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Leukemia Has Won

alex.blog

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Re: Leukemia Has Won

#41

Post by stevej201 »

So sad. Reminds of some promising research into fasting that applies specifically to his form of leukemia, ALL. https://www.utsouthwestern.edu/newsroom/articles/year-2016/l... I'm sure he's had a ton of people suggesting all kinds of things, but I wonder if he has looked into fasting. There's not much downside to trying at this point.

“Strikingly, we found that in models of ALL, a regimen consisting of six cycles of one day of fasting followed by one day of feeding completely inhibited cancer development,” he said. At the end of seven weeks, the fasted mice had virtually no detectible cancerous cells compared to an average of nearly 68 percent of cells found to be cancerous in the test areas of the non-fasted mice."

Re: Leukemia Has Won

#42

Post by [deleted] »

moises_silva wrote: post #40
DoreenMichele wrote: post #31

Earlier quoted context omitted.

There's a terrific book called "Tell them who I am." It was written, I think, in the last year of the life of a man dying of cancer. He wanted to spend his final days doing something meaningful. It's about the lives and identities of homeless women at shelters where he volunteered. I am sympathetic to your rage. I wish I knew how to help such people. But I don't. Death comes for us all, sooner or later, one way or an…

> Death comes for us all, sooner or later, one way or another. That's one of the few truisms in life. I'm genuinely making an effort to understand how this is relevant to someone with a cancer diagnosis. Sure, dead comes sooner or later, and that's the whole point of why one would feel it sucks and that we're losing, because often cancer means for you, dead came way too early. I have not known anyone with cancer, but…

[deleted]

Re: Leukemia Has Won

#43

Post by soy_comptroller »

jph wrote: post #10

Godspeed. Thank you for sharing your stories. For anyone reading here, one way to donate in general is The Leukemia & Lymphoma Society: https://www.lls.org/ LLS funds blood cancer research, education and patient services. You may know of LLS because of its annual fundraiser event known as “Light the Night” and its fitness initiatives “Team in Training“.

LLS is an amazing resource.

It is a great source of useful information for patients and families. Anyone going through a similar process knows the horrors of googling for information. You end up with all sorts of pseudo-science (e.g. "paleo cured my cancer"), false hopes (e.g. mouse trials which sort of address particular variants of mildly related diseases), and sensationalist terrifying stories of the horrors of chemo.

It is also a great resource for finding support networks, both in-person and over the internet. (Seeing a therapist or joining a support group is so important for both patients _and_ those close to the patients!)

Re: Leukemia Has Won

#44

Post by soy_comptroller »

stickfigure wrote: post #35
jph wrote: post #10

Godspeed. Thank you for sharing your stories. For anyone reading here, one way to donate in general is The Leukemia & Lymphoma Society: https://www.lls.org/ LLS funds blood cancer research, education and patient services. You may know of LLS because of its annual fundraiser event known as “Light the Night” and its fitness initiatives “Team in Training“.

I'd like to add one other important (free!) way you can help: Sign up to be a marrow donor. In the US, here: https://bethematch.org Alex mentioned graft-vs-host disease. When you get a marrow transplant, the better the match, the more likely you are to survive. The bigger the database, the better chance of a good match. Seven years ago I lost a good friend to non-hodgkin's lymphoma. Cancer sucks.

For non-US donors, check out WMDA[1] for information on joining a marrow donor list. Many countries have some sort of donor-sharing agreements. I know someone in California who received a donation from someone in Germany.

[1] https://www.wmda.info/donor/become-a-donor/

Re: Leukemia Has Won

#45

Post by iandanforth »

joshgel wrote: post #15

As a human it makes me so sad to read this post. I hope the rest of his life is meaningful, comfortable and pain-free. As a doctor it makes me so mad. We talk about winning and losing against cancer like its some game or some foe personified. Just because there aren't any more chemo therapy options doesn't mean there aren't treatment options. Just because he'll be home and not in the hospital doesn't mean his doctors…

No. Everything about that article is infuriating. We are fighting an enemy. Again and again we lose. The patient loses, the care team loses, the doctors lose, the family loses, the whole of humanity loses.

