Cyclophos­phamide: Patient Infor­ma­tion Book­let (2009)

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1. What is cyclophos­phamide?
2. What should my doc­tor know before I start treat­ment?
3. Who should not take cyclophos­phamide?
4. What can I expect dur­ing my treat­ment?
5. Man­ag­ing Con­sti­pa­tion
6. What can I expect after my treat­ment?
7. Are there any side effects with the treat­ment and how can I man­age them?
8. How to man­age mild side effects of cyclophos­phamide?
9. How to man­age seri­ous and impor­tant side effects of cyclophos­phamide?
10. Will I have to have any tests while tak­ing cyclophos­phamide?
11. When will I need to see my neu­rol­o­gist while on Cyclophos­phamide?
12. Is there any­thing that I need to be aware of while tak­ing cyclophos­phamide?
13. What else do I need to know?
14. While on treat­ment, notify your doc­tor if
15. Addi­tional Resources & Information

1. What is cyclophosphamide?

Cyclophos­phamide is a drug used to treat cer­tain types of neu­ro­log­i­cal con­di­tions. Cyclophos­phamide was first devel­oped and is still used to treat some kinds of can­cer. It is also used for var­i­ous other con­di­tions such as lupus and rheuma­toid arthritis.

It is a type of med­ica­tion called Immuno­sup­pres­sants. These are drugs that decrease the activ­ity of the immune sys­tem. This can be ben­e­fi­cial in the treat­ment of some neu­ro­log­i­cal conditions.

imageCer­tain cells in your immune sys­tem can attack your brain, spinal cord, mus­cles or nerves. Cyclophos­phamide can help pre­vent these cells in your immune sys­tem from attack­ing. This may help reduce the symp­toms of your neu­ro­log­i­cal condition.

When treat­ing neu­ro­log­i­cal con­di­tions cyclophos­phamide is used at much lower doses than when it is used for cancer.

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2. What should my doc­tor know before I start treatment?

You and your doc­tor will need to talk about the pos­si­ble risks and ben­e­fits of this treat­ment. For you and your doc­tor to decide if this med­ica­tion is right for you, your doc­tor will need to know the fol­low­ing information:


  • All of the med­ica­tions you are tak­ing, includ­ing non-​prescription med­i­cines and nutri­tional supplements
  • If you have any drug aller­gies or sensitivities
  • If you think you may be or are plan­ning to become pregnant
  • If you are breastfeeding
Tell your doc­tor if you have now or had in the past:
  • Can­cer or benign tumours
  • Pre­vi­ous treat­ment with chemother­apy or radi­a­tion therapy
  • Blood-​clotting problems
  • Unusual or unex­pected bleeding
  • Ane­mia or low red blood cell counts
  • Low white blood cell counts
  • Infec­tions (urine, lung, wound, etc.)
  • Liver or kid­ney dis­ease problems
  • Any other sig­nif­i­cant health problems

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3. Who should not take cyclophosphamide?

Women who are preg­nant, try­ing to get preg­nant or breast­feed­ing should not take cyclophos­phamide because it may be harm­ful to the baby.

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4. What can I expect dur­ing my treatment?

  • Cyclophos­phamide is infused into the vein in your arm
  • It is usu­ally given over a 3 year period as fol­lows: once every 4 weeks in the first year; then every 6 weeks in the sec­ond year and every 8 weeks in the third year. How­ever, your doc­tor will deter­mine an infu­sion sched­ule that is right for you.
  • While the treat­ment takes 23 hours, count on spend­ing almost the whole day (8am to 2pm) in the Neu­ro­log­i­cal Day Cen­tre because you may also need to have blood/​urine tests and see a doctor.
  • As part of your treat­ment, you will be given an anti-​nausea drug and an intra­venous steroid (Solumedrol)
  • Once a sched­ule has been set, it is impor­tant not to miss a dose. If you can­not keep an appoint­ment, please call and resched­ule right away.

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5. Do I need spe­cial mon­i­tor­ing dur­ing the treat­ment (infusion)?

A nurse will take your tem­per­a­ture before the treat­ment. Your pulse and blood pres­sure will also be mon­i­tored before and after the treatment.

