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Posted
Just now, Gale Snoats said:

MIA -- I think you've already decided to head to MDA but here is my story -- I had a growth just above my collar bone on my right side in 05.  I was told cancer is a spectrum and, while I didn't have risk of it spreading throughout my body, it was locally aggressive and 'cancer like' and they were concerned about it spreading to my spine and brachial plexus. My doctors in Austin wanted to go in and do very invasive surgery and remove the tumor and a bunch of healthy tissue around it.  They told me the nerve damage would likely result it in my not being able to move my limbs on my right side.  I went to MDA and they said that was bullshit.  One of the top head and neck surgeons in the world (a longhorn) handled my surgery and I had no detrimental effects on my movement. After surgery one of the top radoncs in the world created a radiation plan for me.  I did radiation (daily I think) for 6 weeks (at MDA) and then went back monthly, then 3 times a year, then 2 twice a year for the next 4 or 5 years.  I have been fine since getting the call clear in 2011 or so.   

But just to be safe, you switched to jerking off lefthanded, right?

Posted
This may not be the right thread, and I’m trying to be careful on how I word this but it’s something I’ve always wondered. What does getting chemo feel like? Does any part of it actually hurt or is it mainly what it does to the body after that hurts? 

Like gator said, there’s many, many different drugs, so there can be a spectrum.

I took AAVD for Hodgkin‘s Lymphoma. This includes Adcetris (name brand for Brentuximab vedotin), Adriamycin (the ‘Red Devil’), Vinblastine, and Dacarbazine.

They will generally give you an antiemetic first, along with Benadryl (this is how I learned that I am allergic to fosaprepitant; the only thing I have ever been allergic to so far in my life). In my case, the only thing that really gave me issues was the Adriamycin. They call this one the Red Devil for a reason (it is also red in color compared to colorless for the order three I took). It sucks. It can also cause mouth sores and thrush, so they suggest sucking on ice to help prevent it. I wound get so nauseous while receiving it that I could not do the ice after a while. Luckily for me I did not develop mouth sores. When you pee it out your pee also looks like rosé, so that’s something, I guess.

Speaking as someone who received chemo thru a port in my chest, I didn’t really “feel” anything physically when receiving the actual infusion, except for when they did the port flush with heparin. You could almost taste it in your mouth when they did that. Mostly a kind of saline solution taste.

What comes after is the worst part for most people. I was okay for about 1-2 days after, then the heavy nausea and flu-like symptoms set in. These would last about a week for me, sometimes 10 days or so. My chemo cycles were 14 days, so I was lucky if I got a few days of feeling “OK” before starting all over. I also had really bad insomnia for about the first 4 weeks, but luckily that mostly cleared up.

I lost my appetite for a while and subsequently lost a lot of weight. I lost a ton of muscle in my lower legs due to motor neuropathy, and still have weakness and nerve damage there and in my hands, which I’ve posted about in here before (I am still improving though). I could actually feel my calves getting tight from the start, and while I mentioned this to my oncologist, if I had known what this meant I would have spoken up about it even more (I did get dosage reduction later in my regimen).

That said, some people experience almost nothing except a bit of the flu-like symptoms. Some get to toxicity level and have to stop a drug completely.

Some of the drugs can increase chances for other cancers later or damage your heart, lungs, liver, or just about anything, really.

There so, so, much more that I have forgotten, and also many, many more things that others experienced that I did not that I could not tell you about.
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Posted
On 3/28/2025 at 2:05 PM, Gatorubet said:

Basil, I was dx’d 2 years and 7 days after you.  They were just publishing the results of the IDEA study, which show showed that the pills and ox infusion (capox) for 3 months was non-inferior to 6 months of folfox infusions.  So I opted for the pills.  Made it easier to keep working b/c I only had to have an infusion of Ox every 3 weeks. 

I’m very glad to hear that you’re doing great eight years later.  

I take it from context at least you are also NED, so congrats.  I started pissing blood a few months ago and got the complete workup including CT scans, so I got a free NED-pass with the negative results.  (blood was from marathon training and is fairly common)

I remember my docs talking about IDEA but folfox was protocol for Prospect.  I also remember showing up in court a couple of times with that 5-fu pump on.  That was stupid.  I have no recollection about whatever insignificant hearings they were or why I was dumb enough to thing I belonged there wearing a chemo pump.  

Posted
4 minutes ago, Gatorubet said:

Why is the dog crying?

Probably because she heard that dogs end up looking like their owners, and....well, you saw the photo of MIA upthread.  You'd cry too if that was your destiny.

