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I caught the cancer


Burt

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Anyone have Da Vinci single port (SP) robotic surgery?  First surgeon said that’s all he does now. Second surgeon said it was complicated and stayed with multi-port XI system. First MDs recovery times, and complication rates were impressive (if accurate). 


No. UTSW used multi-port.
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22 hours ago, Anton Chigurh said:

I got de-ported today. Let’s hope that mofo doesn’t ever have to go back in.

Congrats, brother! I got my port out a week ago. Apparently the downside of being young was having new tissue growing all over the port and securing it really tightly in there. They had to take some sort of blunt tool to dig it out., giving me a really big bruise. I hope we're done for good! 

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8 minutes ago, Gatorubet said:

Fuck cancer in its goat ass

But see, that's probably how you contract goat ass cancer.

Or windmill cancer.

Or a good goat will do that.

Unless you got the goat ass cancer vaccine.

 

I may have things mixed up.  I'm not a doctor.  But you should still turn your head and cough.

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I just got my CT scan results. The radiologist says that my lungs suck -and I might have some malignancy in my lungs. Which is the same thing every CT scan for eight years has said. My liver is fine, and that’s the only thing I was worried about. He also said it looks like I have a lung infection, which I could’ve told him. Duh!

The report did not say that an old-fashioned would heal my lungs, but I’m pretty sure they meant that. So I’m about to follow doctors orders.

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4 hours ago, Gatorubet said:

Just got done with my semi-annual CT scan and bloodwork checking on the colon cancer progress. My CEA, a cancer marker for my flavor cancer, was 1.7 today. This made me happy, as a couple years ago it was around 15 to 17.   Normal for a non-smoker should be below three. The labs don’t look super crazy, but it says I might have some infectious process going on.  Which makes sense, because I feel like crap, and likely I have an  incipient respiratory infection going on.   No worries.

Assuming the scan does not show anything new about the spots on my liver, I should be good to go for another six months    My Onc says if everything is cool in April 2024, she is discharging me from her care - save an annual blood draw.  Which is great.

Fuck cancer in its goat ass

I'm down to 4.5 on this weeks labs after being at 750 10 months ago. 

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  • 1 month later...
34 minutes ago, RPM said:

I've liked her going back to Garfunkel and Oates. Extremely funny. Hope they got it all.

Oh, damn.  Love her.  I had a high school friend get what I assume is the same thing -- "primary lung cancer".  Non-smoker, just out of the blue.  He's still rockin' 30 years later.

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Maybe I'll lighten up the air with some White People Problems.

We got a bill from Express Scripts, outta the blue, for almost 5 grand. I knew that for more than 2 years I qualified for a grant that gave me Inlyta for free. Free, plus it works, so hey. But Express Scripts quit applying full credit back in September, so now this bill, which we first saw yesterday, has us as 60 days late for a chunk of it.

Near as I can tell, it's about $120/day at my current dose if I have to pay for it. Could be much worse. I can draw an extra $120 of cartoons everyday just by cutting down on games and porn.

So I sent errbody an email, we'll see what's up.

I also tried to call Express Scripts. They shield themselves behind a really clunky phone bot

Hello. What letter does your drug start with?

"An I."

Is that an H?

"NO."

Is that an H?

"Ah-EEE."

Is that an H?

 

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On 12/13/2023 at 3:12 PM, RDCanecutter said:

Maybe I'll lighten up the air with some White People Problems.

We got a bill from Express Scripts, outta the blue, for almost 5 grand. I knew that for more than 2 years I qualified for a grant that gave me Inlyta for free. Free, plus it works, so hey. But Express Scripts quit applying full credit back in September, so now this bill, which we first saw yesterday, has us as 60 days late for a chunk of it.

Near as I can tell, it's about $120/day at my current dose if I have to pay for it. Could be much worse. I can draw an extra $120 of cartoons everyday just by cutting down on games and porn.

So I sent errbody an email, we'll see what's up.

I also tried to call Express Scripts. They shield themselves behind a really clunky phone bot

Hello. What letter does your drug start with?

"An I."

Is that an H?

"NO."

Is that an H?

"Ah-EEE."

Is that an H?