You will also be mon­i­tored for aller­gic reac­tions, which are very rare, and for other side effects as fol­lows. Notify the nurse if you expe­ri­ence any side effects dur­ing or after your treatment.

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6. What can I expect after my treatment?

Gen­er­ally the med­ica­tion is well tol­er­ated. You may expe­ri­ence some nau­sea and loss of appetite in the days fol­low­ing your treat­ment. You will be given a med­ica­tion to help con­trol nau­sea that you can take as needed after treat­ments. Some patients feel tired (fatigued) for a num­ber of days fol­low­ing their treat­ment. Speak to your doc­tor or nurse about how to man­age fatigue if this becomes a prob­lem for you. Other pos­si­ble side effects are described below.

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7. Are there any side effects with the treat­ment and how can I man­age them?

Nor­mal body cells can also be affected by cyclophos­phamide. This is the rea­son for many of its side effects. Each person’s body reacts dif­fer­ently to med­ica­tions so please keep your nurse and doc­tor informed of any side effects you have.

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8. How to man­age mild side effects of cyclophosphamide?

Most side effects of cyclophos­phamide are mild. They can be man­aged using the tips below:

The nau­sea asso­ci­ated with cyclophos­phamide is usu­ally mild and lasts for less than 24 hours. Your doc­tor may give you a med­ica­tion before and after your treat­ment to help con­trol your nau­sea. You can also:

  • Avoid eat­ing for at least a few hours before your treatment.
  • Eat small, fre­quent meals through­out the day.
  • Avoid eat­ing sweet, fried, or fatty foods.
  • Drink cool, clear, unsweet­ened fruit juices, like apple or grape juice.
  • Avoid odours that bother you, like cook­ing smells, smoke, or perfume
  • Rest in a chair after eat­ing. Do not lie flat for at least 2 hours after a meal.
  • Breathe deeply and slowly if you feel nauseated.
  • Take antacids, such as TUMS.
  • Place a cool wash­cloth on your forehead.

Fatigue (feel­ing tired) is com­mon, espe­cially in the first 48 hours after treat­ment. If you feel fatigued after your treatment:

  • Rest as much as possible.
  • Ask for help from fam­ily and friends to help con­serve your energy.

Hair thin­ning or loss
Most peo­ple have only slight hair thin­ning, which is usu­ally tem­po­rary, when treated with cyclophos­phamide for neu­ro­log­i­cal prob­lems. If your hair thins while on treat­ment, try the following:

  • Use mild shampoos.
  • Use soft hair brushes.
  • Use low heat when dry­ing your hair.
  • Do not color or perm your hair.

Men­strual Changes
Some women tak­ing cyclophos­phamide may expe­ri­ence changes in their men­strual peri­ods. You may have a heav­ier, or a lighter men­strual flow. For some women, men­stru­a­tion stops.

  • Talk to your doc­tor if you notice any changes in your men­strual cycle while you are tak­ing Cyclophosphamide.
  • It is impor­tant to use birth con­trol if you are sex­u­ally active to avoid preg­nancy while on treatment.

Mouth sores
Some peo­ple develop sores in their mouth while on cyclophos­phamide. To pre­vent or help min­i­mize the dis­com­fort asso­ci­ated with mouth sores, you can:

  • Brush your teeth and rinse out your mouth sev­eral times a day. Avoid mouth­washes that con­tain alco­hol; try rins­ing with bak­ing soda and warm water.
  • Use a straw for drink­ing to keep liq­uids away from sore areas in your mouth.
  • Avoid acidic or spicy foods, caf­feine, and alco­hol, as they can irri­tate a sore mouth.
  • Avoid smok­ing as it can make it harder for your mouth to heal.

Easy bleed­ing or bruis­ing
Some peo­ple notice that they bleed or develop bruises more eas­ily while on cyclophos­phamide. You should:

  • Avoid con­tact sports where injury could occur for 14 days after each treatment.
  • Use a soft tooth­brush and check with your doc­tor prior to hav­ing den­tal work done.
  • Notify your doc­tor if you notice any unusual bleed­ing or bruis­ing; black, tarry stools, blood in urine or stools; or pin­point red spots on your skin.

