Content created by Healthline and sponsored by our partners.​ ​ Learn​ ​more

Living with a Rare Form of Cancer

Medically reviewed by Christina Chun, MPH on March 28, 2017Written by Ashley Marcin on March 28, 2017
chronic myeloid leukemia

You may be well aware that chronic myeloid leukemia (CML) is a rare form of cancer. It’s normal to feel depressed when you’re dealing with this disease. Here are some ways you can educate yourself and cope while living with your cancer.

Learn what you can do

When you first receive a diagnosis of CML, you may feel inundated with information. After the initial shock, it’s important to dig in and learn what you can about CML so you can make informed choices about your care plan. It can be harder to find information about rarer forms of cancer, so you want to make sure you’re looking at the right resources and in places with reliable information.

First off, the word “leukemia” itself may be confusing. It generally refers to a whole group of cancers that affect bone marrow and blood. Make sure you’re reading up specifically on “chronic myeloid leukemia” and not simply “leukemia” for the most relevant information.

Still confused? Your doctor may be able to point you to some literature and online information. If you do your own research, stick with established organizations and articles written or reviewed by medical professionals. Try checking out websites for the American Cancer Society, the Leukemia & Lymphoma Society, and the National CML Society.

Ask your doctor questions

Better yet, sit down with your doctor to learn more about your cancer and your unique treatment plan. There are no dumb questions when it comes to your health. Understanding your illness, symptoms, treatments, and options can be very empowering.

If you don’t know where to start, here are some ideas:

  • What treatment will we start with?
  • What happens if I miss a dose of my medication?
  • What side effects might I experience, and how can I lessen them?
  • Can I still occasionally enjoy a glass of wine or beer while taking my medication?
  • How will cancer impact my fertility?
  • Are there any clinical trials I might participate in? What are the pros and cons of doing so?
  • Will I be able to return to work while in treatment?

It may be hard to remember something you’ve been meaning to ask when you’re on the spot. Consider jotting down a list of questions to take with you to appointments. And don’t forget to bring a pen so you can write down notes from your doctor.

Practice healthy living

Eating well, exercising, managing your stress, and getting proper rest are all lifestyle measures that can help you feel better during your treatments. While you may not be able to cure your cancer, you can tweak things in your routine to help you live your best life.

Eating well includes having at least five portions of fruits and vegetables a day, snacking on high-fiber foods, like beans and cereals, and drinking plenty of water and other fluids. You may also want to stop smoking and limit your alcohol intake. You may feel nauseous or lose your appetite while in treatment, but aim to eat a small meal every two to three hours.

Exercising might be the last thing on your mind. Moving your body can help you with anything from maintaining a healthy weight to dealing with feelings of anxiety or depression. Ask your doctor what types of exercise are best for you and your stage in treatment. Then start slow. You may want to try low-impact activities like walking, swimming, or cycling.

Managing stress is crucial when you’re dealing with a rare form of cancer. Seek counseling if you think it might help. Meditation, deep breathing, yoga, or alternative healing methods like aromatherapy or reflexology may also give you some relief.

Getting rest is important, too, especially if you deal with cancer-related fatigue. It’s important to pay attention to your tiredness, though, because exhaustion may be a sign of other underlying health issues, like anemia or problems with your organs. Your doctor may even be able to prescribe medications to help.

Don’t forget about your sex life

You are still you. Your cancer doesn’t define you and shouldn’t make you feel like you need to stop living your life. One area you might be wondering about revolves around sex. This is one area, in particular, you might feel hesitant to chat about with your doctor, family, or friends.

The truth is, having a rare form of cancer and undergoing treatment for it do sometimes change the way you feel about sex. You may even experience physical changes to your body or how it responds during sex. There is no right or wrong way to feel about your sex life. It may very well morph with each new stage of your life.

The symptoms and side effects you deal with during treatment — fatigue, nausea, hormone imbalances, and others — may mean you don’t feel in the mood as often as you used to. You may worry these feelings will never return. Whether you’re in a relationship or you’re single, try talking openly and honestly with your partner or potential partner about your concerns. You two may even seek counseling together as you work to find a new normal.

Share with your family and friends

That said, you may not feel like talking about your cancer with your family members or friends. You may worry they won’t understand what you’re going through or will be scared away by the intensity of your conversations. There are many advantages to doing so, however.

Of course, you can share your thoughts and feelings and get some emotional support. Chances are, the people in your life will want to listen and be there for you, no matter what. Even more useful, though, may be the practical help they can give in your times of need. You’ll likely have many doctor visits, treatments, and other appointments. Your friends and family may offer to go with you to appointments, provide transportation, make meals, or give other sorts of support.

If they offer, take them up on it. You don’t need to go through cancer on your own. Beyond that, you may also be dealing with figuring out how to pay for cancer treatments, arrange for time off from work, and other logistics. Your doctor may be able to point you to trained people who can help you if you don’t have other support.

Find others living with cancer

One of the best ways to feel less alone with CML is to surround yourself with people who understand exactly what you’re going through. Your doctor may be able to refer you to support networks that meet in your area. Not only will meeting others who have CML make you feel less isolated, but it will also give you the opportunity to share your thoughts on different treatments, symptoms, medication side effects, and ways to manage your illness.

If you live in a small town or don’t feel well enough to venture out, grab your computer. You can find support online at the American Cancer Society. There is also a CML Support Group on Facebook that has over 1,700 members.

The takeaway: Find your way to thrive

Living with a rare form of cancer like CML can be overwhelming at times. Try to learn what you can and ask your doctor lots of questions so you can make the most informed decisions about your health. Beyond that, take care of yourself by practicing healthy living and surrounding yourself with a network of friends and other people living with cancer. Even with a diagnosis of CML, you can find a way to still thrive.

CMS Id: 118155