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Posted
6 hours ago, Gatorubet said:

There are many many different chemotherapy drugs.  Each one of the individual drugs has different side effects. As always, people react differently to the same medication.

And then there is the fact that individual dosages will vary as well, as the dosage can change symptoms.  I did my chemotherapy mostly by pill, so for several weeks I would take them twice a day.  I felt generally tired and had horrific diarrhea on the pills..   Every three weeks I would get the ox infusion which would lead to cold sensitivity in my hands that was so great I had to put on gloves to get things out of the refrigerator. The first time I felt it I was at the freezer section of the store and when I grabbed whatever I grabbed, it was so blindingly  painful that I dropped it on the floor.

  And my jaw would cramp up every time I started to eat.   Then it would go away after you were eating a while, but if you stopped eating (like - to listen to a conversation), the next time you took a bite your jaw would cramp up again.

And sometimes your throat would feel like it was closing and you were choking, but that was a false sensation    Because your throat and airway passages were not actually closing and you could simply ignore it  until it went away

 

Well, this won't be a surprise, but that's folfox as well.  I'd add that 48 hours of the Ox infusion I'd crash and often spend (most) of a day or two in a dark room just lying in bed.  No stimuli.  

I had the ox infusion on Wednesday so my wiped out days would be on the weekends.

Posted
10 hours ago, MissingInAction said:

I'm gonna let it go. No fucking way I'm allowing my arm to be cut off.

You’re never going to be cast in the remake of Bad Day at Black Rock with that attitude.

 

Posted
On 4/3/2025 at 4:08 AM, Basil said:

Well, this won't be a surprise, but that's folfox as well.  I'd add that 48 hours of the Ox infusion I'd crash and often spend (most) of a day or two in a dark room just lying in bed.  No stimuli.  

I had the ox infusion on Wednesday so my wiped out days would be on the weekends.

Yeah, I have had multiple different chemo variations of both pills and infusions and too many side effects to list. The absolute worst was after months of ox I couldn't even watch TV because it was too hard to focus. So I'm just laying in bed for full days doing absolutely fucking nothing while also feeling as though I'm constantly 30 seconds away from puking. 

As far as "pain" while receiving chemo I did start to have a reaction to ox around round 9 where I would get flush and develop hives all over my arms during the infusion. They started giving me a good dose of benedryl beforehand and that took care of it. 

My favorite port story is I was in the er because I was having some horrible pain, fever, and vomiting (all potentially very bad symptoms while immunocompromized) and they decided to give me morphine because the oxy wasn't doing anything. From what I've read morphine is supposed to be a slow push over a minute or two but this nurse just slammed the whole thing and I felt it hit my heart and instantly travel to every corner of my body. Fucking intense. Hours later I was able to "dream" by closing my eyes while awake and if I didn't like the dream I could open my eyes and reclose them and something new would be on like changing the channel except it all felt very real while at the same time knowing it's not. Really strange experience. 

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Posted

I don't doubt it.  That said, feel free to put anger to good use.

“Every normal man must be tempted, at times, to spit on his hands, hoist the black flag, and begin slitting throats.”
     -HL Mencken

(fifMIA)

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Posted

Pfftttt!  - think bigger brother.  Porn Hub has something for everyone. 

I know nothing about that, of course….

IMG_3459.gif.1a7360e3dc2b440fd3745e80ed8c0f24.gif

So I have no way of knowing whether you and Lauren doing stuff to each other with attached extendable vibrating butt plugs is something you can monetize or not.

But we are all in your corner.  You dealing with this and having those thoughts is as normal as can be.  I did not mean to suggest otherwise or for you to take it as criticism.  I just wanted you to know that you have an army of people pulling for you who would be crushed if we did not have you around.

But I have a gut feeling that you’ll be around to say terrible but true things at my on-line wake.   Just don’t follow RD.  That bastard can out-raconteur  anybody. 

 

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Posted
21 hours ago, Gatorubet said:

I gave you three days to take that back.  Don’t be a quitter, be a warrior like Lauren.  Or the Bethany surfer chick who got her arm eaten by a shark. she just went back to surfing.

You’ve mentioned all the people who have your back and have supported you.   Why do you want to make all of those nice people who supported you feel miserable for the rest of their lives about this?  For starters, MDA very likely may have a way for you to keep your arm.  It’s natural for folks to feel overwhelmed when given terrible cancer choices, but you gotta fight your way through this pal.   