 

IMG_2049.png.86103399da080d15115cbec848e6fa20.png

“I’m thinking….!”

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On 12/12/2023 at 10:54 AM, Not that Bob said:

Even more than the cancer the catheter was my greatest worry...sort of. Anyway, it was my worst nightmare. I'll have to say that it wasn't *that* bad. Pretty low bar from my "worst nightmare", but still not *that* bad.  

So catheter is bad, but not the nightmare I was anticipating. 
 

The real nightmare is taking a dump with a catheter in….  

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  • 4 weeks later...
On 12/12/2023 at 10:54 AM, Not that Bob said:

Even more than the cancer the catheter was my greatest worry...sort of. Anyway, it was my worst nightmare. I'll have to say that it wasn't *that* bad. Pretty low bar from my "worst nightmare", but still not *that* bad.  

After a minor hemorrhoidectomy (which I got from chemo induced constipation) a year ago, I went home and couldn’t pee.  Ended up back at the City of Hope ER and had to get the catheter.  Had to have that fucker for a week.  Lots of fun emptying out your pee bag several times a day.  Do not ever want that again.

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After a minor hemorrhoidectomy (which I got from chemo induced constipation) a year ago, I went home and couldn’t pee.  Ended up back at the City of Hope ER and had to get the catheter.  Had to have that fucker for a week.  Lots of fun emptying out your pee bag several times a day.  Do not ever want that again.

It’s amazing how these two things are at opposite extremes for “things you want to do:”

1 - shove a tube into your dick.
2 - shove your dick into a tube.
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And glad to hear everyone is at the least on the mend.  Have my second set of scans in a month.  Doing good except the immunotherapy induced colitis has been a bit debilitating.  In fact I need to head over to the shart thread for to get my 2024 mark on the board.

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12 hours ago, Sbbruin said:

And glad to hear everyone is at the least on the mend.  Have my second set of scans in a month.  Doing good except the immunotherapy induced colitis has been a bit debilitating.  In fact I need to head over to the shart thread for to get my 2024 mark on the board.

Yep the constant shits do take a bite. There was a stretch back when I was on Keytruda where it took me two weeks to drive to a store 20 miles away. Either I'd be queasy the whole day, or else I'd feel fine, crank up the car, get a mile down the road, then have to flip around and Richard Petty my way home before the shits hit.

Now with just the Inlyta, I get one discrete shit blast, usually between 3 and 5 AM. Wake up "knowing," grab a crossword puzzle, sit down, explosions. Finish puzzle, wipe up, go back to sleep like a a dead vampire opium addict.

Makes it look like I do 100 crunches a day.

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15 hours ago, Brisketexan said:


It’s amazing how these two things are at opposite extremes for “things you want to do:”

1 - shove a tube into your dick.
2 - shove your dick into a tube.

Couple of years ago, due to an enlarged prostate, I reached a point where I could not pee. It isn't really painful, but the discomfort grows as time goes by,  and 5 hours later when the urologist office finally could see me they got me catheterized and collected over a liter of urine (+/- how much spilled in the process)

2 best days of my life that year were, in order:
a) the day I got the catheter in and the pressure relieved
b) the day (about 2 weeks later, after surgery) when I got the catheter removed
I will say that you learn to live with it - I went to work, went to a college football game, somewhat normal life stuff - you just have to remember to empty the bag every time you can.

now back to talking about cancer and not enlarged prostates (which tested negative for the big C) and catheters.

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On 12/10/2023 at 4:11 PM, Stringer said:

Had my bone marrow transplant on 8/1 to hopefully take care of my AML. I spent about 30 days in the hospital, recovering, and then another 70 days in an apartment near the hospital, basically quarantining (even from my kids) and recovering. I was at MDA and my family was in Austin. I had a friend or family member around 24/7 to monitor me.

Got home 11/3 and feeling pretty good. Bloodwork looks fine (a few things here and there) and the 90-day post-transplant marrow test was negative, even at the granular levels the new tests get into. Next marrow test is at 180-days, so hopefully that’s clear. I think that tells more than the 90-day. I’m on a maintenance chemo drug and a handful of others, but otherwise not much to do right now but wait.

