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I caught the cancer


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On 2/9/2024 at 10:51 AM, RDCanecutter said:

I told her I posted on a football board where there was a cancer section and I'd share this good news. She wants me to tell all y'all fuckers to buck up, eat healthy, take your medicine, and be of good cheer.

Reporting from New Orleans, RD: 

What kind of quack are you going to?

On 2/9/2024 at 10:51 AM, RDCanecutter said:

Now to avoid falling down the stairs.

Also, do you have a cat?

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On 2/9/2024 at 10:51 AM, RDCanecutter said:

Spent the days before my latest scan filled with dread, convinced my luck had run out and I'd be full of goblins. But then I decided, "Fuck cancer, I'm gonna have a good day no matter what cancer wants to do."

Saw the doc this morning, she handed me the report, and summed it up: "This was a GOOD scan." Nothing grew, some lesions even went down a little.

I told her I posted on a football board where there was a cancer section and I'd share this good news. She wants me to tell all y'all fuckers to buck up, eat healthy, take your medicine, and be of good cheer.

Now to avoid falling down the stairs.

This is the baseline for realistic good news. Grats on the good scan buddy. 

 

I'm meeting with radiology, surgery, and liver specialists over the next week to start planning the next course of action. Still have 5 months or so until the current treatment will lose efficacy. 

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Radiology suggests injecting a pellet into my liver to hopefully kill the two large (golf ball+ size) lesions on the left lobe. There are some 1 cm lesions on the other lobe though so it's unclear how those will be handled. Would have to be paired with colon tumor resection (11cm!). Meeting with the surgeon on Monday and liver specialist Wednesday, so we'll see what their thoughts are. 

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Yeah, if it's an immunotherapy drug, it is crazy expensive.  I was on Opdivo and it was $25K per pop, and I was doing it 2x's/month.  Insurance covered it all thankfully.  Had to get off it.  Now on a different drug, Rinvoq, for ulcerative colitis that was triggered by the Opdivo.  That runs $15k per month for just pills.  Shit's crazy yo.

Just got my 6 month scans, and the doc yesterday called to results "ambiguous."  Couple of enlarged lymph nodes and the spot on my liver from before is larger.  But he doesn't seem overly concerned, although he wants to order me a PET scan to be certain.  So we'll see.  Can't let myself worry about it.

One of my oldest friends (first grade) just told me he has a brain tumor.  UCLA thinks it's operable and has a decent outlook, but fuck cancer.  Motherfucker.

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On 2/9/2024 at 11:51 AM, RDCanecutter said:

Spent the days before my latest scan filled with dread, convinced my luck had run out and I'd be full of goblins. But then I decided, "Fuck cancer, I'm gonna have a good day no matter what cancer wants to do."

Saw the doc this morning, she handed me the report, and summed it up: "This was a GOOD scan." Nothing grew, some lesions even went down a little.

I told her I posted on a football board where there was a cancer section and I'd share this good news. She wants me to tell all y'all fuckers to buck up, eat healthy, take your medicine, and be of good cheer.

Now to avoid falling down the stairs.

The pre-scan anxiety is real. My scans are on Tuesday, and  warn people in advance that I’ll get more anxious as we get closer but will be fine. I’m now about eight months into remission. Just one more good set of scans should get more through graduation of business school, then I can come back to Texas. 

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29 minutes ago, Sal said:

The pre-scan anxiety is real. My scans are on Tuesday, and  warn people in advance that I’ll get more anxious as we get closer but will be fine. I’m now about eight months into remission. Just one more good set of scans should get more through graduation of business school, then I can come back to Texas. 

Scanxiety sucks ass and there ain't nothing you can do about it unless you want to pop xanax like candy.  But it's a hell of a day when you get a good report - in my case the glory words were "no evidence of metastatic disease."  Good luck!

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On 2/15/2024 at 3:45 PM, Stringer said:

Thanks for checking in.  Sorry I haven't given any updates.

