Jump to content

Recommended Posts

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.
  • Hook 'Em 1
Posted
3 hours ago, MissingInAction said:

Dude wants to take my arm so I'll be getting a second opinion.

Talk to the specialist at MD Anderson, Dejka Araujo.

  • Hook 'Em 1
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.

  • Haha 1
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.

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.



×
×
  • Create New...