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Staying on Top of the Treatment Plan

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Before treatment begins, ask your cancer care team how to recognize treatment-associated side effects.

Both you and your loved one should ask the following questions:

  • What types of side effects are associated with the planned treatments?
  • How does one recognize those side effects?
  • Are there ways to treat the side effects?
  • Are there any special instructions for any of the side effects? For example, some members of your cancer care team may request that they are notified.

While your loved one is receiving medications, you may want to consider keeping worksheets that include the following:

  • A list of typical treatment-associated side effects (e.g., vomiting, fatigue)
  • A way to rate the intensity of each side effect from none, mild, moderate, to severe
  • Any directions the cancer care team gave to manage the side effects, which may include taking a medication or notifying a health care professional
  • A list of any additional details (e.g., time of day, what you did to try to resolve it)

For example, if your loved one will be receiving chemoradiation therapy, then create a worksheet similar to this one:

Symptom Symptom Severity Steps You Took to Manage the Symptom
Vomiting None
Mild
Moderate
Severe
Fatigue None
Mild
Moderate
Severe
Mucositis None
Mild
Moderate
Severe

This information can be used by the care team to help your loved one manage symptoms.

Reporting time of day and severity of the side effect

Your loved one is likely to experience cancer-related fatigue, which people with various types of cancer often experience.1, Smets EM, Garssen B, Schuster-Uitterhoeve AL, de Haes JC. Fatigue in cancer patients. Br J Cancer. 1993 Aug;68(2):220-4.2, Vogelzang NJ, Breitbart W, Cella D, et al. Patient, caregiver, and oncologist perceptions of cancer-related fatigue: results of a tripart assessment survey. The Fatigue Coalition. Semin Hematol. 1997 Jul;34(3 Suppl 2):4-12.3, Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008 Jul;16(7):791-801.4Hofman M, Ryan JL, Figueroa-Moseley CD, Jean-Pierre P, Morrow GR. Cancer-related fatigue: the scale of the problem. Oncologist. 2007;12 Suppl 1:4-10. Researchers found that approximately 70 to 80 percent of people who receive radiation or chemoradiation therapy experience cancer-related fatigue, with one in three experiencing severe fatigue that disrupts daily activities.

How will reporting the severity and time of day of cancer-related fatigue help your loved one?

If you record this information daily, you may notice a trend, such as moderate fatigue in the morning but severe fatigue in the afternoon. If you identify a trend, then you can schedule activities for your loved one during the time of day when he or she experiences the least fatigue.5Referenced with permission from The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Cancer-Related Fatigue V.1.2016. © National Comprehensive Cancer Network, Inc 2016. All rights reserved. Accessed December 9, 2016. To view the most recent and complete version of the guideline, go online to www.nccn.org.

Working with the cancer care team to manage the side effects

If your loved one continues to experience fatigue and it becomes severe, then he or she may consult with the cancer care team to identify and treat underlying causes of the fatigue.

Medications are available to treat fatigue. For example, some people develop anemia as a side effect to chemotherapy treatment. Clinicians may suggest red blood cell transfusions to treat anemia, which should decrease the severity of cancer-related fatigue. 5, Referenced with permission from The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Cancer-Related Fatigue V.1.2016. © National Comprehensive Cancer Network, Inc 2016. All rights reserved. Accessed December 9, 2016. To view the most recent and complete version of the guideline, go online to www.nccn.org.6, Referenced with permission from The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Cancer- and Chemotherapy-Induced Anemia V.2.2017. © National Comprehensive Cancer Network, Inc 2016. All rights reserved. Accessed December 1, 2016. To view the most recent and complete version of the guideline, go online to www.nccn.org.7Minton O, Richardson A, Sharpe M, Hotopf M, Stone P. A systematic review and meta-analysis of the pharmacological treatment of cancer-related fatigue. J Natl Cancer Inst. 2008 Aug 20;100(16):1155-66.

By keeping careful records, both your loved one and the cancer care team can learn whether the medications effectively manage the cancer-related fatigue (i.e., fatigue severity will decrease).

There are other side effects that should be reported to your cancer care team, because they may temporarily lower or stop a medication until a side effect is resolved. Ask the cancer care team if you and your loved one need to report side effects and if so, to whom.

You need to have some kind of system so that you know where you are in your treatment—some chronological way of keeping track of what’s happening to you so that if you have a question, you know you can open up whatever system you have and say "I have a question about this."Linda K. (maxillary sinus carcinoma survivor)

References

1 Smets EM, Garssen B, Schuster-Uitterhoeve AL, de Haes JC. Fatigue in cancer patients. Br J Cancer. 1993 Aug;68(2):220-4.

2 Vogelzang NJ, Breitbart W, Cella D, et al. Patient, caregiver, and oncologist perceptions of cancer-related fatigue: results of a tripart assessment survey. The Fatigue Coalition. Semin Hematol. 1997 Jul;34(3 Suppl 2):4-12.

3 Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008 Jul;16(7):791-801.

4 Hofman M, Ryan JL, Figueroa-Moseley CD, Jean-Pierre P, Morrow GR. Cancer-related fatigue: the scale of the problem. Oncologist. 2007;12 Suppl 1:4-10.

5 Referenced with permission from The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Cancer-Related Fatigue V.1.2016. © National Comprehensive Cancer Network, Inc 2016. All rights reserved. Accessed December 9, 2016. To view the most recent and complete version of the guideline, go online to www.nccn.org.

6 Referenced with permission from The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Cancer- and Chemotherapy-Induced Anemia V.2.2017. © National Comprehensive Cancer Network, Inc 2016. All rights reserved. Accessed December 1, 2016. To view the most recent and complete version of the guideline, go online to www.nccn.org.

7 Minton O, Richardson A, Sharpe M, Hotopf M, Stone P. A systematic review and meta-analysis of the pharmacological treatment of cancer-related fatigue. J Natl Cancer Inst. 2008 Aug 20;100(16):1155-66.