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Always err on the side of caution and call your doctor if you're having side effects that are unexpected or unusual.


Your oncologist should give you fact sheets to provide you with information about side effects that are very serious….


Learning that I am not my body was a big part of the cancer experience for me. I felt like me, but I didn't look anything like me.


Adequate nutrition in spite of food aversion is a very important part of your recovery.


[C]ancer patients must have adequate fluid to remove from the body toxins as well as proteins released from dying cells.


I give myself permission to let the house go unkempt and to sleep in when I feel like it.


[I]t is difficult to treat fatique with other than trial and error methods.


Radiotherapy and many chemotherapeutic agents cause hair loss…although there is a wide range of individual responses….


Preventive measures include hand-washing; avoiding scratches and cuts; thorough cooking of food; and reducing human contact….


Tumor lysis syndrome, from the death of large tumors…may arise shortly after chemotherapy is started.


[A]ntinausea medications…work by priming your body before nausea sets in.


The best treatment [of pain] depends on a correct diagnosis.


Sometimes just the aroma of food can bring on nausea. If so…try eating foods that have been chilled.


Some NHL survivors who receive radiation report odd head, neck, or arm symptoms when they tilt their head or twist their neck.


[Y]our skin will be overly sensitive to sunlight, and prone to wrinkling, freckling, or premature aging, and should be protected accordingly.


One of the myths about cancer treatment is that it always causes weight loss.

Side Effects of Treatment


The following excerpt is taken from Chapter 9 of Non-Hodgkin's Lymphomas: Making Sense of Diagnosis, Treatment, and Options by Lorraine Johnston, copyright 1999 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.

Too often we recall people who have had terrible experiences while receiving cancer treatment. Yet remarkable progress has been made in alleviating this suffering. Especially impressive is the development of medications to relieve nausea and depression, and the development of low-scatter and high-voltage radiation equipment that reduces damage to healthy tissue.

This article will describe both common and serious side effects of NHL treatment, and what can be done about them. Because so many different chemotherapy regimens are used to treat the NHLs, it's not possible to list all side effects of treatment. Nor is it possible in most cases to state unequivocally which side effects are serious and which are not, as a side effect may be associated with more than one condition, and because patients' responses to treatments vary.

Always err on the side of caution and call your doctor if you're having side effects that are unexpected or unusual.

Please be encouraged that, although we list many side effects here, you may have very little reaction or no discernible reaction at all to treatment.

Although this text has been reviewed by medical doctors, the author of this book is not a medical doctor and is not familiar with the individual characteristics that make you and your illness unique. The information this chapter provides should never be substituted for your doctor's knowledge.

Report immediately to your doctor any adverse reactions that arise during or after treatment, and direct all questions to your doctor, regardless of other sources of information available to you.

Some late effects occur earlier in some people, at times even before treatment ends.

Why do side effects arise?

Side effects of treatment can arise for several reasons.

First, the treatments commonly used today for NHL 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. After 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 heal itself. Tumor lysis syndrome, for instance, is a side effect of the body's attempt to clear itself of dying tumor cells.

Many side effects of treatment are normal and pose no danger to you. Adriamycin, for example, will turn urine red; this phenomenon does not mean something is amiss. Fatigue is another common side effect of treatment that does not necessarily herald a problem.

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 for it.

It's wise to keep in mind that even commonly used drugs are known to have numerous side effects. Aspirin, for instance, is known to cause any of the following in certain people: vomiting, diarrhea, confusion, drowsiness, severe stomach pain, unusual bruising, bloody or black stools, dizziness, hearing loss, ringing in the ears, swelling of hands, face, lips, eyes, throat, or tongue, difficulty swallowing or breathing, or hoarseness. Like most other drugs, chemotherapeutic agents also are known to cause a large number of both common and rare reactions.

