Side Effects

  • Many people talk about "chemo-brain" or the "Gleevec Fog". Is there an increased chance of Alzheimers or other neurological issues associated with taking this medication long term?

    A link between taking Gleevec® and Alzheimer's disease has not been established. Additionally, there are no established links between the drug and other neurological issues.

  • I have an arrhythmia but I worry at times if the skipping beats are normal or if it's indicating a problem my heart is experiencing with the drug. If there are tests we should be having, what are they and how often should we have them?

    Tyrosine Kinase Inhibitors (TKIs) do have the propensity to affect the heart's rhythm, however it is not a primary side effect of these drugs. It is recommended that all patients with outstanding heart issues talk with their doctor prior to starting Gleevec® or any TKI for their CML. An EKG would be appropriate before beginning any of these medications and during treatment at appropriate intervals.

  • What are the side effects associated with taking Gleevec?

    Many individuals receiving treatment for their CML will experience side effects from time to time.  Some more than others. Most will see these side effect dissipate or go away completely over time. If you are experiencing side effects, do not hesitate to report them to your doctor, no matter how insignificant you may think them to be. By sharing with your doctor, you can work together to minimize them. Most side effects can be addressed without the need to stop your therapy.

    Some common side effects of Gleevec® may include:

    • Fluid retention
    • Puffiness around the eyes (Periorbital Edema)
    • Nausea
    • Vomiting
    • Muscle Cramps
    • Diarrrhea
    • Rash
    • Mouth soreness

    Gleevec® may also cause a loss of bone minerals. Your doctor can discuss this with you and test for this possible side effect.

    You can find more information on Gleevec side effects at http://www.nationalcmlsociety.org/side-effects.

  • What are the side effects associated with taking Sprycel?

    Many individuals receiving treatment for their CML will experience side effects from time to time.  Some more than others. Most will see these side effect dissipate or go away completely over time. If you are experiencing side effects, do not hesitate to report them to your doctor, no matter how insignificant you may think them to be. By sharing with your doctor, you can work together to minimize them. Most side effects can be addressed without the need to stop your therapy.

    Some common side effects of Sprycel® may include:

    • Fluid retention in the chest and other tissues.
    • Too few red cells, white cells, and/or platelets (myelosuppression)
    • Diarrhea
    • Nausea
    • Headache (Many individuals taking Sprycel® complain of a headache "in the mask", similar to sinus pressure headaches. These headaches tend to dissipate over the first couple of weeks of beginning therapy.)
    • Low calcium levels in the blood
    • Slight changes in liver function

    You can find more information on Sprycel side effects at http://www.nationalcmlsociety.org/side-effects.

  • What are the side effects associated with taking Tasigna?

    Many individuals receiving treatment for their CML will experience side effects from time to time. Some more than others. Most will see these side effect dissipate or go away completely over time. If you are experiencing side effects, do not hesitate to report them to your doctor, no matter how insignificant you may think them to be. By sharing with your doctor, you can work together to minimize them. Most side effects can be addressed without the need to stop your therapy.

    Some common side effects of Tasigna® may include:

    • Too few white cells and/or platelets
    • Changes in liver enzymes
    • Changes in pancreatic enzymes
    • Nausea
    • Constipation
    • Diarrhea
    • Itching
    • Rash

    Tasigna® carries a "Black Box Warning." This is the FDAs strongest warning place on a drug. Tasigna® has the propensity to elongate part of the heart's rhythm. This is generally not an issue, however if you have a heart condition, or a family history of heart issues, you should discuss it with your doctor.

    You can find more information on Tasigna® side effects at http://www.nationalcmlsociety.org/side-effects.

  • I seem to be walking around in a daze. I'm taking my CML medication but I can't remember even simple things. Do I have chemo brain or brain fog?

