The following excerpt is taken from Chapter
11
of Colon & Rectal Cancer: A Comprehensive Guide for
Patients & Families by Lorraine Johnston, copyright 2000 by
O'Reilly & Associates, Inc. For book orders/information, call
(800) 998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
Why do side effects arise?
Side effects of treatment can arise for several reasons.
First, the treatments commonly used today for colorectal cancer affect not
only cancerous cells, but many healthy cells as well. Radiotherapy and many
chemotherapy regimens target cells that divide rapidly, as many cancer cells
do. This targeting of fast-growing cells means that many healthy cells that
divide rapidly--cells in the mouth, intestinal tract, hair, fingernails, and
others--will be affected, too. During treatment, these cells die all at once,
instead of passing through the life cycle just a few at a time. This rapid
turnover of cells causes some of the most common side effects of cancer
treatment, such as mouth sores and hair loss.
Other side effects come about owing to the body's attempt to heal itself.
Tumor lysis syndrome, for instance, is a side effect of the body's attempt to
clear itself of dying tumor cells after certain treatments.
Many side effects of treatment are normal and pose no danger to you. Fatigue
and changes in fingernail growth are common side effects of treatment that do
not necessarily herald problems. Your oncologist should give you fact sheets to
provide you with information about side effects that are very serious, and
about which you should telephone as soon as you notice them. If your doctor
doesn't offer this information, ask.
I had CPT11 for a year. I didn't have too many side effects. I took the CPT11
together with 5-FU and leucorovin. I didn't lose my hair and unfortunately,
didn't lose any weight either. In fact, I gained 30 pounds. When I am given my
chemotherapy, the doctor also puts in a Kytril and Decadron drip. This
completely eliminates any nausea, at least for me. I have been off chemo for
four months now, so I am hoping when I get back on it, it doesn't affect me
differently since the first go-round was relatively easy.
Side effects by type
Listed alphabetically below are many side effects of treatment. Although
great variability exists in patients' reactions to treatment, the most commonly
occurring are nausea, diarrhea, abdominal cramping, mouth sores, hair loss, and
fatigue. Included within the various sections below are tips from colorectal
cancer survivors for dealing with side effects.
Abdominal pain
Abdominal pain or cramping is common following surgery, chemotherapy, or
radiotherapy for colorectal cancer.
As abdominal pain also can be a sign of intestinal blockage owing to tumor
regrowth, you should notify your doctor of this pain, especially if cramping
persists or worsens.
Many good medications are available for abdominal cramps, ranging from mild
over-the-counter remedies to narcotic substances, but often what works for one
patient does not necessarily work for another. Ask your doctor for an
appropriate treatment, and be persistent until a good remedy is found.
Dietary changes sometimes are helpful in controlling abdominal cramps. Some
patients have found that dairy, soy, fat, or wheat gluten products are not
tolerated well following treatment for colorectal cancer. Modify your diet
slowly and judiciously, and only with your doctor's approval.
Various other causes of abdominal pain exist, and are discussed in the
subsequent sections of this chapter.
Randall describes abdominal pain that persists several months after
surgery:
My colon resection was many months ago. I still have gastroenterologic
weirdness. I'm talking stools, gas, and cramps. No blood in stools, but not
"normal." The first couple of weeks after surgery, things were back
to normal. First time in two years. But then...
My colon-rectal surgeon says that there is usually a tightening of the colon at
the anastomosis, or
"that-place-where-the-two-healthy-ends-of-colon-were-stitched-back-together."
As it heals, it constricts. As it constricts, size, frequency and
other characteristics of stool change. He had me doing high-dose Metamucil to
try and "stretch" the opening back out. So far, no progress. My
anastomosis is located about halfway down of what is left of the descending
colon.
Occasionally, I will have fold-me-in-half cramps in my lower gut which
immobilize me until I can get to some place where I can at least pass
gas.
Abscess
Following radiation therapy for rectal cancer, abscesses within the pelvis
may develop. This usually occurs as a late effect if at all, but may develop
earlier in certain people.
If you have unusual and pronounced pain, fever, nausea, difficulty with
bowel movements, or the appearance of pus from the vagina or rectum, notify
your doctor immediately.
Acid indigestion (See
Nausea)
Allergic reactions
It's possible to have an allergic reaction to almost any drug, depending on
a host of poorly understood factors. Allergic reactions are more likely to
occur with high doses of a drug that is administered rapidly.
In the past, most allergic reactions were detected in the doctor's office as
chemotherapy was being administered through an IV line by drip bag or bolus
push (a bolus is the back end of a syringe, the reservoir that holds the
medication). With the advent of the continuous infusion pump, however, it's
possible to have an allergic reaction at home, hours or days after the pump has
been restocked with medication.
Allergic reactions are highly individualized to substance type, but the
symptoms are similar and include any of these: hives; itching; difficulty
breathing; tightness in chest or throat; sore throat; fever; or chills.
Appetite or taste changes
Chemotherapy and radiotherapy can affect your taste buds to the extent that
you can't taste food, or that it tastes metallic or even disgusting.
I find so many of the foods I used to love are now repulsive. Even stopped
adding sugar to my decaf. Sweet is too sweet. This scares me more than the
cancer. I always liked to eat, now I'm avoiding meals in any way I can.
