anal cancer newbie

Maggie, you sound like you've already locked in a great attitude to get through the treatment. Our doctors also emphasized the importance of completing the treatment with as few breaks as possible.  "This disease is probably not going to kill you," is what both oncologists said. You can't totally control how your body responds to treatment (although the creams, baby wipes,etc can help a lot). But making sure you get enough calories can help keep your strength up. Melissa was on Xeloda, and she said it made almost all foods taste bad, kind of a metallic after taste. As others have said, there are good foods and not so good ones, but people are different in how they respond. With .Melissa, she started to eat a lot less because nothing tasted good. Docs said if she started losing weight too fast, he'd put her in the hospital, and emphasized again to avoid breaks due to that or dehydration. He said if you could eat it, don't worry if it wasn't on the "good" list.just get the calories in. There are several varieties of boost or ensure, Melissa got a lot of her cals from the 350 cal per bottle version of ensure. Two of those a day, and she only needed another 800 to break even for the day. That was filled by some of the most unhealthy stuff. Her favorites included Arby's mozzarella sticks, cherry turnovers, and Wendy's frosties. Afraid I'm not the cook in the family, that might have limited her options, although my daughter also cooked quite a bit. Probably her favorite food was red grapes during the last two weeks.she didn't have mouth sores but had extreme dry mouth, and I the grapes helped more than anything to keep it moist.

Since you only take Xeloda mon-fri, food might start tasting better on the weekends, so take advantage of that time to "load up" if you need to.

If you feel like you're developing one of the other symptoms, get the nurses treating you quickly before it can become a big enough problem to delay your treatments.

If there is a possibility of your husband or relative taking the last week off of work to help, that might be beneficial. It will be hard on them seeing you in discomfort, but being able to help you with simple stuff will help them cope too.

Pat42 said:

Nutrition

Maggie, you sound like you've already locked in a great attitude to get through the treatment. Our doctors also emphasized the importance of completing the treatment with as few breaks as possible.  "This disease is probably not going to kill you," is what both oncologists said. You can't totally control how your body responds to treatment (although the creams, baby wipes,etc can help a lot). But making sure you get enough calories can help keep your strength up. Melissa was on Xeloda, and she said it made almost all foods taste bad, kind of a metallic after taste. As others have said, there are good foods and not so good ones, but people are different in how they respond. With .Melissa, she started to eat a lot less because nothing tasted good. Docs said if she started losing weight too fast, he'd put her in the hospital, and emphasized again to avoid breaks due to that or dehydration. He said if you could eat it, don't worry if it wasn't on the "good" list.just get the calories in. There are several varieties of boost or ensure, Melissa got a lot of her cals from the 350 cal per bottle version of ensure. Two of those a day, and she only needed another 800 to break even for the day. That was filled by some of the most unhealthy stuff. Her favorites included Arby's mozzarella sticks, cherry turnovers, and Wendy's frosties. Afraid I'm not the cook in the family, that might have limited her options, although my daughter also cooked quite a bit. Probably her favorite food was red grapes during the last two weeks.she didn't have mouth sores but had extreme dry mouth, and I the grapes helped more than anything to keep it moist.

Since you only take Xeloda mon-fri, food might start tasting better on the weekends, so take advantage of that time to "load up" if you need to.

If you feel like you're developing one of the other symptoms, get the nurses treating you quickly before it can become a big enough problem to delay your treatments.

If there is a possibility of your husband or relative taking the last week off of work to help, that might be beneficial. It will be hard on them seeing you in discomfort, but being able to help you with simple stuff will help them cope too.

I was so fortunate to never develop any big problem with food taste, but Pat is absolutely right about the importance of calories regardless of how it tastes.  Unless nausea is a factor, just find something you can swallow and get it down into your belly.  The doctors and nurses have their jobs, and YOUR biggest job during your treatment is to protect your body as much as possible from disruptions to treatment.  To stay in good "fighting" condition you must eat, rest, and avoid germs and bacteria.  Give your home a big cleaning in advance.  No raw foods. Don't go out except to treatments and doctors, and when you are out don't touch anything or anyone you don't have to.  Don't let friends hug you.  Keep antibacterial lotion and wipes to hold if you have to touch anything (doors, the little styus on the credit card machine, or touchscreen anything ... seriously get in touch with your inner Howard Hughes germaphobic side, it is appropriate in this situation!)  One of my cancer mentors had been vegetarian, but when her blood counts went down to a level that threatened her treatment, she made herself eat a big fat hamburger.  You can indulge yourself in a lot of ways but refusing to eat is not one of them!  If your husband is supportive like Pat, and like mine was, that is a huge blessing and also a big advantage!!  

maggiesco said:

Pat42

This is great nutritional advice. Thank you. My husband will be with me the entire time of the treatment and for that I'm so lucky and thankful.

 

Since I've been diagnosed (and waiting for treatment to start), it seems that I'm super aware of my symptoms. Was Melissa like that too?

 

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 love the stuff and prior to treatment, stocked my freezer full of 6 half-gallon cartons in my favorite flavors so I'd be ready for the anticipated weight loss and poor appetite.  I thought surely my taste buds or body would never reject ice cream!  But you know what?  It did.  I remember several times standing in front of the refrigerator with the freezer door open, staring at all of those cartons and not wanting even one bite of it.  Sometimes I would think of something that sounded good, but by the time I got it prepared, I no longer wanted it.  I ended up eating a lot of ramen noodles, but would never dream of eating those things now.  Bad, bad, bad!  But, when your appetite tanks, you must eat whatever you can get down and sometimes you won't know what that is until that moment, making it very difficult to plan ahead.  I've always had a very good appetite, so it really hit me hard not knowing what to eat or being able to force myself to eat.

I had horrible diarrhea during treatment, except for the short time my doctor had me on an iron supplement, due to anemia.  It immediately constipated me, so I stopped taking it.  In your case, prior to treatment, your symptoms could be due to the tumor.  I remember having issues with constipation, thin ribbon-like bm's and pain/pressure prior to beginning treatment.