    "Brain fog" and "chemo brain" all refer to the combined conditions of forgetfulness, confusion, difficulty concentrating and difficulty finding the words one wishes to use in speaking, that are experienced by patients undergoing treatment for any type of cancer, including treatment with Tyrosine Kinase Inhibitors for CML. Although the mechanisms differ between cancer treatments used, patients across all cancer types may exhibit these frustrating conditions. This cognitive disorder can be triggered or worsened by fatigue, insomnia, overexertion, overstimulation, anxiety and medications including TKIs and those used for symptom management.

    Some patients have found that there are some very practical and achievable changes to their normal routines, that may produce improvements in brain fog.

    These include:

    Activity Level: Take rest breaks, pace yourself, rest prior to activities which require mental and physical exertion.

    Activity Time: Recognize the time of day that you are at your best cognitively, and also when you are at your worst. Rearrange activities that require the highest levels of concentration and energy, for the times you’re at your best.

    Activity Organization: Create routines for things that you may not have needed in the past. Habits will form quickly as you observe the routines and this will allow your brain to take one more thing requiring cognitive work, off its list of things to do. Where your keys, your wallet, your cell phone are, will become actions of habit instead of thought.

    Controlling Stimulation: Create your master list and then prioritize it. Do one thing at a time – multi-tasking isn’t everything it’s lauded to be. Reduce noise/sound, surrounding activities and distractions.

    Observe Patterns: Be vigilant in noticing patterns in the occurrences of your brain fog symptoms. Look for activities, foods, and situations which make your symptoms better or worse. These patterns will be important clues for developing strategies to control and manage your symptoms.

    Watch Medications: Discuss your medications and their possible interactions with each other, and with foods. These interactions may be producing or worsening some of your brain fog symptoms. Your pharmacist is a great resource in doing this! 

    Worsening Symptoms: If your symptoms persist and your life is being affected in serious ways, it may be time to discuss options with your CML physician. Is there a change in dose or schedule that might help? Is there another treatment option that might be effective without the brain fog side effects? Are there clinical trials that might be right for you? It is important to ask and be well informed.

    Managing Life: There may be a time when you are no longer able to productively participate in work, school or other daily activities. If you are nearing this moment in time, please consult with your social worker and health care team to consider options for your future. The National CML Society has resources to help get you started in researching your options

    Know that the majority of patients who successfully tackle and manage their brain fog, do so in a somewhat “trial and error” approach. What works for one person, may not work for another. Many patients require numerous strategies in order to effectively live their lives in the shadow of brain fog.

    We know that this is merely a partial answer to those who suffer with this debilitating condition. But at this time it is the only reliable answer and those who promise otherwise offer interventions that are untested and unproven. Please take care when considering other options and keep your health care team informed of changes you make to your lifestyle including the adoption of any complementary or alternative therapies. Thus far, no therapy, traditional or otherwise, has been proven to prevent or eradicate brain fog. But the search for a prevention and an effective treatment continues and we wll not give up. 


  • Since starting therapy for my CML, my skin itches all the time. What can I do?

    Changes in skin, including rashes and itching (pruritus) have been reported by many people living with CML. The severity of these changes, varies widely. In some individuals, the itching and rash can be so severe that therapy dosages must be reduced or medications changed.

    Please be sure to report skin changes to your health care team so that they can assist you in managing the symptoms. At that time, you can discuss available medication options to decrease the severity of your symptoms. Discuss a referral to a dermatologist (skin specialist) who has experience with patients undergoing cancer treatment. 

    Here are a few tips on making your itchy skin less bothersome. 

