Almost every person taking therapy for CML can anticipate side effects to one degree or another. For some individuals, these side effects are barely noticeable, while for others they can be quite difficult and interrupt one's ability to go to work or school. With those differences in mind, here are some recommendations for dealing with side effects.
Know your body. All of us know when things just "aren't right". Keep track of anything that seems out of the "ordinary" and make your care team aware of these things.
If you begin to experience side effects, have you introduced anything different into your daily routine, or treatment regimen? Again, make your care team aware of any changes.
If you discover something that "works" for you in relieving side effects, share that with your physician to ensure that it will not affect the efficacy of the therapy or cause changes in how your therapy works.
If your side effects are "visible," such as a rash or swelling, measure them. You can do this by using a tape measure or ruler to measure the area. If an extremity is swollen such as a foot, ankle or hand, measure around it. If there is a raised or swollen area, or rash, on your trunk, chest or abdomen, measure the lengths across and down for the areas involved. If possible, take a photograph of the area with the date and time labeled, to reference later. If a rash appears to be spreading, use a fine tip permanent marker to draw a thin line around the outer edges of the rash, so that changes can be easily observed.
Keep a written diary of your symptoms. Include when your first noticed the symptom, what makes it better, what makes it worse, including activities, time of day, diet, etc. Are other symptoms associated with it? How you have managed it at home thus far and the degree to which the symptoms are affecting your ability to maintain a normal life and your usual activities. The National CML Society Side Effect Tracker is a printable record of side effects for your use anytime. Other trackers are available online but take care to screen documents and applications for their applicability to CML versus traditional chemotherapy.
When side effects are problematic, don't try to avoid or abate them by skipping or decreasing a dose. Rather talk with your physician to discuss if there are alternate therapies that might be more easily tolerated.
The links below will take you to information on side effects as reported for each of the major therapy options for CML.
Gleevec (imatinib) - Potential Side Effects and Important Safety Information
Sprycel (dasatinib) - Possible Side Effects and Helpful Tips
Tasigna (nilotinib) - Patient Prescribing Information and Side Effect Listing
Bosulif (bosutinib) - Patient Prescribing Information and Side Effect Listing
Icluig (ponatinib) - Patient Prescribing Information and Side Effect Listing
Synribo (omacetaxine mepesuccinate) - Patient Prescribing Information and Side Effect Listing
We are continuing to add to this list. Thank you for your patience.