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Posted
14 minutes ago, RDCanecutter said:

The drug is gonna work.

From what I heard second hand the doctors were not freaking out with enjoy your life while you can statements so it seems stage 4 cancer isn’t a death sentence anymore and they were confident in the drug’s efficacy they did say “if it works” though. But yeah my wife was optimistic. 

still she’s got to be zero estrogen for life so there’s complication with that plus the drug. Good news is most common side effects are some but not extreme fatigue and some GI irritation. Could be a lot worse. We think the estrogen side effects will be the hardest actually - bone loss being the top one. 

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Posted

Yep. During my Stage 4 "talk" Doc told me how she plans drug treatments, tldr it's entirely possible to live a very long happy life if A, B, and C, just like your odds if you didn't have cancer.

My Mom commented a few years ago that my odds of long life may actually be better WITH cancer because I wasn't being careful at all before.

But I mean, it's all the blink of an eye when said and done. You just dwell on the good days, and enjoy them. Who the hell wants to hang around for 200 years anyway.

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Posted (edited)
25 minutes ago, RDCanecutter said:

, tldr it's entirely possible to live a very long happy life if A, B, and C, just like your odds if you didn't have cancer.

My Mom commented a few years ago that my odds of long life may actually be better WITH cancer because I wasn't being careful at all before.

I have a 20 year term policy that ended about two years ago.   I started looking for replacement term insurance as a cancer survivor, and was told all the blah blah blah about increased premiums, reduced benefits, an add-on “you had cancer once”  penalty etc.

I tend to wander through PubMed from time to time, looking at the latest stuff on colon cancer, especially return of colon cancer, and I see that someone who is my sex and age who has never had cancer would have a 3% chance of contracting it in their lifetime.   I found a couple of long term studies that showed a breakdown of colon cancer returning by a lot of categories. On the age and sex category, the chance of that same person my age and sex having colon cancer again is between 1 and 2%. 

So even though the underwriting shows less of a risk for me than if I had never had cancer, insurance company gonna charge me with a cancer premium penalty multiplier that is untethered from medical and actuarial evidence.  Capitalism and all.

But returning to the point I was trying to make, the fact that I now pound vitamin C, D and E, watch my diet and exercise more -and get numerous bloodwork and scans and colonoscopies - undoubtedly makes the reoccurrence (or at least a fatal reoccurrence) less likely then some dude my age walking down the street who never had cancer. 

That and medical marijuana are a couple good things that came from me getting cancer I guess. And maybe one other. My ex-wife is rumored to have said about my cancer diagnosis:  “Ubet always infuriated me with his risktaking and never worrying about anything…this is only gonna make that worse”.    She was right.

Edited by Gatorubet
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Posted
On 12/6/2024 at 7:44 AM, hornbri said:

Yeah it was a PET CT, she is getting one every couple of months right now, they were ill defined spots right now. But because she is a sarcoma patient any spots that were not on the last scan are worrying, so they just went right to biopsy. I should be grateful the doctors are being careful, and hopefully it’s just residual from the pneumonia that did occur between the scans.

I think this is the first time I am appreciating that life will never be the same for us, there will be scans for the rest of her life and there will be random setbacks, we somehow need to find the strength to live a full life and not be in fear. 

New update…this journey can be a roller coaster. 

So in Early December when they saw the spots on her lung there was also a spot in her right leg, they didn’t seem concerned but ordered a MRI anyway. 

After we learned her lungs were infection, we got a call about her leg and were told “MRI confirms it is cancer, we need to start a new chemo treatment.”

We agreed to get the ball rolling on setting up the new chemo regime, but also asked to do a biopsy to confirm the mets in her leg (13mm spot). 

Last week we have a CT biopsy for her leg, and the spots were gone, doctors took it as confirmation it was infection or a blood clot….she never got to the chemo due to just taking a while to schedule. 

So radiologist can be wrong…i am kinda annoyed the doctor did not insist on a biopsy first but going forward we know to ask and push for it. 

