I was lucky enough to be seen by MD Anderson doctors for my rare type of cancer. Within hours of the first painless infusion, the large tumors I could feel and see from the outside were completely gone. Hours, truly.
Now, the rest of the chemo wasn't as easy as the first. But the miracles of modern medicine, thanks to dedicated researchers and medical teams, truly blew my mind and that was a decade ago.
I was told I was one of 42 people ever that MD Anderson had seen with this cancer, yet they were able to tailor a treatment. I think Vox is right about the progress being amazing, and I hope it continues.
The common cancer treatment modalities: surgery, radiotherapy, chemotherapy, targeted drugs and their combinations are very effective first line treatments. I agree the statistics are much better.
In the field of cancer research it has been focusing more on drug / treatment resistance, heterogeneous response to the same treatment and development of less invasive methods both in treatment and assessment (imaging and monitoring). We have made huge progress in terms of deeper understanding of cancer biology and human disease mechanism in general.
However we have a very long way to understand when things progress outside of our control how to respond. E.g the key cancer drivers have been identified long ago but how biology and evolution modulate its response to external treatment has so much unknowns. That requires large effort to push the whole foundation of science to elucidate the details of these processes in my opinion.
I take four pills a day and the primary side effect is weight gain. The earlier 1950s era treatment made me exhausted 24/7. There's a new trial that has a new target, and looks to solve the remaining symptoms of the disease, with effectively no side effects
The big problem is that it's a chronic blood cancer, so the pills have a list price of $180k/yr. Who knows if my insurance will cough up for a second big-money prescription/
My father is 15y out from a trial (at MD Anderson) that put his CLL into remission. You may already know about The Leukemia and Lymphoma Society[1] but they can help with the cost of prescriptions (including negotiating the prices down with the pharmaceutical companies!)
At that cost it's worth looking into moving to a country that actually has reasonable medical costs instead of laws protecting those milking the system. a Plan B?
Are you talking about acalabrutinib and zanubrutinib? If so, have you looked into the chinese version Orelabrutinib? Chinese pharma has gone from backwater to competitive with US in like 5 years
I’ve met people that have moved to Houston for cancer treatment there, were given 1-2 years to live, and they’re still here 15-20 years later. It is a really remarkable place.
The greater Houston area has too much cancer, in part caused by the many refineries and chemical factories. At least there are good treatment options nearby.
I remember the little clear IV looked like saline and the nurse said, "Your insurance is getting billed $75,000 for this, so lay back and enjoy" - that was one of many expensive treatments, I was very lucky to have good insurance.
I was told the rapid debulking was because the first infusion I got was a targeted drug that specifically found and destroyed the cancer cells.
The follow up chemo was R-CHOP (Rituximab, Cyclophosphamide, Doxorubicin, Vincristine, and Prednisone), and my understanding this regimen is still being used.
That is overly reductive. Treatments are measured by metrics such as 5 year survival, 10 year survival, progression-free survival, overall survival, etc. Further, when evaluating a new treatment it will be compared against the current standard of care: does it provide better overall survival? if not, does it at least provide better progression-free survival?
All things have to start somewhere. My insurance paid the extreme prices that this rare treatment required at the time, and my treatment meant they had more data (and now a decade of follow up) to verify if the treatment works.
I didn't have a job with insurance because of luck, in fact I was aware enough of medical costs I chose which job I accepted based on the medical benefits.
I was lucky to be alive at a time treatment was available and within reach of a modern working person, not lucky like the Queen's nephew being promoted.
I think saying I was single and working my first job out of college should put it in perspective here. I didn't drive a Cadillac to my chemos. Stuff costs money, especially medical R&D, production, and care delivery.
It's certainly the case that colorectal cancer is becoming more common, and among younger people. Plenty of possible reasons; diet, plastics, PFAS, all of the above, take your pick.
However, the fact that mortality has been decreasing above the age of frequent screenings, and increasing below that age, tells us that whatever the problem, the symptom (cancer) could be addressed with better screening, leading to earlier detection and treatment.
Mortality is increasing in young people because they don't get screened, so when it does happened no one catches anything until it's too late.
If the age for recommended regular colonoscopies was 40 or 45, we would see the same mortality reduction above that cutoff.
FOBT which you can do painlessly at home for a few dollars is not meaningfully less preventative than an invasive colonoscopy and carries almost no risk. https://www.nejm.org/doi/full/10.1056/NEJMoa2208375
Very true, and this is what caught my father's bowel cancer and saved his life.
That said, for someone with increased risk, nothing compares to a colonoscopy - at it does a better job of catching things early, before you start getting blood in your poo.
But if you are at a standard risk, doing a fobt every couple-few years is hugely important. Ask your doctor now!
The issue with things like cologuard is they really only detect cancer. Colonoscopies can prevent cancer by having polyps removed before they turn into cancer.