Shockingly, my very safe doctor gave me the green light to go to the NC at NRG if we get there, though he did question my sanity that we would make it (his wife is a big Mich fan).

Hope everyone else is getting through.

Hope that's still going well.  My oldest had a bone marrow transplant for AML in Feb '21, with the quarantine and low dose of chemo.  In remission since Feb '23.

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3 hours ago, RDCanecutter said:

Now with just the Inlyta, I get one discrete shit blast, usually between 3 and 5 AM. Wake up "knowing," grab a crossword puzzle, sit down, explosions. Finish puzzle, wipe up, go back to sleep like a a dead vampire opium addict.

IMG_2214.jpeg.8fc76bc1f8acddcc62aa5f8db0280841.jpeg

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2 hours ago, Wally Fairway said:

Couple of years ago, due to an enlarged prostate, I reached a point where I could not pee. It isn't really painful, but the discomfort grows as time goes by,  and 5 hours later when the urologist office finally could see me they got me catheterized and collected over a liter of urine (+/- how much spilled in the process)

2 best days of my life that year were, in order:
a) the day I got the catheter in and the pressure relieved
b) the day (about 2 weeks later, after surgery) when I got the catheter removed
I will say that you learn to live with it - I went to work, went to a college football game, somewhat normal life stuff - you just have to remember to empty the bag every time you can.

now back to talking about cancer and not enlarged prostates (which tested negative for the big C) and catheters.

You couda made some evil "water" balloons.

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Welp, my dad was officially diagnosed with stage 3 Follicular Lymphoma. Doc wants to start treatment next week with a Bendamustine+Rituximab regimen. The oncologist said overall this has a favorable long-term prognosis, but in the immediate term they said the treatments may be pretty rough on him. Although they did also add a disclaimer that different patients respond differently and some don’t have hardly any side effects.
 

Luckily I live pretty close so I’ll be able to check in and keep an eye on him regularly, take him to appointments, etc. Definitely would appreciate any advice y’all would have for caregivers of someone going through chemo.

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GTX, The frustrating thing about chemotherapy is that due to everyone’s individual physical and metabolism situation you can never tell who will have a terrible time with chemo, and who will breeze right through it.  All things considered, my chemotherapy was more annoying than life-threatening.   I actually had enough guilt that I did not ring the bell when I finished it - as there were courageous warriors taking things far more toxic than I was taking and enduring them far worse side effects than I experienced. 

None of the chemo flavors I took were the ones your father is about to take, so I can’t speak to the individual chemotherapy components.    But I think it fair to say if your father has a difficult time with chemotherapy that he is going to need more care than you just regularly checking in on him.  Can you convince him to stay with you while he’s on chemo?

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Don’t just roll with the punches on the chemo, shit itself can kill you. Docs told my dad he’d have a 30% boost of keeping cancer away if he went through chemo after surgery to remove it. So he did it… and it killed his kidneys where he’s been on dialysis 3x week for 4 yrs now. Oh, and the cancer still came back. Not to be a downer but chemo isn’t the end all be all for cancer treatment these days, things are changing (obviously every case is its own thing)

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On 1/10/2024 at 11:45 AM, RDCanecutter said:

Yep the constant shits do take a bite. There was a stretch back when I was on Keytruda where it took me two weeks to drive to a store 20 miles away. Either I'd be queasy the whole day, or else I'd feel fine, crank up the car, get a mile down the road, then have to flip around and Richard Petty my way home before the shits hit.

Now with just the Inlyta, I get one discrete shit blast, usually between 3 and 5 AM. Wake up "knowing," grab a crossword puzzle, sit down, explosions. Finish puzzle, wipe up, go back to sleep like a a dead vampire opium addict.

Makes it look like I do 100 crunches a day.

My stage IV diarrhea was an on-going problem until my onc nurse told me to tell my onc that I wanted…insisted…to take both lomotil AND Imodium at the same time.  God Bless nurses. 

RD, the key was to stomp on it hard with big doses of both of them so it did not get out of control. Once it became a problem, it was harder to fix it.   Good advice.   I was drinking a gallon of pedialyte every day before lunch.   Work bathroom was 15 second trot if I caught the doors right, and I went every 20 minutes.  The hard part about Lomotil is convincing them that you’re not an opium addict.  They hate to refill.  Fortunately, after they cut that hunk of my colon out and they sent me home, I skipped the oxycodone they had given me and just drank scotch.   When I ran out of Lomotil I just took the hoarded oxy. 