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Posted
18 hours ago, troph said:

Y'all know what I and my wife have been through the last six months - and the last week if you visit the getting old sucks thread - well today she took her best friend to MD Anderson - best friend has stage 4 breast cancer - they can’t find it in the breast, they found it in her lymph nodes and blood. Turns out even mammograms every six months didn’t turn it up (family history led to more frequent scans). Not the lumpy kind, oh great. So far gone, they won’t do radiation, chemo or surgery. There is an immunological drug that’s been approved for about 5 years that could work but she’ll be on the drug for life and they also have to stamp down her estrogen to zero since it’s estrogen dependent. Won’t know if it works for 4 months. MD Anderson is the fucking tits though. Got this all done in two days, she’s on  the estrogen blockers tonight will have the cancer drug by next week.  I really hope this works, she’s an amazing lady, and my wife’s bestie. I remember when my wife wondered if this woman liked us and she was worried because she wanted to be her friend. Fuck. 

About 2 years ago my wife was complaining about one of her breast having a spot where it was extremely painful. She went for a “normal” mammogram and it did not find anything. Her gyno is an awesome doctor, so she sent her for a 3D mammogram. That test ended up finding a mass. Thankfully, it turned out to be non-cancerous. It did reveal that apparently she has really dense breast tissue, so a normal mammogram might not show something that is actually there. 
Since then, she has done the 3D mammogram. I believe there is also a breast MRI, but the closest one to us is 2.5 hours away. 
 

Hope your wife’s friend kicks cancers ass. 

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Posted (edited)
On 1/17/2025 at 10:17 PM, troph said:

MD Anderson is the fucking tits though.

Word!! Everything about that place rocks.  

The first time I went in a men’s room stall there and saw the sign saying “call this number if you’ve soiled yourself and we will come assist you” - I knew those folks had their shit together and were all about helping patients with the myriad horrible problems that came with the disease.

your wife and MD Anderson are about to kick some serious cancer ass

Edited by Gatorubet
Posted (edited)

My wife’s bestie but if my wife had the chance to kick cancers ass she would certainly try. She’s certainly gonna help her friend try.

Edited by troph
Posted

You don’t have to actually have it to help kick its ass.   And there is never a time not to kick its ass.  And you can even sucker punch it when it’s not looking at you and no one will speak badly about you.  

And you can repeatedly scream “Kisqali” at it as it slowly dies after a good PET scan and…

IMG_3979.jpeg.41c091c133a6b10e45faeea604a2b5e8.jpeg

see…nobody cares.

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Posted
7 minutes ago, AustinDom said:

Long time lurker here.  And have referenced this thread a ton as I await my biopsy results in a couple of days.  I had a PSA result spike and my urologist recommended an MRI, which necessitated a prostate biopsy.  My gut feels like it's cancer and caught early, and treatment would likely be RALP...but hoping that I'm wrong.  Reading the stories and advise has been a huge help and appreciate what everyone has gone through.  Keep kicking cancer's ass.

If you get it, you'll hunt it down and kill it. Hope it's nothing, but if it is, kick the shit out of it.

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Posted
2 hours ago, AustinDom said:

Long time lurker here.  And have referenced this thread a ton as I await my biopsy results in a couple of days.  I had a PSA result spike and my urologist recommended an MRI, which necessitated a prostate biopsy.  My gut feels like it's cancer and caught early, and treatment would likely be RALP...but hoping that I'm wrong.  Reading the stories and advise has been a huge help and appreciate what everyone has gone through.  Keep kicking cancer's ass.

Praying for you. If you’ve read the thread, I’ve shared my experience (sounds similar to yours), but I’m happy to share any of my experiences as I’m 13 months post-prostatectomy if it would be helpful. 

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Posted

Good labs today. Kidney function (was in 1.3 to 1.6 range, but skidded to 2.5) is now back to 2.0. Other numbers not too incredibly high or low.

Still Pillsbury-Doughboy-bloated, but able to get up stairs better. So either the water weight dropped a smidge, or else I've developed some of that Great Big Fat Person Strength.

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Posted
13 minutes ago, AustinDom said:

Update:  I saw my urologist today and my biopsy came back cancer free.  Fuck yeah!   I have a repeat biopsy in 6 months to verify but otherwise all good.  

Sounds like you are pre-kicking its ass. Well done.

  • 2 weeks later...
Posted
Wife had a follow up PET scan this week, confirmed the spots in her lungs and legs were gone on their own so they were all likely infection. She is officially in surveillance mode, and no more chemo for now!
New scans every 2-3 months for at least 2 more years is the current plan. 
Thanks for all the continued support, and keep up the fight!