I just had breakfast that consisted of two slices of whole-wheat toast and
butter. Still like the taste of salted butter, thank God.
Adequate nutrition in spite of food aversion is a very important part of
your recovery. Eat what you like, but eat as much nutritional food as you can.
Ask your doctor about vitamin supplements and liquid supplements such as
Nutrical or Ensure.
We went to a wedding today and I thought I wouldn't be able to have the good
time I used to have at affairs. Too many things driving me down: fatigue, lack
of appetite, and now a little depression over the whole situation. I haven't
had diarrhea in a week, so at least that's good. Hey, there is a bright side.
I took Zofran and Imodium tablets before leaving for the wedding, and in an
hour or so, the pill kicked in, I regained my appetite and lost most of the
nausea just in time to enjoy the wedding. I had the chicken. Maybe for the
first time in my life I'm eating "healthy." (That's when I can eat.)
I praised the Zofran god last night. I still have seven sample pills left and
will ask my doctor for a prescription this Wednesday.
Some colorectal cancer survivors note that, rather than craving particular
foods, they are repelled by them, particularly by meats. Foods that once were
favorites now have repugnant or metallic taste and scent.
I am on 5-FU with leucovorin and the taste bud problem has been progressive. I
find that some foods totally turn me off now. I used to love meat, but now have
no taste for it. I used to love bacon cheddar cheeseburgers! The idea turns my
stomach now. Used to love especially sweet drinks, can't stand them now, they
almost make me gag.
I like salt now more than ever. I have a desire for a hot dog, but I'm afraid
to try it because that too might taste different. Had pizza last night and at
least that still appeals to me. I hope I never lose my taste for pizza. One of
my joys in life was eating; now it seems a chore.
Blood clots, pulmonary embolism
At the beginning of treatment, a large abdominal tumor may shrink rapidly in
response to therapy, and may dislodge a pre-existing blood clot. Blood clots
also may form around a central catheter at any time during treatment.
If you have a central catheter, or have a large abdominal tumor and have
just started treatment, be especially aware of deep pain or difficulty
breathing that may signal a dangerous blood clot dislodging, or capable of
dislodging and traveling to the lung.
Bone pain
The colony stimulating factor G-CSF (Neupogen, Filgrastim) can cause aching
bones and joints. Ice packs may relieve this pain; if not, ask your doctor if
the dose can be lowered. Bone pain associated with G-CSF is temporary.
Severe back pain may be associated with degenerative changes to the spine
following radiation therapy. The spine is not able to sustain as high a dose of
radiation as some other organs can. Surgery to fuse spinal discs may alleviate
this pain.
Bone pain should always be reported promptly to your doctor, as colorectal
cancer can travel to and lodge in bone, and can affect abdominal and pelvic
nerves that cause pain in the spine.
Bowel obstruction
Following surgery or radiation therapy for colon or rectal cancer, one or
more bowel obstructions may develop and persist over time.
Bowel obstruction is a painful, life-threatening event. Contact your doctor
immediately if you have difficult or absent bowel movements, pain, fever, or a
small amount of diarrhea in the presence of these symptoms.
An ostomate describes how a less-careful diet almost caused him serious
problems:
You can eat things that will block your intestine and keep things in there for
much too long. Then you need to go out and get the medical equivalent of Drano
or a sump pump. I ate raw pecans and my digestive tract wasn't quite up to that
yet, and it got about 95 percent through and stopped, and the intestine got
distended. They literally go in with a tube and suck out what's clogging things
up. I wasn't admitted to the hospital for this. I went to the ostomy nurse and
said, "I feel bad," and pointed to my stomach. They said, "Yeah,
you screwed up." They go through the stoma with a tube about six inches
long and an inch in diameter and flush water in--I think 100 ccs--then they
suck it out and loosen up whatever's there.
If you have an ileostomy, only a blockage makes it hurt. The nerves in the
small intestine seem to be much different from the large intestine. Things like
volume and pressure of gas buildup don't hurt like they do in the large
intestine. The small intestine just keeps pushing things on through. It doesn't
hold material like the large intestine.
Breathing problems
Call your doctor immediately if you have trouble breathing.
Many treatments for colorectal cancer, such as monoclonal antibodies,
radiation, or certain chemotherapy drugs that affect the heart, such as
5-fluorouracil, can cause difficulty breathing.
Rapid breathing (tachypnea) can be the body's effort to lower levels of
excessive acid, called acidosis. Acidosis is a very early sign of certain
conditions such as serious infection, kidney damage, or diabetic complications
that should be treated immediately.
Rarely, circulatory or respiratory distress can be linked to untreated,
intractable constipation.
Bruising, bleeding
If your chemotherapy is administered directly to the liver via portable
infusion pump, you might experience gastrointestinal bleeding, which should be
reported to your doctor immediately.
See also Pancytopenia.
Chest pain
Report this symptom to your doctor immediately.
Those receiving 5-fluorouracil therapy may experience a constricting type of
chest pain known as angina.
See Heart damage.
Cognitive changes
Many patients report that treatment makes them feel fuzzy-minded or
forgetful. These symptoms should go away over time.
Rarely, more serious cognitive changes may occur. Fluorouracil and certain
platinum-containing drugs are capable of causing delirium or dementia.
Call your doctor if these symptoms are very disturbing, or if you or a loved
one feel that these side effects represent a danger to the patient or the
family.
