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Comment by borbulon | Hacker News Reader

I was recently released from a clinical trial because of too many “newly measurable” areas of tumor. I was offered CAR-T but was told that it comes with a high risk of possibly fatal infections and is not guaranteed to work at all for my cancer (HER-2 positive lung cancer, stage 4). I turned it down. I have a wife and 3 kids, I’d rather spend an unknown amount of time being fully present with them than risk my life today.

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My husband is going in to start a second try at car-t tomorrow (HGBCL DH/TH). We got all the same warnings and we were scared the first time. It wasn't that bad. Besides the 3 days he was out of it due to neurotoxicity (which looks much scarier than it is), he has been fully present with me and the kids. The treatment weakened his body but he got up and started building his strength back up. It only took a few weeks to get moving around again. The biggest hassle for him was not being able to drive for 60 days but even that brought us together more. Car-t or any treatment for that matter is not guaranteed to work. Chemo knocked the cancer back so much that it gave him another year of life and we's made the most of it. He felt better than he had in years after chemo. Then he relapsed and we did car-t, and that gave him another 5 months. This next car-t may give him yet another span of time. Sure, a cure would be ideal but 'getting down the road' far enough to try something hasn't been a bad strategy. We are living in a state of hope. Hope helps.

I applaud your courage. Take videos for your kids.

Is this really a good idea? I’ve been thinking about doing this for a while, but a part of me tells me it’d just be weird and morbid for them, and maybe interfere in their ability to let me go and live their life to the fullest.

I don’t mean videos of us together doing stuff (I.e. memories) but videos meant directly for them to watch. I’m thinking about giving them advice for adulthood and telling them about who I am, and also tell them about who they are as kids (so they can remember it after they grow up). But I’m still not convinced it’s a good idea.

Don't make it morbid then? Just talk to them and let them get to know who you are.

That itself is incredibly difficult as most people can't describe who they are beyond their name and title.

Telling stories about who you are seems valuable. I almost think tying recordings to specific life events might be a mistake.

The biggest thing people who have lost someone close to them have to say is that they start to forget what the person looked like and sounded like. I am doing it - I think if you keep it casual, like "hey, I was just thinking about you and the day you graduate high school, and I'll bet....." kind of thing, you're making it less morbid.

There's an old episode of RadioLab or This American Life (I can't remember which) that explores this very topic. If memory serves, there was a woman who lost her mum at an early age but her mum recorded videos to be shared with her at certain points in her life (birthdays, graduations, etc). I recall her mentioning she came to dread those events knowing she would have to relive losing her mum by watching the video. I can't recall if she felt it was a net positive or not.

I wish you could remember more, I'd like to listen to that

Possibly not what OP was thinking of, but maybe this one https://www.thisamericanlife.org/283/transcript

Ctrl+f "video"

My mother passed away from lung cancer about 2 years ago.

I wish I had more videos and audio recordings of her. I wish I had handwritten letters from her. I wish I had audio/video of stories and family history only she would know. Above all, I don’t think I would have found any of the above weird or morbid, and I doubt your children (or spouse?) will either. I know my siblings feel the same as I do. You should feel safe in knowing that they will deeply appreciate any artifacts you leave behind for them to think about when they miss you.

I’m sorry for what you’re going through, and I wish you and your family the best.

I have located different bits of old media recorded of my grandfathers on both sides. One example being a long form interview about my maternal grandfather’s Korean War experiences. I enjoy watching or listening to these from time to time. If my father passed early I am sure I would’ve been very grateful to hear his words too.

My Mum went through CAR-T for lymphoma earlier this year. It's a brutal therapy but can offer benefits in the long term.

As you mentioned, the big issues are around infections. It completely wipes out the immune system, including all vaccinations. Every vaccination needs to be taken again, once the body is recovered from the initial therapy.

My Mum recently contracted COVID and is in hospital being given Paxlovid. She had COVID a while ago and it was nothing compared to her current state. CAR-T made it significantly worse but will hopefully be worth it in the long term.

I'm saddened by your news but - given what I've experienced with my Mum during her cancer journey - can understand the difficult decision you've made.

https://www.onclive.com/view/fda-requires-boxed-warning-for-...

Sorry for being too direct and perhaps offensive, but I'm curious. Was the cancer detected much later? I'm assuming that if it were caught in the early stages, you might have been able to get treated with trastuzumab.

If it's non-small cell lung cancer, which accounts for 80-85% of lung cancer cases, it's very aggressive and rarely noticed before stage 4.

I didn't have any symptoms until it was stage 4. I developed a kind of crackling in my right lung when I breathed, so I got it checked out.

No problem, I don't mind talking about it. It was stage 4 when it was detected. Right lung, pleura, up my lymph nodes to the opposite side. There was a lot of it. And I've had Stereotactic RadioSurgery a few times for metastases in my brain.

Herceptin (trastuzumab) is mainly for HER-2 overexpression, whereas I have HER-2 mutation. However, we did try it last year alongside another chemo whose name I cannot remember, and IIRC that's the combo which gave me neuropathy in my feet (I now take lots of gabapentin every day so my feet don't feel like they're on fire).

Other than the clinical trial drug, which helped for a few months, the one thing that did help but eventually gave me pneumonitis so I had to stop it, was Enhertu.

I'm very sorry to hear about your diagnosis.

Do you follow the work of Dr. Seyfried at Boston University?

No but since I'm a patient at Dana Farber in Chestnut Hill, I'm sure my oncologist does.

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