[zevets]

I take four pills a day and the primary side effect is weight gain. The earlier 1950s era treatment made me exhausted 24/7. There's a new trial that has a new target, and looks to solve the remaining symptoms of the disease, with effectively no side effects

The big problem is that it's a chronic blood cancer, so the pills have a list price of $180k/yr. Who knows if my insurance will cough up for a second big-money prescription/

[blacksmith_tb]

My father is 15y out from a trial (at MD Anderson) that put his CLL into remission. You may already know about The Leukemia and Lymphoma Society[1] but they can help with the cost of prescriptions (including negotiating the prices down with the pharmaceutical companies!)

1: https://www.lls.org/

[EasyMark]

At that cost it's worth looking into moving to a country that actually has reasonable medical costs instead of laws protecting those milking the system. a Plan B?

[jplrssn]

Some countries with publicly funded healthcare make immigration much more difficult if you have an expensive health condition. This is the case for Canada for example [1].

[1] https://www.canada.ca/en/immigration-refugees-citizenship/se...

[Max_aaa]

This is why people need to think about these things when they are in full health.

[zevets]

My actual co-pay is $10/mo for the good stuff, plus warfarin (eliquiis/xeralto were too weak for me :/) which is ~$12 for a 90 day supply from the mail order PBM pharmacy. I average about $1500/yr in out-of-pocket medical expenses. My company self insures, and has an extremely generous insurance plan.

Plan B is wait until 2028, when it goes off patent. I think I can keep my job til then. I've learned from the HR folks that they just signed another 3 yr contract with the insurance company, so I'm not forseeing any major changes to coverage. This drug is super pricey, as it was originally targeted towards people with acute cancers, but now the largest market is the chronic disease patients, but they never lowered the price.

I suspect the insurer/PBM are making a small fortune off of my care. They are also being sued by the pharmaceutical industry for using a "co-pay maximizer" which caps (patients) out-of-pocket co-pays, and goes after the pharmaceutical companies' "charities" which help patients purchase their products, which the insurer then takes a cut from.

And the weight gain isn't fluid, it's definitely body fat. I think the weight gain is from the "baseline" treatment being a mutagenic chemotherapy, and the likely fact that my (previously) enlarged spleen was impinging on my stomach limiting my appetite, and the lived fact that it massively slows your metabolism, as I'm always a bit cold.

[xandrius]

I'm not sure how that would work, do countries accept this kind of behaviour?

It's like you've been paying your (lower) taxes in country X and now come over to enjoy the saner system. I guess you should have chosen your priorities earlier?

[Xenoamorphous]

Out of curiosity, when some medication causes weight gain, how does it work? Does it increase appetite? Or does it slow metabolic rate?

[hansvm]

Prednisone is a pretty common drug with weight gain as a side effect, so that might be a good place to look further.

It increases water retention (obviously not permanent or unbounded), increases appetite, and redistributes fat (giving the appearance of weight gain).

[burnt-resistor]

My grandmother took it most of her late life for management of COPD. She had a hard time getting off it completely. She had immense self-control and managed to control the weight gain side-effects, but she had some of the moon face appearance.

[cogman10]

Prednisone is usually not a treatment for cancer, but rather a treatment for the cancer treatment.

A potential side effect of immunotherapy is it can cause the immune system to go haywire and start attacking non-cancer cells.

[hansvm]

Right, but it's a well researched drug with a weight gain side effect, so it's probably a reasonable entry point for them to learn about the thing they asked (unless they happened to care about that cancer drug in particular, but that's not what it sounded like to me).

[burnt-resistor]

I take mirtazapine for crushing depression and now I have clinical obesity and borderline diabetes. Medicare won't cover obesity treatments other than some lifestyle habits lecturing because they consider it "my fault" with zero nuance. [0]

0. https://www.medicare.gov/coverage/obesity-behavioral-therapy

[kolinko]

Usually, aside from water retention, it’s the appetite, I would assume. Lower metabolic rate by itself would lower the appetite because the person would feel less hungry.

[OkayPhysicist]

Metabolic rate and appetite are loosely correlated at best. Most stimulants simultaneously reduce appetite, and increase metabolic rate. (in fact, that's where a significant portion of their negative side effects come from. Habitual meth users tend to become malnourished, mostly because of the appetite suppression, which combined with teeth grinding jitters, causes the iconic "meth mouth")

[zevets]

its metabolic rate. im always cold.

[dghughes]

Not OP but I'd guess fluid retention.

[Loughla]

Usually it's just fluid.

[kilimounjaro]

Are you talking about acalabrutinib and zanubrutinib? If so, have you looked into the chinese version Orelabrutinib? Chinese pharma has gone from backwater to competitive with US in like 5 years