My 180 day marrow tests came back negative and my engraftment test said 100%, essentially meaning I have all new marrow.  Wild.

It's been really hard to process, mainly because my doctor said that he doesn't really feel we're done until 2 years post-transplant.  He said he's only had one or two come back because of a relapse after 2 years.  That said, all of the current metrics are right where they need to be, so I'm in the best position I could be in.  In general, I feel 100% normal outside of some minor issues here and there.  Just have to wait out another 18 months.  My marrow tests will be every 6 months from here on (assuming no relapse) and I'll see the doctor when I go get them done.  I do have to keep doing blood tests weekly for now here in Austin to make sure my meds aren't causing issues.  I will slowly be able to wean off of those in the future, so looking forward to that.

He does want me on a drug that he thinks helps keep it away, as they have had good results with it on relapses.  My insurance rejected it because they're fucks who know more than the best cancer hospital in the world.  I asked what the out of pocket was and they told me it was $19K.  Per month.  I'm waiting on a response on my appeal, but how is that in any way a properly functioning industry?

Good luck to everyone.  Keep truckin'

TLDR: Best place I can be, but still need to stay vigilant.  Fuck medical costs and insurance companies.

 

sometimes they’ll pull that shit until they get a letter from your lawyer saying we’re about to sue you for bad faith. Then they look around shuffle some papers and go “on second thought looks like you’re covered.”

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On 2/16/2024 at 4:36 PM, Sbbruin said:

Yeah, if it's an immunotherapy drug, it is crazy expensive.  I was on Opdivo and it was $25K per pop, and I was doing it 2x's/month.  Insurance covered it all thankfully.  Had to get off it.  Now on a different drug, Rinvoq, for ulcerative colitis that was triggered by the Opdivo.  That runs $15k per month for just pills.  Shit's crazy yo.

Just got my 6 month scans, and the doc yesterday called to results "ambiguous."  Couple of enlarged lymph nodes and the spot on my liver from before is larger.  But he doesn't seem overly concerned, although he wants to order me a PET scan to be certain.  So we'll see.  Can't let myself worry about it.

One of my oldest friends (first grade) just told me he has a brain tumor.  UCLA thinks it's operable and has a decent outlook, but fuck cancer.  Motherfucker.

When is your Pet SB?

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4 hours ago, Sal said:

The pre-scan anxiety is real. My scans are on Tuesday, and  warn people in advance that I’ll get more anxious as we get closer but will be fine. I’m now about eight months into remission. Just one more good set of scans should get more through graduation of business school, then I can come back to Texas. 

my initial stage 4 diagnosis was five years ago post-surgery in April.  I have an upcoming scan in May.  I was on the every three month scan for three years.  Trust me, it is never not on your mind.

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Well, fuck, hornbri.  Hope the future news is good, and y'all knocked this fucker all the way out, and chemo is just pissing on the ashes, metaphorically.

Later, we'll update this thread to say something about one-armed handies....but not today.  Today is for praising your wife for being a matter-of-fact tough lady, and you're lucky to have her.  But later.  Because this is Surly.

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When she’s healed, would she mind going to Ukraine? Pretty sure she could have this thing over within a week.

She sounds like she has exactly the mindset you need to kick cancer in its worthless taint.   

Given the issue of metastasis, have they ever told you to do a pet scan? If not, (or, I forgot what you set up thread) that might not be a bad idea.

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1 hour ago, hornbri said:

In post op she was sharing beauty tips with the nurses and commented she even figured out a way to get half off her manicures. 

Sounds like you are lucky to know her. I hope y'all get the most boring scans in the history of scans.

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2 hours ago, hornbri said:

In post op she was sharing beauty tips with the nurses and commented she even figured out a way to get half off her manicures. 

Holy shit.  Now THAT'S an attitude.

