My wife was diagnosed in Nov '23. Stage 4. She had a mutation that allowed Tagrisso/osimertinib. There are many mutations, but this one is prevalent in Asian women who have never smoked.
There was a trial published just after her diagnosis that showed progression free survival at 2 years of 57% (chemo+osimertinib) vs 41% (osimertinib).
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.
Hey, best of luck to you both. I've been there with close family members and cancer. It's no fun at all. Easily the hardest thing I've ever had to do in my life was just to care and watch.
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.
Sure, you can generally refuse any medical care in the US. With respect to residents, It can be as simple as asking and picking the right doctor for your procedure. Their credentials are generally public.
It feels so good to read a comment like this. Thank you for sharing and I’m really happy for you and your family (and modern medicine that makes it all possible).
I’m not completely read in to all the details but she told me prior to this drug her diagnoses was a “death sentence.” The lung cancer had metastasized throughout her bones. The indication was sudden lower body paralysis caused by a spinal tumor. She had spinal fusion surgery as well. I understand because it’s stage 4 she will never be in “remission” but it has regressed significantly.
My wife had stage 4 melanoma. Prior to the newish immunotherapies about 5 years ago, it was a death sentence — 6-9 months life expectancy from diagnosis. Now, it’s 60-70% 5 year survival rate. Unfortunately my wife wasn’t one of them.
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.
Sorry to hear about your wife. Yes, once those melanomas go deep enough in the skin, they spread everywhere like a plague.
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.
My dad was in a similar situation ~10 years ago. Stage 4 lung cancer, although a different underlying mutation (ALK). Prognosis was less than a year. But he got on some new-at-the-time inhibitor drugs (Crizotinib iirc) which eliminated ("no evidence") the cancer. What is left does slowly mutates around the drugs, and he goes in for regular monitoring and has had some radiation therapy to knock down specific growth spots, but he's still here with us.
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.
Amazing. Thanks for sharing. Oncology is such a complex field. I imagine discoveries in this field will only advance exponentially due to increasing investments and AI tech.
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.