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Leukemia Has Won

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Re: Leukemia Has Won

#131

Post by agent008t »

oh_sigh wrote: post #97
darod wrote: post #59

From someone who's been dealing with cancer for the last 6 years, I hate when people compare it to a fight/war/battle with winners and losers. What exactly am I fighting? My cells? How exactly am I going to war? by sitting in a chair eating a sandwich while getting a chemo infusion? In my mind, this was always just a disease to manage. Being diagnosed at 33 with no family history or no genetic markers the only thing…

What were your symptoms? How were you originally diagnosed?

This. What is the "correct" course of action to have it diagnosed early / maximize odds of survival?

Re: Leukemia Has Won

#132

Post by looperhacks »

JanSt wrote: post #119

There is something you can do to help people with leukemia: register as a stem cell donor. Germany has a very strong system with 71.000 stem cell or bone marrow donations per year while there are only 11.000 cases of leukemia in Germany - most go to the rest of the world. There are 5.7 million registered donors[1] (total population is around 80 million). [1] https://de.wikipedia.org/wiki/DKMS

This. Registering is very easy, at least in Germany. I did it because I stumbled upon an event that did a mass registration, but you can also request a kit that contains everything you need to register. Just send the cotton swab (?) back, it's easy and no pain involved. Please look up whether there's an organization near you that offers services like this.

Re: Leukemia Has Won

#133

Post by pvaldes »

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…

> it's possible for one to donate liver (say, half a liver) and live like nothing happened (except a scar)

There is a risk to manage, but is possible, yes. (Liver regenerates itself, so maybe even without leaving a scar. I'm unsure about that).

> Why only 4000 livers...

Probably a bottleneck and main factor is the money and finding somebody with experience that would want to do it. Is not a trivial procedure and there is also a risk for surgeons to be sued if things go down.

The technique is relatively new, starting at 1989 with Alyssa Riggan, a toddler girl 21 months old from Texas that is still alive and living a normal life currently. The donor was her 29yo mum. The technique has being adopted regularly since 2014 (if I'm not wrong). More than 4000 patients had received such treatment in USA since them. Ms. Riggan has a normal life now and does not even need her anti-rejection medecines anymore. The survival rate in adult patients at 3 years is > 95%, and 100% in children patients.

For the donor, will feel some pain (that can be alleviated with medication) and will feel very tired for the first month. Around half liver of the donor is taken. Most regeneration will happen in the first 2 weeks.

https://www.webmd.com/hepatitis/features/living-donor-liver-...

After Mayo Clinic [1] two months are enough to recuperate the liver in the donor. Other hospitals talk about one month.

[1] I can't find an english page to cite, is automatically translated to spanish in my case, but shouldn't be a problem for most adults: https://www.mayoclinic.org/es-es/departments-centers/transpl...

Having cancer, Mr. Mills would be elected [2] to receive the liver of a dead people instead a live donor, unless a relative or a friend would agree to donate him part of their liver.

[2] I'm not expert in your health system, Just guessing that he has a low score in the list.

http://columbiasurgery.org/liver/living-donor-liver-transpla...

Re: Leukemia Has Won

#134

Post by trhway »

Gatsky wrote: post #113
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…

As a medical oncologist[1], your paragraph and that paternalistic and annoying article you cited makes me mad. The outrage with 'our language around cancer' is a recent phenomenon, and I think it is actually not that important and even harmful. What you are proposing is to homogenise how patients cope with cancer, assuming that one way of dealing with it is qualitatively better than another. This 'one way' is a kind…

>Who are we to tell them that they aren't thinking about things the right way?

you're an oncologist. Would it be an unreasonable expectation that you have observed/learned a correlation, if any, between patient outcomes and the various ways of thinking the patients practiced, and thus that you may have an idea what is the "right way" and what isn't?

Re: Leukemia Has Won

#135

Post by baxtr »

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…

I don’t really get it. Of course he is losing something. His life. I lost my mum last year because of cancer. I don’t get why it’s a bad thing to fight for something you dearly love. Your life. What else you got?

Re: Leukemia Has Won

#136

Post by indalo »

komali2 wrote: post #115
otabdeveloper2 wrote: post #103

Earlier quoted context omitted.

> I'm incapable of understanding the mindset the man is in - total awareness of impending death. Seriously? Every human being on Earth over a toddler's age is totally aware of impending death. To date nobody has ever lived forever. The only question, for every human being, cancer or no, is how many years you get before you eventually die. Modern man just makes my head shake in disbelief sometimes...

What feelings would you expect, or prefer, me to feel in reaction to your comment?

Robot says feelings are for fleshy humans

Re: Leukemia Has Won

#137

Post by V-2 »

waynecochran wrote: post #63
schoen wrote: post #57

Earlier quoted context omitted.

My stepmother died of cancer last year and asked that her obituary refer to her "long negotiation with cancer" instead of "long battle with cancer", I think because she also disliked the "battle" and "struggle" notion for similar reasons.

Perhaps calling it a “battle” or naming cancer the “enemy” gives some a cathartic way to cope with it. Gives one energy so to speak. My parents died of cancer and I have lost several friends to it, and none of them used this terminology, but I imagine I will if it comes to it.

I get this, by why only cancer? There are other generally lethal (though treatable) diseases in the world. Yet you typically don't get to hear about somebody's, say, "battle with diabetes", or "battle with AIDS".

Re: Leukemia Has Won

#139

Post by simias »

komali2 wrote: post #115
otabdeveloper2 wrote: post #103

Earlier quoted context omitted.

> I'm incapable of understanding the mindset the man is in - total awareness of impending death. Seriously? Every human being on Earth over a toddler's age is totally aware of impending death. To date nobody has ever lived forever. The only question, for every human being, cancer or no, is how many years you get before you eventually die. Modern man just makes my head shake in disbelief sometimes...

What feelings would you expect, or prefer, me to feel in reaction to your comment?

That's a great reply, I think the internet would be a better place if people (myself included) asked themselves this very question before posting a comment online.

Re: Leukemia Has Won

#140

Post by apatters »

Gatsky wrote: post #113
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…

As a medical oncologist[1], your paragraph and that paternalistic and annoying article you cited makes me mad. The outrage with 'our language around cancer' is a recent phenomenon, and I think it is actually not that important and even harmful. What you are proposing is to homogenise how patients cope with cancer, assuming that one way of dealing with it is qualitatively better than another. This 'one way' is a kind…

If I was ever diagnosed with cancer, I would fully expect to fight a hard battle which I might win or I might lose. Obviously the odds will be different depending on the type and stage of the cancer, but I don't believe for one second that individual choices will always have zero impact on the outcome.

I wouldn't want anyone preparing me to die. If I die so be it but I agree that paternalistic is the appropriate word here.

(As a side note, why don't we talk about things like a person's battle with heart disease? Poor cardiovascular health can be improved. It is hard but it can be done. Sounds like a battle to me.)

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