It reminds me of a friend in college who had to have his arm amputated because the docs didn't handle setting it in a cast correctly after he broke it.  He sued, and won.  Showed up one day in a brand new car.  

Us:  "Holy shit Troy, that's a beautiful ride.  How much did it cost?"

Troy:  "An arm and a leg, but I got a discount."

 

Kudos to your wife, she sounds like a total badass.

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  • 3 weeks later...
6 minutes ago, RDCanecutter said:

Anyway, the good stuff is I get to meet the doctor who runs the Gamma Knife, where they strap me into a Star Wars headset and they zap me with a tiny precise bolt of radiation, then I leave the office and eat some biscuits and gravy. 

The technology part of all this is pretty cool. Hope it goes well. 

Wife started Chemo today, we did do a PET scan right before chemo to make sure their is nothing else (after the Bone and CT scan) and it saw one little enraged lymph node and a couple small nodules in in gut. Nothing to stop the current plan, just stuff to watch. Which was a good update at last. 

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15 minutes ago, hornbri said:

The technology part of all this is pretty cool. Hope it goes well. 

Wife started Chemo today, we did do a PET scan right before chemo to make sure their is nothing else (after the Bone and CT scan) and it saw one little enraged lymph node and a couple small nodules in in gut. Nothing to stop the current plan, just stuff to watch. Which was a good update at last. 

My mindset is that the price of being alive after a cancer diagnosis is to occasionally have something pop up, then have the nice doctors play whack-a-mole with it. Otherwise, just eat lots of salmon and broccoli, enjoy walks around the neighborhood. 

PS: My PET scan way back when, they had me relax in the waiting room in my personal room lying back in a recliner while they played music and showed me videos of flowers. A tad too close to Soylent Green, but it amused me.

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2 hours ago, RDCanecutter said:

. But we who are about to receive super powers must be patient with our fellow Earthlings.

After the treatment I get to keep my bespoke mask. When Day of the Dead comes around, if I am not actually dead, I plan to paint it up like some Pre-Hispanic Death God maybe with some big green feathers sprouting in a circle off the rim where they bolted it to the back half.

You know with between this, the super hero/villain mask and the solar eclipse….I feel an origin story coming together. 

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14 hours ago, jimmyjazz said:

Damn, man, I gotta say I admire your attitude.  I hope I'm in a similar mindset when it's my turn.

Extra credit for the nurse "getting the yips".  Bernhard says "hey".

image.png.df11966c30f947440457d88b3aa20655.png

 

Well, the first time I saw a CT with a massive tumor in it, I felt like I had been doused in ice water and went home and prepared for an early death.

Then they popped it out, and my Inner Viking started to come out as I recovered quickly with clean margins. I showed up way early to get the staples popped out, just sort of being sassy after being terrified.

Then two years later I got doused with mental ice water again when it turned out that a few stray tumor cells had fled to Argentina (chest and neck) before the fall of the Tumor Third Reich. I figured I was getting eaten up like an old shed full of termites.

Except that Immunotherapy worked, well. Eat right, mild exercise, Inner Viking grows more.

So when it turned out recently that some cells had passed the blood/brain barrier who knows when, I wasn't HAPPY, but no ice water either. Just time to go to work. A pleasant by-product of waiting til now to have brain tumors is they can treat them with less gore than getting a crown on a tooth.

After zapping I'll probably get put on another immunotherapy course for a while to exterminate any unseen zingers lurking in other parts of the grey matter. I'll draw cartoons and joke with nurses.

It's not so much being brave as it is adjusting to something ordinary. It helps that the tech and the chemicals are interesting.

But I did flaunt my Inner Viking yesterday when the nurse offered to arrange a van to pick me up for treatment. I said, "One day, will come the day that I need the van. But that day, is not THIS day."

I mean, fuck it.

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On 2/15/2024 at 3:45 PM, Stringer said:

Thanks for checking in.  Sorry I haven't given any updates.

