Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

Starting Hospice

jakeseliger.com

Post reply on HN
Print view View original

121–130 of 162 posts

Re: Starting Hospice

#121

Post by [deleted] »

jseliger wrote: post #96
keeptrying wrote: post #73

Earlier quoted context omitted.

Thank you for your writing - its taught me a lot about a lot of things. One concrete highlight is how important patient agency is in the patient-doctor relationship - which you've written about a few times. I'm truly deeply sorry about this whole situation. Thank you for sharing all your knowledge.

I hope too to accomplish at least two concrete ends: 1. Help and educate other people who are suddenly facing the opaque clinical-trial system: https://bessstillman.substack.com/p/please-be-dying-but-not-... 2. Ultimately, reform and speed FDA approval for fatal diseases like recurrent / metastatic head and neck cancers: https://jakeseliger.com/2024/01/29/the-dead-and-dying-at-the... . A drug like petosemtamab (MCLA-…

[deleted]

Re: Starting Hospice

#122

Post by Take8435 »

timr wrote: post #113
cgijoe wrote: post #80

Earlier quoted context omitted.

Talk to your doctor, and ask to be screened for all common cancers. A colonoscopy is in your future (I just had one). Also ask for a Prostate-Specific Antigen (PSA) Test. Also look into the HPV vaccine.

Don't do this. Nearly all cancer tests are overly sensitive, and not great at detecting the cancers you care about (the ones that will progress). If you run out and get a bunch of random cancer tests, you are basically ensuring that you will get unnecessary and painful treatment for a finding that probably wouldn't have harmed you in the first place. It's not a satisfying answer, but it's true. The reason most cancer…

Agreed. For more see https://www.npr.org/sections/health-shots/2018/08/18/6395885...

Re: Starting Hospice

#123

Post by fhsm »

timr wrote: post #113
cgijoe wrote: post #80

Earlier quoted context omitted.

Talk to your doctor, and ask to be screened for all common cancers. A colonoscopy is in your future (I just had one). Also ask for a Prostate-Specific Antigen (PSA) Test. Also look into the HPV vaccine.

Don't do this. Nearly all cancer tests are overly sensitive, and not great at detecting the cancers you care about (the ones that will progress). If you run out and get a bunch of random cancer tests, you are basically ensuring that you will get unnecessary and painful treatment for a finding that probably wouldn't have harmed you in the first place. It's not a satisfying answer, but it's true. The reason most cancer…

Yes. You are correct. Patent is providing bad advice about PSA

https://www.bmj.com/content/362/bmj.k3519

Colo , when appropriate , is good but not as a general interest test:

https://jamanetwork.com/journals/jama/fullarticle/2529486

Re: Starting Hospice

#124

Post by _yb2s »

Jake, you don't know me but I want to thank you and Bess for sharing what you've been going through with us on here. It would have been easier not to fight this hard, and not to write all of this, and I appreciate that you did. If you can, and I know maybe you can't, you should write a personal letter to your daughter, to read when she is old enough to understand how much you love her, even though you never met her. Your story makes me want to do the same for my son, even though I am not dying as far as I know. Bess's article "Forever is such a short, long time" deeply affected me, and I will be quoting it directly when I say my wedding vows in a few weeks. Her vision of what love and good relationship means is deeply wise, and you are both lucky to have each other.

Re: Starting Hospice

#126

Post by ljsprague »

DaoVeles wrote: post #19

I have always like the quote "Death the price of entry you pay on the exit". We all have to pay it at some point. All that matters is that you had a grand time. Take it easy. Have a laugh where you can. Embrace the love. And take that final curtain call like a champ!

“Men must endure/Their going hence, even as their coming hither: Ripeness is all.”

Re: Starting Hospice

#127

Post by valunord »

_yb2s wrote: post #109
slater wrote: post #88

Earlier quoted context omitted.

[flagged]

Because of valunords comment, I did a review of the literature in Google Scholar, and found there are quite a few small trials of ketogenic diets and fasting on different cancers. It is an active area of research, but the results so far are not amazing looking, mortality rates are about the same. At best, it seems like it might slightly increase the effectiveness of specific existing treatments for a small handful of…

[flagged]

Re: Starting Hospice

#128

Post by byte_0 »

Hi Jake. We do not know each other, but in reading your story I can tell you that you are loved even by we who do not know you. May the Lord God bless you and your family and provide the peace needed.

Re: Starting Hospice

#130

Post by thenerdhead »

jseliger wrote: post #96
keeptrying wrote: post #73

Earlier quoted context omitted.

Thank you for your writing - its taught me a lot about a lot of things. One concrete highlight is how important patient agency is in the patient-doctor relationship - which you've written about a few times. I'm truly deeply sorry about this whole situation. Thank you for sharing all your knowledge.

I hope too to accomplish at least two concrete ends: 1. Help and educate other people who are suddenly facing the opaque clinical-trial system: https://bessstillman.substack.com/p/please-be-dying-but-not-... 2. Ultimately, reform and speed FDA approval for fatal diseases like recurrent / metastatic head and neck cancers: https://jakeseliger.com/2024/01/29/the-dead-and-dying-at-the... . A drug like petosemtamab (MCLA-…

Are you able to bypass the FDA with the Right to Try act?

https://www.fda.gov/media/133864/download#:~:text=Right%20to....

The FDA is a joke. I mean that in the kindest way possible as someone with long covid waiting for the FDA to allow me access to previous covid therapeutics that show promise in this disease.

Post reply on HN