Constipation
Constipation can be a very serious problem during colorectal cancer
treatment, because inactivity, tumor regrowth, other illnesses, and certain
drugs such as painkillers, antidepressants, or antihistamines may slow or
paralyze the intestine, or mask the urge to move one's bowels.
Constipation in its most serious form, a total blockage of the intestine
called fecal impaction, can present as circulatory or respiratory distress.
Call your doctor immediately if you feel constipated for more than three days,
or if you have difficulty breathing or symptoms of heart failure. Fecal
impaction can be fatal even in the absence of a tumor.
If your doctor agrees, experiment with small amounts of different foods
until you have a sense for what will maintain a balance between constipation
and diarrhea. This balance is especially important directly after surgery, when
dietary roughage can cause too much soft stool before adequate healing has
occurred.
Increased fluid intake, regular exercise, increased dietary fiber, warm or
hot drinks, privacy and quiet time in the bathroom, easy access to toilet or
bedside commode, and stool softeners may be tried to ease constipation. Do not
make dietary changes or greatly increase your fluid intake without first
verifying these choices with your doctor.
Dehydration
If you suspect you are dehydrated, call your doctor immediately.
Dehydration is a very serious side effect of vomiting or diarrhea, for
cancer patients must have adequate fluid to remove from the body toxins as well
as proteins released by dying cells. Moreover, the quantities of electrolytes
and minerals such as phosphorus, calcium, potassium, magnesium, and sodium may
be disrupted in the colorectal cancer patient, both by disease and by
treatment. Dehydration exacerbates this imbalance.
The most reliable symptom of dehydration is thirst. Other signs include the
inability to urinate about once an hour, the production of very little urine,
or the production of urine that is both dark and low in volume. Other symptoms,
such as faintness, dry lips, thick saliva, or loss of appetite resemble the
side effects of some chemotherapies too closely to be reliable indicators of
dehydration.
Take in as much fluid as possible, but do not drink products containing
electrolytes (as do the products marketed to sports enthusiasts) unless your
doctor says that your kidneys are in good condition and that these drinks will
do you no harm.
Diarrhea
Removal of most or all of the large intestine frequently results in
diarrhea. Radiotherapy targeting the abdomen or chemotherapy also may cause
diarrhea, as dying cells are shed from the intestine.
About halfway through my chemotherapy treatments I suffered terrible diarrhea.
I thought my colon would turn itself inside out. The oncology nurses kept
telling me the usual things like low fiber, small frequent meals, no dairy, and
so on, and had me taking double, then triple strength doses of Imodium. This
was useless! Finally my oncologist prescribed Lomotil twice daily. It only took
about three or four doses to get it under control. After that I only took it as
needed.
Phone your doctor immediately if diarrhea is combined with a fever more than
1.5 degrees higher than your normal temperature, general malaise, severe
chills, night sweats, burning or pain while urinating, headache, neck
stiffness, coughing, or trouble breathing.
Your doctor can recommend anti-diarrheal drugs, which you will have to
balance carefully with drugs such as stool softeners to control constipation.
Experiment with small amounts of different foods until you have a sense for
what will maintain a balance between constipation and diarrhea.
The dietician, whom I met with weekly, and the doctor gave me a
restricted-residue/low-residue diet that really helped when the multiple bowel
movements returned from irritation from radiation. I never really got bad
diarrhea once I started on the diet.
As treatment neared its end, my hemorrhoids flared up terribly and my doctor
gave me Anusol HC suppositories. Ah, relief.
Administration of the drug CPT-11 (irinotecan) can cause immediate diarrhea
in some people. Addition of atropine offsets these symptoms.
My husband had diarrhea during the cycle, but managed pretty well. He had a
positive response to the drug that made it easier to tolerate. It is very
important to have an oncologist who will listen to your concerns and adjust
things to meet your needs.
One side effect of radiation was diarrhea. I couldn't be too far from a
bathroom; my back end got really sore. I used baby wipes, the non-alcohol type,
and Balmex cream. You can find both in the baby aisle of your drug store. Both
were a godsend, as were the sitz baths. If you don't have one, get one, plus a
reading rack for the bathroom with your favorite magazines or
books.
Dry mouth, difficulty swallowing
Chemotherapy for colorectal cancer can at times cause dry mouth.
Normal saliva contains an antibiotic. In the absence of saliva, dry mouth
can lead to serious dental problems that result in whole-body (systemic)
infection and tooth loss. Thus, gentle but scrupulous dental care is a must.
Avoid spicy, sour, or acidic foods. Examine your mouth daily for fuzzy white
patches that might be a fungal infection. Ask your doctor for drugs to increase
saliva flow, or for instructions for a homemade mouth rinse that can be used
several times a day.
Marsha Center, RDH, describes her dental care during treatment for
colorectal cancer:
I am a registered dental hygienist who has worked 20 years in private practice.
I was diagnosed with colon cancer, had a resection and six months of continuous
infusion of 5-FU through a Groshong catheter. While I was undergoing the
continuous chemotherapy my oncologist cautioned me about any dental work,
especially not to have my teeth cleaned. The problem is the introduction
of bacteria into the blood stream via the sulcus area surrounding the teeth.
That in turn could travel to the central catheter or weak point in my body.
