Advocate for my mom
Hi everyone. I am very new to this and I don't really know where to begin. I am 22 years old, I just got married a few weeks ago. Now, introducing myself I can say that I am my moms patient advocate..a role that I never thought I would be enduring. Last weekend I took my mom into the hospital for confusion and weakness on her right side. She has Multiple Sclerosis so we assumed that her symptoms were because of that. Little did we know that later that night we would learn that she has stage 4 lung cancer that has met to her brain. After being transported to a larger hospital late that evening, we were told that she would have surgery to remove the mass in her brain the next morning..which they did. They said they were able to get everything they could see out. The doctors are assuming she will start full body chemo to treat the lung mass and radiation to remove what is left in her brain.
I am young, but I am smart, capable and ready to do whatever it takes. My mom is my best friend. She always has been and always will be. She is the type of mom everyone dreams of having. So full of life and has made an impact on everyones life she comes across.
It is very difficult for me to take in help from others. The same day my mom was diagnosed, my grandpa passed away. The day I was able to bring her home after surgery was the day of his visitation. I learned that I do not trust ANYONE besides me to handle her care or medications. I know her so well I can tell whats going on with her before she even realizes...
Why I'm writing...
I want to know as much as I possibly can on how to fight this with her. I want to know alternative treatments, I want second opinions, information on diet, therapy and anything and everything I can possibly do and I want to absorb as much information as I can to do everything in my power to fight with her, because all my life she has fought with me.
Please let me know if anyone has any tips, recommendations, things they have heard, read or learned about alternative or added treatment options that can help the cancer, the process with radiation or chemo or anything in between. Even if it is a ointment, brain exercise, whatever it may be.
Thank you,
Terin
Hi Terin. First, let me say that I am sorry to hear about your mom's diagnosis and that it is great that you are willing to be her advocate. There is much to learn and I will try to provide some useful information without over-inundating you from the start.
This article from our contributor Dusty offers information for every newly diagnosed patient: https://lungcancer.net/living/newly-diagnosed-information/. It mentions testing for biomarkers, which is very important for the latest treatments. This article goes into why it is important: https://lungcancer.net/living/biomarker-testing/.
You mentioned alternative treatments. This article from our editorial team looks at alternative and complimentary therapies: https://lungcancer.net/complementary-alternative/.
Finally, I want to note that being a caregiver will not always be easy. It is important to take care of yourself as well. Know that this community is here for you. Best, Richard (LungCancer.net Team)
Richard,
Thank you for providing such useful information..I appreciate you responding to my post and I am grateful to be a part of this community.
We have finally received her molecular results: her PDL1 came back high at 80% (meaning she is a candidate for immunotherapy) and she has the KRAS mutation G12C. We are disappointed that she will most likely receive chemotherapy treatments through an IV instead of the tab/pill form that would mean she would not loose her hair. Has anyone on this forum taken Keytruda? The local oncologist (we are getting a second opinion) is mentioning that she would begin chemo and keytruda at the same time?
Thank you,
TerinHi Terin. Sounds like good news that your mom is a candidate for the immunotherapy. I know there are plenty of people in the community who have used Keytruda. I can't personally speak to it, but here is an overview from our editorial team: https://lungcancer.net/medications/keytruda-reviews-how-well-works-side-effects/. Hopefully others will chime in with their experiences. Best, Richard (LungCancer.net Team)
