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I hope you are all well and happily preparing for Halloween.
Just a short update, my mother met with the oncologist to receive her second round of chemo last Friday. They will give her a CT scan in about 3 weeks to see if the chemo is effective in shrinking her tumor at all (fingers crossed). They did mention that her lung tumor has the EFGR mutation. The oncologist mentioned to her that the EFGR mutation is unique to her tumor and that she may be a candidate for immunotherapies (Opdivo) further down the line. The oncologist mentioned to her that the EFGR mutation is found only in her lung tumor and is not naturally forming elsewhere in her body/bloodstream. I was not with her during this meeting/treatment and was confused by that statement.
Can anyone offer an explanation about the EFGR mutation being unique to her tumor and not her body and what this means? Would this typically make an immunotherapy more effective (some of my research seems to show that it would be). Thank you all for your insight.
Have a good night. God Bless.
Lisa, welcome here.
Shocked. I've been there. My surprise diagnosis was similar to yours. To clarify, are you diagnosed with small cell lung cancer? I also assume your stage of disease is not yet confirmed because you mention another CT scan Wednesday to see if other tumors can be located. If it is any consolation, we had nearly the same sized tumor but mine was discovered nearly 13 years ago. And, my initial survivor rate was pegged at somewhere around 18%. So your first conclusion you might want to consider is if I can live, so can you.
Now consider some details. Information is power, especially when a lung cancer survivor, and you are one of those. Here is some easily read information that ought help you understand our disease - https://www.lungevity.org/about-lung-cancer/lung-cancer-101 In your reading, pay close attention to the Types of Cancer and Stages of Cancer. During you next chemo session or consultation ask the nurse or doctor to confirm both your type and state of cancer, then tell us. Each type gets a little different treatment. My type - non small cell, Squamous cell - is treated differently than non small cell adenocarcinoma. And, both of these are treated differently than small cell lung cancer. So confirm your type and stage and tell us about it. Those of us with experience with your type and stage can then provide some "inside information."
Oncology is a tough medical practice. My oncologist during my first several consultations was remote but as my treatment progressed, I realized his remoteness was not reflective of his attitude, it was an indication that he was thinking, particularly, thinking about what to do next. Even today in almost 13 years of association with my oncologist, I wouldn't call him a "warm and fuzzy guy" but he is intelligent and up to date on state-of-art treatments. Treating cancer is very hard and perhaps your sensing of a lack of bedside manner is your doctor thinking about your case. Also, perhaps asking questions about your cancer spurred from information you've read may help break the ice at the next consultation. A confession, I am a very inquisitive guy, but in early consultations, was too afraid to ask many questions. My wife took the lead in that department and this points to "inside information" - bring someone along to your next doctor consultation to help you ask and understand answers to questions. When newly diagnosed, all these medical terms are hard to understand so take notes. You may find some additional information of use here -
Stay the course.
Good morning, Lisa. I'm sorry that you have that diagnosis but glad you are here. I was diagnosed with Stage IV earlier this year and this site - and the wonderful contributors - have been a fantastic support system. Along with following the treatment regimen set out by your medical team, the best weapon for fighting is your attitude. Don't give in to the scary, dark thoughts. Every day your feet hit the floor is a day to be celebrated. Attitude is such a big part of this fight. Surrounding yourself with a great support team - medical, family, friends - is also very important.
Let me also shed a little light on statistics: they are just that -statistics. Those numbers don't define you or determine your outcome - they are a probability. But, as a wise physician told me earlier this year, those stats are generally 5 years old and don't take into account your age or your overall history. The stats include people who started chemo and dropped out, as well as those who didn't take chemo. Those stats also don't include those patients who are benefiting from the 6 new lung cancer drugs approved by the FDA last year.
Please keep us posted.