Then infection would develop, requiring removal of the port, massive doses of
antibiotics, and so on. So I waited to have my teeth worked on until I was
through with chemotherapy. I am not a periodontal patient, but this caution is
even more significant for those who are.
As far as discomfort, the dentist or even the oncology staff should have access
to products [that can help]. I had mouth sores that made eating uncomfortable.
A rinse made by the oncology pharmacist made of benzocaine, tetracycline, and
other bacteriostatic ingredients was extremely helpful. Peridex has
chlorhexadine in it which kills bacteria in the mouth, but also contains
alcohol, and that was a no-no for my mouth, because it's too strong. Some
fluoride preparations can also be helpful.
Extravasation
Sometimes, chemotherapy that is administered by IV or catheter can leak out
of the vein into surrounding tissue, an adverse event called extravasation. The
reaction of the body to a high concentration of chemotherapy in the skin or
other tissue can be serious and painful. The artery or vein may be unusable for
chemotherapy thereafter; the skin may die, slough off, and fail to regrow.
Symptoms of extravasation include pain, redness, swelling, or burning at the
IV or catheter site, during or after the administration of chemotherapy. Notify
the medical staff immediately if you have these symptoms during or just after
treatment.
Eye changes
Administration of the drug CPT-11 (irinotecan) can cause production of
excess bodily fluids in some cases, manifesting as watery eyes. Addition of
atropine offsets these symptoms.
Administration of the drug 5-fluorouracil can cause watery or dry eyes.
Eye drops might help with these problems. If they do not, you might consider
consulting an ophthalmologist who is a lacrimal (tear) specialist. In extreme
cases, a surgery can be performed to reopen scarred tear ducts.
About seven months into my treatment I started experiencing constant tearing
from my right eye. My ophthalmologist said I had very small tear ducts, she
probed it, and everything was fine for about a week, when the left eye began to
tear.
After repeated probing failed to correct the problem, she sent me to a lacrimal
specialist. (I didn't even know such a specialty existed.) My oncologist said
this was totally unrelated to the chemotherapy. However, when I saw the
lacrimal doctor, his first comment was to ask if I was taking 5-FU. I have
since had duct surgery (ouch! I'd rather have another bowel resection), and I
possibly face reconstruction surgery in the next few months.
Fainting, lightheadedness, dizziness
Although dizziness is a known benign side effect of many drugs, these
symptoms can be serious side effects of chemotherapy. Notify your doctor
immediately if you experience these symptoms.
Fatigue and sleep disorders
Those being treated for cancer list fatigue as the most debilitating symptom
they experience. Ninety-five percent of those being treated for cancer report
fatigue.
Shelly Weiler describes his difficulty dealing with fatigue:
I used to have only about two or three throwaway days, as we call them. Now I'm
having as many as five throwaway days in a seven-day week. The fatigue is so
overpowering I can't really describe the feeling. It leaves me lifeless at
times and all I want to do is sleep. To me it feels like I could suddenly sleep
standing up. It comes on rather quickly and is totally overpowering. This is
more scary to me than having the cancer.
At first I even believed I would eventually get back to work. As the time goes
on this has become more than impossible because of the fatigue. I couldn't
possibly work a full day five days a week. If I went back to work even for one
day a week I'd lose my disability benefits.
I know there are a lot of caregivers who have loved ones experiencing this
fatigue. It can't be described as being "tired." That's different.
It's not like being tired from working hard or having a long day.
It's more like a hood has been put over your head and you are experiencing
almost an out-of-body experience of complete body exhaustion. It comes on
suddenly, and sometimes just a quick nap lifts the cloak from your head and you
feel refreshed. At other times it's enough to put me to sleep for nine to
twelve hours. My muscles don't ache from overwork or exhaustion, it's just a
drained feeling. At these times I'm too tired to eat even if I'm hungry. I'm
actually having difficulty describing the feeling, but I'm sure all cancer
survivors know what I'm trying to express in words.
I sometimes sit here and cry when I feel the fatigue overtaking me. I literally
have tears rolling down my face. My wife will say, "Shelly, are you
okay?" I just answer, "The fatigue is killing me. It doesn't let me
enjoy the life I have left." I'm in no pain from either the colon surgery
nor the liver damage from the disease.
Here it is almost 8:00 AM and I've been up since 5:00 AM; slept last night
about nine hours. I feel like I haven't slept at all. Does this feeling ever go
away? There is so much I want to do today and my body is just not
ready.
While being treated, you may be able to offset some of the effects of
fatigue on well-being and performance by getting as much rest as possible,
eating well, and exercising moderately. Nonetheless, you may do best to adjust
your demands on yourself to these new circumstances: let the less critical
things go, and attend only to what matters the most.
Symptoms of fatigue should improve after treatment ends; however, many
cancer survivors report fatigue years after treatment.
Sleep disorders also are common, and in some cases persist years after
treatment. Insomnia, "night horrors," and corresponding daytime
sleepiness plague many colorectal cancer survivors.
Because fatigue can have so many causes--nutritional deficit, drug
interactions, tumor activity, tumor death, inability to exercise, depression,
changed sleep patterns--it is difficult to treat fatigue with other than
trial-and-error methods. Ask your doctor for suggestions for dealing with this
problem, and see Chapter 12, Stress and the Immune System, for
additional ideas.
