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I caught the cancer


Burt

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10 hours ago, Basil said:


Could have, but not for me (although I did have a temp one for a couple of months between surgeries). My butt function is 95% of what it was before cancer. The biggest reason is I skipped radiation as part of a clinical trial called PROSPECT. Radiation fries your insides and can have life-long side effects. Second reason is that the tumor was high enough that they didn’t have to excise the lowest parts, where they surgically reconnect your plumbing. Without those lower parts, it’s a permanent bag.

I have a colostomy right now, they have said it's reversible but no one has given me any idea of what needs to happen first. As much of a pain in the ass it is, it's probably the most manageable part of this whole ordeal. Except emptying in public, god damn does that suck dicks. 

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4 hours ago, Anton Chigurh said:

Damn, bruin.


I have my 4th infusion this week. It’s been pretty shitty and has gotten worse each time. The insomnia has been absolutely horrible. HR is high. BP is high. Lost 15 lbs from not really having much appetite. Legs feel weird and super restless all the time.

However, the mass in my neck is all but gone when I feel around for it. I’m sure the one in my chest has shrunk significantly as well. So, this shit seems to be working I guess.

That’s great to hear on the tumors.  Glad it’s working.

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Need info about treatments for prostate cancer:  my 89 YO father in law's PSA came back super hot.  His doc basically said "your prostate cancer is back and it has surely metastacized."   Eventually, he was able to get in for a full body scan, and sure enough, the cancer was everywhere -- liver, spine, lymph nodes, lungs.

He is taking Lupron injections, and for whatever reason has rejected xtandi.  I am only getting info from my wife and her five siblings, but he is apparently uninterested in dealing with xtandi's side effects.

How big a risk is this to treat with Lupron only?  I don't think anybody is terribly optimistic about his long term prognosis, but it would be nice if he could get rational advice about the tradeoffs, as opposed to listening to his (understandably) emotional kids, none of whom is a medical professional.

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7 hours ago, jimmyjazz said:

Need info about treatments for prostate cancer:  my 89 YO father in law's PSA came back super hot.  His doc basically said "your prostate cancer is back and it has surely metastacized."   Eventually, he was able to get in for a full body scan, and sure enough, the cancer was everywhere -- liver, spine, lymph nodes, lungs.

He is taking Lupron injections, and for whatever reason has rejected xtandi.  I am only getting info from my wife and her five siblings, but he is apparently uninterested in dealing with xtandi's side effects.

How big a risk is this to treat with Lupron only?  I don't think anybody is terribly optimistic about his long term prognosis, but it would be nice if he could get rational advice about the tradeoffs, as opposed to listening to his (understandably) emotional kids, none of whom is a medical professional.

Read this and then let me know what questions you have.

https://www.cancer.gov/news-events/cancer-currents-blog/2019/enzalutamide-apalutamide-metastatic-prostate-cancer

 

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Upside is I've lost almost 40 pounds.  Problem is I really shouldn't lose much more at all, as it will be difficult to add weight ever again just due to quantity restrictions.  Round whatever number of Opdivo immunotherapy tomorrow.  Anyway, that's my latest.
The carrot cake cream cheese smoothie - if it’s not a thing it sure as shit can be.  
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21 hours ago, Anton Chigurh said:

Damn, bruin.


I have my 4th infusion this week. It’s been pretty shitty and has gotten worse each time. The insomnia has been absolutely horrible. HR is high. BP is high. Lost 15 lbs from not really having much appetite. Legs feel weird and super restless all the time.

However, the mass in my neck is all but gone when I feel around for it. I’m sure the one in my chest has shrunk significantly as well. So, this shit seems to be working I guess.

Working is good.  I will see my oncologist this Friday to kick the tires and see if their continual quest to make me a stage four is again foiled.

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2 hours ago, Anton Chigurh said:

No chemo for me today due to further elevated liver enzymes. I’ll take the extra week off, tbh.

I’m sure your enzymes will recover and I’m glad you have a week off chemo.

I would have a break every three weeks and it was deeply appreciated.

