Advice from a Nurse and Fellow Anal Cancer Patient

As soon as you are diagnosed, begin preparing your skin for radiation treatment by faithfully moisturizing at least 3 times daily with a good, ideally non greasy, moisturizer.  I used Vaseline Total Moisture, but any good quality moisturizer will do.  Focus on the skin folds in the groin, and cream any area that a bathing suit bottom would cover. IMPORTANT: Once you begin radiation, you must wash off all creams, ointments, etc prior to radiation, otherwise the rays will intensify.  The very BEST way is to get in the tub for 30-45 minutes, and they will soak off.  I put a small squirt of whatever shower gel I had, and ran the water, not too hot! This is a great time to lie back and rest or reflect. Dry gently after emerging, use a blow dryer on cool, and go to your treatment. (Try to get an afternoon time, if you can, so you don't have to rush). After my radiation treatment, I would step into the restroom, and moisturize again.  

I chose to have my husband take (X-rated!) front and back digital pictures of me after the first week and weekly thereafter. It was easier for me to view them on my computer than trying to see what's going on with a mirror! After treatment was over, it was nice to compare the pictures and see how much healing progress had been made. He also took pictures monthly of my head so I could see how much hair had grown in.

I realize that not everyone will choose to do this, but I include it as an option. 

Also, get a binder to keep all of your paperwork in. You will get information from your doctors and nurses, and lab work, etc. I also had a spiral notebook to write questions for the doctors, and make notes. Keep all of these together and take with you to every appointment.  I printed out a weekly calendar, found here: http://www.calendarlabs.com/calendars/free-weekly-calendar.php

Daily, I recorded what I ate, how much water, BMs, (and diarrhea), morning weight, meds I took that day, and how I felt. It gives a great sense of satisfaction to check off the days of treatment, and know that they are behind you!  (SITE MANAGER – ha, just one of the many times when you will realize you made a Rear End Pun!)

Websites:

www.blogforacure.com is an online support group, where you can register for whatever type of cancer you have, and gain wonderful support during your treatment and afterwards. Many of these tips came from fellow AC patients on the site. 

National Comprehensive Cancer Network, www.nccn.org  You can view and print out the current treatment and follow-up guidelines  (you must register, but it's free). 

List of items you may need during (and after) treatment:

Gatorade canister dry powder 

Prunes, prune juice

Docusate Sodium 100 mg (stool softener) 

Senokot  (mild laxative)

Immodium or Lomotil for diarrhea 

A good quality probiotic,  (I consulted Huffman's Whole Foods in Crystal River, but any health food store should be able to help you).  I highly recommend that you use a probiotic, especially during treatment and for the next 3 months, to protect the intestines. 

Aloe Vesta Cleansing  Foam -  this is a non irritating peri-anal cleaner, very soothing, one puff does the job!  You may be able to get it at your pharmacy or medical supply store , or it is available on Amazon. The only soap product I used on the privates during and after treatment until things went back to normal.

RadiaPlex Rx  cream (prescription) 

Regenecare  HA,  non prescription, with Lidocaine 

Recticare cream, highest amount of Lidocaine available without a prescription, relieves pain, (available at Walgreens and Rite Aid).

Lidocaine jelly 2% prescription, is helpful for relieving pain and for suppositories

Preparation H suppositories, ease swelling and pain, good at bedtime

Squirt type bottle, an old dishwashing liquid bottle will work for this. If the time comes when it is uncomfortable to urinate on the tender skin, squirting water on the area while urinating brings relief.

Aloe wet wipes when dry toilet paper just won't do any more. 

Domeboro powders to sooth the skin. Mix in water, wring out a cloth and lay it on the irritated skin. 

A sitz bath is very helpful, or some people prefer to get in the tub frequently

Super-soft toothbrush

Protein powder supplements (see nutrition)

NOTE:  Always tell your doctor about any meds you are taking, even over the counter! 

Get a prescription for a wig from your oncologist. Your medical insurance may pay for a "medical needs hairpiece". Visit a wig shop and try them on as early as possible. It is much easier to match your own hair. I chose to select mine, keep it on a list just in case, and purchase it only when the need was evident. Not everyone loses all of their hair with this treatment, so don't spend the $$ unless you actually need to. Some people prefer to wear attractive hats and scarves instead. 

