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People can have a wide range of responses to chemotherapy, even if they're receiving the same drug and dose.


[D]uring your first treatment visit it would be wise to have a friend or loved one along, not only for emotional support, but to handle [practical matters]....


Don't arrive with an empty stomach. Eat light food up to two hours before treatment.


[S]tore a bucket in your car against the possibility of nausea during the ride home.


[Y]ou might prefer scheduling your treatment to occur just before the weekend so you'll have a couple of days to adjust and recover....


Your first visit is a good chance to begin to make friends with the nursing staff.


You may find as well that your fellow patients in the waiting or treatment areas have good insights to share about experiencing chemotherapy.

Experiencing Chemotherapy


The following excerpt is taken from Chapter 8 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.

Preparation

People can have a wide range of responses to chemotherapy, even if they're receiving the same drug and dose. You don't know for certain how you'll respond, so it would be best to make sure you have certain supplies and assistance if you need them. Some of the drugs given for chemotherapy or to prevent side effects can cause drowsiness or affect concentration, for instance, or you might be sitting for many hours in a room that is overly warm or too cool.

My advice is to begin receiving treatment with an open mind and the attitude that you will have no side effects. You may not have any. I've been on 5-FU/ leucovorin for nine months so far, and I've not had any mouth sores. Chemotherapy is different for each patient, and sometimes each treatment is different. My experience is that my first few treatments were without any side effects at all. As I continue (I have it every other Thursday) sometimes I have what I call chemo sickness. I just feel bad, no vomiting or trots to the bathroom as some patients have, I just feel tired and don't want to do much. I don't always get those feelings, and oftentimes when I do, I force myself out of the house and mow the lawn or get busy with something to take my mind off how I'm feeling. It really works for me.

For these and other reasons, during your first treatment visit it would be wise to have a friend or loved one along, not only for emotional support, but to handle issues such as safely tucking away written instructions for diet and aftercare; understanding and remembering verbal instructions; communicating insurance information; handling the co-pay, if any; and assisting with the drive home. As you adapt to treatment, you may need someone to drive if you take medication for nausea before leaving home, as many of these drugs cause drowsiness.

Comfort should be high on the list of priorities for anyone facing chemotherapy. Come prepared for a few hours' testing or treatment by wearing comfortable, layered clothing; bringing relaxing buddies or music cassettes; and asking in advance what to expect. Don't arrive with an empty stomach. Eat light food up to two hours before treatment.

I experienced many of the side effects of chemotherapy: mouth ulcers, nausea, vomiting, fatigue, a metallic taste. But there were medications to counteract these problems. We had to try more than one, but finally hit on a combination of Zofran/Decadron drip with Phenergan pills. By mid-week a shot of Ativan IV was added for nausea. That really worked well. My dentist prescribed a mouth rinse of Triamcinolone mixed with water and absolute alcohol that really numbed it.

I completed my chemotherapy a week ago. I have a glorious five weeks off before beginning Camptosar for added protection, as I am at high risk for future pelvic recurrence.

Although the antinausea drugs in use today are excellent, store a bucket in your car against the possibility of nausea during the ride home. Call the doctor a day or two in advance to get nausea medications, and take them beforehand if instructed to do so.

Before your initial treatment, ask about wearing cosmetics, jewelry, or nail polish, because skin and nail bed color are useful ways for the medical staff to assess your well-being and response to drugs. Ask about using lotions or aftershave, as these may cause skin irritation depending on the treatment being given. If you feel strongly about wearing cosmetics and nail polish to treatments to improve your frame of mind, ask them about a compromise, such as leaving one fingernail bare for visibility or for using the thimble-like oxygen sensor that slides over your finger.

Ask if your chemotherapy will be administered into an arm vein. If so, plan to wear a short-sleeved top, and bring a cardigan for the parts that needn't be uncovered and might get chilled.

Tell the staff about dental appliances, contact lenses, surgical staples, pacemakers, and other manmade materials that may interfere with treatment.

