Rectal cancer treatment guidance

Hi. I think I was in the same trial as you but at Strong Memorial Hospital. I had 30 radiation treatments and then was to receive 4 months of FOLFOX. My tumor was tight on the sphincter and rectum. I

had to stop the chemo halfway for surgery and then resumed the FOLFOX for 2 more months.  There had been a small nodule that we were watching. I was able to have a biopsy of the largest nodule

in March of this year and it proved to be cancer. There are 4 more scattered throughout both lungs. I will be starting Folfiri with Avastin in a few weeks for 6 months. 

  I was officially diagnosed with stage 3 back in July last year and was 55 at the time.  I had a colonoscopy in June and was told I had a tumor.  I was given what they called the standard treatment.  28 sessions of radiation and Xeloda on a schedule of 5 days on and 2 off.  M-F with the weekends off.  Then a surgery followed by 6 2 week sessions of continuous xeloda with a week off in between each session.  If I remember right I think it was around 10 or 11 cm from the verge and about an inch and a half long and an inch wide.  Pretty much at the junction of the rectum and colon.   

 Im in the 2nd week of the 5th session of follow up chemo.  Dosage was increased to 3500 mg a day from the 3000 I was taking back when I first started.  The surgeon is who actually sets the cancer stage and so forth. At least thats what they do it here. There were many pivitol moments and scares along the way beyond knowing I had cancer.  There were several bright moments as well so overall it wasn't a completely horrible experience.

 The first part of this became routine rather quickly and as you have probably found out you can forget about modesty.  For the radiation you have to drop your pants and shorts in front of mostly women. You get used to it.  Doing the surgery was an experience.  I never had an operation of any kind so this was my first. The operation went quite well I guess. I was asleep through the event but I must have twitched or something because when I woke up in recovery I had a slight scab on my right elbow.  When I went in to the operating room they had me sit up and lean forward so they could put in an epideral.  I had my arms draped over a nurse and I must have let one slip off as I started to doze off.  I woke up in the recovery room about 4 hours later.  I was concerned because I told the surgeon beforehand that if they have to put in a permanent colostomy bag not to do it.  I know, vanity but some things I just can't take and that's one of them.  

 Once awake the first thing I did was yank out the Ox hose from my nose and took off the leg brases. Nurses tried to stop me but I knew I didn't need that stuff.  Within a couple minutes of being babied I was finally allowed to get up and walk around.  I ended up staying there for the minimum 3 days and then they cut me loose.  The nurses were all very nice even though I had an accident while laying there on the first day. The Galvenite doesn't completely clean you out and what I thought was just gas wasn't. That was a very embarassing moment.  But then again, this is a very nasty dirty disease so chances are there are going to be incidents like that. I didn't get any bag at all which was the first thing I checked for once I did wake up and was coherent.

   One thing I would recommend.  If you have a choice go with the epideral for the pain medication.  It keeps your entire midsection numb which is helpful when they give the shots for preventing blood clots.  You won't feel a thing. Then again, I wish I could have felt at least a little bit.  I had my wife bring me a BigMac since they had me on no food restrictions.  That stayed down for about 30 seconds and came right back up.  The only good thing about that was I didn't feel the usual expected pain throwing up.  I can't imagine how excruciating it would have been if it weren't for the epideral.     

 There was one twist.  When they did the surgery they said it had clear margins, was well defined, and no lymph node involvement. That's about as good news as you can get. Hearing about the post surgical findings I assumed I might be able to skip the follow up chemo.  The oncologist didn't agree saying it's quite possible the first rounds may have killed off the cells in the nodes and I'd get a recurrance in a couple years. He decided that I do the normal stage 3 mop up.  I didn't argue because I don't know diddly about cancer and a few months of chemo discomfort is tolerable compared to being dead in 2 years. That's super important. Like the rest of us you'll read up on things and begin to think you know how to get treated.  Forget it. We're all idiots unless we've got MD next to our name.  

I would strongly advise just doing what the doctors say.  The number one reason people don't survive is because they deviated from the treatments or tried some so-called miracle cure that will end up killing you.  There is a post on this site about apricot seeds.  Really?  Those contain cyanide and if you eat enough of them your toast.  Same goes for Dycotamous earth. The same stuff that's put in swimming pool filters.  They advocate raising your alkaline level to kill cancer. If you could raise it you'd be dead too. I swear, if I didn't know better I'd say these people posting that nonsense were intentionally trying to kill us. Following orders includes not changing the dosage amount of anything unless you really can't tolerate it. That little bit of difference can mean the living or not. 

Xeloda which is the chemo I was given which is the pill form of 5FU has many and different side affects and they vary from person to person quite a bit.  What I've got here you may or may not experience. I've gotten some hand foot syndrome, essentially temproary neuropathy.  That's where you feel a little numb in the fingers and your feet will hurt trying to walk when you first get up.  The foot issue lasts about 30 seconds or so and then goes away.  This didn't happen until I was in the mop up phase so the dosage is probably the trigger.  The bottom of your feet and toe nails will look hideous.  Oh well, youve got cancer so being fashionable with open toe shoes is out.   

Drug interactions with chemo.  Melatonin, I know some advocate it but I've had bad reactions to it. That and antibiotics. The melatonin would keep me up at night with cramps which defeats the purpose of taking it.  Antibiotics, which I was taking for a planned oral surgery caused me to turn from Dr, Jekell to Mr hyde. I went nuts is the best way to explain it from just two days overlap.  Other things may do different things or nothing at all. Youmay have a little bit of hair loss and very dry skin so keep lots of lotion on hand for your hands and feet.  I guess the hair will grow back.  Given what chemo does none of these are a surprise. It kills cells by not allowing them to divide.  It's what most chemo therapies do.  Yours is a fluid and so will invariably be different, or not when it comes to side affects. Rest assured there will be some.  It's not the end of the world and it is tolerable.

Now, the post cancer surprises.  You may end up with retrograde ejaculation. Ie, dry orgasms.  I did and it scared the hell out of me when I first saw it. They didn't say anything about it and I thought sure as hell it's leaking inside and I'd end up with an infection. It's caused by a valve that directs either urine or semen getting burned and jammed up from radiation. It ends up in the bladder.  It might be fixable or not.  I can't say and I was told to see a urologist which I'll do once the chemo is completely done. I've got plenty of kids but I still would like the appearance of normal. Another one is neuropathy.  This one seems to vary quite a bit as well. Most of us have it to some degree or another and in a lot of cases it goes away on its own.  That's the summary version of my "adventure".  I've got it completely documented in my blog which is about 30 pages long. Big surprise on that one. 

Hi,

I had rectal cancer stg 3, i had radiation and chemo, had an lower anterior resection with ileostomy, then an ileostomy takedown, with more rounds of chemo. Ever since the takedown in Octover 2020, I am unable to nail down a routine to eliminate diarreah. I take immodium 3-5 daily,  as my insurance will not cover it and benefiber. I was told by a nutritionist to take fiber at night, 2 tablespoons and drink a lot of water. This caused 2 accidents through the night. Does anyone have a recommended routine that works for them?