A web site staffed by oncology nurses for cancer survivors suffering from
post-treatment fatigue can be found at www.cancerfatigue.org.
A discussion group for those suffering from cancer fatigue exists on the
Internet. Visit www.acor.org to enroll in the Cancer-Fatigue discussion
group.
Fever, chills, sweats
Fever should always be reported to your doctor, especially if other signs of
illness accompany fever.
Fever can be the first symptom of life-threatening infection when white
blood cells have been destroyed by therapy. Unattended fever in the absence of
sufficient white blood cell numbers can be fatal, and is a medical emergency
requiring immediate attention.
After my first treatment I experienced neutropenia and was hospitalized for
five days in isolation and received antibiotics IV. Yuck! During this time they
started me on G-CSF ( granulocyte colony stimulating factor) to help the white
count. The doctor decided to keep me on these shots after the remainder of my
treatments. He said most people don't get neutropenic from these treatments,
but he thought I might have between the radiation and starting treatments
perhaps a little too soon after surgery. I would give myself the shots for four
days, beginning two days after chemotherapy ended. One time per day was not bad
after the first time I did it.
I did become very neutropenic again after the last treatment, but my doctor did
not make me stay in the hospital. I just had to go in every day for five days
and get IV antibiotics. During this time I also developed a blood clot so I
went on blood thinners for six months.
Fistulae
After surgery, chemotherapy, or radiation therapy--or simply as a result of
disease in the abdomen or pelvis--an abnormal tubelike connection called a
fistula can form between internal organs such as the bladder and the
vagina.
If you notice unusual discharges, such as urine leaking from the vagina or
fecal material or odor when you urinate, notify your doctor at once.
Hair loss and growth
Radiotherapy and many chemotherapeutic agents cause hair
loss--alopecia--although there is a wide range of individual responses to
treatment in this regard. Some people lose just a little hair; others lose all
hair, including body hair, eyebrows, and eyelashes. Others report losing grey
hair earlier than hair that contains pigment. Those receiving radiation therapy
may lose hair only on the spots irradiated, such as pubic hair.
New hair should regrow in the weeks or months after treatment. In some
instances, it might not regrow, although this is more common after radiotherapy
than after chemotherapy.
Methods to spare the scalp from exposure to chemotherapeutic agents, such as
ice-packing or tourniquets, are not recommended, because small amounts of
cancer may be sequestered in the skin or blood vessels of the scalp. Denying
chemotherapy the opportunity to kill all colorectal cancer cells may result in
failed treatment or relapse.
Conversely, interferons sometimes used for colorectal cancer may cause
excessive growth of hair, called hirsutism. Some women taking
interferon-alfa-2B report growing long eyelashes for the first time in their
lives.
Sue Browne retells her husband's experience with chemotherapy:
Chemotherapy was to start five weeks after surgery. His chemotherapy was the
standard first-round therapy, 5-FU plus leucovorin. After four months, it was
determined that this was not doing anything, and that the tumors in his liver
had continued to grow. This was too bad, because he was tolerating this chemo
pretty well, with only slight fatigue and some diarrhea, which we could control
with medications. (It has been determined that side effects and treatment
efficacy are not related; in other words, just because one has no side effects
does not mean the treatment is not working, and severe side effects do not mean
that it is working.) This news was very disheartening, and we had to pick
ourselves up and dust ourselves off to move on. Time for Plan B.
We then started CPT-11 plus Mitomycin. This time we were not so lucky on side
effects. The very next day was hiccups day; day 4 was the start of severe
diarrhea; day 8 was his "nadir" point ( lowest white blood cell count
and he ended up in the hospital); and day 12 he started losing his hair. By day
19, we had to shave it off completely because there were just wisps left. His
moustache and goatee are a part of his "signature," so he is hanging
on to them even though they are quite thin. I love to touch and kiss his shaved
head, but I can tell he is not comfortable with it, so I try to respect his
space until he is more at ease with his new look.
Hand-and-foot syndrome
Hand-and-foot syndrome, known medically as palmar-plantar erythrodysesthesia
or PPES, is a collection of symptoms of tingling, pain, soreness, loss of
feeling, swelling, and skin peeling on the fingers and on the soles of the
hands and feet. This is a common side effect following 5-FU therapy.
This syndrome usually recedes when fluorouracil therapy ends. Occasionally
therapy is halted if the symptoms become very severe. Research has shown that
PPES occurs more frequently when a continuous infusion pump is used to
administer 5-fluorouracil.
One thing to watch out for that the doctors didn't tell me about was
"hand-and-foot syndrome" or neurotoxicity. My hands and feet became
very sensitive to any type of pressure. It was painful to walk, to open a jar
or bottle. When I told the doctors about this, they became very concerned and
lowered the dose of 5-fluorouracil that I was receiving in the continuous
infusion pump.
Headache
Headache can be associated with administration of certain chemotherapy drugs
used for colorectal cancer, such as irinotecan (CPT-11). Although headache
usually is not considered serious, you should notify your doctor, particularly
if pain is severe.
Heart damage
Call your doctor immediately if you experience any symptoms that resemble a
heart attack, such as chest tightness or pain, difficulty in breathing, or
numbness in the left arm or shoulder.
Fluorouracil, a drug used for colorectal cancer, can be cardiotoxic in
certain vulnerable people when used in high doses.
