Many people worry about losing their hair after being diagnosed with lymphoma. Both treatments for lymphoma and the cancer itself can cause a person to lose clumps or all of their hair. Although hair usually grows back after treatment, it can be upsetting to experience hair loss while living with lymphoma. Hair loss can impact a person’s self-esteem, adding to the daily stresses of life with cancer.
Not everyone loses their hair with lymphoma. But if you do, there are many ways to cope with hair loss.
While a few people experience hair loss as a symptom of lymphoma, most experience it as a side effect of treatment. Even though losing hair is a sign that you are taking steps to treat your lymphoma, it can be hard to handle.
Many MyLymphomaTeam members have described their experiences with hair loss. As their conversations show, hair loss impacts everyone differently.
Hair loss usually occurs fairly quickly after starting treatment. As one member wrote, “I lost my hair three weeks after the first chemo treatment.” They added, “Losing my hair was the hardest part. I went from medium length to short before starting chemo.”
Many people find it difficult to deal with hair loss with lymphoma. One member shared, “Now that treatment is over and I am trying to get back to a normal life, I am really struggling to accept my new look (I have absolutely no hair/eyelashes/eyebrows right now, and no patience for waiting for them to grow back).” Another member found losing their hair to be a very emotional experience: “All my hair is falling out. I feel sick. It just keeps coming out. It waited until the day after my second chemo, and now it just keeps falling out. I don’t know how to deal with this. All I want to do is cry.”
As many members describe, lymphoma treatments typically cause hair to fall out in clumps. People undergoing chemotherapy, radiotherapy, or other lymphoma treatments may find that their hair comes out when they brush or wash it.
One member reminded others of an important point: “You are beautiful with and without hair. As women, we certainly dread losing the hair. Thank goodness it grows back.”
There are two main reasons why people lose their hair after being diagnosed with lymphoma: the cancer itself and the treatments for the cancer.
Certain types of lymphoma can cause hair loss, including cutaneous lymphoma and Hodgkin lymphoma.
Hair loss is most common in cutaneous lymphoma (usually T-cell lymphomas). This form of lymphoma mainly manifests in the skin. Hair loss is more likely to occur in mycosis fungoides (MF), though it can also happen to those diagnosed with Sézary syndrome and folliculotropic MF. These are all types of non-Hodgkin lymphoma.
While fighting cutaneous lymphoma, the immune system can attack the hair follicles, causing alopecia areata. These sparse or bald patches may initially be isolated and eventually connect to form larger bald spots.
A very small number of people diagnosed with Hodgkin’s disease, or Hodgkin lymphoma, may also lose their hair. While there are isolated cases in which this has occurred, it is not common enough for researchers to determine the prevalence of hair loss in Hodgkin lymphoma.
The patterns of hair loss you experience will depend upon the type of lymphoma you have. Sometimes, hair loss is localized, meaning a person loses their hair in a single area or in several different areas. Other times, it is generalized, and all of the hair on your body may begin to fall out.
In most cases, hair loss occurs as a result of lymphoma treatments. Chemotherapy, radiation therapy, targeted drugs, and immunotherapy can all result in hair loss.
People undergoing radiation therapy will lose all of the hair at the radiation site, but hair loss should not extend throughout the body. Most people experience hair loss within the first three weeks after their initial radiation treatment. This hair will likely not grow back once treatment is finished, but it might if you received low doses of radiation therapy.
Those undergoing chemotherapy experience hair loss about 66 percent of the time. Whether chemo will cause hair loss depends on what drugs you are being given — cyclophosphamide (Cytoxan) and doxorubicin (Adriamycin), for instance, are common culprits — how many drugs you are taking, the method of chemotherapy delivery, and how often you receive treatments. Most hair loss begins early in the chemotherapy cycles. It may happen quickly or slowly, and you may lose all of your hair or only several clumps.
Hair loss due to targeted drugs and immunotherapy is less common. According to Lymphoma Action, less than 15 percent of people who receive targeted therapy and less than 2 percent of those undergoing immunotherapy experience it. Your hair should grow back if you lose it due to these treatments.
Hair loss from lymphoma can be reversed. If you successfully treat the lymphoma, you should experience regrowth relatively quickly. In a small number of people, though, the hair does not come back or remains thin over the long term.
You have many options for treating and coping with hair loss associated with lymphoma. If you’re not sure what you should be doing to manage or deal with hair loss, talk to your oncologist. A health care provider can help you come up with a plan to work through it and help preserve your emotional well-being.
If you are experiencing hair loss because of lymphoma, the best thing you can do is to treat the lymphoma. Once the cancer is under control, your hair should start to come back on its own. If you continue to experience hair loss, work with your doctor to determine why it is occurring and what you can do to encourage hair growth.
If you know that you are going to be undergoing treatment for lymphoma and that you may lose your hair, plan ahead so that the hair loss doesn’t come as a surprise. This may include:
One MyLymphomaTeam member put it best when they encouraged another member: “Don’t feel bad going back to school without your hair. Put on a hat, scarf, or wig for now and know how incredibly strong you are!”
Some people struggle with their hair loss or find that it seriously affects how they think and feel about themselves. If this is the case, ask your oncologist for a referral to a mental health professional who specializes in working with those diagnosed with lymphoma and other cancers. This can be a great way to process the diagnosis as a whole and begin to feel better about your hair loss.
One member recommended speaking to a counselor. “Hair and eyebrows will grow back. My oncologist sent me to a psychologist who specializes in treatment of cancer patients,” they said. “It really helped me to move on from this devastating diagnosis.”
If you have recently been diagnosed with lymphoma, consider joining MyLymphomaTeam. This is the social network and online community for people living with lymphoma. At MyLymphomaTeam, you can share your story, join ongoing conversations, or ask any questions you might have. Before you know it, you’ll have made new connections and found the support you need as you continue on your journey with lymphoma.
How have you managed hair loss with lymphoma? Share your story and advice in the comments below or by posting on MyLymphomaTeam.