Before we begin discussing individual side effects, it's important to note one generality: worsening side effects may be the result of synergy, increasing in number or degree as the dose or number of drugs increase. Not surprisingly, newer, more aggressive regimens that use high doses of chemotherapy and total body irradiation cause more side effects than older, standard dosages. Keep in mind as you read what follows that a drug or combination of drugs may cause more or worse side effects if given in very high doses. For instance, the standard dose of cytosine arabinoside (ARA-C) causes suppression of bone marrow; high doses may cause damage to nerves, liver, or stomach and intestines. High-dose treatment, such as that used for Burkitt's or small noncleaved lymphoma, or in preparation for a marrow transplant, may cause stronger side effects.

A word about prednisone

Prednisone, the most commonly prescribed glucocorticoid for controlling the growth of white blood cells, can be responsible for many side effects if given in high doses, and especially if long-term use is in order following allogeneic bone marrow transplantation. Side effects include a suppressed immune response, appetite increases, rapid mood changes, insomnia, stomach pain, gastric ulcer, pancreatitis, diabetes, depression, weight gain (especially in the trunk and face), changes in blood chemistry, menstrual irregularities, impotence, facial redness, thinning of skin, stretch marks, acne, bruising, changes in bodily hair, cataracts, glaucoma, protrusion of the eyeballs, weakening of muscles, osteoporosis, avascular necrosis of bone, high blood pressure, seizures, and, rarely, psychosis.

Neeraj, a survivor of NHL/ALL, describes the effects prednisone has on his sleep and academic performance:

I take prednisone five days every twenty-eight days. Owing to those five days, my body has adjusted to a sleep cycle of 1:30 to 10:00 A.M. (advantages of being in graduate school: one can sleep till late), so the days when I have early meetings I have to really struggle. One day after getting vincristine and a spinal tap, I decided to risk not sleeping, and I ended up in the emergency room. However, I refuse to take any medication. I think I have had more than my entire family's share of medicines.
If you are taking prednisone for about fourteen days in a row as part of CHOP or a similar chemotherapy regimen, you may notice elevated mood or euphoria while taking this drug, followed by moodiness, depression, fatigue, and pain if the dosage is ended abruptly. Ask your doctor if you can taper the last two or three days of your dosage. Some physicians recommend a taper after as little as fourteen days' use. Other doctors feel that fourteen days is not long enough to disturb the interaction of the adrenal, the pituitary, and the hypothalamus, but many patients report these side effects when their prednisone dose is finished.
If it hadn't been for the energy I got from the prednisone given as part of chemotherapy, I can't imagine how I could have continued to work. There were times during that period when I felt more energetic than I had in months. I was always quite hot, though, and wearing a wig didn't help. I gained about forty pounds, and my "moon face" was so round I was unrecognizable. At Thanksgiving that year, my nieces and nephews asked their mother, "Who is that woman with Uncle Steve?" Learning that I am not my body was a big part of the cancer experience for me. I felt like me, but I didn't look anything like me.

Alphabetical list of possible side effects

Listed alphabetically are the most common and most serious side effects of treatment, with the most common being nausea, hair loss, and fatigue, although great variability exists in patients' reactions to treatment. Included within the various sections are tips from NHL survivors for dealing with side effects.


Abdominal pain

Abdominal pain might occur following treatment regimens utilizing vincristine or prednisone, but it also may signal a serious condition known as typhlitis, an inflammation of the cecum, which is the first part of the large intestine near the appendix.

Typhlitis is emerging as a side effect of newer, aggressive chemotherapeutic regimens used against lymphomas and leukemias. Phone your doctor immediately if you experience these in combination: nausea, vomiting, swollen abdomen, diarrhea, fever, and soreness in the lower right side.

Typhlitis results from unusual bacteria thriving in vulnerable parts of your intestine when your white blood cell counts are abnormally low. Your doctor can confirm this diagnosis with an ultrasound. Typhlitis also is known as neutropenic enterocolitis, necrotizing enterocolitis, or ileocecal syndrome. It's more likely to follow aggressive, high-dose treatments, and can be fatal in a high percentage of patients if not caught early.


