Both Mitomycin and Fluorouracil, the two drugs used in the standard Nigro treatment of anal cancer, do have side effects.
Some are likely to occur and others are quite rare. Most, such as diarrhea, require treatment at the time they occur. Happily, they are “self-limiting” and will eventually disappear. The Chemo Care site provides a comprehensive list of side effects and suggestions for treating them. The National Institute of Dental and Cranofacial Research has a publication on Chemotherapy and Your Mouth. On nasea and vomiting, Cure Magazine has a five-part video series.
Mouth sores are a common reaction to these drugs. I have a history of mouth ulcers (aphthous stomatitis), as do many members of my family, and I had a major bout with sores during the first infusion, although I used the "Swish and Swallow" prescription mouthwash (a mixture of viscous Lidocaine, Maalox, and Benadryl, which may also contain other ingredients, such as an anti-fungal drug, as detailed by your oncologist). The second week was much better – and to my surprise, I have rarely had any mouth sores since, just as my oncologist promised would be the case! Subsequently I have learned that use of L-Glutamine as a mouthwash may be much more effective - and this amino acid is available in health food stores without a prescription! Several fellow anal cancer bloggers alerted me to this, and on investigating I discovered that clinical trials have demonstrated this effect. Triamcinolone Acetonide Dental Paste, a prescription drug, can be used at night to help quiet the sores so you can sleep. The non-prescription Kanka gel and liquid for "canker sores" may also help to anesthetize your sores. And a smartphone app for mucositis is available here! One more preventive: For mouth sores, an effect of 5-FU, sucking on ice chips before or during the infusion. Reports of effectiveness vary, but it can’t hurt to try this!
Another effect that may occur, but is fairly rare, is Hand-Foot Syndrome, a skin reaction to Fluorouracil in the palms of the hands and soles of the feet, affecting ability to carry out normal activities. There is some evidence that Vitamin B6 may be helpful; discuss this with your doctor. He or she may also advise reducing daily activities that stress these areas of the body as a preventive.
Acupuncture has been reported to help patients cope with chemotherapy. Ask your doctors, and other patients, if there is an acupuncture specialist they would recommend. The American Academcy of Medical Acupuncture and the National Certification Commission for Acupuncture and Oriental Medicine have practitioner lists.
During chemotherapy you may experience a loss of interest in eating, as food does taste as good even if it doesn’t hurt to eat it! Tips to overcome this problem are here.
Common Fluorouracil Side Effects (more than 1/3 of patients)
Diarrhea
Nausea
Inflammation of the mucous lining of the mouth or esophagus
Poor appetite
Metallic taste or other taste changes in the mouth during the infusion
Low Blood Counts
Less Common Fluorouracil Side Effects:
Dry skin and nail changes
Hair thinning
Hand-Foot Syndrome
Heart problems (fortunately rare; if you or any close relatives have a history of heart problems, be sure to advise your medical team)
Mitomycin Side Effects
Mitomycin’s most common effect is a low blood count. It can also cause, infrequently, nausea, diarrhea, and (reversible) hair loss, and, rarely, lung or kidney problems. A rare blood disorder known by its initials as TTP has been attributed to the immunosuppression effects of mitomycin, among other factors. There is a life-time dose limit for this drug; my oncologists referred to it as the “mean” drug. (My history of lung damage (bronchiectasis) was one factor in the decision to administer only one round of Mitomycin.) Your oncologist will discuss and monitor all these effects of this drug.
Mitigating the effects during and after treatment
During the treatment, if you have any of the digestive issues (regardless of which drug is the culprit), you can treat the symptoms.
Things to do:
Drink plenty of fluids, at least 3 quarts (yes, 12 8-oz glasses!) of water, juice, or whatever appeals to you (not alcohol!) and use a lip moisturizer.
Talk to your dentist ahead of time for tips on protecting your mouth and teeth. If you have dentures or night braces you may have to stop using them during the treatment. Use a soft toothbrush, or soft foam brush or strips, but try to keep the teeth clean. Use a rinse of 8 oz of water, 1 tsp of baking soda and 1 tsp of salt, several times a day.
Rest!
Eat as well as you can. Small frequent meals can help with nausea. Your doctor will probably give an anti-nausea drug before the infusion of the chemo. Avoid acidic foods, which will increase the discomfort from mouth sores. Other suggestions on coping with nausea are available from the National Cancer Institute, and from Livestrong. The Mayo Clinic reports on studies about the use of ginger to help with chemo-related nausea; it has long been used for travel-related nausea. Some other diet techniques are discussed in the Cure magazine.
As you are more susceptible to infection, try to avoid large groups, and anyone with a cold or otherwise not well. Report any fever or sign of infection immediately.
If the mouth sores are severe, your oncologist or dentist can prescribe a protective cream such as Triamcinolone, along with a range of antifungals, antibacterials or antivirals. (Fluconozole has been reported by many patients to have a good effect.) Report severe reactions and ask for help! If the mouth sores make it painful to talk, explain (in writing!) to family and co-workers that you will not be conversing with them until the situation eases.
Should you notice any pain or tenderness in hands or feet, signs of Hand Foot Syndrome, reduce exercise or other activities that put pressure on the palms of the hands or soles of the feet; tell your doctor immediately. But there is some evidence that walking can help avoid this problem, and is otherwise good during chemotherapy.
