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Watch and Wait CLL Patients: When to Call Your Doctor

After being diagnosed with chronic lymphocytic leukemia (CLL), patients may enter a period of “watch and wait.” Because CLL is a very slow-moving form of cancer, doctors often want to monitor the progression of symptoms before starting treatment. Therefore, it’s important to recognize when symptoms are worsening so you can call your doctor and potentially begin treating the cancer.

If you’re curious about when to reach out to your care team during the watch and wait period, check out these eight signs that may mean it’s time to pick up the phone.


Weight Loss

Often, the rapidly dividing cancer cells that accompany CLL take so much energy that the body ends up losing noticeable amounts of weight, even if you’re eating normally. This can go on to effect energy levels, quality of sleep, and general well-being.

If you notice that you’re losing weight without trying, it’s a good idea to call your doctor, advised Lori Leslie, MD, during the program “What Comes After Watch and Wait for Patients With CLL?


Fatigue

Fatigue may be caused by a variety of reasons – ranging from treatment side effects to leukemia-related anemia, or a low red blood cell count, but it’s important to let your doctor know about fatigue because they may be able to help, said Dr. Michael J. Keating during the program “What Causes CLL Fatigue and How Can It Be Treated?” Alleviating fatigue can often be achieved with medications, an exercise program, or by treating the leukemia itself, he noted.


Feeling Full, Even After a Few Bites

One symptom that may indicate that CLL is advancing involves an enlarged spleen, which can in turn lead you to feel full, even if you just ate a few bites. “The spleen sits right over the stomach,” Dr. Leslie said. Because of its location there, an enlarged spleen can make you feel like you previously did after eating a full meal, despite consuming just a few bites. “That early satiety is something I really always advise patients to look out for,” she said.


A Racing Heartbeat

If you feel your heart racing during activities that shouldn’t elevate your pulse, it’s a good idea to contact your doctor. This can be a sign of anemia, which your doctor will want to evaluate to determine if it’s related to your CLL or not.


Stomach Pain or Nausea

CLL patients might experience stomach pain, nausea, diarrhea and other gastrointestinal symptoms for a wide variety of reasons, said David Seitz, MD, a board-certified physician, and medical director at Ascendant Detox. “Some of the most common causes include anemia, low blood cell counts, and chemotherapy medications.”

If you begin experiencing any stomach symptoms that are out of the ordinary, reach out to your care team and let them know.


Unexplained Bruising

One symptom CLL patients may experience involves unexplained bruises that show up on the skin. This can stem from your body’s inability to generate sufficient platelets, and your doctor will want to be notified if unexpected bruises or any other unusual changes start to affect your skin.


Swollen Lymph Nodes

One of the most common symptoms in CLL patients are enlarged lymph nodes, most often in the armpit, neck, or groin. CLL directly effects the body’s lymph nodes since B lymphocytes (the cells that become cancerous due to CLL) reside in the body’s lymph nodes.

If you experience “any lumps or bumps or lymph nodes growing,” call your care team, Dr. Leslie advised.


Night Sweats

CLL patients will often wake up drenched in sweat, even if the sleeping environment is kept cool, and that’s another reason to reach out to your physician.

The cause for this may revolve around the B lymphocyte cells that typically fight off infections. “With CLL, B lymphocytes go into overdrive and the abnormal B lymphocytes can cause one to have night sweats,” said Tara Graff, DO, MS, a medical oncologist with Mission Cancer and Blood in Des Moines. If you suddenly start experiencing this symptom, call your doctor.


This article was originally published February 23, 2023 and most recently updated February 27, 2023.