Appetite or taste changes

Chemotherapy and radiotherapy can affect your taste buds to such an extent that you can't taste food, or it tastes metallic or disgusting.

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.

One survivor describes experiences with taste and appetite changes:

This is more annoying than anything else. I have become extremely sensitive to smells. I can smell every medication I take on my skin, in my pillows, in my excretions, etc. This causes you to look for good smelling items! Also, my sense of taste eventually changed so much that toothpaste left a bad aftertaste. I also need more salt on my foods than usual. The only thing to do is to experiment. Luckily the problem crescendos about day seven after chemotherapy and slowly gets better after that. For me, the magic taste was cinnamon. I got cinnamon mouthwash and lots of Tic-Tacs to suck on.

One of the oddest things about all of this is a craving for red meat. I began to crave/need red meat like a diabetic craves sugar when his blood glucose is too low. I have checked with others and this is a pretty common phenomenon among lymphoma patients. I would have days when I felt nauseous and dizzy and eating a hamburger cured me. Strangely, nonmeat forms of protein didn't work for this. I believe the body craves what it needs. Maybe all the meat I ate is what kept my red blood count from becoming too low?

Others note that, rather than craving particular foods, they are repelled by them, particularly by meat. Foods that once were favorites now have a repugnant or metallic taste and scent.


Blood clots, pulmonary embolism

Large tumors of the abdomen or chest are implicated in the formation or dislodging of blood clots in certain cases. At the beginning of treatment, a large abdominal tumor may shrink rapidly and dislodge a pre-existing blood clot. Chest (mediastinal) tumors may contribute to the formation of blood clots around a central catheter, as may certain imbalances in blood levels of mineral and electrolytes.

If you have a large abdominal or chest tumor, and have either just started treatment or have a central catheter, 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

Steroid drugs such as the glucocorticoid prednisone or the colony stimulating factor G-CSF 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. That associated with steroid treatment is usually transient, but may become permanent if it causes avascular necrosis of bone.

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.


Breathing problems

Many treatments for NHL, such as monoclonal antibodies, radiation, or certain chemotherapy drugs that affect the heart 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. Constipation in its most serious form, fecal impaction, can be fatal.

Call your doctor immediately if you have trouble breathing.


Cognitive changes

Many NHL patients report that treatment makes them feel fuzzy-minded or forgetful. These symptoms should improve over time, although they may improve very slowly.

More serious changes such as delirium or dementia may occur as well, often dependent on the drugs being used. Methotrexate, ifosfamide, fluorouracil, vincristine, vinblastine, bleomycin, carmustine, cisplatin, asparaginase, and procarbazine are known to cause delirium or dementia.

Steroid drugs such as the glucocorticoid prednisone are particularly notorious for causing a wide array of aberrant mental processes, ranging from minor and rapid mood swings to severe mania or depression. These changes usually develop within the first two weeks of steroid use, but this is just a general guideline, as these changes may occur at any time, including during subsequent use following an uneventful first use.

Often the actions of these drugs or the cancer itself interfere with normal levels of minerals and metabolites. This is clearly the case with prednisone, which alters levels of cortisol and adrenaline. See "Metabolic imbalances."

Treatment consists of modifying drug dose, controlling symptoms with sedatives or neuroleptic drugs, or waiting for the effects of the drug to wear off. 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 NHL treatment, because inactivity, other illnesses, and certain drugs such as painkillers, vincristine, vinblastine, 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, and can be fatal. Call your doctor immediately if you feel constipated for more than three days, or if you have difficulty breathing or symptoms of heart failure.

Constipation was a real problem because I already suffer from hemorrhoids since the birth of my daughter. The vincristine in the chemotherapy seems to just shut down your bowels. The big danger here is if you take too many laxatives you end up treating yourself for diarrhea. Then you take antidiarrheals and end up constipated again.

I finally discussed with my doctor that I had no urge, and was unable to even push to have a bowel movement for the first five days of chemotherapy. We tried a medicine called Reglan which stimulated the small bowel to contract. This took care of the problem and I never went five days again between bowel movements.

