anal cancer newbie

Ohmy

I did not use any ointments

I did not use any ointments during the six weeks of treatment because it has to be removed every day before radiation.  I was worried about radiation burns.  I started getting burns week 5 of treatment and they continued to get worse for a couple of weeks after treatment ended.  I used Aquaphor ointment because my bowl movements were like battery acid and it provided a nice barrier.  I remember someone once said it's OK to  scream into a towel and I did.  That only lasted a couple of weeks.  I still use Aquaphor everyday even though I have no pain now.  My husband hooked up a hand held shower for me so I could rinse off after I used the bathroom.  I also used spray bottles and soft papertowels.  I took lots of sitz baths with Epsom salts and baking soda.  Taking care of my butt became a full time job.

caholz33

Phantom BM/ Depends

I had phantom pressure and spasms during and after bowel movements starting about halfway through.  I never had any serious leakage or incontinence but on advice of buddies I kept a change of clothes with me last couple weeks.  Better be safe and prepared for anything.  I knew every public restroom between me and radiation clinic and had some urgent needs but never any loss of control, thankfully.

maggiesco

sitting and sleeping

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

caholz33

maggiesco said:

sitting and sleeping

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

Sitting Sleeping

I don't remember altering or worrying about sitting/sleeping positions until the skin really started getting irritated, maybe week 4?  Then it was mostly a matter of moving slowly, and not wearing underwear (or improvised underwear ... one of my mentors told me she got cheap huge granny panties and cut the leg elastic out).  By the last week getting comfortable  wasn't really an option, ugh.  The trouble is that cleaning gently is difficult and then you don't even want to dab your skin with anything to dry it.  So drying was done spread eagle on bed under fan, trying to keep cheeks and all skin creases open so none of your skin is touching other skin.  Don't worry too much in advance, it sounds worse than it is.  It is doable.

maggiesco

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

Pat42

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

caholz33

maggiesco said:

caholtz33

Phantom bowel movements are to be expected? I heard about these and bought some fancy depends underwear, just in case. Halfway through treatment, did you stick around the house?

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.

maggiesco

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.

caholz33

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.

Pat42

maggiesco said:

Pat42

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

Happy New Year!

 I know that the holidays are pretty stressful with all the worry, we were going through the same thing exactly a year ago, waiting to start treatments. Not much can reduce your stress, but probably more than the specific advice in the forum what helped was the evidence that so many of the folks are doing pretty well a few months down the road. 

Ohmy

I bought some boxer shorts

I bought some boxer shorts and they were very comfortable around the house.  I wore sweat pants to my treatments.   The last week of treatment and for a couple of weeks after treatment ended, I went around the house bottomless.  I spent most of my time in bed sleeping so sitting up wasn't a problem.  I sat on a neck pillow at the dining room table.

maggiesco

A bit more bleeding as I wait for treatment

In the past couple of days I've notice that I have a bit more bleeding as I poop or pass gas on the toilet. Is this pretty much a "normal" part of the symptoms of anal cancer until it is treated?

PS: Treatment finally starts in 3 days. A few days short of month since my diagnosis. 

Mollymaude

Bleeding

Yes I had bleeding prior to treatment. The tumor gets lots of blood vessels in it and they are close to the surface- and two years after treatment I still bleed at times. Even though bleeding is what alerted me to get checked out and find the cancer, I don't really worry anymore about occasional blood since all my rectal exams and scans have been fine. Glad you are starting treatment in 3 days, keep us posted.

Ohmy

My symptoms prior to

My symptoms prior to treatment were constipation, gas, bleeding, and feeling like I had to go all the time.  

Ohmy

I told my doctor in December

I told my doctor in December I don't have any bleeding or pain.  My scan and check up were clear but he told me I will have some bleeding in the future from the radiation.  I feel better now than I did before I started treatment last year so I am not going to worry about it.

caholz33

Starting mid week?

When I had my treatment all the start dates were Mondays.  So happy to hear you will soon be started and SOON IT WILL BE OVER, yeah!  I hope you are feeling ready.  I really believe you will do great and kick cancer's ****!

maggiesco

caholz33

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. 

caholz33

Thinking of You

Start date today?  Hope all is off to a decent start.  Yes, between me and my 2 mentor buddies, we all got slightly different numbers of radiation treatments.  We were all Stage II, so maybe you've got more.  Keeping you in my thoughts!!! XOXO