Hospice or treatment?

@artistrose Regarding costs of treatments 1) There is the amount the institution "bills" the insurer for the procedure 2) There is the amount the insurer "approves" for the procedure and pays. That amount is far far less!!! I read a paper awhile back discussing this huge difference between charge and what is actually paid. No one knows why we do this in the US and where it came from ...just the way it is here. And why people with no healthcare insurance went bankrupt...because with no insurance you have to pay this "retail" price.
You mention you have a Part C Medicare plan - that means an insurance company has taken over and you must go to their provider network, and they must approve any treatment proposed. It would be wise to inform yourself now (call them) what are the requirements of your insurance provider, time for approval etc. for any treatment options

Update for March 14th. Made it past Friday 13th 😁.
Stage 4 adenocarcinoma mets to liver, brain. I’ve started Tagrisso and tolerating that well. Had first Chemo treatment of Carboplatin and Permextred. Scheduled for 6 cycles at this point, but we’ll see. Last two will be just Permextred. Then oncologist said ongoing chemo with that, endlessly, or what I call “forever until further notice.” Not excited about that and likely won’t do that. But…currently, I’m doing more treatment than I thought I’d accept. I’m ok with the Tagrisso, it’s just the chemo I’m questioning. But, I’ve read the studies so I understand why oncologist is recommending the two together. Anyway, just checking in with y’all.

@artistrose glad your treatment is off to a good start and that you're finding the balance of what benefits are worthwhile to you. make sure to stay hydrated and rest as you need in the days after your infusions. sending lots of positive energy your way!

Update for March 14th. Made it past Friday 13th 😁.
Stage 4 adenocarcinoma mets to liver, brain. I’ve started Tagrisso and tolerating that well. Had first Chemo treatment of Carboplatin and Permextred. Scheduled for 6 cycles at this point, but we’ll see. Last two will be just Permextred. Then oncologist said ongoing chemo with that, endlessly, or what I call “forever until further notice.” Not excited about that and likely won’t do that. But…currently, I’m doing more treatment than I thought I’d accept. I’m ok with the Tagrisso, it’s just the chemo I’m questioning. But, I’ve read the studies so I understand why oncologist is recommending the two together. Anyway, just checking in with y’all.

@artistrose Everyone is different on how they respond to treatments. Don’t accept a self fulfilling prophecy even if it comes from your oncologist. Your body does what your mind tells it.
Educate yourself on how you can contribute to treatment outcomes. Look into integrative oncology which are the things only you can do to promote good treatment outcomes, ie diet, exercise, meditation, acupuncture, emotional and mental well being. I do all the above. There’s a must read AntiCancer by Lorenzo Cohen, former head of integrative oncology at MD Anderson. I reread it, it’s so informative. Can’t recommend it highly enough.

Thank you. Will add that to my list. One book I’ve read, “When Breathe Becomes Air,” by Paul Kalanithi; is an excellent book. Not in the same category; ie, he is a neurosurgeon who dies from his cancer. But it’s a moving biography and gives a unique perspective of a doctor addressing his own cancer. I’m glad I read it.

I was diagnosed with Stage 3 squamous NSCLC and had chemo (6 treatments) and radiation (30 treatments) over 6 weeks in the fall of 2023. I then completed Imfimzi immunotherapy treatments in February 2025 (2/mo sessions for a year). I di have one case of pneumonitis in early 2024 that was successfully treated with prednisone.

I have experienced shortness of breath (SOB) fairly consistently, sometimes severe, over the last 9 moths or so, The only treatment that has been effective (multiple times ) is taking antibiotics (Doxycycline) and Prednisone (40mg phasing down to 10mg/day) over 12 days. I have been on these prescriptions at least 6 times over the last year.

To avoid using prednisone and antibiotics, I have tried nebulizer treatments, first using albuterol 2-3 times/ day and then adding a steroid (budesonide) 2/day but this results in only temporary relief (but better than my daily inhaler). I am also using my rescue inhaler too much.

I am still fairly active - golf, low-intensity gym , grandkids etc. - but the SOB is starting to affect my activities.

Has anyone experienced the same situation and come up with other solutions to their SOB with their pulmonologist? I am really trying to stay off prednisone, even of the dose is relatively low. Thank you.