This is an embarrassing problem that people don't like to talk about, but [you should]--there is help. Before discussing this with my doctor, I tried Metamucil, Senakot, docusate sodium (a stool softener), and Biscodyl. The Reglan, even though it was a prescription, was cheaper and more effective than all of those. It even had no rebound effects that the others had. Later I would learn that my seasonal favorite, hazelnuts, provided me the helpful fiber I needed [and enabled me to] even stop the Reglan.

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. Increased fluid intake, regular exercise, increased dietary fiber, warm or hot drinks, privacy and quiet time in the bathroom, easy access to a 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

Dehydration is a very serious side effect of vomiting or diarrhea, as cancer patients must have adequate fluid to remove toxins from the body as well as proteins released from dying cells. Moreover, the quantities of electrolytes and minerals such as phosphorus, calcium, potassium, magnesium, and sodium already are disrupted in the NHL patient, both by disease and by treatment. Dehydration exacerbates this imbalance.

If you suspect you are dehydrated, call your doctor immediately.

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 too closely resemble the side effects of chemotherapy to be reliable indicators of dehydration.

Take in as much fluid as possible, but do not drink products containing electrolytes (such as 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

Diarrhea frequently is caused by radiotherapy to the abdomen as dying cells are shed from the intestine, and by chemotherapeutic drugs that disturb the balance of electrolytes such as potassium and sodium.

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.


Dry mouth, difficulty swallowing

Normal saliva contains an antibiotic. If saliva is not present, dry mouth can lead to serious dental problems that result in whole-body (systemic) infection and tooth loss.

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 a homemade mouth rinse that can be used several times a day.

Problems with swallowing that develop after radiotherapy can be corrected with surgical devices that stretch the esophagus.


Extravasation

Sometimes, chemotherapy that is administered by IV can leak out of the vein into surrounding skin, an adverse event called extravasation. The reaction of the body to a high concentration of chemotherapy in the skin can be serious and painful. The vein may be unusable for chemotherapy thereafter; the skin may die, slough off, and fail to regrow. A response resembling an allergic response, known as recall sensitivity, may happen later--sometimes even years later--if the same drug is used again, even if the drug is injected elsewhere.

Symptoms of extravasation include pain, redness, swelling, or burning at the IV site during or after the administration of chemotherapy.

Notify the medical staff immediately if you have these symptoms during or just after IV treatment.


Eye problems

Cranial irradiation, PUVA treatments for cutaneous lymphoma, or long-term, high-dose use of the corticosteroid drugs such as prednisone are known to cause cataracts, or the redness and soreness of the cornea known as keratitis, in some NHL survivors. While keratitis may resolve on its own, surgery to remove cataracts is the only known cure.
Unfortunately I developed two problems as a result of my chemotherapy. Due to insurance company politics, I went several months without treatment. The easiest one to treat was dry eye syndrome. All I needed to do was simply get lubricating drops and use them generously. The second problem was cataracts. Apparently all the prednisone has caused me to develop cataracts prematurely. The only treatment will be surgery in the future.


Fatigue and sleep disorders

Those being treated for cancer list fatigue as the most debilitating symptom they experience. 95 percent of those being treated for cancer report fatigue.
I have felt increasingly weak with each chemotherapy treatment. I've been told it's simply the build-up of toxins in my body compounded by not drinking enough. I just can't seem to drink adequately. I also give myself permission to let the house go unkempt and to sleep in when I feel like it.
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 NHL 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.

Neeraj, NHL/ALL survivor, describes his attempts to overcome fatigue:

My doctor said I got so much chemotherapy it was the equivalent of a bone marrow transplant. I have been totally off school and am going back full time next semester. I do not know what to expect with a hematocrit of 36 to 38, and hemoglobin of 11; I tend to get tired. Maybe naps in the noon would be something I should do, or maybe I will have to do. I guess I am going to start a totally new chapter in my recovery, and worst of all my mom, who has been with me for a year, won't be here (on my insistence). I would like to know what the future is going to be like in terms of energy level.