Certain drugs used for chemotherapy may react badly with certain foods or food supplements. Ask your doctor if you should avoid certain foods such as grapefruit for a week or two before or after treatment, as grapefruit interferes with metabolism of some drugs by the liver. Vitamins, antioxidants, or supplements should also be approved by your doctor before use. Potassium supplements may trigger a dangerous metabolic imbalance, tumor lysis syndrome that imperils the kidneys if you have a large tumor that is killed rapidly by treatment.

You may also receive instructions about avoiding other possibly dangerous circumstances such as excessive sunlight or crowds. Some of the drugs used for colorectal cancer cause skin to become overly sensitive to sunlight. Protective clothing, sunglasses, and sunscreen lotions may be recommended.

Scheduling

The schedule on which chemotherapy is administered is based on years of research that determine a drug's effectiveness at a certain dose and interval. Some chemotherapies are given daily; some are given weekly for several months; some are given once a month for many months. Those delivered via portable pumps may enter the body throughout the day for many days. Oral medications taken at home may be taken once a day or several times a day.

If you can't afford or don't want to miss time from work, you might prefer scheduling your treatment to occur just before the weekend so you'll have a couple of days to adjust and recover without the additional stress of meeting work responsibilities.

Don't be surprised if the schedule on which your chemotherapy is administered differs from the schedules you hear others discussing, because your schedule is likely to be tailored to your particular circumstances. You may, for instance, be receiving a drug that might be toxic to the heart, but on a less condensed schedule that is intended to lessen toxicity.

Depending on what drugs are being used, the timing of subsequent therapy may be influenced by the quantity of blood cells remaining in your bloodstream after your last treatment. Thus, for certain regimens, your blood will be tested when you arrive (or perhaps a few days in advance, if your doctor recommends or you prefer) using a standard measurement known as a complete blood count, or CBC. If your blood counts are too low, treatment may be delayed a few days or a week.

A delay of one week is not likely to affect the success of treatment, but a great many delays, or a delay of long duration, may. For this reason, oncologists sometimes prescribe either blood transfusions or injections of colony stimulating factors to bring your blood counts up to safe levels. Colony stimulating factors are manmade copies of natural body products that cause bone marrow to produce more new blood cells than it otherwise would.

Shelly describes how important it is to get treatment on schedule:

Just the other week I had a cold, but had chemotherapy anyway. I spent one whole day in bed sleeping. In general the 5-FU/ leucovorin infusion knocks me down for at least two full days. It's something I've learned to expect after chemo. I guess I will never get really used to it.

I've just learned to tolerate it and look forward to tomorrow which can always be better. Keep up the spirits and the attitude, the rest will be easier.

For therapy administered from an IV bag or syringe rather than by infusion pump, it's not unusual for one chemotherapy session to last for several hours. High-dose therapies that must be administered over several days (with or without stem cell rescue) may require a hospital admission, but the trend is toward outpatient treatment for all but the most rigorous procedures or the sickest patients.

Arrival

Often, your treatment is not started until a doctor, nurse, or medical technician has weighed you, taken your blood pressure and temperature, done a brief physical, asked you about symptoms and side effects, and drawn blood to check blood counts.

If you have a portable pump, however, you might simply be examined, refilled, and discharged.

Your first visit is a good chance to begin to make friends with the nursing staff. Oncology nurses are a unique breed, generally cheerful and unusually kind. Often they'll have great ideas for helping you that might not occur to your doctor to mention, such as where to buy satin pillow covers to reduce hair loss. Interaction with a good nurse may well be one of the finest and most rewarding experiences in life, exemplifying the best that humans can offer each other. Many oncology nurses say that they get much more from their patients than they give.

You may find as well that your fellow patients in the waiting or treatment areas have good insights to share about experiencing chemotherapy. Often, those waiting in an oncologist's office are reluctant to start a conversation with others because the people nearby seem very worried or withdrawn, or because they themselves have so much mental and emotional processing underway. You might find, though, that deep and instructive friendships are formed among cancer survivors in this setting.

