Hi all – thought I'd update everybody with what's been going on since my fiance (!!!) was hospitalized last week. It's so comforting to hear from people who've gone through this. Telling the story seems to help.
He was discharged over the weekend. We have a very fancy home oxygen system now to help his breathing. So far he just sleeps most of the day, feels nauseous, limited appetite. He gets extremely fatigued with any exertion and can't go without the oxygen, although at rest he does alright at just 2LPM (pretty low trickle of oxygen there). With activity we boost it to 5LPM. We learned the name for what he's got going on in his lungs – lymphangitic carcinomatosis. Along with the blood clot, of course (which remains small and unchanged since they discovered it 1.5 weeks ago).
There have been some small improvements since he started Taf/Mek last Tuesday. The tumour in his mouth is over 50% smaller than it was pre-treatment. His LDH has declined slightly (it had skyrocketed the week before). The respiratory therapist who came by to assess his oxygen usage yesterday thinks that his oxygen levels have improved since he was in the hospital, since at rest now he does pretty well even without oxygen (at the hospital he needed 6LPM even at rest in the hospital bed).
Still, we're not really seeing that hallelujah moment where he is back to himself. He's very tired and sleeps almost all day. He can't walk very far due to shortness of breath (I'm renting a wheelchair for him right now). The oncologist called me and said everybody is different, but someone in his condition can probably expect a life expectancy <6 months. What we can hope for now, she says, is that Taf/Mek will put him into partial remission for a few months. She doesn't think putting him back on immunotherapy is worthwhile even if Taf/Mek works for a little bit, considering he failed so spectacularly after the first treatment. She might change her mind on that if Taf/Mek put him into a nice solid remission for more than a couple months but she doesn't think that's likely with his tumor burden.
Trying to take things day by day. We've been referred to palliative services and a home care nurse program. Looking for hope in the small things. It's hard to see him so scared.
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