of this damned thing, You will continue to be smart...you have lived well, maybe even better for this stalking calamity in your life...but it waits, as it does for all of us...but yours makes you live well...maybe at a maximum.
Yeah, its a rotten deal but the way you flip it maybe not that rotten at all....living a meaningful life is hard for most of us...you make it look easy.
Keep on keeping on. (best wishes, Traveller)
You’re a fighter, and this isn’t decided. Best wishes Mr. Drum. Dr. Bebop is filling out a prescription for as much cat time as needed.
Kevin...I really admire you for sharing this disheartening news. It takes a lot of courage to go through what you have and also to be so open & vulnerable. There are a LOT of people pulling for you and holding positive, healthy intentions for your success. I agree with the others. This isn't 'decided' yet and there is still room for a wonderful miracle to occur.
Oh, god, Kevin. What horrible news after all you went through. I want to cry. If there are words that can comfort you pretend I said them.
Wow, my heart goes out to you and yours. I am so sorry to hear this. Is this treatment a 1 shot deal?
That blows. Godspeed.
Cancer sucks. I'm wishing you good luck and sending my best hopes for your future, however long that is.
Like many other here, I wish I could do more than offer thoughts and prayers. I still look forward to many years of you comments, including Evil Dex late night photographs.
Hang in there, Kevin. Maybe this one data point isn't the last word.
That seriously sucks. I hope you at least get a year or so of not having to do chemo.
Is there any chance they can take another stab at the treatment, or is it basically one-and-done in terms of whether it can be done and how your body responds?
I agree that this is one datapoint and the fight isn't over yet. Hang in there and see how this thing develops, the M protein may yet resume its downward spiral.
Or else there will be another treatment to try.
Your family needs you.
Your cats need you.
We need you.
Awww fuck.
I'm so sorry, Kevin. Like other commenters, I hope this one data point isn't decisive.
Kevin, I'm so sorry. Pease try to remain positive as this just may turn around. We are all pulling for ya. Hang in there.
So sorry, Kevin. Stay strong.
I echo Mathis. But also, I hope for more—a better response, a second treatment, a new treatment, a miracle—because the world needs your stubbornly rational and at the same time encouraging voice. My cats and I send you and yours much love.
Sorry to hear this. Stay strong for your family and everybody who needs you in their lives
I was hoping so much that the treatment would work. You are a fighter. And I want you here on this blog for many years to come. I continue to pray for you.
---Lisa&
So sorry to hear this news, KD. Hope you'll find another treatment or that there is some possible change with this one. We're all pulling for you.
This isn't the only treatment out there.
And, it did have some effect, so just because it didn't take the first time does that rule out trying again?
Ugh.