    1. Limit time in the bath or shower and make sure that water is as cool as you can comfortably tolerate. 
    2. Apply scent free and alcohol free emolients/lotions/cremes to your skin immediately after bathing.
    3. Be sure to adequately dry skin folds and areas where friction can be a problem.
    4. Find clothing material that is least irritating to you. Some individuals tolerate cottons well, while others are more comfortable in synthetic fibers.
    5. Avoid binding and tight clothing or accessories. Typical offenders can include belts, waistbands, watches, jewelry, underwire bras, and banded socks.
    6. When symptoms are most bothersome, take an oatmeal bath. Fill one end of a pair of inexpensive, clean pantyhose with quick cooking oats. Tie the top of the hose. Fill a clean tub with warm water. Float the oatmeal in the water for fifteen minutes. Bathe for no more than fifteen minutes. Dry skin and apply emolients. 
    7. If specific areas are particularly troublesome, apply cold packs. Make these ahead of time by wetting clean handtowels with water and scent free, alcohol free lotion, and placing them folded, in your freezer. When ready for bed or when local itching is worse, apply the frozen towel to the area. Do not put ice cubes or ice packs directly on skin. Always use a clean cloth or other material to protect the skin.
    8. Keep nails trimmed and smooth. 
    9. Inspect your skin to be sure there are no areas where the skin has been broken. These open areas or scratches, are opportunities for infections.
    10. Wear sunscreen and avoid overexposure to the sun.
    11. Don't continue to suffer if symptoms persist. Call your CML specialist for help.
  • What are the side effects associated with taking Bosulif?

    Many individuals receiving treatment for their CML will experience side effects from time to time. Some more than others. Most will see these side effects dissipate or go away completely over time. If you are experiencing side effects, do not hesitate to report them to your doctor, no matter how insignifant you may think them to be. By sharing with your doctor or health care provider, you can work together to minimize and manage side effects. Most side effects can be managed without the need to stop your therapy. 

    Some common side effects of Bosulif may include:

    • Gastrointestinal Disorders including Diarrhea, Nausea, Vomiting and Abdominal Pain
    • Bone Marrow Suppression (myelosuppression) including a decrease in the number and effectiveness of of platelets (thrombocytopenia), red blood cells (anemia) and white blood cells (neutropenia)
    • Rash and Itching Skin
    • Fatigue
    • Swelling (edema)
    • Respiratory Tract Infections
    • Joint Pain
    • Back Pain
    • Headaches
    • Dizziness
    • Cough

    It is important to monitor your response to therapy, but also important to monitor several laboratory tests to assure you are healthy and tolerating the medication well. Specifically, the complete blood count including absolute neutrophil counts, platelet counts and hemoglobin should be monitored frequently during the first year of therapy. In addition, Levels of SGPT/ALT, SGOT/AST, Lipase, Phosphorus and Total Bilirubin should be reviewed for any abnormalities. 

    You can find more information on Bosulif side effects at http:www.nationalcmlsociety.org/side-effects. For additional information about Bosulif and official prescribing info, you can link to Bosulif Prescribing Highlights.

  • What are the side effects associated with taking Synribo?

    Synribo (omacetaxine mepesuccinate) represents a new approach to managing CML which is resistant and/or intolerant to two or more previous attempts at treatment with tyrosine kinase inhibitors. Although there is still much to learn about Synribo, safety data has been fully reported for approval, and for individuals whose disease is not responding to other therapies, Synribo represents a great hope.

    Synribo and its mechanism of action is yet to be fully understood. Scientists understand that it inhibits protein synthesis but works without direct effect on BCR-ABL binding. The beneficial effect however, is a reduction in the protein levels of BCR-ABL, which likely accounts for the response rates seen in patients who had been resistant to other forms of treatment, specifically tyrosine kinase inhibitors.

    Synribo is administered differently than tyrosine kinase inhibitors. For those individuals accustomed to an oral dosing regimen of a pill or capsule swallowed once or twice a day, the administration of Synribo may produce some apprehension. Fortunately, there are many examples of other medications given subcutaneously, which have been taken successfully and without any problems. Patients will need to spend time with your health care team to learn the process for taking Synribo, just as anyone who needs medication to be delivered subcutaneously. Examples of other medications taken subcutaneously include heparin, insulin, granculocyte colony stimulating factors and many more. 

    Synribo is given via a small subcutaneous injection into the fatty tissue just underneath the skin. It is given twice daily for the first fourteen days of a 28 day cycle. For subsequent cycles, Synribo is given for seven consecutive days of a 28 day cycle, or one week on, three weeks off.

    At this time, Synribo must be prepared and administered by a health care professional within an approved environment certified safe for preparation of cytotoxic or chemotherapy drugs. 

