anal cancer newbie

During treatment and recovery what was the most comfortable way to sit and sleep? 

Pat42 said:

Maggie

She didn't have any symptoms other than very occasional, very small amounts of bleeding.  She was only diagnosed because she finally went in for her first routine colonscopy at 54 (that was not a fun day!).  So while she was waiting for the treatment plan to get set up and treatments to start, they told her to just keep an eye on that one symptom, and call them if it got worse, which it didn't.  They emphasized it was unlikely that there would be much change to her symptoms in that time interval.   As in many marriages I think, we are different in different ways.  I read everything I could get my hands on about anal cancer, but she felt that if she knew about all the worst case scenarios, she would focus on those, so she listened to the doctors, who in general focused on very positive viewpoints (with good reason, this cancer is very treatable).  You seem to be more like me, in that sense.  I think it's better to know as much as possible to be able to make any decisions that come along.  But what's hard to keep in mind is that when you read a lot of this information, many of these awful side effects are outliers, that occur with a small percentage of people.  If you know about them it's good, because you can be alert for early signs of symptoms, so they can treat anything that does occur early.  Since she didn't do the reading, I'd ask her (too frequently) whether she had specific symptoms, mostly all associated with the treatment, not the disease.  But one of the nurses told me that although some of the symptoms CAN be serious for some people if they get out of control, it was kind of like watching the drug commercials on tv.  You're not sure exactly what the benefit of the drug is, since they spend 95% of the commercial talking about the hundreds of ways the drug is going to kill you.  The capecitabine/xeloda pamphlets actually had a list of side effects that quantified what percentage of patients saw those side effects, so I tended to focus on making sure the more common ones were under control/not occurring.

Melissa didn't really have strong noticeable effects of treatment till week 4.  Until then she had the bad taste and dry mouth from Xeloda, a general fatigue, and then in week 4 started to have "stinging" in the "nether regions" where the radiation was hitting the skin.  From week 4 onwards, she had the local discomfort from radiation that kept getting more painful, more fatigue, and this is when her appetite went to where we had to get the Ensures down her every day.  She had tingling in her hands and feet, but it didn't progress any further to what is called hand and foot syndrome.  She had low blood counts, which is a normal effect of the treatment, but they stayed high enough that she never needed transfusions or neupogen. She didn't loose a hair on her head that I could tell, but she says she did actually some thinning (she has a lot of hair).  She was prescribed percocet for pain control, but found after a couple days that ibuprofen (ask the doctor first) worked better for her.  Neither killed the pain during bathroom trips completely, but the percocet caused constipation for her that she thought actually made it worse.  Others have had better luck by using stool softeners in combination with the stronger pain reliever.  Her brother-in-law was struggling with opioid addiction as a result of his cancer treatment at the same time, so she was very reluctanct to go to the full dosage they allocated her - that may have been a short term mistake that she made to avoid the long term possibility of opioid worries.

Hope that helps some! Try to get some good tv or books on hand to keep your mind from dwelling on low probability effects.  During the later weeks, you'll probably want to spend quite a bit of your time laying down and resting.

Pat

I was just rereading the comments. And I appreciate your words of advice. 

caholz33 said:

Phantom BM Pressue

This symptom does not necessarily result in any loss of control, just super disturbing feeling (right after having a bowel movement), that there is a massive second poop that MUST GET OUT.  Even when I intellectually knew that it was just swelling, I physically had to stay on the toilet until it subsided and force myself not to push.  Sometimes you will get spasms along with the swelling which wasn't so painful like a charley horse, but just SO FREAKING WEIRD.  Between that and the tedious clean up, I would just go lie down after BMs until some energy came back.  By the way, if hearing detailed experiences bothers you, speak up and I will edit posts.  For me, it was nice to feel prepared and usually whatever came down the pike wasn't as bad as it sounded.

thanks. no need to edit with me.. the more detailed the better   i know everyone is different, and it helps to know what to expect (or not), itis nice to feel prepared. i appreciate all of the information. hugs.

I was wondering this too.. but my nurse said it was a cumulative process and the doctors know exactly how much radiation/chemo to give me. I'm ready to get on with it and start my road to a successful recovery! How are you doing? Hugs.