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On 4/25/2023 at 5:47 PM, Gatorubet said:

Working is good.  I will see my oncologist this Friday to kick the tires and see if their continual quest to make me a stage four is again foiled.

You're not stage 4? Then what are you doing here in the Officer's Lounge? NCO's Mess is that way.

26 minutes ago, seven said:

The cumulative effects of chemo are starting to show up. I'm so god damn tired all the time. Appetite this week has fallen off a cliff. Scan coming on Wednesday. 

Grind it out, boss.

 

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39 minutes ago, RDCanecutter said:

You're not stage 4? Then what are you doing here in the Officer's Lounge? NCO's Mess is that way.

I got dispensation.  Cancer with no weight loss.  

It’s like having to live with a drug addict stripper with red hair and green hatey-crazy eyes named Tiffany….but you can’t fuck her. 

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12 minutes ago, Gatorubet said:

I got dispensation.  Cancer with no weight loss.  

It’s like having to live with a drug addict stripper with red hair and green hatey-crazy eyes named Tiffany….but you can’t fuck her. 

Oh yeah, Tiffany... she's over at table 8. Pull up a chair.

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20 hours ago, seven said:

The cumulative effects of chemo are starting to show up. I'm so god damn tired all the time. Appetite this week has fallen off a cliff. Scan coming on Wednesday. 

That shit is the worst.  I did taxol and carboplatin, and I felt pretty decent the first couple of weeks.  Then it just started to get worse and worse.  One of the worst things is that foods you absolutely LOVE just sound disgusting when you're going through chemo.  Everything sounds gross.  

The ass-dragging is no fun either.  Hang in there.

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41 minutes ago, Gatorubet said:

So….saw Onc.   She says other than my poor lung CT (reflecting, my crappy decades-long asthma scarring) I’m as normal as could be, and she is ordering the surgical removal of my port since “I will not need chemotherapy anymore”.

She says I need to see her two more times (six month interval) per the standard of care -  and then I will be released from monitoring and no longer her patient  - save maybe yearly CEA blood test and follow up if weird stuff happens. 

Sounds good to me.   She also said >90% of colon cancer reoccurrence will happen the first 4 years post-diagnosis and surgery.   I am one month past four years.  Said my chance of getting colon cancer again was a “single digit”  percentage, and close to that of the general population my age.  

Cool beans. I hate the port.  It refutes that I am done with this shit. Glad to trash can it. 

 

Fuck Yeah Yes GIF

Excellent news gator.  Really stoked for you.  

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That shit is the worst.  I did taxol and carboplatin, and I felt pretty decent the first couple of weeks.  Then it just started to get worse and worse.  One of the worst things is that foods you absolutely LOVE just sound disgusting when you're going through chemo.  Everything sounds gross.  
The ass-dragging is no fun either.  Hang in there.

Yeah. I just….. never wanna eat. Sometimes I drink the high calorie Boost/Ensure shakes just to get calories in me. When I do eat I feel full very quickly too. I wonder if that will carryover, lol.
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On 4/25/2023 at 9:18 AM, jimmyjazz said:

Need info about treatments for prostate cancer:  my 89 YO father in law's PSA came back super hot.  His doc basically said "your prostate cancer is back and it has surely metastacized."   Eventually, he was able to get in for a full body scan, and sure enough, the cancer was everywhere -- liver, spine, lymph nodes, lungs.

He is taking Lupron injections, and for whatever reason has rejected xtandi.  I am only getting info from my wife and her five siblings, but he is apparently uninterested in dealing with xtandi's side effects.

How big a risk is this to treat with Lupron only?  I don't think anybody is terribly optimistic about his long term prognosis, but it would be nice if he could get rational advice about the tradeoffs, as opposed to listening to his (understandably) emotional kids, none of whom is a medical professional.

Nothing to add to your question, and sorry to hear about his news but your post got me thinking. I feel like they are too many stories about people who have previously treated cancer come back with a vengeance but it’s not detected until late. Outside of costs and maybe resource constraints, shouldn’t cancer survivors have frequent scans to detect reoccurrences?  As in, see you in 3 months for an mri or ct. I know that CTs could create cancers but what is the bigger risk? 

