What a Difference a Decade + Makes…
Seeing these powerful words, from Professor Sanjay Popat, reminded me of a post by Bernadette Sumner on our Facebook group in October 2022.
Bernadette was incredibly generous in sharing her research, knowledge and experience of living with non-small cell lung cancer. I decided her message warranted a larger audience and so share it here.
You can also watch Professor Popat's full speech, from ALK+ UK patient conference, HERE.
Angela, EGFR+ UK Chair
BERNADETTE’s FACEBOOK post, October 2022
I’ve copied and pasted this after reading an inspiring post I read when newly diagnosed. A member of another group responded to a family who was given the same advice that her own Oncologist gave her back when she was diagnosed in 2010:
I wanted to share how drastically things have changed in the world of Stage IV NSCLC Patients, and lung cancer in general.
Hopefully this will continue to inspire those who live by the motto to “just hold on until the next new thing comes out“.
I can honestly say that almost nothing that exists today (except PET/CT scans, IV chemo infusions of cisplatin/carboplatin/Docetaxol), were even a part of the world of Stage IV NSCLC Patients, back then.
Here are several examples of things that didn’t exist at all back in 2010 when I was diagnosed, but are totally standard, or available now:
1) No such thing as taking TKI’s as first line therapy; you had to fail 1st line chemotherapy before being considered for Erlotinib (Tarceva), an early generation TKI.
2) No such thing as Liquid Biopsies, which I think came out from Foundation Therapy in 2015; now there are even multiple major labs that provide this service.
3) No such thing as routinely doing mutations/genetic/molecular testing up front. Mine wasn’t done until 9 months after diagnosis, and 6 months after my chemo combo/1st line was completed, but only because they were trying to qualify me for a clinical trial.
4) Literally, only a few mutations had even been identified ( EGFR, ALK, KRAS, ROS-1). Nothing like the laundry list which are identifiable in a lab today (such as RET, B-Raf, HER2, NTRK, etc.)
5) No such thing as Osimertinib (Tagrisso). A TKI that protects the brain as well as the body.
6) No such thing as multiple first line TKI’s for patients with EGFR. In the USA, Osimertinib is standard 1st line. I originally started on the only thing available at the time of my diagnosis in 2011. I have had an excellent response and I’m still on Erlotinib 10+ years later!
7) SBRT radiation wasn’t used to zap individual, small limited areas of progression AKA “Oligometastatic disease”.
8) Oligometastasis had not yet been identified, as a concept.
9) Several of the newer drugs used in combination to treat patients once they develop resistance to Osimertinib, didn’t exist.
10) Immunotherapy drugs didn’t exist.
11) There was no discussion, nor measurement of PD-1 nor PD-L1.
12) The concept of Personalised Medicine didn’t exist in 2010.
13) Lung Cancer is now being viewed as a manageable, chronic disease, instead of a terminal one. This remarkable breakthrough is a direct result of the development of personalised medicine, which is highly supported via the advances in molecular and genetic testing.
14) On-skin “auto injectors” for those on Neulasta (to prevent neutropenia) during chemo infusions, didn’t exist. You used to have to drive back to the infusion centre the day after your chemo, to get your Neulasta shot.
15) We must all give thanks for the development and major improvement of online social media, plus Facebook support groups. These too were either non-existent, not well utilised, or certainly not as informative, as those that exist for all of us, today!”
My wish is that this list gives tremendous hope to patients who are new to this “club” so to speak, to those who may be feeling really down in the dumps (note: it’s perfectly OK to have these days), or to those who are scared about tomorrow, or your future.
If you and/or your loved one can “just hold on until the next new thing comes out“, it might just be the next drug, protocol, trial, and/or procedure, which gets you to the next step of survivorship.
Keep in mind, that you’re a “Survivor”, from the day you are diagnosed.
Here’s to each of us, being able to get to that “next new thing” and adding additional years to our “survivorship".
Thank you Bernadette, we miss you x