There was a trial published just after her diagnosis that showed progression free survival at 2 years of 57% (chemo+osimertinib) vs 41% (osimertinib).

https://www.nejm.org/doi/full/10.1056/NEJMoa2306434

She's 6 days into the chemo. There are 4 rounds of pemetrexed+carboplatin and then maintenance carboplatin (forever). Every 21 days.

So far, it's been rough, but hopefully her body will adjust and once she's just on carboplatin hopefully her quality of life will be better.

She had few side effects from the osimertinib, but the main one was mouth sores. They're gone now, thankfully.

Another thing people need to know about this: this diagnosis often comes with regular thoracentesis (removal of fluid from the chest). In this case, it's in the lining of her lung, not lung itself.

Advice to anyone in this situation: make all future appointments for thoracentesis, because you don't want to go into the ER/ED to get it done. And, we've stopped allowing residents to practice on her (once it was quite painful).

EDIT:

Forgot to add: carboplatin crosses the blood-brain barrier, as do the cancer cells. The end state for this cancer, even with the above treatments, is usually tumors in the brain.

Make sure to grab family and friends to help out. The want to help out, most of the time, at least. I know it's hard to ask, but make sure to do it anyways.

And yeah, standard generic advice to take care of yourself too. I hated that advice, as there just was never any time to do so. One thing that helped was to schedule that 'me' time in and make others aware of it. If you put it on the schedule, you'll have a better chance of taking it.

Two tips with MDs:

1) Carry and use a notebook in all MD interactions. Just a simple journal is all. Time, medications given, dosages, MD administering, etc. It's a good back up to have, sure, but you'll likely never use it. The real power is when MDs see you writing things down. They take you more seriously and they take themselves more seriously. I think they think that you'll sue now and have some proof. But who knows.

2) If you're in for a long term treatment (1+ nights) put a big bowl of candy outside the door. Nurses etc. will stop by more often to check up on things and generally seem to like you more. Consider putting cigarettes in there too, depending on if your nurses smoke. Then they will really like you and go above and beyond.

Again, best of luck to you both.

FUCK cancer.

Does that mean the rate is lower for Asian women who do smoke?

Not all lung cancers are related to smoking, but I'm not aware of any where smoking decreases incidence or is protective.

Best wishes.

So she had stage 4 lung cancer.

"Is alive only because of this drug":

- Was her life expectancy obviously prolonged? If so, by how much has she exceeded it so far?

- Has the cancer progressed more slowly, halted, or regressed?

Thanks.

In general, these types of cancers spew mets and spread quickly. Many are resistant to chemo, go to the brain (chemo cannot help there) and only respond to high focused radiation like SRS or proton beam.

Immunotherapies essentially suppress checkpoints that cancer cells use to avoid immune response and/or cause your body to target specific checkpoints. I can’t read FT.com, but I believe it’s talking about a targeted therapy that allows your body to control the cancer.

There’s alot of research happening around things like immunotherapy combined with custom versions of Moderna and other vaccines that will significantly improve treatment and save people going through what my wife went through. It’s a good time.

I know there's even researchers creating AI-assisted treatment regimes that match specific mutations, other aspects of people's DNA, and all the immunotherapy drugs, in order to mix and match the best possible solution. Ongoing research and not yet widely available.

I look forward to learning more about the newer developments.

I can't speak to the one in the article, but the drugs he's on aren't chemo, but they interrupt one of the pathways the cancer is using to infinitely grow. They have side effects, but not bad ones comparatively.

Dying from LC is a terrible way to go. Your lungs fill with fluid and you slowly drown in your own fluid. The pain meds make you hallucinate terrible thoughts. I wouldn't wish it on anyone.

For the benefit of humanity, I hope this treatment works.

My mom was only 56 (2004) and I got a call from the hospice very early in the morning.

At her request, I had tried to take care of her myself for the couple weeks after her diagnosis, but once the hallucinations started, due to her increasing the pain meds, she started screaming one night and the neighbors called the police thinking I was abusing her.

Thankfully, they called a case worker and I was able to get her into hospice pretty shortly after that and then it was just a couple days more at that point.

It was pretty traumatic. One of those life events you never forget. RIP mom.

I was the only one there as he took his last breath, and it still brings tears when I think about it.

How come we are ok with euthanasia for pets but not people?

I think because:

- It mostly wasn't an issue we had to deal with until recently because we didn't have the medical techniques to preserve people's lives so long anyway.

- There are some concerns around people being forced into it that require any laws enabling it to be carefully designed.

- Religion providing it's usual function of inertia around societal customs slowing the change.

Pretty much everyone I know under the age of 60 (and many older) support euthanasia for people who have dementia or some other unpleasant condition that affects their quality of life (self-determined, not forced on people), so I'm quietly confident that it will be happen soon.

I'll be pretty mad if it's not available for me if/when I get to the point that I want it!

I never smoked and I was never a big drinker. But, I stopped drinking entirely a couple years ago cause it was just too painful to look at him with his current health issues, and think to myself that I'm going to end up like he is. No thanks, I don't need that poison.

