Disease Progression

At this point, you may be wondering “now what?”. Throughout your journey, you've had the support of Caregivers (ie, family, friends, and loved ones) and your Health Care Team (ie, healthcare professionals). Now, together, you may need to consider different options to continue treating ALK+ lung cancer.

What Is Progression?

Progression is when tumors grow, spread to other parts of the body, or when new tumors develop while on treatment. What's important to remember is that it is normal for ALK+ lung cancer to try to outsmart your treatment. Continue to be your own healthcare advocate by reading and learning all you can about ALK+ NSCLC and treatments. Then have open conversations with your Health Care Team.

Remember, you have not failed, your treatment has now failed you—that is a big difference.

You May Still Have Options

Talk with your Health Care Team about all your options including, but not limited to radiation, surgery, targeted therapy, and immunotherapy. With the advancements in ALK+ lung cancer over the past 10 years, it is likely you still have options. The time without progression from your first treatment was an important milestone and now you must focus on your next phase.

When a treatment is no longer working, due to a gene mutation that develops. +

Alternate Strategies

At this point in your treatment, your Health Care Team may recommend several possible options including staying on your current treatment, or changing treatment to: radiation, surgery, immunotherapy, chemotherapy, or an ALK-inhibitor therapy. Your tumor(s) can also become resistant to one therapy but may still respond to another, including others from the same class, or type, of drug. This is why your Health Care Team may switch you to another therapy. The goal is to stop growth of the tumor(s) and prevent progression.

If your doctor should speak with you about possible clinical trials, ask about the purpose of the trial, potential side effects, and what's involved for volunteers.

It's important that you play a part in the decisions and are comfortable with your treatment plan. Make sure that you understand all the options presented. Ask questions—as many as you need in order to be informed.


Your Health Care Team

Your Health Care Team will continue to give you a lot of important information and it can be overwhelming. Don't worry, here are some tips to help you organize and understand this valuable information:

  • Bring a notebook to your appointment and take notes
  • Prepare questions ahead of time and bring them in your notebook
  • Continue to ask questions about all your treatment options until you understand each of them
  • Take someone with you when you visit your oncologist. It can be overwhelming and a Caregiver can help you remember important information

Staying in Control

It’s still your life and you are in charge. While cancer requires changes in how you live your life, you can still keep up with your daily routines if you feel well enough. Be aware of any changes in your health, and always check with your Health Care Team and follow their directions.

Talk with your Health Care Team about:

  • Spending time with family and friends
  • Going to work
  • Taking part in activities and hobbies
  • Going on trips and travel

Discuss Side Effects With Your Health Care Team

  • Take notes on how you are feeling and share with your Health Care Team
  • Talk to your Health Care Team if any issues become difficult to manage

What to Tell Caregivers

Since your ALK+ lung cancer has progressed, you will need to update your Caregivers on how your treatment plan is changing. Every relationship is different and you know best when and how to discuss this update with your loved ones.

Let them know they don’t have to feel sorry for you, or feel worried or sad. There are still options available to you as you continue your fight against ALK+ lung cancer.


Communicate regularly with your Health Care Team and your Caregivers—they are there to help you through this.

Having conversations with others who are not part of your Health Care Team can be difficult and embarrassing. Information is available at the National Cancer Institute website that may make these conversations a little easier. Topics covered include:

  • Working with your Caregivers
  • Family life considerations
  • Talking to your family
  • Maintaining your daily routine
  • Accommodating your work schedule

Be Your Own Advocate!

Seek resources, ask questions, and talk openly with your Health Care Team and Caregivers.

And Something for
Your Caregivers…

You can lean on your support system—don’t feel like you are a burden.
Share this with your Caregiver so he or she can learn how to provide the support you need and deserve.


You are now leaving Living With ALK.

This link will take you to ALKConnect.com, a patient registry designed for patients with anaplastic lymphoma kinase-positive (ALK+) non-small cell lung cancer (NSCLC).

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