Metal­lic taste in your mouth
This is due to the dose of intra­venous (IV) Solu-​Medrol that you will receive before each dose of cyclophos­phamide. This will likely go away by itself in a few hours. How­ever, if this occurs:

  • Gum, lozenges, or hard candy may help lessen the taste.
  • Gar­gling can help.
  • Cit­rus drinks may help; drink­ing water may worsen the taste.

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9. How to man­age seri­ous and impor­tant side effects of cyclophosphamide?

Some seri­ous and impor­tant side effects that you can have with Cyclophos­phamide include:

Infec­tion due to low blood counts
Cyclophos­phamide can tem­porar­ily lower the num­ber of white blood cells in your blood. This can increase your chance of get­ting an infec­tion. This period of low white blood cells often occurs approx­i­mately 9 to 14 days after your treat­ment. Your doc­tor will check your blood counts around this time. Your white blood cells will return to nor­mal 1728 days after your treat­ment. You should:

  • Avoid crowds and peo­ple who are sick 9 to 14 days after your treatment.
  • Wash your hands frequently.
  • Notify your doc­tor imme­di­ately if you think you are get­ting an infec­tion or if you have any of these problems:
    • You get a get a fever or chills.
    • You get a cough.
    • It is dif­fi­cult or painful to urinate.
    • You have lower back pain.

Decreased platelet counts
Your platelets may decrease 914 days after your treat­ment, and return to nor­mal 1728 days after your treat­ment. Platelets help to make your blood clot when you hurt your­self. Decreased platelet counts may make you bleed or bruise more eas­ily than usual. To help pre­vent bleed­ing problems:

  • Avoid con­tact sports that can lead to injury for 14 days after your treatment.
  • Use cau­tion with sharp objects such as razors and nail clippers.
  • Blow your nose gently.
  • Avoid con­sti­pa­tion by drink­ing flu­ids such as water, eat­ing high fiber foods such as fresh veg­eta­bles and whole grains, and by doing reg­u­lar phys­i­cal activity.
  • For any minor main you may have such as headache, take aceta­minophen (e.g. Tylenol). Do not take ASA (e.g. Aspirin) or ibupro­fen (e.g. Advil, Motrin).
  • Notify your doc­tor imme­di­ately if you have signs of bleed­ing prob­lems such as black, tarry stools; blood in urine; fre­quent need to pass urine or pain when you pass urine.

Hem­or­rhagic cys­ti­tis
Cyclophos­phamide can cause your blad­der to become irri­tated. This irri­ta­tion is called cys­ti­tis. It may cause you to have blood in your urine or may scar your bladder.

  • Drink plenty of flu­ids (812 cups of non-​caffeinated, non-​alcoholic bev­er­ages) each day. This is very impor­tant in the first 48 hours after your treat­ment to pre­vent blad­der irri­ta­tion as cyclophos­phamide is passed out of your body in your urine.
  • Empty your blad­der (pass urine) fre­quently (every 2 hours while awake and at bed­time) in the first 48 hours after your treatment.

Early Menopause or Fer­til­ity prob­lems
Women tak­ing cyclophos­phamide may stop hav­ing men­strual peri­ods per­ma­nently (early menopause). This will mean that you will not be able to become preg­nant. Women have the option of egg banking.

  • Speak to your doc­tor about this before start­ing the treat­ment if this is an issue of con­cern to you.

Decreased sperm counts and per­ma­nent steril­ity
Cyclophos­phamide can cause low sperm counts and infer­til­ity in men.

Sperm and egg bank­ing ser­vices are avail­able at the McGill Repro­duc­tive Cen­tre. You can ask your doc­tor for a con­sul­ta­tion prior to start­ing treatments.

Malig­nan­cies (Can­cers)
Cyclophos­phamide increases your risk of blad­der can­cer and other forms of can­cer (less than 1%). This can occur years after tak­ing this med­ica­tion. Blad­der can­cer is the most com­mon can­cer related to Cyclophos­phamide. Talk with your doc­tor about this issue prior to start­ing treatment.

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10. Will I have to have any tests while tak­ing cyclophosphamide?

Note that this treat­ment does NOT have a risk to your heart.

