Today, I finished my cycle of Cyclophosphamide. I was thoroughly surprised about how I was affected by the side effects, which, unfortunately, I was not made aware of by my medical professionals.

Even though I have yet to see the benefits of the treatments, they can take up to three months before they can be noticed.

I thought it might be helpful for me to summarise my experience and offer some tips to anyone currently having or considering the treatment.

What is Cyclophosphamide?

Cyclophosphamide is a chemotherapy drug often used to treat various types of cancer and certain types of kidney disease in children after the failure of other treatments.

Side effects of Cyclophosphamide

• Nausea
• Vomiting
• Loss of appetite
• Stomach pain
• Diarrhoea
• Hair loss
• Darkened skin/nails.
• Nausea and vomiting
• Temporary hair loss may occur. Hair can grow back after the treatment is over or even during the treatment. However, the new hair can be of a different colour or texture.
• Mouth ulcers
• Joint pain
• Menstrual interruptions
• Existing wounds and slow healing
• Black/bloody stools
• Heavy abdomen /Abdominal pain
• Yellow eyes or skin
• Dark urine
• Mood swings
• Muscle weakness/spasm.

This drug can seriously affect the heart in rare cases, mainly when used in high doses or combined with radiation therapy or other chemotherapy drugs (such as doxorubicin).

Seek immediate medical attention if you experience the following conditions: chest pain, jaw/left arm pain, shortness of breath, irregular heartbeat, and heart failure symptoms (such as shortness of breath, ankle/foot swelling, abnormal tiredness, abnormal/sudden weight).

Anaemia: This drug reduces bone marrow function, which decreases the number of blood cells, such as red blood cells, white blood cells, and platelets. This effect can cause anaemia, reduce the body’s ability to fight infection, or cause bruising.

Infertility: This medication usually causes temporary infertility, but in some cases, it may be permanent. Please get in touch with your doctor for more information.

Other cancers: Although Cyclophosphamide is used to treat cancer, some patients may have an increased risk of developing another cancer months or years after treatment. Don’t hesitate to get in touch with your doctor for more information. It is essential to receive strict medical supervision during treatment.

Abnormal Lumps: You should also see a doctor regularly, even if the treatment is over. Please tell your doctor immediately if you experience any weird bumps or lumps, swollen glands, sudden or unexplained weight loss, night sweats, pelvic pain, or frequent urination.

Allergies: Very severe allergic reactions to this drug are rare. If you experience symptoms of a severe allergic reaction, including rash, itching/swelling (especially face/tongue/throat), severe dizziness, and difficulty breathing, be sure to contact your doctor immediately.

How do you get through the side effects?

Take Rest
Fatigue is the most common side effect of cancer patients, especially those receiving chemotherapy. Therefore, even if you feel good, rest and avoid overwork. Now is the time to return to normal energy levels. Remember, you can ask for help.

Stay Hydrated
Diarrhoea, vomiting, and other side effects of chemotherapy can cause dehydration. It has low energy, but it can also cause other health problems. Make sure to drink plenty of water during treatment. Caffeine-free tea, juice, and milk can also help. Please consult your doctor if you cannot get enough fluids or stay hydrated.

Eat when you can
Chemotherapy can cause Nausea and loss of appetite, so eating as much as possible is essential to avoid malnutrition. Please note that during the treatment, many foods will taste differently. Food may have a metallic taste during and after chemotherapy in some patients. Create a sense of normalcy in your daily life. Stick to your daily routine. Small things like dressing or eating with family every day. These rituals will help you stop thinking about cancer. Contact your support staff and nursing staff during treatment.

Make Yourself Comfortable
Chemotherapy is difficult. Therefore, please seek support from your family, friends, and caretakers. The doctors and nurses will do their best to make you feel comfortable. However, you must ask questions and express your concerns so that they can help. Your favourite blanket, delicious snack, best friend, a good book, or anything else makes you feel more comfortable and keeps you busy while you wait. Check out my  What’s In My Chemotherapy Bag for some inspiration.

Nausea and Vomiting
Nausea and vomiting are usually manageable. Before each chemotherapy cycle, you will receive oral or intravenous medications to treat the disease and get some painkillers to take home.

Hair Loss
Most cancer patients undergoing chemotherapy will experience baldness, which usually starts 7 to 21 days after the first treatment. Some people gradually lose their hair, and some people have large strands on their pillows when they wake up, but hair loss depends on the type and dosage of chemotherapy you will receive. Before starting treatment, discuss with your doctor what will happen, and then plan what to do if you lose your hair. For example, if you begin to lose hair or decide to try protective styles, scarves, wigs, turbans, or hats, consider getting a haircut or shaved head.

Protect your skin and nails.
Moisturize your skin to reduce dryness, but choose a cream with the least amount of perfume to minimize the risk of reaction; test a small area of skin.

First, take care of yourself in the sun: Cover your skin and wear a hat, use high-SPF sunscreen, and avoid the sun during the hottest part of the day.

Discover more about my journey with Lupus by checking out these insightful posts:

• Lupus Symptoms: 22 Signs of Lupus You Shouldn’t Ignore
• ThisIsLupus:11 Essential Tools To Help You Self-Advocate Effectively
• 9 Important Facts for Family & Friends Of Lupus Sufferers
• How to Support Someone with Lupus?
• What Not To Say To Someone With Lupus
• Living with Lupus – The Lesser Known Side of the Story

Disclaimer:

The information and tips in this post are based on my experiences and are provided for general information and educational purposes to aid other Lupus warriors in finding their own coping mechanisms. They do not constitute medical advice for any specific medical condition or situation. This Wots Her Name Again? should not be used or relied upon to diagnose or treat a problem, disease, or medical condition.

Discover Valuable Resources for Navigating Lupus – Your Guide to More Support:

Rest assured, if you or a loved one are diagnosed with Lupus and need further assistance or information, these reliable and trusted resources can provide the help you need.

Lupus UK

Lupus UK: A Key Resource for Those Affected by SLE Lupus UK is a voluntary organization in the United Kingdom that crucially provides information and support to individuals affected by systemic lupus erythematosus (SLE).

Lupus Trust

The Lupus Trust (previously St Thomas Lupus Trust) is dedicated to supporting lupus research at Guy’s Hospital and raising awareness of

Hibbs Lupus Trust

A Personal Journey Turned into a Mission The Hibbs Lupus Trust, a registered charity founded in 2011 by the Hibbs family, was born from a personal journey with Lupus and a strong desire to create meaningful change.