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Comment by stuartbman | Hacker News Reader

Its worth saying that some of the side effects of the newer immunotherapies are bizarre, idiosyncratic, and unpleasant, in a different way from chemotherapies. This is definitely good news, but patients undergoing treatment for melanoma are still extremely complex to manage.

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I went through immunotherapy several years ago, for an iatrogenically induced issue which angers me more, and I think it permanently damaged me. I was quite sick for a while after and have never felt "the same" as before. I know that's vague and easily dismissed but it's as if the side effects of the treatment never went away. I also just spent months and a LOT of money on multiple biopsies apropos of the post's title, one of which got infected and created a whole other level of pain, stress, and cost, for a misdiagnoses. I never needed to be cut up and infected. This happened to me long ago in a more severe way with surgery as well that disabled me. Misdiagnosed by multiple doctors, spent tens of thousands, worse off. I would have had a much higher quality of life overall had I never gone to a doctor in this country. They have never gotten it right from small to big issues, and ruined my life in the process. I guess I need to just learn my lesson that the system can never be trusted here. But it's hard when you have pain or problems and want a solution. In my professional and personal experience the potential negative outcomes are always massively underplayed to patients. Medical errors/misdiagnoses are the THIRD leading cause of death in the USA. If I had been properly informed about any of the big issues I suffered I would have never agreed to "treatment" and better off for it.

All too common. I’m still dependent on a drug which was meant to be temporary but I was given such a high dose it permanently altered me. I’ve spent years tapering down and looking at another year to finally get off it, with no underlying issue anymore. Painfully slow, tedious, and maddening at times. I’m sorry you had to go through that.

I understand what you are going through and am sorry I cannot solve it for all of us in this boat. I try my best not to dwell in the past and be angry, but its so hard when the past's errors and slights affect your quality of life every day.

> I guess I need to just learn my lesson that the system can never be trusted here.

I made a similar generalization about dentists a number of years back. I regret making that generalization now.

I wish I had instead decided “that one can’t be trusted, let me try another”.

I have done that, repeatedly over many decades, and most of them have made me worse to the point nothing can be done IF you find a good one. You can't be an expert in everything and often learn someone is bad too late. Since I live in a country where healthcare is a profit driven business I have been priced out of "trying another" as a result of the damage done and loss of life and income. I cannot afford to keep trying new ones until I find an honest and competent one in most cases. Not at the US prices.

I also went through that with dentists years back and had several in a row insisting I needed lots of expensive work but I kept spending on more opinions as it was out of line with my historical dental health. I lucked into one that confirmed I did not need any of that, proved why to my satisfaction, and said its a real problem in the business and I have been with them ever since.

Could you elaborate please?

As the article says, this immunotherapy essentially works by turning off some of the immune system's "don't attack your own body" safeties. This frees the immune system to attack the cancer (provided it can identify it).

One big advantage of immunotherapy is that the therapy causes a long-term (permanent? I'm not sure anyone knows; the drugs are less than a decade old) change to the immune system - the body continues to attack the cancer even after the drug treatment has ceased.

If you put these two things together, however, you might see why the side effects can be so bizarre. Your immune system might decide that the liver looked at it funny one day, but then decide that the GI tract is actually the real troublemaker a few days later. And since the immune system change persists post-treatment, so do the side effects.

These side effects can (usually) be controlled with corticosteroids (hydrocortisone/prednisone/etc.), which have an immunosuppressant effect. Of course, long-term corticosteroid use has its own severe side effects (plus severe dependency issues). And if you're suppressing the immune system, then you're suppressing the mechanism that the immunotherapy uses to fight the cancer in the first place. The treatment and the side effects are two sides of the same coin.

> this immunotherapy essentially works by turning off some of the immune system's "don't attack your own body" safeties

That sounds like checkpoint inhibitor immunotherapy. Others like CAR-T may have fewer side effects, since they're just augmenting your T cells with a manufactured supply that is primed to attack a specific target.

CAR-T is a lot more expensive for now but over time such "precision" immunotherapies may become mass produced and cheaper and we'll be able to make the immune system do what we want with fewer side effects.

> That sounds like checkpoint inhibitor immunotherapy.

You are correct. That is because the article is about checkpoint inhibitor immunotherapy (specifically yervoy/ipilimumab and opdivo/nivolumab).

This video is an excellent presentation on the subject by Dr. Allison.

https://youtu.be/r1Fp6C1xx6Q

My buddy had bad GI symptoms(throwing up, diarrhea). He also lost his adrenals and thyroid. His thyroid may come back, but he'll be on pills for the rest of his life. IIRC, the treatment lasted about 2 years. He had the advantage of being a guitarist by trade who lived at home anyway. I'm not sure how someone with a normal life would have made it through it. He was the only patient who made it all the way through the trial. He also smoked cigarettes and marijuana, and had a opioid habit. That said, he still managed to keep hiking a couple times a week except on his roughest chemo weeks.

Boosting immune system can cause all kinds of issues if one has an auto immune condition.

Even if you don’t, it can cause such a condition. My immune system “boosted” itself into erathyma multiforme during a nasty cold and that particular issue persisted for years even after the cold was long gone.

Our immune systems are fantastically complicated, probably more complex a defense system than the entire US military with hundreds of millions of years of evolutionary pressure.

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