Colonoscopy is a more invasive procedure obviously, but complication rates are very low. It's worth it to find a great gastroenterologist to do the procedure.
Until things radically change, people are always going to die of something. The more people avoid death from other things, the more people live long enough to die from cancer.
I know at least a dozen people in my family and friend network that are alive now after treatment from a cancer that was fatal in most cases 20 years ago. That’s not proof by any measure but I am certainly thankful it’s not 20 years ago.
I'm sorry for your loss. I lost my wife to cancer two years ago.
Obviously it didn't work out as we wanted, but she had real hope and prospects. A decade ago, her diagnosis was a guaranteed death sentence. It a nasty business, but at some level, oncology is a field where we stand on the shoulders of those before us. The hope that these tragedies we experience will help future victims brings some comfort personally.
I lost one parent to cancer but the other has been cancer free for over ten years now. I'm devastated by the lose of one parent but incredibly grateful for the one who beat their cancer.
Is that winning? I dont know. But the likelihood that my other parent would still be around if they got their same cancer now is already higher than it was when they passed. Nothing can bring my other parent back but we can prevent others from losing their loved ones.
I'm sad to read this, as my father too is not in the best possible situation currently, cause of cancer. Wish you feel better soon and keep fond memories of him.
I lost my father to cancer last year as well - the medical system failed him, his pain treated as exaggerated and his symptoms ignored until it was far too late.
There’s no win for our dads, but I hope the progress prevents future people like them from facing what they did.
My dad was diagnosed with multiple myeloma 2 years ago. His bone marrow transplant failed (frequent first line of defense) and he just finished CAR-T therapy a couple months ago. The initial side effects from the treatment were _bad_, but everything is looking good right now. CAR-T is really mindbogglingly insane cyberpunk stuff.
I had a close relative diagnosed with multiple myeloma 25+ years ago (I don't remember the exact year) who only lived for a couple more years. It was rough back then. I'm really glad to hear that there is much better treatment these days.
not "war on cancer" and not "we" winning. It's pharma finding ways how to profit from rare treatment successes of few rare disease types. Majority, and by majority i mean over 80%, of patients and cancer types are still treated with bogstandard chemo+radio+surgery. Individualized treatment plans using checkpoint inhibitor combinations, biotech therapies, etc are for few select individuals with A LOT of money.
how do i know? i work in precision oncology for a decade plus
I'm alive because pharma developed an expensive drug that, at the time I got it, was only administered to 42 others before me.
I was a single person working my first job out of college with Blue Cross Blue Shield and got the best I think was available.
You might be jaded after working so long in a difficult industry; the medical research/pharma work done matters to the patients who receive it and get another decade+ of good life.
im glad for you and every single patient that benefits from something i work on. From the public health angle of most eu countries investment into novel cancer treatments makes a lot less sense that improving prevention.
You may check Europe. I can assure you that patients getting PD-1 inhibitors etc. while if I am not mistaken at least in part recruited for clinical trials pay zilch, nada for the drugs there are taking (in Spain).
I don't know... Advancements like Keytruda are huge. And it will be off patent soon. And there are over 1500 active CAR-T clinical trials going on as we speak.
Oh don't you worry some pharmabro will change (edit: will pay someone actually smart to change) a single atom within a single molecule of the antibody, or however the fuck they do it, and they'll re-patent all of the derivatives, and nobody will make the off-patent version of pembrolizumab due to drug companies bribing benefit managers to not cover the off-patent versions, the fact that you can't charge $150k/yr for it, and gentlemen's agreements between drug manufacturers to not harsh anyone's vibe.
If we're lucky congress won't be bribed, I mean lobbied for the sake of safety, into criminalizing its importation.
Great that treatment options are improving. But there are still serious bottlenecks in medicine. It seems to be a universal truth that getting a CT/MRI comes with a long wait time. General Practitioners often wait too long to order imaging as a result, and they are often unwilling to even consider cancer in younger people.
We need better (earlier) detection and faster access to it.
Luckily Urgent Care was able to go from ultrasound to CT scan in 1 day. The long wait time has come from the insurance honestly.
Had to go to a different hospital because the original one I went to has to get an approval from United before getting it done (other hospital 2 blocks away doesn't have that same requirement??)
I got referred to a dedicated cancer center and then guess what, I have to call United and ask them to approve it - but I can't get an appointment to do that for 2 weeks.
Ended up doing all the legwork on my own and was able to get a consultation done within a week. Now I'm having to do biopsies, PET scan, ect. Depending on the result I might be able to get it removed next week!
But the pain has become so severe I can't eat, sleep, even lay down without extreme discomfort. I can't imagine waiting around on the insurance to walk me through it.