Hemorrhoids
Radiation therapy can exacerbate the painful symptoms associated with
existing hemorrhoids. Common treatments for this condition include steroid
foam, steroid suppositories, and sitz baths.
High blood pressure
Phone your doctor immediately if you notice rapid pulse, fluid retention,
headache, or other symptoms of high blood pressure. High blood pressure can
develop temporarily while one is receiving 5-fluorouracil.
Incontinence
If you have had radiation therapy to tissue in or near the rectum, or
certain surgeries that remove either all of the colon or most of the rectum
including anal muscles, you may experience temporary or permanent incontinence
involving escape of fecal material or gas.
The solution to this problem depends on the cause. Ask your doctor what
options are likely to help.
Indigestion (See Nausea)
Infection
If you have a fever of more than 1.5 degrees higher than your normal
temperature, general malaise, severe chills, night sweats, burning or pain
while urinating, headache, neck stiffness, coughing, or trouble breathing,
phone your doctor without delay.
Infection can result when leukopenia, a lowering of white blood cell counts,
occurs after treatment. The danger period for most patients is five to ten days
after treatment. In general, chemotherapy is more likely to cause leukopenia
than radiotherapy.
Preventive measures include hand-washing; avoiding scratches and cuts via
gentle handling of the skin, such as using an electric razor and patting skin
dry, rather than rubbing; thorough cooking of food; reducing human contact; and
avoiding gardening and handling kitty litter.
If an infection develops, your doctor will examine you, and you may be
admitted to the hospital, placed in an isolation room, and given a combination
of immunoglobulin therapy, antibiotics, antiviral agents, or antifungal
agents.
Insomnia (See Fatigue)
Jaundice (See Kidney damage and Liver
or gallbladder dysfunction)
Kidney damage
Notify your doctor immediately if you have symptoms of kidney failure such
as unusually high or low levels of urination, difficulty urinating, swollen
limbs, yellowing skin, decreased sweat, or heart or circulatory symptoms.
Temporary or permanent damage to the kidneys may occur from tumor pressure
against the ureters that drain the kidneys into the bladder, or with
administration of certain drugs such as methotrexate.
Leg weakness
Following radical surgery for rectal cancer, unsteadiness, reduced strength,
and numbness in the legs and feet may develop. It is thought that this is
linked to surgeries that touch upon certain pelvic nerves. This side effect
should diminish in about three months if physical therapy is diligently
used.
Leukopenia (See Infection)
Liver or gallbladder dysfunction
Mild liver or gallbladder problems sometimes develop when you are fed only
by IV line (TPN, total parenteral nutrition). These problems usually go away
when you resume eating normally.
Scarring of the liver, called biliary sclerosis, can occur when an infusion
pump delivers chemotherapy directly to the liver. Transient liver problems
might result. Thus, if you are receiving chemotherapy directly to the liver
(hepatic artery infusion or HAI) via pump, the side effects listed in the
following paragraph are particularly germane. Some researchers believe that
concurrent administration of corticosteroids such as prednisone can reduce
scarring of the liver.
Because liver problems can be a sign of relapse, you should notify your
doctor immediately if you notice any combination of symptoms of liver
dysfunction: nausea, jaundice, swollen abdomen, pain in the upper abdomen, or
mental confusion.
Mouth or rectal pain (stomatitis, mucositis)
Most people remember stories about vomiting when they think of chemotherapy,
but treatments for colorectal cancer and other cancers actually may affect the
entire gastrointestinal tract, from mouth to anus.
If you experience severe mouth sores, rectal pain that feels like
hemorrhoids, or painful or bloody bowel movements, don't suffer in silence.
Painkillers, suppositories, and perhaps IV feeding for about a week will help
immensely. Some oncologists may prescribe a rinse called Magic Mouthwash that
contains a painkiller, an antibiotic, and an antifungal.
Sucking on ice cubes or ice pops helps reduce or prevent the development of
mouth sores and sore throat. I think that the idea is to cool the mouth down to
reduce blood flow to the mouth area and thus reduce the amount of chemotherapy
going to that area. In any event, it works. The suggestion is to start ten to
fifteen minutes before treatment, continue during chemo and for about ten to
fifteen minutes after. The down side is a keen aversion to ice pops! I cannot
look at, or think about, that particular brand of ice pop without getting the
shivers. Maybe it will pass with time.
Nail changes
Many colorectal cancer survivors report differences in the quality of
fingernail and toenail growth during and after treatment. This problem is
temporary, and will resolve on its own after treatment ends.
Nausea and vomiting
Phone your doctor immediately if nausea and vomiting are combined with any
of the symptoms described previously under Infection.
Nausea and vomiting are the result of some, but not all, of the drugs and
radiation treatments used for colorectal cancer treatment. Nausea associated
with radiation therapy usually occurs only if the area just above the navel is
irradiated. Nausea accompanying 5-fluorouracil administration is common.
It's important that nausea and vomiting are controlled, not just to reduce
suffering, but to allow your body to absorb nutrients to heal, to keep you well
hydrated and thus able to flush chemotherapy drugs from your body, to support
your kidney function, and to allow for uninterrupted sleep during which the
immune system is rebuilt. You should not suffer nobly through nausea and
vomiting as a mark of strength: you may harm yourself if you do.