Just chiming in that I’m super thankful to that these newer treatments are so effective.

That said it’s not cheap and he still has to work to keep his insurance… otherwise it’d be ~10k/mo.

I mean, it'd be covered under the ACA or presumably medicare as well?

https://doi.org/10.1093/annonc/mdw129

https://www.cancer.net/research-and-advocacy/clinical-trials...

Started to look after my own health a bit more.

This is a very welcome development.

Probably need to make another pass. (I'm in Europe)

FWIW, my policies don't have any specific denials for certain causes of death (particular disease, etc) but I did have to provide medical records (and I'm not in perfect health).

Surely there are tradeoffs here, because CT scans use ionizing radiation.

Have CT scans gotten much more efficient (regarding radiation dose) in recent years?

For both of these diseases, it seems like the small amount of radiation (2-3x normal yearly background) is well worth the radiation risk done twice a decade for low risk (>40 y/o) and perhaps up to yearly for high-risk former/current heavy smokers (>50 y/o), which is the current recommendation. Even out-of-pocket, these scans tend to be very inexpensive (for medical diagnostic tests), at around $150-200.

Be super careful though, as many insurance companies (not only life insurance) just seem like scams. With you only that finding at the worse possible time, after the event.

The alternative being "try to plan for not having to rely on them", which itself may also not be possible.

The drug seems to have been approved in 2015-16. If that's the case, why is this announcement of efficacy happening now? A long-term outcome after a short-term tentative approval?

> Dec 21, 2020 Approval Tagrisso Approved in the US for the Adjuvant Treatment of Patients with Early-Stage EGFR-Mutated Non-Small Cell Lung Cancer

> Apr 18, 2018 Approval FDA Approves Tagrisso (osimertinib) as First-Line Treatment for EGFR-Mutated Non-Small Cell Lung Cancer

> Jun 6, 2017 AstraZeneca Presents Tagrisso (osimertinib) Data in Patients with EGFR T790M-Mutation Positive Lung Cancer and Central Nervous System Metastases

> Mar 31, 2017 Approval Tagrisso (osimertinib) Receives FDA Full Approval

> Nov 13, 2015 Approval FDA Approves Tagrisso (osimertinib) for EGFR T790M Mutation-Positive Non-Small Cell Lung Cancer

https://www.drugs.com/history/tagrisso.html

Doctors already have discretion to prescribe Tagrisso for the common flu. However, a doctor that does so will struggle to get insurance to cover it, and will have a harder defense if the patient sues.

The bottle neck is you need someone with a better use hypothesis, and a billion dollars to test that. Drug Trials and development are obscenely expensive.

Even if this was the most altruistic, non-profit funded goal to solve an obscure ailment, once that inevitably fails - and statistically it is inevitably - all capital has been expended, your team's reputation has been spent. You go to something that has more consensus instead of your alchemy concoction nobody's ever head of and wasn't good for the one thing you made it for.

>> In people treated with osimertinib, resistance usually develops within approximately 10 months.

https://en.wikipedia.org/wiki/Osimertinib

My understanding is that of all cancer drugs approved by the FDA between 2000-2016 (around 90 drugs), the median life extension was just over 2 months...

That 2 months average is often driven by more people alive at the end of a 2 year trial.

Also, 16 years of 2 month extensions ends up being quite meaningful.

See https://www.nature.com/articles/d41586-019-00857-9 for more

Two months was from clinical trials where there's no doubt that the "thumb is on the scale" in a host of ways, creating an exaggerated estimate of efficacy that would be realised in the real world.

The reality is closer to no life extension, with the remaining lifespan is spent sicker than you'd have been without the drugs.

If you created a drug that shifted the ratio to 60/40, and measured right at the 5 year mark. In a population of 100 untreated people, you'd get like 4080 total months lived (80x36 + 20x60). In a population of 100 treated people, you'd get like 4560 months lived (60x36+40x60).

That's only generating an extra 4.8 months of life per person treated. However, you've doubled the number of people alive at the end of trial.

Now obviously this is a toy example that's probably a bit exaggerated, but this type of behavior is exactly why median/average life extension is an inadequate measure alone.

I dont think that is true at all. The data is pretty clear that lifespan is significantly increasing.

>Over time, the mean overall survival has improved from two months in 1973 to five months in 2015. Regarding long-term survival, a clear rise in 2yS is noted, increasing from 2.6% in 1973 to 12.9% in 2013 (latest year of which 2yS data can be calculated; Figure 1 and Tables 1 and 2), occurring mostly after the mid-1990s. A more modest increase is seen in the 5yS, from 0.7% in 1973 to 3.2% in 2010.

>https://www.researchgate.net/publication/348455938_Long-Term...

In general though, I tend to agree that in the US we spend far too much on what essentially boils down to performative end of Life Care. If you ask someone if they would rather spend $200k for 2 months or leave it to their family, I think most people would pick the second option. When someone else is paying, they choose the first option.

This is mind-bogglingly wrong for most cancers. Several death sentences have been turned into treatable diseases.

You are right that progress is slow and expensive in a lot of areas.