My 180 day marrow tests came back negative and my engraftment test said 100%, essentially meaning I have all new marrow.  Wild.

It's been really hard to process, mainly because my doctor said that he doesn't really feel we're done until 2 years post-transplant.  He said he's only had one or two come back because of a relapse after 2 years.  That said, all of the current metrics are right where they need to be, so I'm in the best position I could be in.  In general, I feel 100% normal outside of some minor issues here and there.  Just have to wait out another 18 months.  My marrow tests will be every 6 months from here on (assuming no relapse) and I'll see the doctor when I go get them done.  I do have to keep doing blood tests weekly for now here in Austin to make sure my meds aren't causing issues.  I will slowly be able to wean off of those in the future, so looking forward to that.

He does want me on a drug that he thinks helps keep it away, as they have had good results with it on relapses.  My insurance rejected it because they're fucks who know more than the best cancer hospital in the world.  I asked what the out of pocket was and they told me it was $19K.  Per month.  I'm waiting on a response on my appeal, but how is that in any way a properly functioning industry?

Good luck to everyone.  Keep truckin'

TLDR: Best place I can be, but still need to stay vigilant.  Fuck medical costs and insurance companies.

 

Every single client I’ve had in my life who wound up with a bunch of money- or at least more money than they had before they saw me- had insurance company saying blah blah blah no.

I’ve had lots of defense attorneys tell me that the insurance policy and question did not pay for what I was suing them for.  and yet they wrote checks from that insurance company.

Maybe they are right, but maybe they are saying no because they want to save money, not because you don’t have a right to it.   Run it by an attorney who is experienced in dealing with healthcare insurance and see what they say. If they are not paying, for your drug there is really nothing to lose. if they are acting in bad faith, you could likely get a lawyer to take your case on a contingency basis, so it will not cost you a dime.

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On 2/16/2024 at 4:36 PM, Sbbruin said:

Yeah, if it's an immunotherapy drug, it is crazy expensive.  I was on Opdivo and it was $25K per pop, and I was doing it 2x's/month.  Insurance covered it all thankfully.  Had to get off it.  Now on a different drug, Rinvoq, for ulcerative colitis that was triggered by the Opdivo.  That runs $15k per month for just pills.  Shit's crazy yo.

Just got my 6 month scans, and the doc yesterday called to results "ambiguous."  Couple of enlarged lymph nodes and the spot on my liver from before is larger.  But he doesn't seem overly concerned, although he wants to order me a PET scan to be certain.  So we'll see.  Can't let myself worry about it.

One of my oldest friends (first grade) just told me he has a brain tumor.  UCLA thinks it's operable and has a decent outlook, but fuck cancer.  Motherfucker.

My wife looked up the retail price of the 15mg maintenance dose of Rinvoq. It’s $180 a pill. Epocrates doesn’t give the price of the typical 45mg starter dose, but that might be what you’re talking about. I don’t have a subscription to Epocrates, so no linky.

My daughter has UC, and she just went on Rinvoq.

Screenshot-2024-03-28-at-10-29-29-AM.jpg

 

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45 minutes ago, ImissWallyPryor said:

My wife looked up the retail price of the 15mg maintenance dose of Rinvoq. It’s $180 a pill. Epocrates doesn’t give the price of the typical 45mg starter dose, but that might be what you’re talking about. I don’t have a subscription to Epocrates, so no linky.

My daughter has UC, and she just went on Rinvoq.

Screenshot-2024-03-28-at-10-29-29-AM.jpg

 

I'm on 45mg, so I think my EOB said $15K.  But my next batch will be scaled down to 15mg.  

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We found out that a  lot of the drug prices are imaginary retail prices-- I mean, they're pretty damn real when you're paying them-- but there is usually some way to get it knocked way down.

We aren't rich but we save enough that we never had to skip a treatment for sake of money. But a lot of people who maybe don't know how to get the inside info are fuuuucked.

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