Blood and urine tests will be done before each dose of cyclophos­phamide and twice after your treat­ments (on days 9 and 14 after treat­ment). These blood tests are done to make sure your blood counts are nor­mal and to mon­i­tor your liver func­tion. They also help your doc­tor to make deci­sions about your next dose of cyclophos­phamide. The nurse will arrange for your blood tests to be done at your CLSC.

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11. When will I need to see my neu­rol­o­gist while on Cyclophosphamide?

One of the Neu­rol­o­gists or a spe­cial­ist doc­tor will be on-​call for patients receiv­ing treat­ments each Wednes­day. The Neu­rol­o­gist will come to see you while you are in the Neu­ro­log­i­cal Day Centre.

Also, sched­ule a rou­tine follow-​up visit with your Neu­rol­o­gist every 6 months while on cyclophos­phamide unless your Neu­rol­o­gist sug­gests another schedule.

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12. Is there any­thing that I need to be aware of while tak­ing cyclophosphamide?

  • Alco­hol: Please drink no more than 12 alco­holic bev­er­ages per week while on cyclophos­phamide. It can increase liver enzymes.
  • Preg­nancy: If you are woman who is capa­ble of becom­ing preg­nant, you should use an effec­tive means of birth con­trol. Cyclophos­phamide may be harm­ful to the foetus.
  • Exer­cise: You may con­tinue to exer­cise while on treat­ment. Avoid con­tact sports where injury could occur for 14 days after each treatment.
  • Immu­niza­tions (vac­ci­na­tions): do not have any vac­ci­na­tions while on treat­ment with­out your doctor’s approval.

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13. What else do I need to know?

After each treat­ment increase your fluid intake. Uri­nate fre­quently for 48 hours after your treat­ment to help pre­vent kid­ney and blad­der side effects. You should drink at least eight to twelve 8-​ounce glasses of fluid per day, not includ­ing caf­feinated or alco­holic beverages.

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14. While on treat­ment, notify your doc­tor if:

  • Your tem­per­a­ture, on an oral ther­mome­ter, is above 38 degrees Celsius.
  • You have symp­toms of an infec­tion with or with­out a fever. This could be as a burn­ing feel­ing while uri­nat­ing or a cough with yellow-​green mucus.
  • You have:
    • con­tin­ued vomiting.
    • pro­longed bleed­ing (increased bruis­ing or bleed­ing gums).
    • blood in your urine.
    • short­ness of breath.
    • or any other unusual side effects.
  • You have any other side effects that you are unable to man­age using the sug­ges­tions listed above.

image Please notify your doc­tor if you have an infec­tion or think you may have an infec­tion while on cyclophos­phamide treat­ment, so that the appro­pri­ate tests can be ordered.

If you sus­pect you are preg­nant, you MUST notify your doctor/​nurse imme­di­ately. A preg­nancy test should be done right away and your doc­tor will need to know the results before you receive your next dose of cyclophos­phamide. The med­ica­tion may be harm­ful to the foetus.

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15. Addi­tional Resources & Information


Infor­ma­tion about InfoNEURO
Neuro-​Patient Resource Cen­tre
Mon­treal Neu­ro­log­i­cal Hosp­tial Room 354
Tel: (514) 3985358
E-​mail: infoneuro@​muhc.​mcgill.​ca
Web site: http://​infoneuro​.mcgill​.ca/

This infor­ma­tion is for edu­ca­tional pur­poses only, and is not intended to replace the advice of a pro­fes­sional health­care prac­ti­tioner, or to sub­sti­tute for med­ical care.

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Writ­ten by Sylvia DeMelo, Nurse Clin­i­cal Edu­ca­tor, Neu­ro­log­i­cal Day Cen­tre and Lucy Wardell, Clin­i­cal Nurse Spe­cial­ist, Mul­ti­ple Scle­ro­sis Clinic. Edited by Eileen Beany Peter­son, MLIS, Neuro-​Patient Resource Cen­tre.
Reviewed by Drs. Amit Bar-​Or, and Dr. Yves Lapierre, Mul­ti­ple Scle­ro­sis Clinic.
Pro­duced by the Neuro-​Patient Resource Cen­tre, 2009.

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