It seems you are frustrated or angry about it. What do you want people to do? Are we not spending enough on research? Are we spending too much?

I think the skewed distribution is less relevant than the sample group. There are limits to what we can expect from medicine. We don't have improved survival after decapitation, but that doesn't mean surgery has been at a standstill.

It would be interesting to look up survival rates for earlier stages. I expect the difference would be more substantial.

It seems relevant, as a patient to ask, on average, how much longer will I live if I take this drug?

If you run a year long trial where you flip a coin and immediately kill or save people based on the results, your average survival will be 6 months

An exciting, underrated possibility: therapies in conjunction with each other, even if the therapies are initially studied in isolation. Single-agent chemo doesn't work for many cancer types, but multi-agent chemo often does. The same may be true of the small molecules, antibody drug conjugates (ADCs), and monoclonal or bispecific antibodies being tested now. I have squamous cell carcinoma initially of the tongue, and now of the head, neck, and lungs (https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce...), and I'm on a clinical trial monotherapy at UCSD called MCLA-158 / petosemtamab. But, if I live long enough, which isn't super likely but isn't impossible, there's a decent shot that the FDA will finally approve Moderna's mRNA-4157 personalized vaccine for melanoma—hopefully in 2025. If I can get mRNA-4157 off label and combine it with pembrolizumab (Keytruda) and petosemtamab (assuming the latter is approved, too), that combo may be much more potent than any of the three in isolation, and I've already failed pembro as a monotherapy and pembro + carboplatin + paclitaxel.

And if that combo doesn't work, or has some unexpected negative effect (including death), well, I'm going to die anyway, and the risk seems worthwhile.

As another commenter observed, the median can be skewed by the number of people who don't respond; among those who respond to a given drug, some don't respond, but some live surprisingly long.

The may work better, but the drugs only run the studies to that threshold.

My mom died of lung cancer like 10 years ago and the immunotherapy drugs like keytuda all has those disclaimers.

Her pd1 wasn't a good fit, but some like Jimmy Carter responded really well

It works (in “statistically significant and highly clinically meaningful” manner) against certain types of lung cancer when administered on early stage.

It was provisionally approved after success in phase 1 trial by FDA in 2015 and by EMA in 2016.

Side effects:

Very common (greater than 10% of clinical trial subjects) adverse effects include diarrhea, stomatitis, rashes, dry or itchy skin, infections where finger or toenails abut skin, low platelet counts, low leukocyte counts, and low neutrophil counts.

Common (between 1% and 10% of clinical trial subjects) adverse effects include interstitial lung disease.

It is really good to see progress in cancer treatment so!

What is considered early stage? Pre symptoms?

And what type of success rate are we talking here?

https://www.cancer.org/cancer/diagnosis-staging/staging.html

There are simplified categories of early/late stages, usually used in public health statistics. "Early stage" here is in situ (hasn't broken out of the tissue where it first appeared) or localized (hasn't left the primary site/organ). "Late stage" is regional (metastasized to adjacent organs) or distant (metastasized to non-adjacent organs, usually through the bloodstream or lymphatic system).

>What is considered early stage? Pre symptoms?

Not necessarily. This is generally true for things like kidney cancer, which is really deadly. People don't usually get checked until they have symptoms, which is usually after it's metastasized. But benign tumors can cause symptoms by physically pressing on organs. Benign brain tumors, which can kill, are an extreme example of this.

Unfortunately, these are very clinician-focused and are very hard to understand without a medical background. They also don't usually cover experimental treatments that are still in trials, but in some cases can be extremely helpful. I work on an app at Outcomes4Me (https://outcomes4me.com/) that is trying to convert the NCI guidelines into an algorithm so that we can tell patients in simpler terms what their treatment options are based on their specific diagnosis. We also try to find clinical trials recruiting for their specific diagnosis. We've done this for breast and lung cancer so far.

EDIT: if you're looking for more of a "what is the current best known treatment plan for xyz" then this might not be what you're looking for. The standard of care is very much changing very often, I don't know if anyone has a solution for disseminating that. foundation medicine also has a patient-focused side where you can get your own test and get pointed to the treatment for your cancer genomic profile [2]. The societies are probably trying the most to get all of that data available/up-to-date (for example: the American Cancer Society)

[1] https://www.foundationmedicine.com/service/genomic-data-solu...

[2] https://www.foundationmedicine.com/patient/start-with-step-o...

There was also a published study by Roswell Park, on a few hundred patients many of which flew out to Cuba to take it, but it's only Phase 1, so no efficacy, only safety and antibody titers : https://www.roswellpark.org/newsroom/201903-safety-analysis-...

> I also ran a failed medical tourism company which sent people to get this treatment in Cuba

Why did the company fail? How effective was the treatment?

After observational studies of patients who flew to Cuba to take it confirmed efficacy, phase 2 clinical trials are underway in the US : NCT02955290

It's unfortunate it took this long. If it wasn't for the sanctions, it would certainly already have either finished (or failed, though unlikely) trials.

> Please don't post comments saying that HN is turning into Reddit. It's a semi-noob illusion, as old as the hills.