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Just now, Gatorubet said:

The Notorious N.E.D.!!!  

Not quite there yet, but the past few scans made my doc think it might be stable. I'm off the infusions right now while we find out whether that's right or not.

I still take the chemo pills that are like calling in artillery on your own position. I take breaks from them on art show weekends so I don't shit myself.

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2 hours ago, Sbbruin said:

That shit is the worst.  I did taxol and carboplatin, and I felt pretty decent the first couple of weeks.  Then it just started to get worse and worse.  One of the worst things is that foods you absolutely LOVE just sound disgusting when you're going through chemo.  Everything sounds gross.  

The ass-dragging is no fun either.  Hang in there.

if you are taking Taxol, you must have a pretty good heart SB.  if you had any cardiac issues you would’ve gotten Taxotere.   Carboplatin is not fun.  I’ve represented hundreds of breast cancer survivors. It is recognized to be an ass kicker.  Plus, all platinum chemo sucks. 

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7 minutes ago, RDCanecutter said:

I still take the chemo pills that are like calling in artillery on your own position. I take breaks from them on art show weekends so I don't shit myself.

My office at work looked like a Pedialyte store.  Grade IV diarrhea is sexy. 

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3 hours ago, Nice Guy Eddie said:

Nothing to add to your question, and sorry to hear about his news but your post got me thinking. I feel like they are too many stories about people who have previously treated cancer come back with a vengeance but it’s not detected until late. Outside of costs and maybe resource constraints, shouldn’t cancer survivors have frequent scans to detect reoccurrences?  As in, see you in 3 months for an mri or ct. 

I'm not exactly sure why his PSA # was such a surprise on the high side, but he lost his wife (my MIL) last summer to Parkinson's disease, and while she lived with it for a couple of decades, the last couple of years were tough.  Being a crusty old bastard (like most 89 YO Texas men), I imagine he didn't go to the doc very regularly.

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Thanks. Glad to hear that you were done in 2017 and no problem since.
I chose not to take folfox (Folinic acid, fluorouracil and oxaliplatin) infusions but to take the pill version Xeloda.  it breaks down in your stomach. Once swallowed, capecitabine (Xeloda) is absorbed through the intestine and is converted to 5’-deoxy-5-fluorouridine (5’-DFUR) in the liver. Finally, the enzyme thymidine phosphorylase converts 5’-DFUR into the active form of 5-FU in both normal and tumor tissue; however, the enzyme is present at higher concentrations within tumor cells.  This allows for greater tumor-targeting specificity, which consequently decreases systemic drug exposure.  So I did take Folfox in a roundabout way.
Because of all that, I only had to take a three month treatment instead of a six month Folfox treatment. There was a very good multinational study about the use of Xeloda, which showed that Xeloda was as effective being used three months as FolFox infusion for six months.   However, FolFox infusion had FIVE times the side effects and nerve damage as Xeloda.   I demanded the pill form over my onc’s objections.  She agreed finally, to her credit.  No Dr. God Complex. 
I took the Oxoliplatin via normal infusion every three weeks. That stuff is/was horrible. 
So happy for you. I look forward to a similar result. 
 

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4 hours ago, Gatorubet said:

Thanks. Glad to hear that you were done in 2017 and no problem since.
I chose not to take folfox (Folinic acid, fluorouracil and oxaliplatin) infusions but to take the pill version Xeloda.  it breaks down in your stomach. Once swallowed, capecitabine (Xeloda) is absorbed through the intestine and is converted to 5’-deoxy-5-fluorouridine (5’-DFUR) in the liver. Finally, the enzyme thymidine phosphorylase converts 5’-DFUR into the active form of 5-FU in both normal and tumor tissue; however, the enzyme is present at higher concentrations within tumor cells.  This allows for greater tumor-targeting specificity, which consequently decreases systemic drug exposure.  So I did take Folfox in a roundabout way.
Because of all that, I only had to take a three month treatment instead of a six month Folfox treatment. There was a very good multinational study about the use of Xeloda, which showed that Xeloda was as effective being used three months as FolFox infusion for six months.   However, FolFox infusion had FIVE times the side effects and nerve damage as Xeloda.   I demanded the pill form over my onc’s objections.  She agreed finally, to her credit.  No Dr. God Complex. 
I took the Oxoliplatin via normal infusion every three weeks. That stuff is/was horrible. 
So happy for you. I look forward to a similar result. 
 

