This morning Marian and I made our first trip to City of Hope to get things rolling on my CAR-T treatment. It was an adventure.
I'll spare you the routine griping and get straight to our meeting with the doctor. We were running late so he launched into his spiel right away, explaining how Abecma works by modifying my T-cells and then—
"Abecma?"
"Yes, that's the name of the drug."
"That doesn't sound right. Hold on...."
I had blanked on the name of the drug I was expecting, but I did some googling while the doctor kept talking.
"Carvykti! That's the one we talked about when I first came in. I've been following its progress for years."
Discussion follows. It ends like this:
"When a slot opens up, we give it to the top person on the waiting list and they get whatever drug is available."
"But—"
"And both drugs are about the same anyway. Carvykti has a 92-95% response rate, while Abecma is around 90%."
Long story short, I agreed to the Abecma, but only to buy myself time to go home and check things out. It's always dangerous for a layman to do this, but the clinical trials were pretty clear: Abecma had a 72% response rate and Carvykti had a 98% response rate. But there's more: Abecma had a 29% "stringent complete" response rate while Carvykti clocked in at 83%.
That's an enormous difference, and the stringent complete response is what you really want. This kind of response means that the level of cancerous cells is so low they can't be detected.
Anyway, I was just on the verge of calling back to cancel tomorrow's leukapheresis appointment when the doctor called me. He felt bad about the misunderstanding etc. etc. and now acknowledged that Carvykti was, in fact, more effective. "And it lasts longer, too!"
So we all agreed to put me back on the waiting list, this time specifically for a Carvykti slot. This probably means a few more months of waiting, but it also means a far greater likelihood of success. In the meantime, it's back to chemo and the evil dex for me.
The bureaucracy giveth and the bureaucracy taketh away. This is not what I was expecting today, but I guess things could be worse.
Almost a Mal to me.
I feel sorry for the less informed patient. The doctor felt bad about the misunderstanding? Misunderstanding!
Truly! Egads!
Ooof. That stinks. Hang in there.
That was my thought exactly.
I was thinking the exact same thing. And most people are in the less informed category.
So disappointed for you, but at least your (Kaiser?) doctor did a quick turnabout. Just wish that there weren't still more time to wait, but know that you're far better at keeping your spirit up & keeping active & positive than most of us. And then you have a wonderful support group right there.
Kevin, will you be admitted for this treatment, or outpatient?
Hope your wait is not too long. ????
Too bad about the delay, but good for you for being on top of things, Kevin.
There is nothing worse than getting your hopes up then having those hopes delayed. The REALLY stinks
But - you've lasted far longer (already) than many others so there's that.
And besides the evil DEX causes sleepless nights - so you can use your telescope and celestial camera to keep you occupied while on the waiting list. Now if only the governor can keep those rolling blackouts going to dim those city lights just a little and your photos should become MUCH better.
There's a plus top every setback Kevin
Well done Kevin! You have to be your own advocate when dealing with doctors, especially with complex disease treatment. My wife and I both work in biomedical research and even with our experience it was a challenge to get our youngest through his chemo and surgery. There is so much to learn and watch out for, we caught so many mistakes by medical staff and had to fight for what we wanted for him on several occasions.
Good job.
This is something I enormously resent. Patients should be able to trust their doctors and shouldn't have to advocate for themselves or do their own research to get the best care. If you are a doctor and your patients only get good care when they are willing to stand up for themselves and challenge you, YOU ARE A FAILURE AS A PHYSICIAN.
Gee, they really pack in a lot of knowing in just four years of med school. And _of course_ your average doctor reads eight hours a day worth JAMA-level material /s.
Well, of course the doctor can't be bothered to keep up. Every patient needs to be reading JAMA 8 hours a day.
Bad Doctor! Who the hell do these guys think they are? Never mind, I know the answer: They think they are gods, and apparently they think regular folks are not very important at all. I mean, shouldn't there have been some discussion of the possibility that at the last minute you might be offered a vastly inferior treatment? Misunderstanding? Misunderstanding?? The only explanation for this so-called misunderstanding is that Doctor Big Shot dropped the ball (although someone on her staff will get the blame, and maybe the boot). Best of luck to you as you continue to navigate the shark-infested waters of Big Medicine.
And may you eventually get the treatment you need and deserve.
It's news to you that, like every other professional, medical doctors make mistakes? Yes, it sucks when they do. Truly. Sometimes it even causes death.
Maybe one day robots will take over for humans when it comes to medicine.
Jasper_in_Boston
In fact, it's not news to me that the doctor profession has way more than its share of arrogant, self-important stuffed shirts. Everybody makes mistakes, sure -- but it's important how they deal with their screw-ups. Maybe if there'd been an apology on the spot, a willingness to admit that's no way to treat a patient and a prompt rescheduling of the correct treatment, I wouldn't have gone off like I did. Or maybe if I hadn't just come back from a doctor "appointment" where I arrived early as required and still had to wait a half hour past the designated time. I also got no apology, or even acknowledgment that somebody was late. I guess I should be grateful they weren't also trying to pull a drug switcheroo on me.
Someone's gotta, gonna, take the less effective drug. Just saying.
I wouldn't either if I had a choice but it does maybe raise a question of fairness? Do you get the less effective because you aren't as smart, rich, or something else?
Mmm- mr. reporter- don’t you see a story here? Why is the significantly less effective drug even recommended.
Both approved treatment and still relatively new., and either one better than nothing once regular chemo loses effectiveness. Not sure why better treatment is not more widely available, or when/if treatment recommendations will change.
I haven't done a deep dive on this.
Does Abecma provide a higher profit margin?
Clearly, after you left he googled you and realized he was messing with a big time blogger--Finally you are getting paid Kevin!
Joking aside, sorry this happened to you Kevin. Looking forward to hearing that you are in treatment and getting better.
Well Done! My Uncle lectured anyone within hearing distance to do your own damn research from great med sources. Doctors have too many patients and spend maybe a glance at your chart (not always their fault). Some docs get offended (avoid those) and some embrace (go to those). Even if the info kind of confuses you, you are way better off in a discussion with the doc before making a decision on your own health and we-being. Bravo Kevin
So in a nutshell, what happened was Kevin swapped his place in line with someone else who is less informed who will end up getting the less effective drug now instead of randomly getting the more effective drug.
Ugh. I’m happy for Kevin but that sucks overall. Patients who have busy lives or are of lower intelligence shouldn’t have to take crappier drugs simply because they don’t know to challenge the doctor. Yet I’m sure this happens all the time because of course they aren’t going to throw away all the less effective drugs because PROFITS need to go to all the drug manufacturers.
Those are excellent points. It's another reason those with less have significantly poorer health outcomes from the affluent with resources and leisure time to research their treatment options.
And so continues the battle of the perfect over the good. Neither of which was available to anyone twenty years ago.
Several have bemoaned profits and claimed that was the motivation. Perhaps. But who’s profits? Is the other drug indeed more profitable to the manufacturer, or is it perhaps lower cost to the provider? Do other systems around the world use only one of the two drugs, or random selection, and if they include the other, less effective one, why?
So why is "abecma" even still on the market, if it's so relatively ineffective? And where do they get these freaky names, anyway?
Oh Kevin, I'm so sorry about the cluster. You are still on the list and that is the good part. We are pulling for you. Hang in there.
Sorry for the disappointment. I hope it's a short wait.
Along with all of the other things wrong with this situation: Something has gotta be done about stupid drug names that no one can remember or spell.
Only so many N-character, pronounceable “words” left out there which may be trademarked…
At least he didn't offer you ivermectin!