| 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). 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.