Love this update, man. Y’all should celebrate with wild and boundless sex. Tell your wife Dr Brisket said so.
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Posted (edited)
On 1/20/2025 at 10:15 PM, AustinDom said:

Long time lurker here.  And have referenced this thread a ton as I await my biopsy results in a couple of days.  I had a PSA result spike and my urologist recommended an MRI, which necessitated a prostate biopsy.  My gut feels like it's cancer and caught early, and treatment would likely be RALP...but hoping that I'm wrong.  Reading the stories and advise has been a huge help and appreciate what everyone has gone through.  Keep kicking cancer's ass.

Reach out if you want some advice or have questions.

edit: just saw you other post. Congrats!

Edited by Hate
Posted

After months without Keytruda, and taking half-doses of Lenvima, got scans.

Good Clean Boring Scans.

Meanwhile the Let's-See-How-Much-Water-Weight-We-Can-Load-Onto-RD science project is winding down. A week ago I sorta went Bolshevik and told them what I wanted to happen, and dang if they didn't add some drugs that work. Legs are at maybe 75% strength instead of 50, each day a little more of the Swollen Horrors become a memory.

Just in time. Two art shows this weekend and I'm gonna find out how low my low gear will go when heaving boxes and tables. Upper body strength is a study in atrophy, but with my freakish pre-cancer-unknown lizardlike powers of regeneration, I expect to harden the fuck up Australia. Plus Mrs. Canecutter has agreed to sacrifice her free time and will be there to keep selling art, should I collapse and start thrashing on the pavement.

And it's warm again. Fuck all the bullshit, prepare to counterattack.

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Posted
21 minutes ago, pops said:

So...update on my dad. No one remembers. One post. It's fine. But prostate cancer. He really didn't want to get it removed because of the sides and was very hopeful about a different way to do it with a laser or hot water or something to cut the tumors out at the mayo clinic. 

Consults looked good but the labs came back not great. My dad was gutted. Asked the doc what he would do if it was his dad in the exact same scenario. Doc said he wouldn't hesitate to just get it cut out. 

So... Last Monday was surgery. Doc said it went great, apparently his anatomy is such that he has lots of room in his abdomen and there was basically zero risk of nerve damage and the prostate wasn't pushing pp against the bladder so doc felt like there really wouldn't be many side effects. 

Yanked the catheter on Wednesday and did scans. Pathology came back today and zero cancer. It never left the prostate. I had a good cry. 

God bless all of you dealing with this shit. 

Give em hell, Dad.

Posted
So...update on my dad. No one remembers. One post. It's fine. But prostate cancer. He really didn't want to get it removed because of the sides and was very hopeful about a different way to do it with a laser or hot water or something to cut the tumors out at the mayo clinic. 
Consults looked good but the labs came back not great. My dad was gutted. Asked the doc what he would do if it was his dad in the exact same scenario. Doc said he wouldn't hesitate to just get it cut out. 
So... Last Monday was surgery. Doc said it went great, apparently his anatomy is such that he has lots of room in his abdomen and there was basically zero risk of nerve damage and the prostate wasn't pushing pp against the bladder so doc felt like there really wouldn't be many side effects. 
Yanked the catheter on Wednesday and did scans. Pathology came back today and zero cancer. It never left the prostate. I had a good cry. 
God bless all of you dealing with this shit. 

Good shit, man!
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Posted

He chose wisely.  If you opt for most of the other treatments and the cancer returns, it s pretty much guaranteed you'll be incontinent the rest if your life.  That is what the initial urologist I met told me and then was echoed by the doctor at MD Anderson that invented the robotic procedure used today.

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Posted

https://www.businesswire.com/news/home/20250207460554/en/U.S.-FDA-Approves-Pfizer’s-ADCETRIS®-Combination-Regimen-for-the-treatment-of-RelapsedRefractory-Diffuse-Large-B-Cell-Lymphoma
 

thought I’d throw this in here that there’s a new indication approval for this drug combo.  May not effect anyone in this thread right now, but know that people will be helped and there’s always more in the pipeline. 

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Posted
https://www.businesswire.com/news/home/20250207460554/en/U.S.-FDA-Approves-Pfizer’s-ADCETRIS-Combination-Regimen-for-the-treatment-of-RelapsedRefractory-Diffuse-Large-B-Cell-Lymphoma
 
thought I’d throw this in here that there’s a new indication approval for this drug combo.  May not effect anyone in this thread right now, but know that people will be helped and there’s always more in the pipeline. 

Interesting.

I took this drug (Brentuximab Vedotin) for my cHL (classic Hodgkin’s Lymphoma) as a first-line treatment along with Vinblastine, Dacarbazine, and Adriamycin (the “Red Devil”).

