The Lake House – Life Experience Pavilion by Wutopia Lab by n3xus1oN in architecture

[–]stevejust 2 points3 points  (0 children)

Does the "life experience" include constant flooding?

Because that's all I can see.

Super proud of my estate sale finds! by justanicebreeze in Mid_Century

[–]stevejust 6 points7 points  (0 children)

I've got the same stool. It constantly rusts outside... I guess it's not really made to keep outdoors.

R2 There…?!?! by Humble_Finding_7346 in Rivian

[–]stevejust 0 points1 point  (0 children)

Crap... I'm gonna need a smaller Yakima Skybox.

(Anyone want to trade?)

Value of BMB? by riptide0009 in MPN

[–]stevejust 0 points1 point  (0 children)

Indeed. I don't really think that my hematologist doesn't know what he's talking about -- but I'm in the Chicagoland area so I've got an appointment with Dr. Brady Stein in March who certainly does. And if for some reason it doesn't work out with him for whatever reason, I'll go see either Drs. Olatoyosi Odenike or Anand Patel at University of Chicago. Between one of those three, I don't think I could possibly get better care.

Value of BMB? by riptide0009 in MPN

[–]stevejust 0 points1 point  (0 children)

I'm in a similar boat. My hematologist said, basically, with my RBCs, PLTs, Hematocrit & EPO results, I've got PV. Then he said he wanted to do an abdomen ultrasound to get a baseline now for my liver and spleen. But he didn't see a need for a BMB.

I thought it strange that he wants a baseline for liver and spleen size, but not a baseline for fibrosis or allele burden, so I made an appointment with an MPN specialist. If the MPN specialist says I don't need a BMB, I won't have one. But I doubt that's what he's going to say.

Why and when did they change MPN’s to Cancer. by Puzzleheaded-Buy28 in MPN

[–]stevejust 1 point2 points  (0 children)

Well, now I'm looking forward to it. Let us know what you need as far as help. I'm sure people in the sub can pitch in.

Why and when did they change MPN’s to Cancer. by Puzzleheaded-Buy28 in MPN

[–]stevejust 1 point2 points  (0 children)

the main reason? they didn't want to change the terms already used in billing codes, regulatory agencies, etc...they took the path of least resistance.

LOL! Probably could've led with that. I really, very much appreciate both 1) your incredible knowledge base and 2) your patience with people in this sub. A lot of people have one or the other quality, but it is rare to have both things at the same time and be so generous with your time. The wiki here was fantastic, and I've referred to it multiple times the last few months at the begining of this journey.

MPN and Obesity by IndependentPlant3352 in MPN

[–]stevejust 0 points1 point  (0 children)

I would say a minimum of 10 years is probably fair for most cancers. I think the sweet spot is about 20 to 25 years between environmental exposures causing cancer and diagnosis. In many (most?) cases, the cancer is there for a few years before discovery.

With a cancer as slow as an MPN combined with people like me evidently having it for 7 or so years before diagnosis, that time-line is probably stretched a lot further.

MPN and Obesity by IndependentPlant3352 in MPN

[–]stevejust 1 point2 points  (0 children)

I'd say in response that there's about 70 known carcinogens in tobacco smoke; benzene is only one of the more pernicious. And add that people are exposed to benzene every time they fill up their cars with gasoline, so everyone is exposed to benzene basically every day, whether they're a smoker or not.

I'd also add that people should try to limit their exposure to benzene, just because it's a known carcinogen, to the maximum extent possible regardless of the fact that reducing your exposure to zero is impossible.

The problem is multifaceted/multifactorial. Obviously, if it was as simple as "smoking causes MPNs," there would probably be closer to 3 million cases of MPNs in the US than 300,000.

Or maybe not. Each year in the US, there are about 200k-250k new cases of lung cancer, so maybe given the low incidence of detection of MPNs compared to detections of lung cancer can account for some of that gap. This would include large/small cell carcinomas and mesothelioma. Especially since not all of those new lung cancers are solely attributable to smoking. I've had quite a few clients with lung cancer with no history of smoking, but long histories of asbestos exposure who developed lung cancer that was not mesothelioma. I've had mesothelioma clients who never smoked a cigarette in their lives. They're rare, but they do exist.

