Ashwa 2 Posted April 11, 2020 Report Share Posted April 11, 2020 Dear Warriors My mother (Age 67) is diagnosed with NSCLC Lung adenocarcinoma in stage IVa. All markers are negative for targeted therapy, now the only option is chemotherapy. Our doctor suggested Pemetrexed and carboplatin combination therapy. We are scarred about side effects causes due to the chemo. Sometimes we are thinking to skip the treatment. Please suggest us for the best. I considered this is the best platform to discuss this issue. Thank you Quote Link to post Share on other sites
Lin wilki 295 Posted April 11, 2020 Report Share Posted April 11, 2020 That is the standard cocktail. Give it a chance! They help you with meds for side effects. Don’t give up you may get some good years Ashwa, Tom Galli, Rower Michelle and 2 others 5 Quote Link to post Share on other sites
Rower Michelle 2,423 Posted April 12, 2020 Report Share Posted April 12, 2020 I agree with my friend Lin. Thats the standard cocktail which can be very effective. I had one shot of the triplet before the biomarkers came back. The side effects are very manageable. People with Stage IV Lung Cancer are now living with it as a chronic disease for years now. Go for it. ColleenRae, Ellen D, JamesB and 3 others 6 Quote Link to post Share on other sites
Ashwa 2 Posted April 12, 2020 Author Report Share Posted April 12, 2020 4 hours ago, Lin wilki said: That is the standard cocktail. Give it a chance! They help you with meds for side effects. Don’t give up you may get some good years Thank you very much for your valuable advice. AngelL 1 Quote Link to post Share on other sites
TJM 603 Posted April 30, 2020 Report Share Posted April 30, 2020 I'm doing it right now. Not fun but not nearly as bad as I feared. Do it! Peace Tom Steff, JamesB, AngelL and 3 others 6 Quote Link to post Share on other sites
Helge 2 Posted August 8, 2020 Report Share Posted August 8, 2020 Myself same staging. Aldo firstly no visible candidate for targeted therapy. But my oncologidt did not give up: Running the same test (FISH) three times finally found amutation. My advice: test again and again. As the tests are not very sensitive. Tom Galli and Rower Michelle 2 Quote Link to post Share on other sites
Rower Michelle 2,423 Posted August 8, 2020 Report Share Posted August 8, 2020 Totally agree. Same thing happened to me, FISH negative, Foundation One NGS identified the ALK mutation. My doc kept pushing and it saved my life. Tom Galli and LouT 2 Quote Link to post Share on other sites
GaryG 720 Posted August 8, 2020 Report Share Posted August 8, 2020 1 hour ago, Helge said: Myself same staging. Aldo firstly no visible candidate for targeted therapy. But my oncologidt did not give up: Running the same test (FISH) three times finally found amutation. My advice: test again and again. As the tests are not very sensitive. Hi Helge and/or Michelle: Could you please explain how the test (FISH) runs. Is it from tissue after biopsy or something else. Thank you. Quote Link to post Share on other sites
GaryG 720 Posted August 8, 2020 Report Share Posted August 8, 2020 Hi Ashwa: I am currently taking the same chemos in addition to Kytruda which is an immunotherapy treatment. You might inquire why it is not included. We all have different side effects but none of them is worth skipping treatment. Tom Galli 1 Quote Link to post Share on other sites
Rower Michelle 2,423 Posted August 9, 2020 Report Share Posted August 9, 2020 Hi. The FISH is from the tissue biopsy, typically takes about 48-72 hours for results. The more sensitive biomarker tests take anywhere from 2-3 weeks. GaryG 1 Quote Link to post Share on other sites
GaryG 720 Posted August 9, 2020 Report Share Posted August 9, 2020 10 hours ago, Rower Michelle said: Hi. The FISH is from the tissue biopsy, typically takes about 48-72 hours for results. The more sensitive biomarker tests take anywhere from 2-3 weeks. Thank you for the quick response. There is so much to learn about lung cancer these days for a patient to keep up. I discovered that my test for the ALK mutation is called IHC validated method (Ventana ALK (D5F3). According to this study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280637/) it is as accurate and beneficial as the FISH method. Nevertheless I will still follow up with my oncologist. I am posting my finding in case another reader has the same question. Thank you again. Quote Link to post Share on other sites
Rower Michelle 2,423 Posted August 9, 2020 Report Share Posted August 9, 2020 There’s a steep learning curve with this, it’s like learning a foreign language. There’s some great resources from the Go2Foundation on YouTube to help you understand the therapies available and what questions you can ask your doctors. The good news is that every year more options get approved and from 2016-2017 saw the greatest improvement in survivorship. Keep asking questions! GaryG, LexieCat and Tom Galli 3 Quote Link to post Share on other sites
LexieCat 3,131 Posted August 9, 2020 Report Share Posted August 9, 2020 Thanks, Michelle, This is stuff I definitely need to get up to speed on. It's been useful to have been exposed to all the discussions you Stage IV people have been having over the past 3 years I've been on here, but the info tends not to stick when it has no personal implications for one's own treatment. As it is, I'm trying not to go down too many rabbit holes till I have a definitive diagnosis with testing results. I don't want to confuse myself with less relevant (for me) information, at least until I get a handle on what IS relevant for me. Tom Galli and GaryG 2 Quote Link to post Share on other sites