It is slowly replacing the decades old version that uses bleomycin (which can fuck up your lungs).

There is even already a better cocktail for cHL patients too with even fewer side effects that uses the same 3 drugs plus Nivolumab instead of the BV.

Unfortunately for me, BV really fucked my nerves up in my hands and legs/feet. Most people experience peripheral neuropathy of their sensory nerves, but I suffered a lot of motor nerve damage and muscle wasting. I am about 17 months out of treatment now and still not close to normal, but I have made pretty good strides. At my worst, I lost all of my lower leg/calf muscle control and strength and could not even lift my heels up off of the ground at all. I had to use a cane and looked like an 80 year old (I am 36). I can now walk at 3+mph and I’m still improving from there.

My hands had the median nerve functions affected quite a bit (which seems odd; the ulnar side was pretty much unaffected). I essentially lost the ability to oppose my thumbs. Luckily, I’m doing pretty good there now. Not perfect by any means, but I can use my hands much better now and write with a pen pretty much normally again.

I’m still glad that more people can get help, but it’s just definitely something to watch out for because the neuropathy can ramp up VERY quickly (although my case is pretty rare).
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Posted

Oxaliplatin was the one that fucked up my nerves in my feet.  I was told about the neurotoxicity in advance, so it was not a surprise, just an “ it is what it is” thing. 

Platinum based chemo drugs suck.  And I recollect it increased my survivability chances only 1 or 2%.  My refusal to take that crap for six months (I did infusions for three) was one of the best decisions I ever made.

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Posted (edited)
On 1/20/2025 at 6:14 PM, Gatorubet said:

The first time I went in a men’s room stall there [MD Anderson] and saw the sign saying “call this number if you’ve soiled yourself and we will come assist you”

 

Does that phone # only work for patients and those in their facilities, or is it a generic number for anyone in Houston who is in need of immediate assistance? Asking for a friend.

Edited by Nice Guy Eddie
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Posted
2 hours ago, Anton Chigurh said:


Interesting.

I took this drug (Brentuximab Vedotin) for my cHL (classic Hodgkin’s Lymphoma) as a first-line treatment along with Vinblastine, Dacarbazine, and Adriamycin (the “Red Devil”).

It is slowly replacing the decades old version that uses bleomycin (which can fuck up your lungs).

There is even already a better cocktail for cHL patients too with even fewer side effects that uses the same 3 drugs plus Nivolumab instead of the BV.

Unfortunately for me, BV really fucked my nerves up in my hands and legs/feet. Most people experience peripheral neuropathy of their sensory nerves, but I suffered a lot of motor nerve damage and muscle wasting. I am about 17 months out of treatment now and still not close to normal, but I have made pretty good strides. At my worst, I lost all of my lower leg/calf muscle control and strength and could not even lift my heels up off of the ground at all. I had to use a cane and looked like an 80 year old (I am 36). I can now walk at 3+mph and I’m still improving from there.

My hands had the median nerve functions affected quite a bit (which seems odd; the ulnar side was pretty much unaffected). I essentially lost the ability to oppose my thumbs. Luckily, I’m doing pretty good there now. Not perfect by any means, but I can use my hands much better now and write with a pen pretty much normally again.

I’m still glad that more people can get help, but it’s just definitely something to watch out for because the neuropathy can ramp up VERY quickly (although my case is pretty rare).

ADCs target cell receptors that have been shown to be prevalent in cancerous cells. Sometimes the same receptors are prevalent in certain healthy cells, and since these drugs are administered systemically they will attack all of the cells. One of the tricky things is to find something that is efficacious at a dose that is tolerable to most patients. Neuropathy is a pretty well known AE for many ADCs. 

Posted

Got stabbed in the kidney yesterday for a biopsy. No problems there, zero bleeding or pain.

What zinged me is they paused my Lenvima for a week so as not to jack up the blood pressure on the wound. Fair enough.

This morning I'm looking at my 4 bp medicines so I decide to take just one, the Coregs. I'm lazing around, feel a little loopy, check BP.

Like 70 over 50. There are corpses with higher BP than that. I somehow get down to the kitchen, can barely see or think, get hold of salt or something just in time. Gradually increase pressure. Dayyum.