After you're settled in the treatment area, waiting or being treated, consider having your companion visit the pharmacy to buy ice bags or a pill organizer, fill any prescriptions, or buy any over-the-counter drugs, including stool softeners and anti-diarrheals, that you'll need later. With this arrangement, if you feel bad or fatigued after treatment, your medications and supplies will be immediately available.

The setting

Chemotherapy may be administered in a doctor's office, in a hospital outpatient setting, or, if given in the form of tablets or a portable pump, actively or passively in your home. If it is administered in a doctor's office or outpatient department, it may be administered by a chemotherapy nurse or by the doctor. It may be administered in a large room with other cancer patients who are seated in reclining chairs in partitions divided by curtains, or it may be administered on a bed or chair in a private room.

Sometimes the setting in which chemotherapy is given is dictated by what insurance companies will pay for. Injections of colony stimulating factors, for example, which may be necessary to stimulate bone marrow, may be administered safely and easily by the patient or another at home. Some insurance companies, however, will pay for these injections only if they are administered by a doctor.

Some chemotherapies and some tumor types are known to be associated with risks that are best handled in a hospital setting. Cyclophosphamide (Cytoxin), for example, is known to damage the bladder, and is best administered simultaneously with heavy bladder irrigation such as that provided by intravenous fluids. Large tumor masses of the chest or abdomen that die quickly when treatment is started may require IV fluids to protect the kidneys only at the start of treatment. For this reason, you may be admitted to the hospital to receive these treatments.

To tell you the truth, so far the chemotherapy has not been bad. I've only just had my second week of it, but I look at it this way: At the end of each week, I get to go into a quiet, peaceful room, read a good book, watch Oprah if I desire, suck on ice chips and 7-Up, and even call a friend on my cell phone if I feel so inclined, while my combination of 5-FU and leucovorin drips into my veins. Okay, okay ... I will admit I had a small bout with diarrhea when I got home last evening, but nothing to complain about. For me, I think I made the right decision to have chemotherapy, and a positive attitude makes it all the easier.

How chemotherapy is administered

There are several different forms of chemotherapy for colorectal cancer, and different ways to administer it.

Portable (Ambulatory) Pumps

Some studies have shown that, for certain patients, a continuous infusion of anticancer drugs for colon and rectal cancer is more effective than a single weekly administration. By using a portable infusion pump, it's possible to have certain anticancer drugs administered throughout the day for many days, or to have multiple drugs delivered at the same time. These pumps can be programmed to deliver, or not deliver, a steady or varying dose of drugs for hours, days, or weeks.

If you have a venous access device such as a central (chest or neck) catheter or a peripheral (arm) catheter, most likely it can be used for delivering drugs via portable pump. If you don't have a venous access device, almost certainly one will be put in place before treatment starts. A very small battery-powered pump--about the size of a paperback book--is connected to this line. The pump can be implanted under the skin, or carried in a satchel that you can wear around your waist or over your shoulder.

I am 72, and am in the sixth week of a six-month course of continuous infusion of 5-fluorouracil and leucovorin. I had a hemicolectomy three months ago; I was diagnosed as stage III with two of 35 nodes containing tumorous tissue that had spread, but no other metastases were detected.

My 5-FU is infused continuously 24 hours a day through a Mediport implanted in my chest and powered by a battery-operated pump contained in a fanny pack weighing about 1-3/4 pounds. It's a nuisance I've gotten used to, and I have no trouble sleeping, driving, shopping, working in my shop, showering, and so on. I get new batteries, a 5-FU refill, and a dose of leucovorin every Wednesday at the USCF/Stanford Oncology clinic. So far, the entire process has been completely painless and I've had no nausea or diarrhea. The only side effects have been a painless rash on the backs of my hands and some irritation in my windpipe during week four. Every week of continuous infusion is followed by one week off.

I definitely recommend my Mediport central catheter rather than a PICC ( peripherally infused central catheter) line, although the Mediport was more expensive and required a surgical procedure for installation.

Portable pumps also can deliver drugs under the skin or directly into the abdominal cavity, but delivery via a vein or directly to the liver via the hepatic artery is most common.

The advantages of a portable continuous infusion pump are:

  • The possibility of a better anticancer response to chemotherapy.
  • Fewer and shorter doctor visits, yielding less disruption to your schedule.

