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CTCL may change in ways you cannot see or feel
It’s likely you discovered CTCL on your skin, but it doesn’t always stop there.
What does progression mean?
When it comes to cancer, progression is a word you may hear during your doctor visits. This means that your disease is becoming worse or spreading in the body. Keeping track of your CTCL symptoms will help you and your care team make the best treatment decisions.
Where can CTCL spread?
It’s possible for CTCL to spread beyond your skin, including to your blood, lymph nodes, and sometimes organs. Be aware of how and where CTCL can progress (get worse).
On the skin
Your care team will work with you to determine if there is any sign of your CTCL spreading or worsening. Some changes to look out for include:
- More of your skin being covered in patches, plaques, or tumors
- New types of skin symptoms appearing (for example, seeing plaques when you usually get patches)
- Changes in the color of patches, plaques, or tumors, or your skin becoming redder
- More itching, burning pain, or pins and needles sensation in your skin
Within the blood, lymph nodes, and organs
Your care team will also evaluate signs of CTCL spreading in the blood or the lymph nodes. Some examples of these signs include:
- An increase in the level of Sézary cells in the blood
- Enlarged lymph nodes or organs
- Not improving or getting worse while on treatment
If you notice any of these changes or any changes on your skin, let your care team know right away.
Keeping track of CTCL symptoms
To play your part in monitoring your disease, you can:
Share frequent updates with your care team during and between office visits
Keep a journal to log how you feel and how your symptoms change
Take pictures of your patches, plaques, and tumors and bring them to your next appointment