Funny enough, United sent us a letter in the mail asking if I really wanted to get that original CT scan! Like no, I'd rather not know I have a 7" tumor in my abdomen. Simply a joke of an industry
I had a knee injury. Called my local orthopedic clinic (seven doctors). The lady who answered the phone told me I’d need to schedule an appointment . . . to schedule the appointment. I was three weeks out from the call at which I would schedule the appointment that would likely be months after that. American medicine is totally broken.
> It seems to be a universal truth that getting a CT/MRI comes with a long wait time.
I wonder if this is regional. I was able to get an MRI scheduled within a couple weeks when I needed one for my non-urgent condition. This was in Chicago, so maybe we're just blessed with a surplus of MRI machines.
I was able to get one for my head once on the same day. One of the symptoms must have raised some major red flags, I guess. This was in Heidelberg, they have a huge medschool. For my knees I waited for weeks, if not months, though.
The hold up is usually almost entirely insurance related for most people. People in my family (including myself) have had non-emergency imaging done several times over the past few years. We've had experiences ranging from getting it done same day to taking over a month to get approval and scheduled. This is in DFW, where there's no shortage of MRI machines around.
Meanwhile there are imaging labs that can do walk-ins if you're willing to pay cash and they have the slack in their schedule, usually somewhat cheap compared to what they'll bill insurance (and if you have a HDHP, what you'll pay). They don't want those machines idle, a gap in the schedule is money they aren't making.
I've seen anything from weeks to months. Weeks when it's the imaging center being booked, months when insurance requires pre-approval or something and times things poorly (hitting the legal deadline but missing the procedure's date for their approval, using the prior approval to deny "getting another" procedure on the date you rescheduled the missed scan, etc).
My brother in law just got diagnosed with Glioblastoma yesterday. He’s only 31. Sadly I don’t think we are winning fast enough for him or people in his situation.
Sadly Richard has now had recurrence. There is still hope for this treatment for others, and it likely extended his life, but it isn't happily ever after this time.
Four years ago today, I was diagnosed with primary mediastinal B-cell lymphoma, a form of diffuse large B-cell lymphoma, a form of non-Hodgkin's lymphoma.
Three years ago on May 26, I was declared in complete remission at MD Anderson, a month after a CAR T-cell infusion. I am still in complete remission after multiple PET scans and CT scans.
The specific therapy I received (Yescarta) was approved by the FDA for refractory diffuse large B-cell lymphoma on October 2017. It was the second such therapy approved by the FDA, and the second that year, after Kymriah in August.
Feels a bit odd to be saved by a class of therapy more than three decades younger than I am.
Readit News
Now, the rest of the chemo wasn't as easy as the first. But the miracles of modern medicine, thanks to dedicated researchers and medical teams, truly blew my mind and that was a decade ago.
I was told I was one of 42 people ever that MD Anderson had seen with this cancer, yet they were able to tailor a treatment. I think Vox is right about the progress being amazing, and I hope it continues.
In the field of cancer research it has been focusing more on drug / treatment resistance, heterogeneous response to the same treatment and development of less invasive methods both in treatment and assessment (imaging and monitoring). We have made huge progress in terms of deeper understanding of cancer biology and human disease mechanism in general.
However we have a very long way to understand when things progress outside of our control how to respond. E.g the key cancer drivers have been identified long ago but how biology and evolution modulate its response to external treatment has so much unknowns. That requires large effort to push the whole foundation of science to elucidate the details of these processes in my opinion.
The big problem is that it's a chronic blood cancer, so the pills have a list price of $180k/yr. Who knows if my insurance will cough up for a second big-money prescription/
1: https://www.lls.org/
Deleted Comment
The greater Houston area has too much cancer, in part caused by the many refineries and chemical factories. At least there are good treatment options nearby.
https://www.propublica.org/article/toxmap-poison-in-the-air
How does the treatment you received compare to the current standard of care? Would current therapies also result in rapid debulking as well?
I was told the rapid debulking was because the first infusion I got was a targeted drug that specifically found and destroyed the cancer cells.
The follow up chemo was R-CHOP (Rituximab, Cyclophosphamide, Doxorubicin, Vincristine, and Prednisone), and my understanding this regimen is still being used.
But it rarely translates to that level of success with masses of cancer patients.
and that it does not require being lucky to receive, as you were.
I didn't have a job with insurance because of luck, in fact I was aware enough of medical costs I chose which job I accepted based on the medical benefits.
I was lucky to be alive at a time treatment was available and within reach of a modern working person, not lucky like the Queen's nephew being promoted.
I think saying I was single and working my first job out of college should put it in perspective here. I didn't drive a Cadillac to my chemos. Stuff costs money, especially medical R&D, production, and care delivery.
“for one in six deaths around the world, killing nearly 10 million people a year globally and over 600,000 people a year in the US.”
A lot of reduced deaths come from less smoking and early detection. We will eventually get there but we need a lot more research.