FYI, I have represented close to 1000 breast implant and ovarian cancer clients.  Lots of those women had to suffer single or double mastectomy operations, in addition to their horrific chemo.  Trust me, MIA, an attractive young wife and mother in her 30s having to have a double mastectomy is a far greater assault on her self-esteem than you and your arm.    

Everyone feel free to neg me for being an unsympathetic asshole, but I can’t think about all those women - and the bald, concentration camp looking patients I saw receiving chemotherapy  when I was getting my infusions, and not share my thoughts with you.  I look forward to seeing your posts five years from now whether you type it with both hands or you use voice recognition software.

The larger point is we all want MIA to be here until you die your natural death 40 years from now….if being shot by the surprised husband of the 70-year-old you’re banging is natural…

 

Yep, be a warrior. 

My wife lost her arm 14 months ago to a sarcoma, but today she is cancer free and on the road to recovery. Yeah losing your arm fucking sucks, but my kids not having their mom, or me not having my person would be a lot worse. 

And every day I watch her do all the normal life things in life, she still cooks and cleans like a good wife ;) it is something you can overcome and do everything in life you want to. She is currently plotting how she can water ski. 

We don’t even know if it will come to that, but if it does you will persevere, don’t quit on me. 

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Posted
1 hour ago, hornbri said:

My wife lost her arm 14 months ago

Her handy arm, or her non-handy arm?

 

Wait, it's your wife.  The question is irrelevent.  Carry on.

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Posted
12 minutes ago, SurlyGator said:

Her handy arm, or her non-handy arm?

 

Wait, it's your wife.  The question is irrelevent.  Carry on.

It’s not, she has adapted her HJs and they are awesome. 

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Posted
23 hours ago, Gatorubet said:

I gave you three days to take that back.  Don’t be a quitter, be a warrior like Lauren.  Or the Bethany surfer chick who got her arm eaten by a shark. she just went back to surfing.

You’ve mentioned all the people who have your back and have supported you.   Why do you want to make all of those nice people who supported you feel miserable for the rest of their lives about this?  For starters, MDA very likely may have a way for you to keep your arm.  It’s natural for folks to feel overwhelmed when given terrible cancer choices, but you gotta fight your way through this pal.   

FYI, I have represented close to 1000 breast implant and ovarian cancer clients.  Lots of those women had to suffer single or double mastectomy operations, in addition to their horrific chemo.  Trust me, MIA, an attractive young wife and mother in her 30s having to have a double mastectomy is a far greater assault on her self-esteem than you and your arm.    

Everyone feel free to neg me for being an unsympathetic asshole, but I can’t think about all those women - and the bald, concentration camp looking patients I saw receiving chemotherapy  when I was getting my infusions, and not share my thoughts with you.  I look forward to seeing your posts five years from now whether you type it with both hands or you use voice recognition software.

The larger point is we all want MIA to be here until you die your natural death 40 years from now….if being shot by the surprised husband of the 70-year-old you’re banging is natural…

 

gator's right.  @MissingInAction if god forbid the safest course of action is to remove the arm, fuck it, take it off.  Absolutely get a second, and third, opinion.  But if that's what they say gives you the best chance of long term survival, so be it.  I can't tell you how many stories I've read of people with esophageal cancer who opt against Ivor Lewis surgery (where they remove much of the esophagus and in my case half my stomach too) where long term the outcome was bad.  The odds for long term survival are exponentially higher with surgery.  So I didn't hesitate.  I lost almost 60 pounds, throw up 4-5 times per week, can eat much in the way of fried foods or high sugar content foods, and eating in general just isn't that enjoyable anymore.  And I was a HUGE foodie.  But 4 post op scans later, I'm NED.  And my kids get to have their dad around a little longer.  I know cutting out your guts does not compare to losing an arm, but just for perspective.  My life has changed in a lot of ways, but the surgery gave me a shot at having a life.  Without it, well, I may not be typing this.

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Posted (edited)
On 4/3/2025 at 10:24 PM, MissingInAction said:

I'm gonna let it go. No fucking way I'm allowing my arm to be cut off.

Hey look on the bright side, you will be less likely to give a handjob to your brother while on vacation. But I guess it depends on which arm they're taking. 

Edited by totallynotabuttpirate
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Posted
19 hours ago, Gatorubet said:

I just wanted you to know that you have an army of people pulling for you who would be crushed if we did not have you around.

Hey, phrasing!

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Posted
28 minutes ago, SimonBolivar said:

God, that was a proper fucking movie.

Ernest Borgnine as a bad guy was fun to watch.   Lee Marvin was also great as a baddie.   Not as awesome as his Liberty Valance portrayal, but still good.

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