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
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.
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.