Fever, chills, sweats

Although fever is common following some NHL chemotherapies such as G-CSF or bleomycin, 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.


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 gray hair earlier than hair that contains pigment. Those receiving radiation therapy may lose hair only on the spots irradiated.

New hair should regrow in the weeks or months after treatment. In some instances, it may not regrow, although this is more common after radiotherapy, busulfan therapy, or following the high-dose treatment associated with bone marrow transplantation.

Methods to spare the scalp from exposure to chemotherapeutic agents, such as ice-packing or tourniquets, are not recommended, because small amounts of NHL may be sequestered in the skin or blood vessels of the scalp. Denying chemotherapy the opportunity to kill all NHL cells may result in failed treatment or relapse.

Two weeks to the day after the first chemotherapy, my hair started falling out. That was on a Thursday. By Saturday, I sat in my aunt's living room pulling my hair out. My daughter Courtney helped. We kind of made a joke out of it. "Hey, it's a party game," I proclaimed. All I had to do was run my fingers through my hair and it would fall out.

My aunt was a little dismayed by it all. She didn't want to take a picture of the event, saying, "I don't think this is something I want to remember." I let Courtney "buzz" the last of it the next day. She loved doing that!

I never got a wig: they all looked so fake. I got a lot of hats, but after about two weeks I got my nerve and just went bald unless I was cold. I got a "wiglet," little bangs you put in a hat, but that gave me a rash. I figured if people couldn't accept me the way I was then phooey on them.

My eyelashes, brows, pubic hair, and underarm hair followed in the next two months. I sunburned my head a couple of times, but other than being cold occasionally at night, it's been kind of nice being able to shower and be dressed and ready to go in less than ten minutes.

Conversely, two drugs used for NHL, interferon and cyclosporine, 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.


Heart damage

Radiation therapy to the chest and certain drugs used for NHL, such as doxorubicin (adriamycin), are known to be cardiotoxic. Although it is more common for damage from the anthracycline drugs to emerge slowly months or years after treatment ends, immediate and rapidly serious or fatal damage is also possible.

Call your doctor immediately if you experience any symptoms that resemble a heart attack, such as chest tightness or pain, difficulty breathing, or numbness in the left arm or shoulder.


Hypercalcemia

See "Metabolic imbalances."


Infection

Infection can result when neutropenia, 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 neutropenia than radiotherapy, but whole-body irradiation can suppress blood counts.

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 pet waste.

If you have 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, phone your doctor without delay.

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.

Even though I had "high WBC counts for a chemo patient," they were still low enough for infection to creep through. I have experienced one exit site infection around my catheter. It came on very fast, with pain in my breast, redness and drainage from the exit site. I called the doctor on call first thing in the morning since it was a Saturday. I knew I was infected and since it was eight days after chemotherapy I wasn't going to mess around. He had me report to the oncology ward at the hospital as an outpatient. There, the nurses drew blood for a CBC (complete blood count) and collected a culture of the exudate. The doctor then came by and took a look, wrote me a prescription for Keflex and sent me on my way. By Monday, it was as if it had never happened.


Kidney damage

Temporary or permanent damage to the kidneys may occur with certain drugs such as ifosfamide, CCNU, methotrexate, or cisplatin. Notify your doctor immediately if you have symptoms of kidney failure such as unusually high or low levels of urination, swollen limbs, yellowing skin, decreased sweat, or heart or circulatory symptoms.


Liver or gallbladder dysfunction

Mild liver or gallbladder problems sometimes develop when you are fed only by IV line (TPN, total parenteral nutrition), and the problems go away when you resume eating normally.

