My Disease Has Progressed

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

So What Exactly 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 continue to try and outsmart your treatment. But you can still try to stay ahead with the help of ongoing research.

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

Progression Doesn’t Mean No Options

Talk with your Care Team about all your options including, but not limited to radiation, surgery, immunotherapy, and targeted therapy. With all the amazing 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.

Finding an Alternate Strategy

At this point in your treatment, your 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 be responsive to another, including others from the same class. This is why your Care Team may switch you to another therapy and feel confident with your chance of achieving success. At this point, the goal is to stop growth of the tumor(s) and prevent progression.

Your healthcare team may talk with you about enrolling in a clinical trial. You should talk with your treating healthcare provider about whether or not this is an option for you and the risks associated with participating in clinical trials.

To make things easier for you, we have provided the link to Clinicaltrials.gov, a global database of clinical studies underway.

It's important that you feel comfortable with and weigh in on your treatment plan and that you understand all the options presented. Ask questions—as many as you need in order to be informed.

 

Working With Your Care Team

Your 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:

  • Always bring a notebook to your appointment and take notes
  • Prepare questions ahead of time and bring them in your notebook
  • Continue to ask about all your treatment options until you understand each of them
  • Take someone with you when you visit your oncologist

Maintaining Control of Your Life

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 Care Team and follow their recommendations.

Talk with your doctor about:

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

Continue to Communicate With Your Care Team About Any Side Effects You Experience

Take notes on how you are feeling and share with your Care Team.

Talk to your Care Team if any issues become unmanageable.

What to Tell Care Partners

Since your ALK+ lung cancer has progressed, you will need to update your Care Partners on how your treatment plan is changing. Every relationship has its own dynamic 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 Care Team and your Care Partners—they are there to help you through this.


We know that having conversations with others who are not your Care Team can be difficult and embarrassing. To make these conversations a little easier, we've selected five resources: Teaming Up With Your Partner | Balancing Your Family | Talking to Your Children | Daily Routine | and Resuming Work. These have excellent tips on how to navigate these hard discussions.

Be Your Own Advocate!

Be proactive and seek resources, ask questions, and talk openly with your Care Team and Care Partner.

And Something for
Your Care Partners…

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

 
 

LIVING WITH ALK

This site is intended for US patients and caregivers only.

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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