Fortunately, excellent drugs are available today to control nausea and
vomiting. Zofran (ondansetron) and Kytril (granisetron) are two such
anti-emetics, and anti-anxiety drugs such as Xanax, a drug similar to Valium,
may work for brief episodes of nausea. Some steroids such as Decadron also
work, for reasons that are unclear. Older, less effective drugs, such as
Compazine, are also still in use, sometimes in combination with newer
drugs.
Take your antinausea medications on time, even if you feel well. They work
by priming your body before nausea sets in. Moreover, if you wait to
take them until you feel bad, you may lose them as you vomit.
Keep your doctor informed about the success of these drugs, because they can
be recombined and substituted by others until a good solution is found.
Some oncologists start by prescribing older, less expensive nausea drugs
because their use is more acceptable to insurance companies--even though many
patients report that drugs such as Zofran are more effective than other drugs.
If your pharmaceutical insurance option is liberal, tell your doctor so that he
will feel free to prescribe his best choice first.
Sometimes just the aroma of food can bring on nausea. If so, you might try
eating foods that have been chilled.
If you are unable to keep food down in spite of nausea medication, feeding
by IV line for a period of time will give your stomach a chance to recover.
Anticipatory nausea also is normal for many cancer patients. If you had
treatment in the past that made you ill, during subsequent visits your central
nervous system may react with nausea to visual cues or odors in the doctor's
office before treatment is begun. You're not crazy: many people report this
reaction, even years after treatment.
My husband took CPT-11 for seven months. He was on the four-weeks-on,
two-weeks-off schedule. To help with side effects, we lengthened the infusion
time from ninety minutes to two hours. In addition to the Decadron and Zofran
which he took prior to the infusion, he often took Zofran every eight hours for
several days after. Some people have their nausea controlled better with Kytril
or Ativan rather than Zofran.
Neutropenia (See Infection)
Numbness and tingling
Peripheral neuropathy, which may include numbness, tingling, or pain in
hands and feet, is sometimes seen after platinum-based therapy, such as
oxaliplatin. Peripheral neuropathy associated with oxaliplatin is temporary; no
treatment exists yet for this side effect.
Neuropathies of the pelvis may follow radiation therapy for rectal cancer,
including pain, loss of sensation, or loss of bladder or anal control. These
side effects are more pronounced when intraoperative radiotherapy (IORT) is
used.
See also Hand-and-foot syndrome.
Pain
Pain can be caused by surgery, by drugs used for colorectal cancer, or by
radiation therapy.
Postsurgical pain may persist for months or years following treatment.
Although advanced surgical techniques are used to reduce pain, chiefly by
avoiding nerve groups, the surgeon's primary concern is the curing of cancer by
removing all diseased tissue. At times, healthy tissue must be sacrificed in
order to achieve this goal. As a result, a variety of persistent painful
phenomena might be experienced by colorectal cancer survivors, such as pelvic
pain that spreads to other body parts, perineal pain, or phantom anus syndrome,
a sensation of pain in nonexistent tissue after anal tissue has been
removed.
Severe back pain may be associated with degenerative changes to the spine
following radiation therapy targeted near the spine. Surgery to fuse spinal
discs may alleviate this pain. Painful radiation fibrosis, a reaction of the
immune system after exposure to radiation, can develop in any tissue that has
been irradiated. Burning perineum syndrome, a sensation of burning pain in or
near the scrotum, vagina, or near the anus, is known to occur in some
colorectal cancer survivors treated with radiotherapy.
Pain in the hands and feet or abdominal cramps may arise during chemotherapy
with 5-fluorouracil. See Abdominal pain and Hand-and-foot syndrome.
Pain during therapy that involves radiation implants may occur. Ask for pain
medication immediately if the implants or the position you must hold cause
pain. Report any unusual symptoms such as burning or sweating.
Many other examples could be listed, as pain is a symptom of many aberrant
physical processes. The best treatment depends on a correct diagnosis. Consult
your doctor or a pain management specialist to find the best treatment for your
pain.
A discussion group for those suffering from cancer pain exists on the
Internet. Visit www.acor.org to enroll in the Cancer-Pain discussion
group.
Palmar-plantar erythrodysesthesia (See
Hand-and-foot syndrome)
Pancytopenia
Pancytopenia is a lowering of all blood cells counts. It's treated with
transfusions of red cells, platelets, or irradiated whole blood. See Infection
for additional information.
Peripheral neuropathy (See Numbness and
tingling)
Poor wound healing
Some treatment regimens call for chemotherapy, radiotherapy, or both before
surgery in order to reduce the size of the tumor, thus enhancing the chance of
a more successful surgical removal.
Both chemotherapy and radiotherapy can cause delays in wound healing by
compromising the ability of healthy tissues to multiply and form scar tissue.
Speak with your doctor as soon as possible if you suspect your healing is not
progressing as it should.
Postsurgical confusion
Mild confusion to frank psychotic behavior occurs in some people following
general anesthesia, especially in those over age 50. Although time is the best
cure, a change in pain medication or room location might also help.
Pulmonary thrombosis (See Blood
clots)
Radiation enteritis and proctitis (RASBI)
Radiotherapy targeted to the abdomen or pelvis can cause abdominal or rectal
pain, diarrhea, bloody stools, or mucus in stools, also called
radiation-associated small-bowel injury (RASBI). It may be a short-term effect
that fades in four to eight weeks after treatment ends, or, in 5 to 15 percent
of patients, it may become a long-term chronic problem.