An NHL survivor describes the careful monitoring of his liver function during consolidation therapy he received for NHL/ALL:

My induction and consolidation therapies were quite intense, and the consolidation had to be curtailed a bit due to rising liver enzymes, ALT, and bilirubin. We started the maintenance therapy once the enzymes came down, but the drugs 6-MP and methotrexate (which I took both orally and via spinal taps) caused them to go up again. We tried experimenting with taking 6-MP in small doses and stopped the methotrexate to see the effect on the liver; however, mild doses of the 6-MP elevated the bilirubin and ALT enzymes. So, after a lot of deliberation, we decided to stop the 6-MP and replace methotrexate for the spinal taps with cytosine arabinoside (ARA-C). There doesn't seem to be much literature on such problems during maintenance and what one should do in a situation like this.

I am currently in the experimental phase with the oral methotrexate wherein I am gradually increasing its dose. The liver seems to be doing okay at ten milligrams of methotrexate with the ALT a little elevated to 45, and the bilirubin at 1.5. I have also noticed that the bilirubin remains around 1.0 to 1.3 generally when I go for the blood test after lunch, but goes up if I don't eat, or if I have an empty stomach before the test.

Later, during the year-long maintenance therapy he received, liver values continued to be monitored:
Blood counts go down during maintenance for NHL/ALL, but believe me, it is the easy phase. After being off school for one and a half years owing to my induction and consolidation therapies, I am doing almost everything as before while on maintenance chemotherapy. The consolidation therapy which lasted ten months has made my liver sensitive, so the doctors have had to be very careful with my maintenance dosage. I am glad that they are also giving a lot of consideration to my quality of life in this phase.


Lung damage

Cyclophosphamide and bleomycin may cause pulmonary fibrosis; methotrexate may cause pneumonitis. Notify your doctor if you have any symptoms of lung impairment such as chest pain or difficulty breathing.


Metabolic imbalances

The drugs used to treat NHL, sometimes in combination with the action of the tumor itself, may disrupt natural levels of electrolytes, minerals, insulin, or antidiuretic hormone. Hypercalcemia, an excess of calcium in the body, is associated with certain NHLs such as T-cell lymphoma/leukemia, some tumors of the head or neck, or myeloma. Disorders known as diabetes insipidus and syndrome of inappropriate antidiuretic hormone (SIADH) also may develop, or symptoms of delirium or adrenal disease may emerge.

Tumor lysis syndrome, arising from the death of large tumors and more common among lymphoblastic and small noncleaved B-cell lymphomas, 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, alkalinization of the urine prior to chemotherapy, careful monitoring of electrolytes, use of diuretics, and low initial doses of chemotherapeutic agents, such as those outlined in the French LMB81 protocol.

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, bone pain, seizures, heart or circulatory symptoms, severe mood changes, dementia, delirium, cognitive changes or psychotic behavior, call the doctor.


Mouth or rectal pain (mucositis)

Most people remember stories about vomiting when they think of chemotherapy, but treatments for NHL 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 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.


Muscle cramps

Many NHL survivors report muscle cramping, especially in the legs and at night, during and after chemotherapy. Often the chemotherapy regimen in use contains vincristine or doxorubicin.

Various remedies exist, such as quinine, calcium, potassium, or magnesium. As calcium, potassium, or magnesium can damage the kidneys, none should be used until you have discussed this issue with your doctor.

Some NHL survivors report that heat treatment, or alternating heat and cold treatment, temporarily reduces pain. Others report that vibrators, massage, or acupuncture help.


Nausea and vomiting

Nausea and vomiting are the result of some, but not all, of the drugs and radiation treatments used for NHL treatment. Nausea associated with radiation therapy usually occurs only if the area just above the navel is irradiated; nausea associated with PUVA treatment for cutaneous lymphoma occurs in 25 percent of patients.

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 body, to support your kidney function, and to allow you 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.

Phone your doctor immediately if nausea and vomiting are combined with any of the symptoms described under "Infection."

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.

Make sure you eat before chemotherapy. It helps--trust me. Also, take your nausea medications with food because they can cause nausea too. Invest in a bland food that you like: for me, it was chicken and rice soup with soda crackers. Sometimes just having food on your stomach helps alleviate the nausea.
Conversely, you may have less nausea after abdominal irradiation if you have an empty stomach when undergoing treatment.