    Side effects which may occur and should be discussed with your health care team include but are not limited to:

    • Bone marrow suppression (myelosuppression) including a decrease in the number and effectiveness of platelets (thrombocytopenia), red blood cells (anemia) and white blood cells (neutropenia).
      • Bleeding which may indicate a serious hemorrhage is very important to report immediately. If you suspect bleeding, seek care at your nearest emergency medical center as soon as safely possible. More advanced signs of bleeding or potential bleeding in sensitive areas can include changes in vision or speech, and the development of confusion. Know and report any signs of bleeding such as bruising, bleeding that takes longer than normal to stop, blood in urine or stool, nosebleeds. 
      • Know signs of potential infection including oral temperatures above 100.0 and pain and report them to your health care team immediately. Do not use anti-fever medications such as acetaminiphen or ibuprofen unless specifically told to do so by your hematology team and only if your absolute neutrophil counts are in the safe zone.
      • Know and report signs of anemia such as fatigue that doesn't respond to periods of rest and/or shortness of breath.
    • Elevated blood sugar levels (hyperglycemia) represent a serious risk for patients with diabetes. Be sure to discuss this with your healthcare team and plan ahead for how to manage changes in your blood sugar levels that may arise. Individuals with "brittle" diabetes or those with uncontrolled responses to insulin treatment should proceed with extreme caution and discuss and manage this serious risk factor with your hematologist prior to beginning treatment with Synribo.
    • Gastrointestinal disturbances including nausea, vomiting, diarrhea, abdominal pain, constipation.
    • Fatigue
    • Skin Rash and Itching Skin
    • Hair Loss (alopecia)

    To learn more about Synribo and its administration and potential side effects, consider this prescribing information approved by the FDA in October 2012. You can also learn more about side effects of treatment for CML at http://www.nationalcmlsociety.org/side-effects.

  • Can [my CML treatment drug] cause painful sores in my mouth? If so, what can I do?

    It is not uncommon for individuals taking a Tyrosine Kinase Inhibitor (TKI) such as Imatinib, Dasatanib, Nilotinib, and others to experience mouth sores or ulcerations. This condition, called Oral Mucositis, is quite painful and can prevent one from eating and drinking, as well as swallowing and even speaking. 

    If you are experiencing this condition, call your doctor. He or she may be able to prescribe for you a product widely referred to in the United States as "Magic Mouthwash." This term is used interchangeably for several products, some of which are compounded by a pharmacy and some pre-mixed. While the ingredients vary by product, they generally contain at least three of the following basic ingredients: 

    • an antibiotic to kill bacteria
    • an antihistamine or anesthetic to ease pain
    • a corticosteriod to reduce inflammation
    • an antifungal
    • an antacid to help other ingredients adhere to the inside of the mouth*

    Magic Mouthwash is generally used every four to six hours, held in the mouth for one to two minutes, and then spit out or swallowed. One should refrain from eating or drinking for at least 30 minutes after using the mouthwash to allow the medications time to work and produce relief. 

    While this product is helpful in providing some relief for side effects, it TOO has the potential to disrupt taste or cause burning or tingling in the mouth. Additionally, some users have reported nausea, constipation, diarrhea, and drowsiness. Speak with your doctor if you have concerns about the potential for additional side effects.

    Some tips to minimize oral mucositis:

    • practice good oral hygiene
    • avoid spicy or acidic foods, as well as hot foods and beverages
    • eat soft foods to avoid aggrevating any ulcers or sores
    • use mild or "baby" toothpaste or brush with baking soda
    • use a saline or saline/peroxide rinse three to four times a day

    Some brand names for pre-mixed, prescription Magic Mouthwash include:

    Your doctor can recommend the appropriate product for you which may be compounded specifically for you by a local pharmacy.

    More information on oral mucositis is available from the National Cancer Institute and can be found here.

    *while some Magic Mouthwash products may contain antacids, the amount of antacid in the mouthwash may not pose any particular issue, especially when it is spit out following use. One should exercise caution when using antacids and proton pump inhibitors while taking TKIs for CML.