Rower Michelle 2,423 Posted August 9, 2020 Report Share Posted August 9, 2020 Totally understand, once you have the biopsy then you can dive in, but really Google is terribly out of date, I pretty much stick to Go2 and ASCO or the International Conference. It really gets very specific. It’s rare to have a garden variety type these days. Very cool things are on the horizon too. GaryG and Suzanna 2 Quote Link to post Share on other sites
LexieCat 3,131 Posted August 9, 2020 Report Share Posted August 9, 2020 I have a subscription to "UpToDate" which is, as it suggests, constantly updated with the latest research. I subscribed when I was originally diagnosed and found it extremely helpful. I just re-started my subscription. I've been reading about how bronchoscopies are done (lol, to focus on what is LITERALLY in front of me). ETA: UpToDate doesn't have EVERYTHING, but I've found it to be a good starting point to understand the various diagnoses/testing/treatments. Tom Galli 1 Quote Link to post Share on other sites
MJ1950 6 Posted August 21, 2020 Report Share Posted August 21, 2020 Do not skip treatment. I am a 14 year survivor. There were no targeted therapies when I went through cancer., But sometimes the tried and true work well also. I had very few side effects other than loosing my hair (it grew back) and extreme fatigue. Keep working with the doctors, things are rapidly changing. Btw, your mom is younger that me and I would try chemo again if needed. Jean jack14, GaryG, Suzanna and 3 others 6 Quote Link to post Share on other sites
Rower Michelle 2,423 Posted August 21, 2020 Report Share Posted August 21, 2020 Hi Jean, Kansas greetings from Overland Park! Michelle Quote Link to post Share on other sites
Antonin 6 Posted January 10 Report Share Posted January 10 Bonjour ! I was diagnosed with nsclc stage 4 with small "métastase" by the oesophagus on October 1st. Treatments (triplets: Keytruda, Carboplatin and 96 hours bottle through a Picc-line with 5fu) started at the beginning of December. I am suffering little from the side effets ; cold sores, fatigue and nauseas. Constipation comes and goes. Fibers help. I will have 4 big treatments (2/4 done already next the #3 will be on the 25th) and keep on with the immunotherapy for two years. Looking forward sharing more with you as the healing progresses. LouT and Tom Galli 2 Quote Link to post Share on other sites
Deb W 308 Posted January 11 Report Share Posted January 11 Ha Ashwa, I was diagnosed with Stage IV in April 2020. I had the triplet - Carboplatin, Alimta and Keytruda (4 treatments). After that the Carboplatin was dropped, then the Alimta was dropped. I had clear scans in August, October and December. I am in remission. I found out I had the MET mutation , but my former oncologist overlooked it - blamed it on the surgeon who did the endoscopy and said he didn't send him the report. If I had known I had the MET mutation my treatment would have been targeted therapy with Trabecta. My point is the triplet and standard treatment worked for me. I think it's worth the risk of side effects. I was supposed to be on Keytruda for a total of 2 years, however, I recently was told I have immunotherapy induced colitis. I skipped the last treatment and was put on a 4-week course of steroids (my immune system is in overdrive). I will find out in a week or so if they plan on starting me back on the Keytruda. LouT, Antonin and GaryG 3 Quote Link to post Share on other sites
GaryG 720 Posted January 11 Report Share Posted January 11 Bonjour Antonin et bienvenue parmi nous: Sorry to hear about your diagnoses. This is the first time I hear about 5fu since the passing of my first wife 15 years ago. I guess it must be still working. Many of us are on the triplet generally taking Alitma instead of 5fu. Those side effects sound familiar and some of us took medication to lessen their effect. What are you doing to control them? We look forward to seeing post your results and ask any questions you might have. Once again welcome. Tom Galli and Antonin 2 Quote Link to post Share on other sites
Antonin 6 Posted January 13 Report Share Posted January 13 Good evening ! By day my energy level is fine, I have good appetite and keep my weight stable. I need to go weekly to the health unit for changing the dressing for my Picc-line and remove the hose attached to it 96 hours with the 5fu after each sessions. Today I have succeeded in eliminating the mucosis on my tongue . I started however to be itchy all over. Aveno seems to help with glycerine soap. Magic mouth wash, salty and soda rince and syrup with codeine to stop the cough. I never used so much the services of my pharmacy! Thank you for caring ! Quote Link to post Share on other sites
Antonin 6 Posted January 13 Report Share Posted January 13 On 1/10/2021 at 7:21 PM, Deb W said: Ha Ashwa, I was diagnosed with Stage IV in April 2020. I had the triplet - Carboplatin, Alimta and Keytruda (4 treatments). After that the Carboplatin was dropped, then the Alimta was dropped. I had clear scans in August, October and December. I am in remission. I found out I had the MET mutation , but my former oncologist overlooked it - blamed it on the surgeon who did the endoscopy and said he didn't send him the report. If I had known I had the MET mutation my treatment would have been targeted therapy with Trabecta. My point is the triplet and standard treatment worked for me. I think it's worth the risk of side effects. I was supposed to be on Keytruda for a total of 2 years, however, I recently was told I have immunotherapy induced colitis. I skipped the last treatment and was put on a 4-week course of steroids (my immune system is in overdrive). I will find out in a week or so if they plan on starting me back on the Keytruda. This looks a lot like my treatments and am looking brightly toward the future. Wishing you ALL the best. Please keep me informed. Merci! GaryG 1 Quote Link to post Share on other sites
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