I’ll be damned…..  I never heard of that. I assume it was around in 2016?  
 

My side effects with folfox were neuropathy (the numbness was in my finger tips), and believe it or not, I couldn’t drink anything cold. Everything had to be lukewarm or hot. It was terrible. Cold felt like someone was trying to cut my tongue out.  
 

My mom died of colon cancer in August. Caught it too late.  Diagnosed in July and died in August. It had already spread to spine, liver, lung, and to her skull, so she didn’t have a chance.  69 years old, and one week from her 70th birthday when she died.  

Bless her heart, when I told her Arch Manning committed, she said that was about right, we are about to be good again and I’m going to fucking die.  Never saw a snap after the Alamo bowl. 
 

sorry I’m rambling, I feel like @YGIFS just rambling and reminiscing. 
 

God love ya Gator….  

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26 minutes ago, Etxhorn81 said:

I’ll be damned…..  I never heard of that. I assume it was around in 2016?  
 

My side effects with folfox were neuropathy (the numbness was in my finger tips), and believe it or not, I couldn’t drink anything cold. Everything had to be lukewarm or hot. It was terrible. Cold felt like someone was trying to cut my tongue out.  
 

My mom died of colon cancer in August. Caught it too late.  Diagnosed in July and died in August. It had already spread to spine, liver, lung, and to her skull, so she didn’t have a chance.  69 years old, and one week from her 70th birthday when she died.  

Bless her heart, when I told her Arch Manning committed, she said that was about right, we are about to be good again and I’m going to fucking die.  Never saw a snap after the Alamo bowl. 
 

sorry I’m rambling, I feel like @YGIFS just rambling and reminiscing. 
 

God love ya Gator….  

I was obsessing looking on PubMed in 2019 when I was diagnosed and I saw some of the early study results. That is the only reason why I took the pills. The reaction to cold that you talk about is not from the fluorouracil, but the oxaliplatin.   Touching anything cold was like touching a hot pan.  I wore gloves to get stuff from the fridge.  Plus I got spasms in my jaw whenever I ate and it felt like my throat was closing if I drank anything below room temp.  Good times. 

So sorry to hear about your mom.  When my dad was finally diagnosed with cancer it was everywhere in his body and his fight was short.  Fuck cancer!!!

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7 hours ago, Gatorubet said:

Thanks. Glad to hear that you were done in 2017 and no problem since.
I chose not to take folfox (Folinic acid, fluorouracil and oxaliplatin) infusions but to take the pill version Xeloda.  it breaks down in your stomach. Once swallowed, capecitabine (Xeloda) is absorbed through the intestine and is converted to 5’-deoxy-5-fluorouridine (5’-DFUR) in the liver. Finally, the enzyme thymidine phosphorylase converts 5’-DFUR into the active form of 5-FU in both normal and tumor tissue; however, the enzyme is present at higher concentrations within tumor cells.  This allows for greater tumor-targeting specificity, which consequently decreases systemic drug exposure.  So I did take Folfox in a roundabout way.
Because of all that, I only had to take a three month treatment instead of a six month Folfox treatment. There was a very good multinational study about the use of Xeloda, which showed that Xeloda was as effective being used three months as FolFox infusion for six months.   However, FolFox infusion had FIVE times the side effects and nerve damage as Xeloda.   I demanded the pill form over my onc’s objections.  She agreed finally, to her credit.  No Dr. God Complex. 
I took the Oxoliplatin via normal infusion every three weeks. That stuff is/was horrible. 
So happy for you. I look forward to a similar result. 
 

