Hi,
My mom is a non-smoker, 68y old, and she was recently diagnosed with stage IV lung cancer with brain and bones metastasis and both EGFR positive and PDL-1 positive (= 95%). Her encologist put her on 80mg Tagrisso/osimertinib daily and we are about to start the treatment. I have zero medical background and until this date, I never felt I had the desperate need to research and understand what could be the best thing we can do to fight this disease. I read a lot about my mom's condition and I understand it is not curable. I also understand that Tagrisso is a temporarily treatment until the body eventually gains resistance to it.
Following are some questions I would sincerely appreciate if someone can help me get answers to:
- Since mom's PDL is positive, is she eligible for immunotherapy? I read that this has shown great progress and better prognosis compared to TKI. When would her oncologist put her on this treatment?
- I booked an appointment with 2 alternative medicine doctors knowing in advance that these are not scientifically proven but since the medicine itself prescribed by the oncologist is not a cure, I want to maximise my mom's chances. both prescribed a intensive vitamins course + diet food (no meat, no dairy, mainly plant's based food). I showed the viatmins prescription to the oncologist and his advice was these are useless and better not to take them as "we do not know which interactions they might have with the treatment, if any". I am insisting and I want to have a clear cut answer. who can help me with this? I am happy to share the list.
Many thanks in advance
Ray
Reply # - June 27, 2019, 11:17 AM
Hi Ray, Welcome to Grace. I
Hi Ray,
Welcome to Grace. I'm so sorry you're mom has been diagnosed with stage IV nsclc. This is a lot for her and for you to take in. There's so much to learn in such a short period of time, I understand.
It sounds like your mom is on the right track with tagrisso. It's the new standard of care for first-line treatment for those with an EGFR mutation. In a head to head comparison study tagrisso was the clear best choice. On the other hand, immunotherapies may be a poor choice for anyone with an EGFR mutation even those with a high expression of PD L1 (there is some new data suggesting some combos that include avastin might be appropriate choices but there isn't enough data to say for sure. We don't know why yet but this mutation doesn't respond to immunotherapies. This is new territory so understanding the why's and how's isn't yet understood. In fact giving io first line seems to cause pneumonitis when EGFR tki is given in the future.
It's true that there are suppliments that cause adverse reactions and interfere with other anti-cancer treatments. Since there's no good data on most of these it's impossible to know what effects they may have. Supplements aren't regulated either so it's difficult to know what exactly you're getting.
About nutrition, be aware that these drugs are toxic and can cause loss of appetite as well as changes in tastes. It may be best to not be too strict on her intake, sometimes just getting calories is hard enough. A typical well-rounded diet has be shown to be the best way to go but sometimes ice cream or a burger is all a person is willing to eat.
I'll get resources for the info I gave above within the day.
Good luck to your mom and you,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - June 27, 2019, 12:38 PM
Here Dr West discusses driver
Here Dr West discusses driver mutation (such as EGFR) and immunotherapy
Here is a video discussion about immunotherapy and driver mutations such as EGFR and ALK
There's a lot to wade through here. This is the complete "Targeted therapies Patient Forum, April 6, 2019" note there are 13 videos in the playlist (ROS1, ALK are seperate mutations and different from EGFR)
This page is a good guide to foods to avoid and how to manage side effects.
It will also be helpful to read and listen to some of the articles and videos in the Basic Cancer Info section. There is a ton in helpful info. While a lot of this info is 10 years old it still has much to offer the beginning learner.
Ask questions along the way. I hope this helps you learn how to help your mom. You didn't ask but I'm going to add, unless she is used to an all plant diet don't hold her too accountable for it and remember quality of life and longevity are the 2 outcomes from which all else should be measured.
Take care,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.