RobK Posted September 1, 2018 Share Posted September 1, 2018 My wife was Diagnosed in March with Adenocarcinoma. They did a VATS upper right lobectomy and all was contained in the lobe. Post surgery they did 4 chemo treatments Carboplatin and Alimta (1st round was Cisplatin). She has not completed all 4 and today they did a scan, we get the results on Tuesday. Supposedly the lobectomy removed all cancer from the body. The chemo was a precaution to kill any cells that might have lingered around or escaped. We expect her Tuesday results to be clear - no cancer remains. They tested the mutation and found she had EGFR. The doctor is strongly recommending that she goes on a trial using Traceva as an additional level of caution. This trial is specifically for stage 2, post VATS, post chemo, and all clear. I am struggling to find survival rate data of EGFR, after removal and chemo. We are struggling to decide whether to go through more drugs. Many of the things I have read is that targeted therapies become ineffective over time. If she starts taking them now, will they have no effect if she needs them in the future? Recognizing it is a trial and therefore data is not available, I wonder how likely the cancer is to return without an additional precautionary drug. Are we just doing a cure, then a belt, and finally suspenders..... just in case? My wife has been pretty healthy and has gone through the treatments really well. So now it is time to make the next decision, and just not sure what to do. I'm looking for thoughts and direction - wisdom. Ultimately, we know God through wise counselors will set us on the right track. He has so far and we have had outstanding care. Thanks much everyone. Rob Link to comment Share on other sites More sharing options...
LexieCat Posted September 1, 2018 Share Posted September 1, 2018 Hi, Rob, and welcome. I had a VATS lobectomy just over a year ago. Mine was Stage Ib, and I opted for no adjuvant chemo. Because of my stage, I had that option. I know that for stages of IIa and higher, chemo is always recommended. As you noted, the use of targeted drugs are still in the trial stage, but my understanding is that targeted therapy drugs can keep the cancer from growing, but don't kill it the way chemo does. And cancer cells do tend to become resistant to those drugs after a while. So I think if it were me, I'd go after the cancer with chemo and, assuming there's no evidence of disease after that, hold off on targeted therapy and keep that in reserve in the event of recurrence. Maybe someone with more knowledge here will have a different take on it. Link to comment Share on other sites More sharing options...
hope16 Posted September 1, 2018 Share Posted September 1, 2018 Hi Robk Even we are in the same dilemma. NY husband is stage 1b and EGFR positive. Our oncologist wants him to start on drugs to make the 'dusting' more effective. Sounds like overtreatment but we have couple of months to decide. Please do let us know whatever you decide. Link to comment Share on other sites More sharing options...
Susan Cornett Posted September 1, 2018 Share Posted September 1, 2018 Let me say from personal experience that adenocarcinoma is persistent. My primary tumor spread to my lymph nodes and beyond. Primary and distant tumor were surgically removed, and I had chemo. We squashed the first recurrence (in a lymph node) with chemo and radiation. Now I'm getting ready to start SBRT for a recurrence in my lung. I don't have any of the mutations so I'm not a candidate for any of the targeted therapies. Link to comment Share on other sites More sharing options...
Tom Galli Posted September 1, 2018 Share Posted September 1, 2018 Welcome Rob, Lung cancer is particularly difficult to control because it both spreads and mutates rapidly. Therefore, recurrence after successful treatment is common. How common? Here is a study published in the National Cancer Institute. Reading the entire study reveals that recurrence after successful treatment is common, even with Stage II disease. An oncologist explained that if but one cell in a tumor survived an onslaught of chemotherapy and divided, there was a high probability that one of the new cells would mutate to become resistant to the chemotherapy. Then the slightly altered form of lung cancer spreads rapidly through the body. So the idea is to do everything possible to kill every cell and every possible mutated cell. How much post surgical treatment is enough? I've had three recurrences after surgery and am lucky to be alive, very lucky. We don't use the word cure in the lung cancer community because of the frequency of recurrence. In February, I will have survived 15 years since my diagnosis yet I still see my oncologist 2 times per year. This spring, I had a very concerning CT scan result. So while surgery is the most effective means of achieving no evidence of disease (NED -- our term for "cure"), it is not a sure thing. The cited study shows a 61.2-percent recurrence rate for Stage IIA and a 57.9-percent recurrence rate for Stage IIB after NED treatment. No one enjoys the side effects of lung cancer treatment. They are downright awful. But consider the discomfort of enduring treatment side effects to death by lung cancer. Knowing what I went through chasing metastatic lung cancer after surgery, then after chemotherapy and more chemotherapy, if I were presented with a surer kill alternative I'd take it. Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted September 1, 2018 Share Posted September 1, 2018 Here's a fairly recent article on the status of studies regarding adjuvant targeted therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5723861/. It sounds pretty inconclusive overall, though there are hints that it might help SOME patients who have received curative treatment. It still looks to me as if waiting to use it in the event of a recurrence makes equal sense. Bottom line, I guess, is that it's a pretty personal choice. Even with a SLIGHT potential benefit for Stage Ib survivors, I opted not to go with adjuvant chemo. If it provided a clear-cut significant chance of preventing recurrence I would have gone for it, but as it is, I did not want to put myself through it for the very remote possibility it might help. Someone else might weigh the considerations differently and decide on a different course of action. Link to comment Share on other sites More sharing options...