You have to believe you can win to continue to fight and you do have to fight quite literally with family, with friends, with yourself. But more generally we as a society have to be able to recognize an enemy and a battle when we see one. To remove, hide, obscure, or soften this language would be an insult to all those who have fought and lost in any capacity against this monster.

We fight, we lose, we die, repeat ... until we don't.

Re: Leukemia Has Won

#46

Post by soy_comptroller »

bemeurer wrote: post #4
libpcap wrote: post #2

Is there a chance of a liver transplant?

The fact that he mentions GvHD would indicate that not to be an option, unfortunately. IANAD.

100% not the same as Alex's sad situation, but for kidneys a dual stem-cell-transplant and kidney-transplant has been done[1]. It was NOT done due to cancer (but due to kidney scarcity) and was NOT done for the liver. I don't think it could ever even be done for the liver because stem-cell-transplant cannot (to the best of my knowledge) be done from a cadaver-donor. Maybe some medical center would be willing to try a living-donor for SCT and partial-liver...but I'm not sure it would get past the ethics committee.

[1] https://clinicaltrials.gov/ct2/show/NCT00319657

Re: Leukemia Has Won

#48

Post by gnulinux »

pvaldes wrote: post #38
libpcap wrote: post #2

Is there a chance of a liver transplant?

Warning! This is not a replacement for medical advice and I could be wrong. This is not my speciality! If I'm understanding correctly seems like Mr. Mills had a marrow transplant, and the white cells in the marrow from the donor had attacked his liver. Chemoterapy is a poison, and liver's work is to deal and be distroyed by poisons, so this does not help. Without donor's white cells, the Leukemia gets worse, but with…

This is a question coming from complete layman. In fact, I'm ashamed to ask such a stupid question. But I'm still curious:

> Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks.

Does this mean it's possible for one to donate liver (say, half a liver) and live like nothing happened (except a scar)? Then why don't everyone donate their liver like this? Why are there only 4000 livers in the US?

Re: Leukemia Has Won

#49

Post by bitexploder »

iandanforth wrote: post #45
joshgel wrote: post #15

As a human it makes me so sad to read this post. I hope the rest of his life is meaningful, comfortable and pain-free. As a doctor it makes me so mad. We talk about winning and losing against cancer like its some game or some foe personified. Just because there aren't any more chemo therapy options doesn't mean there aren't treatment options. Just because he'll be home and not in the hospital doesn't mean his doctors…

No. Everything about that article is infuriating. We are fighting an enemy. Again and again we lose. The patient loses, the care team loses, the doctors lose, the family loses, the whole of humanity loses. You have to believe you can win to continue to fight and you do have to fight quite literally with family, with friends, with yourself. But more generally we as a society have to be able to recognize an enemy and a…

I think, holistically, you are correct. Technology and science should advance. Individually, though, the fight can quite literally be all but over. This is not pessimistic or fatalistic, but very real.

Rage, rage against the dying of the light. We as individuals get to choose what that means, though :)

Re: Leukemia Has Won

#50

Post by soy_comptroller »

gnulinux wrote: post #48
pvaldes wrote: post #38

Earlier quoted context omitted.

Warning! This is not a replacement for medical advice and I could be wrong. This is not my speciality! If I'm understanding correctly seems like Mr. Mills had a marrow transplant, and the white cells in the marrow from the donor had attacked his liver. Chemoterapy is a poison, and liver's work is to deal and be distroyed by poisons, so this does not help. Without donor's white cells, the Leukemia gets worse, but with…

This is a question coming from complete layman. In fact, I'm ashamed to ask such a stupid question. But I'm still curious: > Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks. Does this mean it's possible for one to donate liver (say, half a liver) and live like nothing happened (except a scar)? Then why don't everyone donate their liver like this? Why…

You can donate part of the liver, but it isn't "like nothing ever happened". This followup[1] of donors from 2011 found that 53% suffered long-term complications (though 93% would have gone through with it again). Notably missing from those stats is the percentage of donors who died after donation, either due to direct effects, indirect effects, or totally unrelated things.

Donating one of your two kidneys is maybe a "like nothing happened" experience, but donating a partial liver is much more complicated with worse outcomes.

[1] https://journals.lww.com/annalsofsurgery/Abstract/2011/11000...

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