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.

This survivor of NHL/ALL describes with humor how he dealt with nausea:

A tip for nausea is distraction. My nausea was so bad that during chemotherapy I could throw up on demand. However, one strategy that really worked for me was telling myself that I had no time for nausea and vomiting, and it helped.


Neutropenia

See "Infection."


Numbness, tingling

See "Seizures, paralysis, numbness, tingling."


Pain

Pain can be caused by several of the drugs used for NHL or by radiation therapy.

The vinca alkaloid vincristine clearly is associated with the development of peripheral neuropathy, which may include temporary or permanent pain in hands and feet. Vincristine's negative effects are made worse when G-CSF also is used.

Severe back pain may be associated with degenerative changes to the spine following radiation therapy. 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.

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.


Pancytopenia

Pancytopenia is a lowering of all blood cells counts. It's treated with transfusions of red cells and platelets, or irradiated whole blood. See "Infection" for additional information.


Peripheral neuropathy

See "Seizures, paralysis, numbness, tingling" and "Pain."


Pulmonary thrombosis

See "Blood clots."


Radiation enteritis

Radiotherapy can cause abdominal or rectal pain, diarrhea, bloody stools, or mucus in stools when the abdomen is targeted. 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 the chief concern. 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.


Radiation pneumonitis

When the lungs are in the path of radiation targeting NHL in the chest, pneumonitis may develop. The symptoms of pneumonitis resemble pneumonia, and it must be distinguished from pneumonia. Pneumonitis is treated with steroids.


Recall sensitivities

Certain chemotherapies and radiation therapy may damage tissue in a way that leaves it reactive to further treatment for months or years afterward. Drugs that accidentally leak from a vein, for instance, can cause recall sensitivity in that part of the body, even if the drug is injected elsewhere during a subsequent administration. Radiation to an area can cause tissue in that area to react with pain and dysfunction when chemotherapy is administered afterward.


Seizures, paralysis, numbness, tingling

Side effects related to the central nervous system are sometimes seen after certain chemotherapeutic agents are used for NHL.

Seizures may follow use of drugs such as methotrexate, cytosine arabinoside (ARA-C), cisplatin, or ifosfamide. Only about 3 percent of patients receiving these agents experience seizures, and it is more likely to occur in patients who have had cranial irradiation, but it is also possible that seizures will occur in a patient whose metabolic balance has been affected by NHL or its treatment. Seizures can be controlled with antiseizure medication and are usually transient.

If you are receiving methotrexate or ARA-C administered under the scalp or into the spine, you may be at risk for ascending myelopathy, which is numbness in the legs and back, and the loss of bowel and bladder control. It usually develops rapidly, and may progress to paralysis. Seizures also may follow. Usually the symptoms abate on their own, but there are instances of permanent damage and even death. Some doctors will administer these drugs only at intervals of forty-eight to seventy-two hours in order to reduce the chance of this side effect.

The vinca alkaloid vincristine clearly is associated with the development of peripheral neuropathy, which may include numbness, tingling, or pain in hands and feet, and, more rarely, twitches or palsies. Vincristine's negative effects are made worse when G-CSF also is used. Peripheral neuropathy usually is temporary, but may become permanent.

Some NHL survivors who receive radiation report odd head, neck, or arm symptoms when they tilt their head or twist their neck. Called Lhermitte sign, some report this as dizziness, and others as an odd sensation that spans the gap between noise and movement. This is most likely caused by demyelination, a temporary form of radiation damage to the material that insulates our nerves. As electric wires are insulated by rubber, so our neurons are insulated by myelin, which serves to protect our neurons from crossover of electric current and loss of signal. Lhermitte sign is an indication that two nerves are crossing over in a demyelinated area and are confusing their signals. This symptom should abate in several months.


Skin problems

A wide variety of skin problems--pain, itching, burning, discoloration, scaling, wrinkling, dryness, rash, redness--are associated with just about all of the treatments used for treating NHL. Many chemotherapies, radiation therapy, and photochemotherapy for cutaneous lymphomas can cause these problems.