Fortunately, my chemo only lasted three months or I’d still be shitting. 

I feel ya brother. 

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10 hours ago, Gatorubet said:

My stage IV diarrhea was an on-going problem until my onc nurse told me to tell my onc that I wanted…insisted…to take both lomotil AND Imodium at the same time.  God Bless nurses. 

RD, the key was to stomp on it hard with big doses of both of them so it did not get out of control. Once it became a problem, it was harder to fix it.   Good advice.   I was drinking a gallon of pedialyte every day before lunch.   Work bathroom was 15 second trot if I caught the doors right, and I went every 20 minutes.  The hard part about Lomotil is convincing them that you’re not an opium addict.  They hate to refill.  Fortunately, after they cut that hunk of my colon out and they sent me home, I skipped the oxycodone they had given me and just drank scotch.   When I ran out of Lomotil I just took the hoarded oxy. 

Fortunately, my chemo only lasted three months or I’d still be shitting. 

I feel ya brother. 

My dung drama varies. If people get Real Colitis as a side effect of my drug, one nurse told me there's a 40% mortality rate. I have never had the real stuff. All I gotta do if the shits become all-consuming is to skip the dose for a day, and everything dries up for a while. That's what happened for 4 days last time I stopped. Now 4 days worth of poo is queued up and started sluicing out yesterday, if I could sell it by the pound I'd never work again.

BUT at least it's not waking me up at night.

I used to treat it with a variety of drugs, which worked 100% of the time 50% of the time, but now I'm all "Let's get it out and done with." The flush toilet is two steps from my studio. Time for a video game break!

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For me it's wild inconsistency swinging back and forth for the week after infusion. Today is apparently a liquid day. Though my butthole is thankful it just sprays out of my belly. 

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On 12/10/2023 at 4:11 PM, Stringer said:

Had my bone marrow transplant on 8/1 to hopefully take care of my AML. I spent about 30 days in the hospital, recovering, and then another 70 days in an apartment near the hospital, basically quarantining (even from my kids) and recovering. I was at MDA and my family was in Austin. I had a friend or family member around 24/7 to monitor me.

Got home 11/3 and feeling pretty good. Bloodwork looks fine (a few things here and there) and the 90-day post-transplant marrow test was negative, even at the granular levels the new tests get into. Next marrow test is at 180-days, so hopefully that’s clear. I think that tells more than the 90-day. I’m on a maintenance chemo drug and a handful of others, but otherwise not much to do right now but wait.

Shockingly, my very safe doctor gave me the green light to go to the NC at NRG if we get there, though he did question my sanity that we would make it (his wife is a big Mich fan).

Hope everyone else is getting through.

Let us know when the test turns out great next week!

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On 1/20/2024 at 8:35 AM, RDCanecutter said:

My dung drama varies. If people get Real Colitis as a side effect of my drug, one nurse told me there's a 40% mortality rate. I have never had the real stuff. All I gotta do if the shits become all-consuming is to skip the dose for a day, and everything dries up for a while. That's what happened for 4 days last time I stopped. Now 4 days worth of poo is queued up and started sluicing out yesterday, if I could sell it by the pound I'd never work again.

BUT at least it's not waking me up at night.

I used to treat it with a variety of drugs, which worked 100% of the time 50% of the time, but now I'm all "Let's get it out and done with." The flush toilet is two steps from my studio. Time for a video game break!

The Opdivo I took completely fucked my ulcerative colitis to hell.  I shit 10-15 times a day sometimes, with a fair amount of blood.  And I'm nauseous regularly too.  Puked up my last 2 meals.  It's gotten to the point now where I'm going off Remicade, which I've been on for almost 20 years, and switching to Rinvoq.  Supposed to be great at dealing with colitis, but we'll see about the ankylosing spondylitis.  It's supposed to treat that as well, but only when TNF blocker like Remicade don't work.  But Remicade has worked great.  And kept the UC at bay for years.  Until it didn't.  We'll see.  It's arriving Tuesday.  Praying for relief.  