A well-wrapped ziplock freezer bag with ice will provide soothing comfort for the areas that feel sunburned.

Make sure you share any unpleasant symptom with your physician, even if it seems insignificant. Many side effects can be minimized if reported. 

WATER intake during chemotherapy especially, is very important. You should aim for at least 4 pint bottles of water daily or 8 - 8 oz glasses.  This helps flush the toxins from your system, benefits the kidneys, and boosts your energy. Also helps to prevent constipation.  If you use caffeinated beverages, you must double to amount of water per serving. Example: 1 cup of coffee, take in two cups of water to counteract diuretic effect. 

Surgical type gloves can come in very handy during treatment. You may be able to get your oncology nurse to give you a few. Cut the fingers off so that each glove yields 5 "finger covers" This is much less messy when applying ointments and inserting suppositories.

Prevention of infection: 

White blood cell count tends to be depressed when having chemo, so you are more susceptible to infection at that time. Change your linens and towels every 5 days, and launder in hot water, and keep your bathroom clean, especially the sink top. I found it handy to keep a container of antibacterial cleaning wipes near the toilet for quick clean ups. Use these also to wipe off door handles, the TV remote, computer mouse and keyboard, telephone, etc. Avoid crowds and refrain from going to public places as much as possible, especially during the time of chemo and nadir. An infection during this time may result in hospitalization, which is obviously something none of us wants to happen. Your oncologist and oncology nurse will have instructions about taking your temperature daily and contacting them if it is elevated. They will also be monitoring your blood counts. 

Frequent hand washing is the very best way to prevent infection.

Methods to relieve discomfort:

It is important to keep your stool soft; you do not want to have a hard-formed stool. Some people tend towards diarrhea, and if you are having 3 diarrhea stools per day, discuss this with your physician. During times of diarrhea, use the Gatorade or equivalent, and stay very hydrated. 

Medications are available for nausea, which are very effective. They can also cause constipation, so use judiciously, and increase the stool softener. 

A child's ring pool toy, (not inflated too much), is an economical alternative to a rubber ring to sit on, should you need one. 

Rinse your mouth frequently, and after eating, with a pinch of soda and salt in a glass of warm water. If you develop mouth sores, your doctor will give you a prescription for Magic Mouthwash, which is soothing. It has Lidocaine in it, and holding a little in your mouth for several minutes, makes brushing easier. 

Report pain and discomfort, your doctor will have solutions for them. Radiation is like a bad sunburn; treat it as such. Keep the skin clean and dry, and apply the sulfadine cream. Hint: Using a blow dryer on cool is a very gentle way to dry delicate skin. 

Cotton underwear is a must, and many choose to forego the underwear altogether, especially when at home. I lived in a loose cotton gown or dress at home, and skipped the underwear, it was much more comfortable.

Nutrition:

During chemo, many people experience a loss of appetite, or mouth discomfort. The soda/salt rinse will help, and keep your mouth as clean as possible. It is important to keep up your protein intake, for healing. An excellent way I found to maintain nutrition was to use a protein powder supplement, found in health food stores. My particular favorite is Spiratein High Protein Meal, which is a blend of rice, soy, and pea protein. I chose to mix it with unsweetened almond milk; you can use regular milk, if you can tolerate dairy.  Some of these protein supplements taste terrible, but I can vouch for this one, especially strawberry, chocolate and vanilla. I did not like the cappuccino flavor. BONUS: add a big blob of peanut butter to the chocolate for more protein. Add berries to the vanilla, or a banana.  Request a free sample here, be specific for which one you want to try: http://www.naturesplus.com/spirutein/freesamples/

Note: whey protein is not recommended for those with anal cancer treatment. 

Wash all fresh fruits and vegetables very carefully, and eliminate them if your white blood count goes down. Vegetables should be cooked well; avoid gassy vegetables like broccoli, cabbage, Brussels sprouts, until you are recovering. Salads should not be eaten if your white count is depressed, and may cause diarrhea. Keep a good food diary, and if a particular food appeals, try it. You will quickly learn what works for you.  

Keep the faith! As you settle into your routine, mark the days on the calendar as you complete them and they will fly by!

Questions or Comments?  Send them to the webmaster (click on contact me) and the nurse will reply!

© H. M. Carter-Tripp 2012