Disadvantages are:

  • The possibility of greater side effects with continuous infusion, entailing a temporarily reduced quality of life.
  • The inconvenience of having to adjust to and carry an attached pump all day long.
  • The need to have a venous access device put in place.
  • If an implanted pump is used, it might need to be put in place while you are under general anesthesia.

Implanted and portable pumps have advantages and disadvantages as well. Implanted infusion pumps might be more expensive and require a surgery to implant, but are less likely to clot or become infected as a central venous catheter might when it is attached to an external pump.

The reservoir in your pump can be refilled weekly or on some other schedule determined by your oncologist. Implanted pumps might be accessed through the skin; external pumps and balloon reservoirs might just be replaced.

There are several kinds of portable infusion pumps, and many different regimens for delivering drugs at optimal levels. A search of the medical literature reveals some of the techniques attempted by various researchers in the last few years. These examples are given so that you'll be aware of this variety of approaches, and so that you'll have less concern if you hear of someone whose treatment schedule or pump type is different from yours:

  • A 60-milliliter reservoir pump with variable flow rates of 2, 6, 8, or 12 milliliters every 24 hours, and refilled weekly.
  • An implanted reservoir giving low-dose infusion over six to seven days for several months to two years, using balloon-style continuous infusion. Access to the body was via central venous catheter, aortal infusion, or both.
  • Two disposable balloon pumps connected to an implanted pump via a central venous catheter.
  • A pump connected to the hepatic artery via a prior surgery delivering first floxuridine continuously for seven days, and followed by a weekly one-dose pump of 5-fluorouracil for three weeks.
  • Continuous infusion via portable pump for 21 days, ceasing for 7, and repeated every four weeks.
  • Prolonged infusion for six weeks with a one-week rest period.
  • Continuous infusion for five days, followed by weekly one-hour intravenous infusions, all for seven weeks.
  • Continuous infusion for five days, followed by five-minute intravenous injections on days 12 and 19.

Intravenous therapy

Chemotherapy for colorectal cancer often is administered once a week into a vein using a temporary or semi-permanent IV line in the forearm, or by any one of a number of venous access devices (VADs), such as a central catheter that has been implanted into a large vein in your chest.

If you experience trouble with inaccessible veins, or if they worsen during treatment, discuss with your doctor the advantages and disadvantages of venous access devices such as central catheters.

Some of the drugs used will be in plastic bags that are hung from your IV pole. They may be mixed with a saline drip to dilute them as they enter your vein. Others may be injected directly into your IV line from a large syringe. This method is called a bolus push.

Some drugs used for intravenous chemotherapy are damaging if they come in contact with skin. Notify the medical staff immediately if you experience any pain, swelling, redness, or burning near the injection site.

You may feel a warm flush when certain drugs are administered. Verify with the medical staff that this is normal for your drug regimen.

My husband had severe sweats during the administration, and so took atropine about 30 minutes into treatment, and again an hour later. This helped with the sweats and with immediate onset diarrhea.

Monoclonal antibody therapy

Monoclonal antibodies are a manmade version of a natural body product secreted by our white blood cells. They are injected into a vein via an IV line or catheter.

It's possible to have an allergic reaction to monoclonal antibodies, because often they are formed from combined human and mouse antibodies. This is a very common reaction that is easily controlled, but it must be addressed immediately to keep it from becoming serious. To avoid this allergic reaction, antibodies usually are injected very slowly over several hours.

Intraperitoneal chemotherapy

For a few subtypes of colorectal cancer that escape from the primary tumor site and spread along the lining of the abdomen, injections of chemotherapy directly into the abdominal cavity, called the peritoneal cavity, might be used.

Intraperitoneal chemotherapy requires access to the peritoneum. Access is achieved in one of two ways:

  • Implanting of several tubes and drains during the surgery to remove the tumor, or during a subsequent surgery
  • Insertion of a catheter each time the treatment is given

Once tubing and drains are in place, the administration of anticancer drugs may begin as early as during surgery and may continue for five days beginning the day after surgery while you remain hospitalized. Typically thereafter, cycles are repeated for five days of each month for several months. The drugs are infused, left in place for almost 24 hours, then drained.