RobK Posted September 3, 2018 Author Share Posted September 3, 2018 Thanks everyone. This is a wicked disease and the odds of recurrence are bothersome, but we need to be realistic. Diane and I keep picking up the medical staff using the term 'when" rather than 'if'. My original post was a bit unclear. Diane has completed 4 chemo treatments post VATs and now the suggestion is Traceva. LexiCat and Tom, your perspectives are quite valuable, while opposing. You have identified our opposing struggle - do everything now to prevent or kick the can as far down the road as possible OR delay until we need it and then use it. I'm not a conspiracy type of guy, but also recognize this there are temptations to make lots of money by having patients stay for longer treatment. Thank you for the studies, I will read them. Hope16, sorry to hear you are in a similar position. Please know you are in my prayers. I will definitely keep you updated. Our next appointment is Tuesday to get the results of the CT scan. More to come after that appointment. Link to comment Share on other sites More sharing options...
LexieCat Posted September 3, 2018 Share Posted September 3, 2018 Keep us posted--will be hoping for great results on the scan! And as far as further treatment goes, I think either is a reasonable course of action. I think what's most important is that you decide you'll be OK with your decision, however things turn out. Nothing any of us can do will guarantee that there will be no recurrence/spread. I made "future me" promise not to beat myself up if it came back, having not had the chemo. I'm pretty sure I can keep that promise. Link to comment Share on other sites More sharing options...
RobK Posted September 3, 2018 Author Share Posted September 3, 2018 LexiCat, Diane and I have been married for 28 years, in my humanness nothing short of her being cured is desired by me. We are researching to make the best human decision. Having said that, we know God is sovereign and His plan will ultimately succeed. If she beats me to heaven she still wins! Link to comment Share on other sites More sharing options...
RobK Posted September 5, 2018 Author Share Posted September 5, 2018 Hello everyone, Diane and met with her Onc yesterday. the CT showed no cancer. Yipee!!! This is scan 1 of hopefully many more clean ones in the coming quarters and years! We talked at length about her participating in the clinical trial. He believes that if she qualifies and is accepted that she should take the EGFR targeted drugs. Any chance to further reduce recurrence is worth attempting. He said there are several other drug options, so if Traceva stops working and an EGFR cancer returns there are other options to turn to and continue the fight. I cited many of the studies that have been shared here, he seemed to not feel comfortable with that data and scheduled an appointment for us to meet with a research nurse on Friday. I'd value any questions that those who have traveled this journey might suggest I ask the research nurse. Thanks everyone! Rob Link to comment Share on other sites More sharing options...
BridgetO Posted September 5, 2018 Share Posted September 5, 2018 Hi Rob, Great news!. We love NED (no evidence of disease). Sorry I don't have any advice on t the clinical trial. All my best to you and Diane whatever she decides. Bridget O Link to comment Share on other sites More sharing options...
Judy M. Posted September 5, 2018 Share Posted September 5, 2018 Congratulations on NED status. Thanks for sharing and encouraging the rest of us. Like you, I hope she sees many more of these in the years to come. Judy M. Link to comment Share on other sites More sharing options...
LexieCat Posted September 5, 2018 Share Posted September 5, 2018 No suggestions for questions, I'm afraid, but a big WooHOO on the scan results! Link to comment Share on other sites More sharing options...
Steff Posted September 5, 2018 Share Posted September 5, 2018 Time for the happy dance!!! Congrats on NED Link to comment Share on other sites More sharing options...
Roz Posted September 6, 2018 Share Posted September 6, 2018 Congrats on the scan!! Link to comment Share on other sites More sharing options...
LaurenH Posted September 6, 2018 Share Posted September 6, 2018 That's great news, Rob! We are happy for you and Diane! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Tom Galli Posted September 6, 2018 Share Posted September 6, 2018 RobK, I'm out of my depth because my experience with targeted therapy and Tarceva was very early on in the drug's deployment. I'm intrigued that the practice has a "research nurse." There are so many new advances happening today in cancer and in lung cancer, particularly in immunotherapy, that a full time nurse to review literature makes sense. My wife is an RN. She understands all the medical terms and conditions in the journal articles so a nurse is a perfect fit for the job. I guess I'd approach the nurse the same way you approached your wife's doctor. Show him or her the research you've found. Great news on NED! Stay the course. Tom Link to comment Share on other sites More sharing options...
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