Ask your doctor for help before tackling this on your own, because dermatology problems can be complex and hard to diagnose. Common remedies, such as lotions that contain alcohol, may make the problem worse, especially if itching is your chief complaint.

One survivor discusses this common reaction:

One of the most troubling things happened almost immediately. I always have had somewhat sensitive skin, but now it really got out of hand. I couldn't wear any tape or adhesives at all, they all gave me a rash. This made securing my catheter difficult. I finally had to start wearing a bra twenty-four hours a day, seven days a week, to hold the catheter in place. I couldn't wear a dressing over my catheter so I just scrubbed it daily with antibacterial soap. I couldn't use my normal moisturizer for sensitive skin and the chemotherapy was drying me out even more. I finally stumbled on oatmeal soap and cream. This did wonders, and didn't burn. I would later learn that the skin problems were caused by the action of chemotherapy on quickly replicating cells, into which category epidermal (skin) cells fall.
The change in skin color that may accompany treatment is often a tanned effect. This is not a true suntan that will protect you from the sun's rays. In fact, your skin will be overly sensitive to sunlight, and prone to wrinkling, freckling, or premature aging, and should be protected accordingly.

If you notice any unusual lesions in the treated areas, such as moles, tell your doctor.


Sore, red, stiff veins

If administered into the arms, the vinca alkaloid vincristine (Oncovin) may cause pain and swelling of veins, even if no leakage has occurred.

If you notice lengths of rigid, painful, swollen, or red veins in the days or weeks following receipt of vincristine, tell your doctor, because these symptoms are the same as those associated with blood clots.

Ice packs or warm (not hot) compresses may relieve the pain associated with veins that have reacted to chemotherapy.

To spare your veins from additional damage, your doctor may recommend that you have a venous access device such as a PICC line or central catheter installed.


Tumor lysis syndrome

See "Metabolic imbalances."


Urinary bladder pain, hemorrhagic cystitis

Drugs such as cyclophosphamide (Cytoxin), ifosfamide, CCNU, and platinum-containing drugs such as cisplatin can damage the bladder. Simultaneous administration of a drug called Mesna (mercaptoethane sulfonate), along with hydration by mouth and IV, are critical to protect the bladder from this painful and sometimes chronic condition. Sometimes this combination is administered during a brief hospital stay to allow close monitoring to guard against bladder or kidney damage:
It was a difficult process ( for me) to receive these high doses of chemotherapy followed by loads of saline to flush and hydrate my system. It meant feeling bloated for about a day, and dragging all the tubes and IV rack back and forth to the bathroom every hour or so. When I was too weak to do that, it meant pushing a call button all day and night to summon a nurse with a bedpan. And of course, it meant monitoring the output of urine, which gradually transitioned from burning to normal, until the doctor was convinced we had compensated for the toxicity of treatment. Some of this protocol must have been surprising to the nurses. I recall hearing my doctor's voice telling hospital staff at the nursing station that this would be bringing me to the point of death in order to save my life.
Radiation therapy that cannot avoid the bladder also may cause temporary or permanent changes in bladder function. The bladder may become less elastic, and the urge to urinate may become more frequent.


Weight gain or loss

One of the myths about cancer treatment is that it always causes weight loss. For any cancer treated with steroids, however, the reverse may be true.

The corticosteroid drugs used against NHL, such as prednisone, may increase appetite and cause weight gain. When treatment has ended, the weight may drop away on its own, or changes in diet and exercise patterns may be necessary to lose weight. Attempting to lose weight while being treated is not recommended. Maintaining excellent nutritional intake to help your body slough off damaged tissue and rebuild new tissue is difficult enough during treatment without limiting the intake of calories.

It's quite common to develop chubby cheeks, known as moon face, if you're taking prednisone for NHL. This accumulation of fat in the cheeks will abate after prednisone therapy ends.

If you are losing weight during treatment in spite of, or in the absence of, steroid therapy, notify your doctor.


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