The medical staff administering the chemotherapy also may do imaging studies such as CT scans during or after infusion to be sure that all areas of the peritoneum are exposed to adequate amounts of anticancer medication.

Hepatic artery infusion (HAI)

Hepatic artery infusion is the delivery of large doses of chemotherapy directly to the liver, either as a multi-hour dose during surgery or in the doctor's office, or at home via a portable infusion pump. When it is administered in the doctor's office, your experience will resemble that described previously in the section called "Intravenous therapy," whereas administration by portable infusion pump is described in the section "Portable (ambulatory) pumps," earlier in this article.

In October of 1997 I had an operation for hepatic arterial infusion. This necessitated wearing a fanny pack whereby chemotherapy was infused directly into the liver for two weeks, then I had a rest of two weeks off. At the same time, I was given once a week treatments of CPT-11, 5-FU, and leucovorin. By January of 1998, I had a 50 percent reduction in size and number of my tumors (eight tumors averaging 5-8 cm). By April, my CT scan showed no evidence of liver involvement.

Oral therapy

Your chemotherapy regimen may include oral medication along with or in place of intravenous injections, or you may be given oral medication to offset nausea. You might be given tablets to take at home, perhaps several times a day, or perhaps every other day. You may be given prescriptions for anti-diarrheal or antinausea medications to take with your chemotherapy.

Although taking pills may seem easy, there are several potential issues of which you should be aware.

The chemotherapy drugs can cause some problems in swallowing pills. After several days or weeks of treatment, you may notice your mouth becoming increasingly dry as the rapidly dividing cells in your mouth die. A good habit to cultivate is wetting your mouth before attempting to swallow a tablet.

It's easy to forget what medications you've taken when you have quite a few, and when some of them are making you drowsy. Each day, keep a new list of what you must take, and check them off as you take them. Consider buying a plastic pill organizer to assure that all doses are taken.

Subcutaneous injections

Colony stimulating factors such as granulocyte colony stimulating factor (G-CSF), thrombopoietin, or erythropoietin (EPO) frequently are injected under the skin or, less often, into muscle.

If your insurance company will pay for the drug, you may be able to give yourself these injections at home. The medical staff will teach you the quick, painless poke-in-the-thigh, using pinching, stretching, or slapping to anesthetize the area first. Small syringes of the type used for insulin usually will do; they'll give you a "red bag" for needle disposal, which should be returned to the doctor's office when full, not put into the trash.

If your insurance company will only pay for these injections if they are administered in a doctor's office, you may have to make twice- or thrice-weekly trips to the doctor.

Departure

Before leaving the doctor's office, be sure you have received written instructions regarding any necessary dietary or behavioral changes, information about possible side effects, prescriptions, and phone numbers for emergencies.

Do not leave feeling unwell. If you are feeling unwell, tell the medical staff.

Use the restroom before leaving if you received your treatments via IV line. Often, IV drugs are accompanied by a saline drip. The volume of fluid that your kidneys have processed from this treatment may surprise you halfway home.

Most chemotherapy treatments do not result in infection or side effects that require hospitalization. However, occasionally such problems do occur. Carefully note all symptoms and communicate immediately with your doctor if problems arise.

Dosages

If you feel inclined to do so, you can verify your chemotherapy dosage. Most chemotherapy drug dosages are calculated based on body surface area, but some are based on other parameters such as renal function. Keep in mind that any variation you note may be planned deliberately by your doctor or may vary based on how the drug is administered--that is, by IV line, pump, or intraperitoneal infusion.

If you have a personal computer, you can access Glaxo-Wellcome's DoseCalc web site to calculate dosages automatically given your weight, height, and a drug name. DoseCalc also lists the current chemotherapy regimens used against colorectal cancer, and the milligrams per square meter needed for each drug.

If you notice a substantial difference between the calculated and actual dose given, ask your doctor why. Often there are very good reasons for differences.


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