I get my 6 month scans on Wednesday.  Crossing my fingers.

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3 minutes ago, Sbbruin said:

The Opdivo I took completely fucked my ulcerative colitis to hell.  I shit 10-15 times a day sometimes, with a fair amount of blood.  And I'm nauseous regularly too.  Puked up my last 2 meals.  It's gotten to the point now where I'm going off Remicade, which I've been on for almost 20 years, and switching to Rinvoq.  Supposed to be great at dealing with colitis, but we'll see about the ankylosing spondylitis.  It's supposed to treat that as well, but only when TNF blocker like Remicade don't work.  But Remicade has worked great.  And kept the UC at bay for years.  Until it didn't.  We'll see.  It's arriving Tuesday.  Praying for relief.  

I get my 6 month scans on Wednesday.  Crossing my fingers.

We're all just trying to get the flak-riddled airplane back to England with three props feathered. Keep that right rudder.

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On 2/2/2024 at 10:37 PM, bluto said:

Down to what we think are the final days/hours with my pops. Been a long damn 6 yr battle that started with sarcoma in his lower leg and progressed/resurfaced multiple times as lung, brain, and bone cancers along with chemo killing off his kidneys. Shoutout to keytruda, yervoy, and opdivo as they gave him an extra ~4 yrs with some of that time being decent quality of life, to call those miracle workers would be an understatement given his condition before and after. But now we’re at the point of hoping his heart gives out soon as the delirium is setting in and he refuses direct stomach feeding (can’t swallow/drink anything). It’s time, but it doesn’t make it any easier. 

Sorry man.  That was essentially the situation with both of my parents. Sucks to have to go through that.  I hope your pops has a gentle passing with no distress. 

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On 2/2/2024 at 10:37 PM, bluto said:

Down to what we think are the final days/hours with my pops. Been a long damn 6 yr battle that started with sarcoma in his lower leg and progressed/resurfaced multiple times as lung, brain, and bone cancers along with chemo killing off his kidneys. Shoutout to keytruda, yervoy, and opdivo as they gave him an extra ~4 yrs with some of that time being decent quality of life, to call those miracle workers would be an understatement given his condition before and after. But now we’re at the point of hoping his heart gives out soon as the delirium is setting in and he refuses direct stomach feeding (can’t swallow/drink anything). It’s time, but it doesn’t make it any easier. 

Definitely wishing you all peace.  And yes, shoutout to Keytruda - bought my mother 2+ years of really good time and quality of life.  She got to live long enough to see both grandkids pretty much launched, and when they're young, those two years can make all the difference.  Really happy that you got 4 years -- that's a blessing, in the mess that is life with cancer.

The end may be easy.  It may be hard.  You and your family will be there, that's important.

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On 2/2/2024 at 8:37 PM, bluto said:

Down to what we think are the final days/hours with my pops. Been a long damn 6 yr battle that started with sarcoma in his lower leg and progressed/resurfaced multiple times as lung, brain, and bone cancers along with chemo killing off his kidneys. Shoutout to keytruda, yervoy, and opdivo as they gave him an extra ~4 yrs with some of that time being decent quality of life, to call those miracle workers would be an understatement given his condition before and after. But now we’re at the point of hoping his heart gives out soon as the delirium is setting in and he refuses direct stomach feeding (can’t swallow/drink anything). It’s time, but it doesn’t make it any easier. 

With my mom we eventually had to cut off her feeding tube so she could pass.  Took 3 weeks after that.  Brutal watching her slowly slip, but the alternative would've been much worse.  Prayers for your dad.

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My mother recently was able to get off the medication she has been taking for five plus years for chronic myeloid leukemia. She will get checked out every three months or so to see if she needs to go back on it. The biggest benefit for her is she no longer has issues with going to the bathroom constantly. It was hard to be able to take her to do things when she would visit New York because of that. Now she can exercise more again and not feel so worn down. I’m happy for her because she should get to enjoy her two grandkids (Brother is raising his family in the same house our parents built for us 40 years ago.) without having to go through all of the extra stuff that medication put her through. When I call to talk to her in the evenings on FaceTime you can see a noticeable difference in her energy level, which is pretty awesome. 

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