Why There Have Been So Few Posts Lately And I Must Now Vent So Stand By For Language That Will Make Your Hair Stand On End

Because, basically, #FuckCancer is why.

An afflicted family member again rushed to an emergency room that wound up becoming a nine-day hospital stay. And a discharge that I objected to but which happened anyway.

Let me tell you how fucking much I hate hospitals.

Every day, the nurse will change. How can there by any continuity of care when patients are being treated like the Widget Of The Day? All a nurse knows is what the hell they’re reading on their computer screens, as if they were flesh automatons receiving orders to be followed. A goddammed robot can eventually do that shit.

So what happens? I tell Nurse A on Monday something and Nurse B on Tuesday doesn’t know what I said to Nurse A. So what Nurse A knew isn’t known by Nurse B. And so when I tell Nurse B, I have to convince her. Like, just fuck off. Nurses should be fixed to patients. I don’t give a shit if it’s a tag-team of two nurses who alternate days, but there should be consistent care with knowledge that’s carried over from one nurse to the next. I shouldn’t have to go through a series of nurses and educate every goddammed one of them about what’s going on.

And then there are the doctors. All we get to see are the ones who look like fucking teenagers. They too can be replaced by robots. Because all they do is receive a set of inputs from the patient (in this case, a patient who is often incoherent due to Chemo Brain) and report that upstream to a senior doctor or Hospitalist who we never get to see. And it’s often a revolving set of these teenaged doctors and, I swear to god, most of them look alike. And none of them give you a card with their name and photo and what kind of doctor they are, so that you have someone to contact should anything new crop up.

And then — then! — if all this shit is taking place between two different hospitals (and in this case, it has been — again over my objections), well, anyone who understands math is experiencing a head explosion over the different possible combinations of fuckups that can ensue.

As if all of that wasn’t enough frustration, I don’t like the fact that an oncologist follows a set protocol. What this means is that the science has told them “what works best” and they only do that. This is more shit that can eventually be replaced by a goddammed robot. And why not? If there’s no human thinking involved, why not get a goddammed machine and explicitly state that only a set of instructions are being followed?

And why the hell is it that patients who are going to die under these set protocols can’t deviate from them and get whatever the hell cutting-edge therapies science is currently investigating? I mean beyond clinical trials. (And let’s not get me started on those and how few study centers are sometimes available and how they won’t engage your center as a single patient input and how you read about ones that have concluded but where the fuck are the published results two years after the conclusion — but then, there I went going off on them anyway.)

Cancer is a motherfucker.

And what I’m dealing with, with a family member (no, this is not me; if it was me, I wouldn’t be saying shit to anyone about it), is really the motherfucker of motherfuckers.

Stage IV metastatic pancreatic adenocarcinoma.

There, now all of you know.

And no, this is not what killed Steve Jobs. His was a neuroendocrine malignancy. This is an exocrine malignancy and is far, far worse.

Basically, the gold standard treatment protocol is Gemcitabine and Abraxane (and the patient is getting that). (Yes, there’s also Fulfirinox but the patient is unlikely to tolerate the increased toxicity — it’s bad enough as it is.)

What do those two do?

When there’s a vibrant response, all they do is slow down death.

They are palliative. Not curative.

And, you know, fuck that.

I’m not interested in palliative. I want to wipe out this motherfucker of motherfuckers.

And it’s not going to happen by following a goddammed robotic protocol that leads to an inevitable death.

You hit this motherfucker cancer with everything possible. You hit as many targets as possible. You disrupt the shit out of this shit to the point where it can no longer sustain itself, it gives up, and the human body itself clears out the defeated and dead tumor cells at its own rate without — ideally — triggering tumor lysis syndrome.

By now you probably think I’m living in a dream world. The motherfucker of motherfuckers has never been cured, you say. Well neither has glioblastoma. Today there’s some promise with immunotherapy recently shown on the American TV newsmagazine 60 Minutes. But well before that, this guy cured his glioblastoma.

Yeah, do yourself a favor — and you should, because at least in America the stats are that one-in-two men and one-in-three women will develop their own cancer in the course of a lifetime — and watch that video. He was like a one-man-only Dallas Buyers Club to save himself. Imagine having to fight your own cancer and the doctors.

Enough of that shit. I know the FDA has Expanded Access and there are compassionate use waivers. But that route is basically a lottery. You can be worthy as hell but we’re dealing with human beings here and if your petition reaches someone who wants all of humanity to burn down because of a bad commute to the office that day, you’re screwed.

And you know what? I’m accusing everyone in the medical establishment of practicing Dark Medicine. If you think that any of them are prevented from getting the treatments they desire, you’re living on a totally different planet and really should wake up from that dream. Any of them can get what the hell they want when they want it and the hell with the science when their own lives are on the line.

There will be exceptions like Ralph Steinman — but he had to go public because the bizarre irony of his predicament would have come out anyway. But you know what the bitch of that was? He already had a death sentence and he was still refused to combine certain drugs! Dig this:

It was the ultimate experience in personalized medicine,” says Jedd Wolchok, a medical oncologist at Memorial Sloan-Kettering Cancer Center in New York, and one of Steinman’s collaborators. It was never quite as tailored as Steinman would have liked, however. He believed, and others in the field agree, that the vaccines would probably work better if combined with a checkpoint-blockade inhibitor, which allows cancer-suppressed immune responses to ramp back up to full strength. Together, Steinman believed, the therapies would act as a one–two punch. He tried one such inhibitor, ipilimumab, on its own, but never in combination. Investigators, manufacturers and the FDA must all agree to protocols that involve experimental combinations, and Steinman and his team never got the permission they needed.