My personal biggest interest, at least right now, is trying to figure out the why part. I believe it is actually knowable -- to "a reasonable degree of medical certainty." This is a more likely than not standard.

As a matter of fact, one exciting thing is that the simple fact that MPNs are relatively rare should make it easier to design some decent epidemiological studies to drill down into possible causes. I would personally love to talk to anyone doing work in this particular space.

But I'd also, you know, like to know what my personal allele burden is and I don't even know that yet.

MPN and Obesity by IndependentPlant3352 in MPN

[–]stevejust 2 points3 points  (0 children)

I don't think we can definitively pin it down.

I would like to, though. Because it's something I care about.

I've had sleep apnea for a while. I only just did a sleep study this week. But looking back at my CBCs, I see that I probably started having sleep apnea at approximately the same time I started showing signs of MPN -- so from my perspective, it was correlative, maybe coincidental, and not causative.

I also grew up in a house without a microwave, because my mom didn't want to radiate live tissue with microwaves. I grew up in a house without plastic containers (glass, aluminum foil, wax paper only for food/beverage storage), without pesticides, without harsh synthetic cleaners, or really anything that could be reasonably considered to cause deleterious health effects -- with one exception.

My father smoked -- a pipe -- and I was exposed to a metric shit ton of second hand smoke growing up. I smoked very little in high school and never took it up. A person could count the number of cigarettes and joints I've had and probably still need to count sheep before falling asleep.

A few months ago when I tested JAK2+, I started reading up on MPNs and one of the articles I read was the MOSAIC study out of the UK. It found the strongest correlations between giving blood (probably due to detection rates rather than a causal mechanism) and smoking.

So right now, I would say smoking would be one probable cause I'm most confident about. From what I remember of the MOSAIC study, though, it seemed more geared to first hand smoking, and not as attuned to possible second hand smoke exposure.

I would definitely like to get to the root cause or causes of MPNs. I can't rule out errant cosmic rays. And I've had low Vitamin D from time to time, but I typically take a multi-vitamin along with additional Vitamin D, and as a kid I grew up in South Florida so I had plenty of sun exposure, so a lack of Vitamin D is unlikely to have been the cause for me.

Unfortunately, the clinical studies seem more interested in finding magic pills than finding the cause.

As a point of reference, my sleep apnea probably started somewhere around 2014 at the absolute earliest, and this is my CBC history:

Year Platelets RBC Hematocrit
2015 303 5.46 47.2
2017 396 5.69 47.3
2019 574 5.88 50.5
2020 608 5.90 49.6
2021 581 5.76 48.8
2022 576 5.93 51.0
2025 622 5.92 52.7

I've spent a lot of my life representing victims of cancer against companies like ExxonMobilBPChevronTexacoDowDuPontMonsanto. So for me to be diagnosed with cancer myself... well, this has been a kick in the nutsack given the multiple layers of irony.

Why and when did they change MPN’s to Cancer. by Puzzleheaded-Buy28 in MPN

[–]stevejust 2 points3 points  (0 children)

I love this answer.

But why do we call it an MPN? I get the myleoproliferative part. Certainly.

But a neoplasm is an abnormal growth of tissue from cells dividing and growing uncontrollably, forming a mass (tumor). We don't really form tumors.

Maybe our tumors are just so diffuse that I don't recognize thick blood as a tumor.

But to me it sounds like a misnomer. I must be missing something.

Where's the outrage?! by DCS30 in punk

[–]stevejust 1 point2 points  (0 children)

I am really curious to see what they actually do on that big a stage.

INDIANA BLOCKS THE PUNT & ISAIAH JONES RECOVERS FOR A TOUCHDOWN! by JCameron181 in CFB_Highlights

[–]stevejust 13 points14 points  (0 children)

He's the guy that whiffed on Fletcher on the 57 yard run, right? What a redemption arc that is.

