Comment by rateofchange | Hacker News Reader

Comment by rateofchange | Hacker News Reader

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Yes, this is a sobering diagnosis. And it has spread to the liver, which likely means the prognosis is far worse.

I take your point about quality of life for what might remain. These are tough decisions those of us around her are going to have to make.

I have friends who have reported about acquaintances who beat pancreatic cancer diagnosis and went on to live twenty or thirty years. I suspect these were early onset rather than stage four.

This company seems to have had early success with metastatic pancreatic cancer. We've reached out to see what they have to say.

https://nantkwest.com/nantkwest-and-immunitybio-to-initiate-...

From the article:

"Pancreatic cancer kills an estimated 47,000 people annually; it is the fourth leading cause of cancer-related death in the U.S., and 57,600 new cases are expected in 2020. Less than 5% of these patients will live for more than five years after diagnosis, and the median survival prognosis is 5 to 8 months."

The end of that paragraph is quite sobering.

One thing I didn't cover is that "cancer" isn't one thing.

And neither is pancreatic cancer.

Steve Jobs had a rarer and less aggressive form.

That's why he lived with his diagnosis as long as he did.

His pancreatic cancer was a different pancreatic cancer from the most common pancreatic cancer.

The median survival rate for pancreatic cancer is low because it tends to be diagnosed late.

This is the case with your friend because the cancer is at stage four.

In terms of quality of life, seeking enrollment in a clinical trial involves a lot of meetings and paperwork and often travel.

Keep in mind that the driving force of the clinical trial you link is a business venture with a medical component.

The trial is randomized which means some enrollees won't get the treatment being tested.

In terms of anecdotal evidence of long survival, misdiagnosis is a real possibility as one goes further and further back, e.g. a person diagnosed in 1955 who lived to 1985.

I'm not sure why the patient can't make their own decisions, but I don't have all the facts.

I am sorry that you are dealing with this.

> I'm not sure why the patient can't make their own decisions, but I don't have all the facts.

She is older (85+) and not equipped to navigate the more complex aspects of this.

This is also where the quality of life part becomes far more significant. At this age...given the likely prospects...it might make more sense to go for quality of life and make good memories during whatever time might remain than anything else. These are difficult topics to discuss and even more difficult options to consider because it isn't all about making purely analytical decisions.

The current guidance is a six week course of chemo followed by an evaluation of outcomes to support further actions.

I talked with my beloved outlining what you've described. Nearly all stage four chemo-therapy is palliative. It is a tradeoff between symptoms of the disease and side-effects of the chemo chemicals. The advice was to try chemo and see how it goes, if the side-effects are too much then stop. There's no reason to complete a palliative treatment that's not palliative. The goal of the treatment is to reduce the tumor burden on the patient.

My advice from years of living with someone who helps people going through what you and those around you are going through:

1. Bring in hospice as soon as the patient qualifies. Helping people through the dying process is what they do everyday. There's counseling for the patient, the care-givers, and other family members. Before during and after. There are also chaplin services. And of course nursing.

2. Right now all the healthcare protocols are new and conservative due to Covid-19. Hospice will have the best grasp on what institutionalization of the patient will entail, how to navigate the new reality should institutionalization happen, and how best to avoid it under the current circumstances.

3. There is unlikely to be a sudden shift in family dynamics in terms of relationships. If people have always been close, that's probably the way it will stay. If people have always been unhappy with each other, plans should presume that that's the way it will stay...this probably won't suddenly fix tense relationships.

There is an analytic view, but it is difficult to accept and feels rude to articulate. Yet, we all know that life only lasts not long enough. And making the most of the not long enough is entirely rational.

Again, I sorry you are going through this and hope it all goes as peacefully as it can.

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