Interference with the absorption of nutrients is one of the chief concerns.
Enteritis is treated by controlling diarrhea with Kaopectate, Lomotil,
Paregoric, Cholestyramine, Donnatal, Immodium, or narcotics. Steroid foam may
be prescribed if the rectum is quite sore.
For some people, a change in diet might alleviate symptoms. Avoidance of
lactose, fats, wheat gluten, and high carbohydrates reportedly help some
colorectal cancer survivors with RASBI.
See also Abdominal pain and Diarrhea.
Recall sensitivities
Radiation therapy may damage tissue in a way that leaves it reactive to
further treatment for months or years afterward. Radiation to an area can cause
tissue in that area to react with pain and dysfunction when chemotherapy is
administered afterward.
Rectal perforation
Radiotherapy for rectal cancer can weaken healthy tissue such that it may
rupture. This is more often a late effect of radiotherapy, but may occur more
quickly in certain people.
If you have unusual rectal or pelvic pain, fever, unusual odor of bowel
movements, or passage of feces from the vagina, contact your doctor
immediately.
Runny nose
Administration of the drug CPT-11 (irinotecan) can cause production of
excess bodily fluids in some cases. Addition of atropine offsets these
symptoms.
Sexual problems
A variety of problems with sexual performance and enjoyment can arise after
surgery or radiotherapy for colorectal cancer.
A discussion group for those dealing with issues of sexuality following
cancer treatment exists on the Internet. Visit www.acor.org to enroll in the Cancer-Sexuality
discussion group.
Skin problems
A variety of skin problems--pain, burning, discoloration, scaling,
wrinkling, dryness, rash, hives, redness, peeling, sun sensitivity--are
associated with some treatments for colorectal cancer. Radiation therapy and
certain chemotherapies used for colorectal cancers, such as fluorouracil and
irinotecan (CPT-11), can cause skin problems.
Ask your doctor for help before tackling this on your own, because
dermatology problems can be complex and hard to diagnose, and because certain
skin symptoms, such as itching, may be a sign of an allergic response, or of
serious changes such as relapse in the liver. Common remedies, such as lotions
that contain alcohol, may make the problem worse, especially if itching is your
chief complaint or if radiotherapy is still underway.
Sitz baths, baby wipes, and Balmex are good for symptoms that follow radiation
therapy. I might add that I switched around to A&D ointment here and there.
My radiation therapists told me to tell them about any side effects and were a
great help. They gave me a purified aloe vera gel to use (don't get it over the
counter).
The way I look at it is, some people will have greater problems than others.
The main thing is speak up as soon as side effects show up, and the sooner
relief will be attained!
Sore throat
For several drugs used against colorectal cancer, sore throat is a known
side effect that is generally bothersome but not always serious. Contact your
doctor so that she can determine whether this side effect is serious in your
case, especially if sore throat is accompanied by other symptoms of allergic
reaction or by fever.
Stomatitis (See Mouth or rectal
pain)
Sun sensitivity (See Skin
problems)
Sweating
Administration of the drug CPT-11 (irinotecan) can cause profuse sweating in
some cases. Addition of atropine offsets these symptoms.
Tumor lysis syndrome
The waste products of a tumor as it dies may disrupt natural levels of body
substances such as electrolytes or antidiuretic hormone.
Tumor lysis syndrome, arising from the death of large tumors, may arise
shortly after chemotherapy is started. Symptoms of kidney failure owing to
excessive amounts of calcium, phosphate, and potassium being released by dying
tumors are noteworthy, and can be offset with oral or IV hydration, careful
monitoring of electrolytes, and use of diuretics.
If you or your loved ones notice any unusual symptoms, especially excessive
thirst, unusually high or low levels of urination, swollen limbs, yellowing
skin, decreased sweat, abdominal pain, or heart or circulatory symptoms, call
the doctor.
Ulceration
Following radiation therapy, healthy skin that was in the path of the
radiation beam might ulcerate. The condition might become chronic.
See Poor wound healing for more information.
Urinary problems
Radical pelvic surgery may affect urination by damaging tissue or nerves, or
by causing adhesions--stringlike scar tissue--to develop and constrict the
bladder or ureters.
Radiation therapy that cannot avoid the bladder may cause temporary or
permanent changes in bladder function. The bladder may become less elastic, and
the urge to urinate may become more frequent.
Urinary problems should be reported to your doctor promptly, as tumor
pressure upon the bladder, or upon ureters that drain the kidneys into the
bladder, also can cause urinary problems.
Water retention (See Urinary problems,
Kidney damage, and Heart damage)
Weight loss
Most chemotherapies as well as radiotherapy for colorectal cancer cause
rapidly dividing cells to die more frequently than other cells. As the cells
lining the gastrointestinal tract are rapidly dividing cells, when these are
exposed to anticancer drugs, they die sooner than their natural cycle would
dictate. As a result, it may become difficult to absorb nutrients during
treatment for colorectal cancer; the effect is made worse if nausea and
diarrhea are present.
If you are losing weight during treatment, notify your doctor.
See the suggestions included under Appetite or taste changes,
Diarrhea, and Nausea and vomiting.