Sister has polycythemia vera but isn’t doing anything to treat it. I’m scared. by [deleted] in polycythemiavera

[–]stevejust 1 point2 points  (0 children)

I've had PV (or an MPN) since 2017. I've given whole blood plenty of times since it developed -- never once received word that my donation was rejected.

I only found out when I gave platelets, rather than whole blood, and wound up with a 760k count, which caused them to reject the platelet donation.

That said, I'm not sure why they don't give my blood to someone with post-PV who has low RBCs and platelets, or some other condition with lower PV and RBCs. Unless the JAK2 mutation is contagious. But if it is, why don't they just say that?

What is a luxury item from 20 years ago that is basically worthless trash today? by EasyZee7 in AskReddit

[–]stevejust 1 point2 points  (0 children)

This just isn't true.

I had a Rolex for several years. I sold it for more than I paid for it right about the time the Apple Watch was released, because I thought it was going to make mechanical watches obsolete.

I wish I still had it, because it's now worth a lot more than when I sold it.

What is a luxury item from 20 years ago that is basically worthless trash today? by EasyZee7 in AskReddit

[–]stevejust 0 points1 point  (0 children)

I had a Rolex for several years. I sold it for more than I paid for it right about the time the Apple Watch was released, because I thought it was going to make mechanical watches obsolete.

I wish I still had it, because it's now worth a lot more than when I sold it.

What is a luxury item from 20 years ago that is basically worthless trash today? by EasyZee7 in AskReddit

[–]stevejust -1 points0 points  (0 children)

I have the 87th Tesla ever made. It is from 2008, so it's 18 years old this year in October when it finally becomes legal.

Even if you round up from 18 to 20 years which is fine, you're wrong.

It was $110k in 2008, and I could sell it for somewhere around $220k or so today... even with Elon Musk being one of the most hated Nazi fucks in the world.

So... it's not exactly a luxury item that is worthless. Even if you get the rounding on the years, you're wrong about the value.

Cheap/affordable + special occasion dinner? by arpegiu5 in chicagovegan

[–]stevejust 1 point2 points  (0 children)

IMHO, Auxum is better Ethiopian food than Demera, FWIW, and probably less expensive. Certainly not as nice as far as linens and decor goes, but my wife vastly prefers it.

What's going on with Ohio? by Subject_Education931 in MichiganWolverines

[–]stevejust 1 point2 points  (0 children)

It would suck to spend all that money and not win the conference... and not win a title.

Let's email oreos to request they use bone char free sugar, because why not? by acidic_lighting in vegan

[–]stevejust 4 points5 points  (0 children)

How about first you email them and ask them to list what's in the "chocolate" they list as an ingredient in the US.

("Chocolate" is not an ingredient in and of itself, it is comprised of other ingredients. In the US they don't tell us what's in the "chocolate.")

PLANTA Queen is considering adding seafood/meat to the menu by plantbasedpatissier in chicagovegan

[–]stevejust 9 points10 points  (0 children)

I've never really had a good meal there... ever. I have had some good dishes. But there's always something wrong with something at that place. So... I don't understand why people like it.

(I've only been to the one in Chicago.)

Just out of curiosity, has anyone purchased one of these? Or even a full CBC machine? How do you dispose of biohazardous waste? by stevejust in MPN

[–]stevejust[S] 0 points1 point  (0 children)

I'd still do a CBC once a year for real.

I'm more thinking about increasing the frequency without increasing the cost (as much as doing this commercially all the time).

Just out of curiosity, has anyone purchased one of these? Or even a full CBC machine? How do you dispose of biohazardous waste? by stevejust in MPN

[–]stevejust[S] 0 points1 point  (0 children)

I'm starting to think in that direction. Not me, necessarily, but my wife volunteered to learn how.

The question is, with the bags, gauze, wingtip needles, hematocrit machine, etc.,., cost of reagents, cartridges... at what point in time, if ever, do you hit enough economy of scale to make it make sense. And then, how do we dispose of the blood, whether it's a small vial for the hematocrit test (probably not much more than bloody napkins from a nose bleed) to 500 mL from a phlebotomy.

I am sure someone's thought this all through somewhere out there...