Get a colonoscopy at 45. We are seeing a big increase in younger people.
https://www.cancerresearch.org/blog/colorectal-cancer-awaren...
N.B. this is not just an increase in detection (as could happen with more/better screening where the true rate isn't changing), but mortality:
> In people under 55, however, death rates have been increasing about 1% per year since the mid-2000s. https://www.cancer.org/cancer/types/colon-rectal-cancer/abou...
However, the fact that mortality has been decreasing above the age of frequent screenings, and increasing below that age, tells us that whatever the problem, the symptom (cancer) could be addressed with better screening, leading to earlier detection and treatment.
Mortality is increasing in young people because they don't get screened, so when it does happened no one catches anything until it's too late.
If the age for recommended regular colonoscopies was 40 or 45, we would see the same mortality reduction above that cutoff.
That said, for someone with increased risk, nothing compares to a colonoscopy - at it does a better job of catching things early, before you start getting blood in your poo.
But if you are at a standard risk, doing a fobt every couple-few years is hugely important. Ask your doctor now!
Of course, the best prevention is one that people actually do.
Looks like colonoscopy is better from your link.
Colonoscopy is a more invasive procedure obviously, but complication rates are very low. It's worth it to find a great gastroenterologist to do the procedure.
Dead Comment
Obviously it didn't work out as we wanted, but she had real hope and prospects. A decade ago, her diagnosis was a guaranteed death sentence. It a nasty business, but at some level, oncology is a field where we stand on the shoulders of those before us. The hope that these tragedies we experience will help future victims brings some comfort personally.
Is that winning? I dont know. But the likelihood that my other parent would still be around if they got their same cancer now is already higher than it was when they passed. Nothing can bring my other parent back but we can prevent others from losing their loved ones.
I lost my father to cancer last year as well - the medical system failed him, his pain treated as exaggerated and his symptoms ignored until it was far too late.
There’s no win for our dads, but I hope the progress prevents future people like them from facing what they did.
how do i know? i work in precision oncology for a decade plus
I'm alive because pharma developed an expensive drug that, at the time I got it, was only administered to 42 others before me.
I was a single person working my first job out of college with Blue Cross Blue Shield and got the best I think was available.
You might be jaded after working so long in a difficult industry; the medical research/pharma work done matters to the patients who receive it and get another decade+ of good life.
This is the first step in the commoditization of any new treatment, no? Initially expensive but that creates competition to bring the price down.
[Maybe not in the US though because the customer cannot select their supplier]
If we're lucky congress won't be bribed, I mean lobbied for the sake of safety, into criminalizing its importation.
We need better (earlier) detection and faster access to it.
Luckily Urgent Care was able to go from ultrasound to CT scan in 1 day. The long wait time has come from the insurance honestly.
Had to go to a different hospital because the original one I went to has to get an approval from United before getting it done (other hospital 2 blocks away doesn't have that same requirement??)
I got referred to a dedicated cancer center and then guess what, I have to call United and ask them to approve it - but I can't get an appointment to do that for 2 weeks.
Ended up doing all the legwork on my own and was able to get a consultation done within a week. Now I'm having to do biopsies, PET scan, ect. Depending on the result I might be able to get it removed next week!
But the pain has become so severe I can't eat, sleep, even lay down without extreme discomfort. I can't imagine waiting around on the insurance to walk me through it.
Funny enough, United sent us a letter in the mail asking if I really wanted to get that original CT scan! Like no, I'd rather not know I have a 7" tumor in my abdomen. Simply a joke of an industry
I wonder if this is regional. I was able to get an MRI scheduled within a couple weeks when I needed one for my non-urgent condition. This was in Chicago, so maybe we're just blessed with a surplus of MRI machines.
Meanwhile there are imaging labs that can do walk-ins if you're willing to pay cash and they have the slack in their schedule, usually somewhat cheap compared to what they'll bill insurance (and if you have a HDHP, what you'll pay). They don't want those machines idle, a gap in the schedule is money they aren't making.
How long? It took me 1 day to get a CT at a clinic and a few hours in the ER.
It 100% depends on your situation. I've had two clinical MRIs done in my life. One was same day. One was scheduled out a few days.
https://www.bbc.com/news/world-australia-69006713?utm_source...
Three years ago on May 26, I was declared in complete remission at MD Anderson, a month after a CAR T-cell infusion. I am still in complete remission after multiple PET scans and CT scans.
The specific therapy I received (Yescarta) was approved by the FDA for refractory diffuse large B-cell lymphoma on October 2017. It was the second such therapy approved by the FDA, and the second that year, after Kymriah in August.
Feels a bit odd to be saved by a class of therapy more than three decades younger than I am.
https://en.wikipedia.org/wiki/Axicabtagene_ciloleucel
https://en.wikipedia.org/wiki/CAR_T_cell