[borbulon]

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.

[hdavhdav]

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.

[aaronblohowiak]

I applaud your courage. Take videos for your kids.

[low_tech_love]

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.

[beardface]

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.

[adamredwoods]

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

[fakedang]

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.

[borbulon]

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.

[ycombinator_acc]

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.

[aagha]

I'm very sorry to hear about your diagnosis.

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

[borbulon]

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