And then the kicker, after he died they allowed it:

Ipilimumab received FDA approval for melanoma treatment in March, and trials testing it in combination with dendritic-cell vaccines are only just beginning, in melanoma and renal-cell carcinoma.

What the hell kind of insane-asylum have we created where people who are dying are basically told they must die?

And if you think that was my concluding sentence, strap in for even more.

Research papers.

What the hell do I make of something like this:

Similar to hematologic malignancies, in gliomas and chondrosarcomas IDH1 or IDH2 mutations have been linked with altered DNA methylation profiles. However, in gliomas and chondrosarcomas there is no evidence of mutations in TET enzymes. This could potentially be due to the fact that redundant TET enzymes are expressed in glial and chondrosarcoma precursor cells making it difficult to inactivate TET family function by mutation in such cells. Alternatively, other chromatin-modifying α-ketoglutarate dependent dioxygenase enzymes may be inhibited by 2HG in these cells. Although one initial report implicated a broad array enzymes that were affected by 2HG, a later report suggested greater specificity of 2HG for some specific Jumonji C domain histone demethylases. Most recently, it has been reported that the mark most altered with stable, as opposed to transient, expression of IDH mutation is methylation at histone H3 lysine 9 (H3K9)

No, I don’t mean the scientific jargon (I can roll with it). Look at all the waffle words in there — and the entire fucking paper is like that! So what the hell are they even saying if they have to constantly dodge like that?

(That paper was published in 2012. In the three years since, there might have been new developments that nail down one thing or another — but still, how could something that basically looks like a mess of guesswork even get published? Save your damn suppositions for your lab pals and conferences and just publish replicable results.)

And within that paper — yeah, I’m going to pick on it a bit — there are contradictory results presented by research group X versus research group Y. Which makes me bring up the poison of science: Outright fraud.

Imagine fabricating something so plausible that it gets cited in paper after paper.

Now imagine someone like me encountering that result and thinking it’s truth and using it as an argument against a doctor.

Further imagine you’re a low-level lab researcher tasked with replicating the results of that experiment that’s been picked up here there and everywhere and has been blindly accepted as the truth. What the hell happens when you can’t reproduce what was published? You ask, Did I do something wrong? I did it fifteen times! Why doesn’t it work? Am I a moron? How can I go to my superiors and tell them this isn’t working? I’ll be fired for being a moron. Who’s going to believe me that what was published isn’t true?

Finally — yes there will be an end to this — let me scream about the mainstream press hyping things that have been hailed as “breakthroughs” and “cures.”

Bullshit.

I’ve read about things that claim to rip through cancer like a drone strike on a crowd of suspected terrorists. They got my hopes up. I really thought I had possibilities for therapies that would at least lessen the tumor burden (I never held out hope for a total cure, even though you always hope you can strike gold) — but then I encounter actual science and find out, oh no no no, these actually only work sometimes and on some cancers and these are in mice not human beings.

And you know, I’m going to add one more bitch to this.

Fuck your mice models.

What the hell are you even doing with these mice?

And I don’t mean, oh the poor mice who have awful lives.

No.

I mean the mouse environment is not the human being cancer environment.

Look, I understand there are mice that are bred to develop these cancers. But they are not human beings. And they are not the cancer environment of a human being.

If none of you understand what I’m getting at, take some time to watch this video from a pioneer in the field and have your mind blown by cancer that doesn’t spread — it doesn’t spread because of the environment it’s in:

And if you watched that, you also had your mind blown by how a single cell has movement — like an atom. Did you ever even imagine that our cells moved like that? I had no damn idea.

Anyway. I am through here.

#FuckCancer

6 Comments

Filed under Blog Notes, Personal, Video

6 responses to “Why There Have Been So Few Posts Lately And I Must Now Vent So Stand By For Language That Will Make Your Hair Stand On End

  1. vanja

    I lost a family member to Alzheimer.
    I felt helpless.
    But we can fight back!
    https://folding.stanford.edu/

  2. ThomasM

    Have a look at jim humble’s MMS

  3. ThomasM

    There is much more between heaven and earth than we know.
    Try both, school and alternative medicine.
    Its all about energy and the flow of it.

  4. Luke

    I stopped reading halfway … not out of disrespect but out of anger.

    Seems exactly the same everywhere.
    I had a burst appendix exactly 7 years ago. It happened on a Sunday at 9pm, not a good day to go to the hospital here.
    Emergency operation that lasted 3.5 hours instead of the planned 45 minutes.
    Monday at 11am there were 2 nurses that told me to go walk a bit. Needless to say I fell on the ground. They didn’t even read that it was an emergency operation and that it had burst.
    Things became worse in the next 2 days. 3 days later another doctor came in and told me that he found my blood results to be very weird and that I was having cold/warm temps and up to 180 heartbeat. He actually sat down next to my bed and started to ask specific questions on what I felt and happened. He was the only one who actually started thinking in a normal way and not following a specific flowchart.
    My blood samples were sent to 3 different labs. Bingo .. septicaemia … and 3 matches from the lab what could be done.
    Why didn’t the 1st one do anything???
    2 days later after small spectrum antibiotics my blood results were back to normal, but even today I still suffer from what was damaged.
    But I am so thankful that one person with a normal thinking brain actually made a difference.

    • Yep. I’ve since learned that weekends are the absolute worst time to be in a hospital. And further, that people are treated like widgets, not people. Why do they even bother? To collect a paycheck, and nothing more.

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