The chemotherapy drugs will begin to clear your system as the infusions end, and you can help with that by continuing to drink lots of fluids. The drugs continue to work for some time afterward, however, so it may take a few days or weeks for all symptoms to resolve. Your medical team will continue to monitor the effects by periodic blood work and other tests as needed.
Additional material on chemotherapy effects is here at the Scott Hamilton CARES Initiative, and on heart problems here in Cure Magazine.
For hair or skin changes, see the tips on the Look Good - Feel Better site, a collaboration of the Personal Care Products Council Foundation, Professional Beauty Association/National Cosmetology Association, and the American Cancer Society.
Your oncology team should monitor your blood for effects of the chemo (which may be increased by radiation). A low count known as neutropenia may make you more vulnerable to infection. In rare cases a very low count may require interruption of the treatment. More importantly for most patients is the need to protect against infection, and one simple means is to carry hand sanitizer and use it! And make sure your medical team is doing so.
There is evidence that a small berry, originating in Ghana, has properties that can reduce the metallic taste and make eating more enjoyable. Here’s one story about the “Miracle Fruit”- there are many others online.
Long-term issues
What to eat? -- The damage to the lining of your digestive tract (mucositis) may lead to problems with certain foodstuffs. In my case it was “raw” dairy protein – in milk, light cream, or soft fresh cheese such as cottage cheese or feta. I had to completely remove these from my diet for over a year, after two severe episodes of uncontrollable vomiting and diarrhea that hospitalized me. Fortunately, this appears to be a very rare problem. More common is discomfort as “hard to digest” foods – raw vegetables, beans, nuts, for example, are added to the diet. Go slowly, and keep a record of what you are eating so you and your doctor can identify what the problem may be.
Deglycyrrhizinated Licorice Root Extract (DGL) is a non-prescription supplement to reduce acid reflux problems, by improving the mucous lining of the stomach and intestine. Personal accounts by cancer survivors have credited DGL with helping to reduce digestive problems after chemotherapy, although there are no clinical studies about this. I’ve used DGL off and on for several years, in the event of unwise diet choices! I don't know what role it played, but I took it every day after the second hospital stay, and eventually I did recover enough to begin eating ice cream and cream sauces again. If you are having a problem during or after chemotherapy, it is worth a try.
Hair loss – Most reports by fellow patients do not indicate much hair loss, and any that was lost came back after treatment. I did not lose my (publicly-visible) hair, although there seemed to be a slight thinning effect. The pubic hair disappeared for a time, probably due to radiation effects as well as the chemotherapy. I was hoping that those nasty little chin hairs would go away, but no luck! For tips on prevening hair loss, see this New York Times blog.
Tips on coping with constipation or diarrhea follow on the next page. The Mayo Clinic offers a comprehensive look at cancer and diarrhea here.
Chemotherapy can also cause peripheral neuropathy in the hands or feet, sensations ranging from numbness and tingling to pain. Tell your oncologist immediately if you beging to experience such problems. The M.D.Anderson site has more information. Recent studies have indicated that women may experience this Chemo-Induded Peripheral Neuropathy (CIPN) years after treatment, with difficulties for balance and increased incidence of falls. Men are not exempt, the studies have just not been completed! This problem may worsen in cold weather - see these tips to help.
Chemo Brain
I have a T-shirt with the slogan: "I have Chemo Brain, What's Your Problem?" and I joke that it is my all-purpose excuse. But it is real. Symptoms range from "a fuzzy feeling in my brain" to /memory problems, trouble decision-making, and many other issues of concentration. You can reduce its effects through the coping skills laid out in *Your Brain After Chemo. A Practical Guide to Lifting the Fog and Getting Back Your Focus, by Dan Silverman, M.D. and Idelle Davidson. The authors note that a team headed by Dr. Mark Noble at the University of Rochester Medical Center autopsied rodents exposed to chemotherapy and showed that 5-FU, part of the standard treatment for anal cancer, damaged healthy cells in the central nervous system.
Research is now confirming the consequences of chemotherapy long complained about by cancer patients; see this for more information. A 2013 study of breast cancer patients provides more confirmation. And Cure Magazine assures us here and here that it is, sadly, a real complaint. There is some evidence that mental exercises help - try this web-based set!
General Guidance
*Coping with Chemotherapy by Nancy Bruning, a chemotherapy survivor, gives a comprehensive overview of chemotherapy and its effects. (Avery - a Penguin company, 2002)
*The Chemotherapy Survival Guide, Third Edition (New Harbinger Publications, 2009), is a very readable guide by two oncology nurses, Judith McKay and Tamera Schacher, dealing with general chemotherapy issues. The authors also report that 5-FU (used with other drugs) has been shown to damage cognitive ability.
* paperback available
And Cure Magazine offers an update on research here.
Why You Went through This Pain
You may be depressed as you struggle through chemotherapy (one patient calls this the “Chemotherapy Blues.”) As you work through to recovery, remember that these drugs, ugly as their effects may be, are saving your life – and your bowels. And there might even be other benefits- my arthritic thumbs are better now! I still don’t understand exactly how the chemotherapy did this, but I accept my doctor’s prediction that it would happen. The treatment is brutal, and the recovery can be a struggle, but the prognosis is better than that for patients with many of the more common cancers. (See the separate tab for discussion on recovery and long-term coping. And here's a music video that will empower you to get through the treatment!