Text wife specifically asking her to bring a supply of shitty food like frozen burritos, pot pies, whatever is simple and full of salt. She is appalled but eventually does so. I need salty crap food as a "break glass in case of plummeting blood pressure" emergency supply. I saw where she put it in the freezer in case I have to grab it out of there blind.

In the meantime I strategically ate some canned chow mein that we bought ironically. Did the trick. BP is still at levels not seen since high school. Maybe I'll drag some Ritz crackers to bed.

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Posted
13 minutes ago, RDCanecutter said:

Text wife specifically asking her to bring a supply of shitty food like frozen burritos, pot pies, whatever is simple and full of salt.

IMG_4129.gif.f1174902fcd6d75bf1261f94e7e7fd27.gif

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Posted (edited)

Developed a goey lump on my left elbow a few months ago. Thought was tennis elbow or bursitis but no such luck they don't know what it is . I couldn't make through the MRI awake because the pain from the positioning of my arm so Im getting knocked the fuck out next week for another one.

Wish me luck.

Edited by MissingInAction
Posted
35 minutes ago, MissingInAction said:

Developed a goey lump on my left elbow a few months ago. Thought was tennis elbow or bursitis but no such luck they don't know what it is . I couldn't make through the MRI awake because the pain from the positioning of my arm so Im getting knocked the fuck out next week for another one.

Wish me luck.

Whatever.  Nobody ever died from "whack-off elbow."

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Posted
2 hours ago, MissingInAction said:

Developed a goey lump on my left elbow a few months ago. Thought was tennis elbow or bursitis but no such luck they don't know what it is . I couldn't make through the MRI awake because the pain from the positioning of my arm so Im getting knocked the fuck out next week for another one.

Wish me luck.

The Wet Leprosy.

Posted
9 hours ago, MissingInAction said:

Developed a goey lump on my left elbow a few months ago. Thought was tennis elbow or bursitis but no such luck they don't know what it is . I couldn't make through the MRI awake because the pain from the positioning of my arm so Im getting knocked the fuck out next week for another one.

Wish me luck.

Chris?

 

image.png.1612d9d6297c08b9bc2c62e2bec5a1d4.png

Posted

Biopsy results back in, they are 100% sure (as in completely) that every number they didn't like about my kidney can be blamed on Lenvima, and various other drugs they gave me to manage side effects. The calls were coming from inside the house.

So, like, dropping or cutting back on half the concoctions I was innocently scarfing down. In the past two weeks I lost about ten pounds of excess water weight, maybe that much left to go.

Doc has a different cancer drug lined up for the future, but for right now, I am just going to pretend I never had anything.

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Posted

Keep kicking it ass!! My bloodwork came back good today.  My next appointment is in October which will be 2 years. My doctor said the chance of recurrence drops dramatically after 2 years, so I’m hoping for continued good news in October…other than FINALLY beating ou in consecutive years. 

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Posted

Strange timing. I’m in stirrups with some asshole about to do unholy things to me because I started pissing blood a while back. It’s benign, a side effect of running, but here I am. Not fucking happy right now.

Congrats on the kidney news! That’s awesome!

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Posted

Update on my dad. He has a rare form of cancer called a Chordoma (Gary Senise’s son had it as well but his was in his brain stem/upper spinal cord). My dad’s chordoma is in his tailbone.

He’s been going down to MD Anderson every three months or so for MRI, CT Scan, and blood work, monitoring the size and growth of the tumor. It’s sitting right inside his tailbone and pushing on his sciatic nerve, causing terrible pain in his lower back and traveling down the back of his leg along his hamstring and into his feet. He went down to MDA about a month ago and found it hadn’t grown. Two weeks later, he had been hiding from my mom and I that he’d been in terrible pain, couldn’t sleep, etc. He went to an urgent care and took some shot that I can’t remember the name of and is able to sleep now. He’s been taking so many different meds (muscle relaxers, pain meds). I told my mom that she needs to take all the meds and be the pharmacist. I’m afraid he’ll take some stuff and not know what he’s taking. Hell, 3 weeks ago, I threw my back out and was laid up for a week and I didn’t even need to go get a prescription because he had everything the doctor I went to see told me he was going to write me a script for. That’s when I knew it was bad.

Anywho, he’s supposed to be going back down in April and starting Keytruda. The cancer is so rare that no one really knows how to treat it. They want him to be the guinea pig. 

He’s also unimpressed with how MDA is running now compared to what it was in 2016 when he was last there. 

Sorry for the long post. Y’all keep up the good fight.

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