 

IMG_0776.gif

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It's interesting that you had to fight for the cape, my doctor offered me a choice and the pills sounded a hell of a lot better than the pump. The ox blows, but sounds like upcoming round 7 will probably be my last. 
It makes sense to me now. When I finished my chemo, I told her, “ See you were wrong. I did great on the pills. You should put more patients on them.”  She told me that I was the proof that she’s not going to give it to other patients.  That confused me, then she told me that she knew that I was up on the science and extremely motivated.  She said most people aren’t that engaged in offering their own opinion of their chemo regimen. She pointed out that I had grade four diarrhea and should’ve been in the hospital if I wasn’t such a hardheaded ass.  Then she told me what happens when people have my bad side effects: people don’t tell her, but they quit taking the pills or they take less of the pills because they feel bad.  She told me unless they’re in a chair getting an infusion from a bag that she knows how much the patient is getting, she might be setting them up to not get enough chemotherapy to cure their cancer. Because she can’t monitor home use of the pills she can’t make sure they have the best chance to beat cancer. The only way she can really do a good job is to make sure what goes in the patient. Giving patients the ability to alter her chemo prescription, to her, is a dangerous and uncertain thing.
In retrospect, I think she had that right.
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2 hours ago, Hate said:

Well fuck. I got the new yesterday. Prostate cancer. It still hasn’t sunk in yet and I’m still kind of numb. I’m deciding on which course of treatment to pursue. I was told mine is the the aggressive kind and has not spread to other organs yet, so my prognosis is pretty good. I just have to decide between radiation or surgery. Go get yourselves checked out. This was caught during my annual checkups and thank goodness it was.

I would go with surgery.  As my surgeon said, “If it’s in the trash can it can’t spread later.” 

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Stupid posting on a phone…mine is the non-aggressive kind. My Gleason score was a 3/4 which I serious of course, but it hasn’t spread and isn’t likely to very quickly. I’m leaning surgery right now as well. I’ll have it done at MD Anderson with a surgeon that does pretty much only this kind of surgery. He’d also use robotics which I think reduced the possibility of cutting any “essential” nerves.

Like I said before, I’m still really numb. I’m not in shock because as soon as my blood work came back with his PSA levels I knew where this was heading. Not one person that I am blood related to has ever had cancer and it’s funny because I always said that I would be the first. Well, fuck y’all…I told you so!

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On 4/27/2023 at 8:02 PM, Gatorubet said:

I got dispensation.  Cancer with no weight loss.  

It’s like having to live with a drug addict stripper with red hair and green hatey-crazy eyes named Tiffany….but you can’t fuck her. 

My wife is a redhead named Tiffany. She does let me have sex with her though so this must be two separate women. 

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1 hour ago, Hate said:

Stupid posting on a phone…mine is the non-aggressive kind. My Gleason score was a 3/4 which I serious of course, but it hasn’t spread and isn’t likely to very quickly. I’m leaning surgery right now as well. I’ll have it done at MD Anderson with a surgeon that does pretty much only this kind of surgery. He’d also use robotics which I think reduced the possibility of cutting any “essential” nerves.

Like I said before, I’m still really numb. I’m not in shock because as soon as my blood work came back with his PSA levels I knew where this was heading. Not one person that I am blood related to has ever had cancer and it’s funny because I always said that I would be the first. Well, fuck y’all…I told you so!

Did you get a decipher test to see about its potential to spread quickly? What’s your age? There is a small chance the surgery causes long term urinary, bowel and sexual challenges. There are many treatment options. 
 

https://www.pcf.org/

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I haven’t done anything other than get the results. I’ll call tomorrow and get an appointment at MD Anderson and go from there. From what I understand, I have the slow growing version but cancer was in 5 of the 12 samples they took. I’m not really willing to roll the dice on this spreading to other parts. I’ll either do the surgery or I’ll do the radiation. I do want to talk to someone other than the urologist before I make that decision though.

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