Ashwa Posted April 11, 2020 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 Link to comment Share on other sites More sharing options...
Lin wilki Posted April 11, 2020 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 Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 12, 2020 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. Link to comment Share on other sites More sharing options...
Ashwa Posted April 12, 2020 Author 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. Link to comment Share on other sites More sharing options...
TJM Posted April 30, 2020 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 Link to comment Share on other sites More sharing options...
Helge Posted August 8, 2020 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. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 8, 2020 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. Link to comment Share on other sites More sharing options...
GaryG Posted August 8, 2020 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. Link to comment Share on other sites More sharing options...
GaryG Posted August 8, 2020 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. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 9, 2020 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. Link to comment Share on other sites More sharing options...
GaryG Posted August 9, 2020 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. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 9, 2020 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! Link to comment Share on other sites More sharing options...
LexieCat Posted August 9, 2020 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. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 9, 2020 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. Link to comment Share on other sites More sharing options...
LexieCat Posted August 9, 2020 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. Link to comment Share on other sites More sharing options...
MJ1950 Posted August 21, 2020 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 Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 21, 2020 Share Posted August 21, 2020 Hi Jean, Kansas greetings from Overland Park! Michelle Link to comment Share on other sites More sharing options...
Antonin Posted January 10, 2021 Share Posted January 10, 2021 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. Link to comment Share on other sites More sharing options...
Deb W Posted January 11, 2021 Share Posted January 11, 2021 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. Link to comment Share on other sites More sharing options...
GaryG Posted January 11, 2021 Share Posted January 11, 2021 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. Link to comment Share on other sites More sharing options...
Antonin Posted January 13, 2021 Share Posted January 13, 2021 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 ! Link to comment Share on other sites More sharing options...
Antonin Posted January 13, 2021 Share Posted January 13, 2021 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! Link to comment Share on other sites More sharing options...
islandgirls Posted February 15, 2021 Share Posted February 15, 2021 I am eagerly following this, as my boyfriend is Stage IV adenocarcinoma with brain mets (innumerable tumors). NextGen sequencing with her2mutation. PD-L1 was 0. Was suggested to start carboplatin, pemetrexed and Pembrolizumab, reserving HER2 directed therapy for salvage at the time of future progressions. I would LOVE postive outcome stories of an otherwise healthy 55-year-old that has survived more than the prognosis given today of 6-12 months. You are all warriors and I am so motivated by the role of positivity in this battle. I just need him to see that there is hope. Unless I'm being too Pollyanna and fooling myself? Bless you all!!!!! Link to comment Share on other sites More sharing options...
GaryG Posted February 15, 2021 Share Posted February 15, 2021 Hi islandgirls and welcome. Many of us on this board receive that treatment and we refer to it as the Triplet. You can read many postings on the triplet in the Chemotherapy discussion thread. I was diagnosed as stage III B, no mutations and my PDL-1 is zero. After 4 treatment the Carboplatin was dropped and I am now on Alimta and Keytruda. My oncologist told me I had excellent results and other patients reported the same. I hope it works for you with minimal side effects so please if you have any questions do not hesitate to ask. Link to comment Share on other sites More sharing options...
LexieCat Posted February 15, 2021 Share Posted February 15, 2021 Same for me--I have Stage IV adenocarcinoma, have had a great response to the triplet and am now on the same combo of Alimta (pemetrexed) and Keytruda (pembrolizumab) as Gary. I didn't have brain mets (I do have a small bone met). Often radiation is used to treat brain mets. Any talk about that? Lung cancer isn't what it used to be. We have survivors of advanced stage cancer who are 15-20 years out from their diagnoses. So not quite time to be throwing in the towel. New discoveries and new treatments are coming out every day. Link to comment Share on other sites More sharing options...
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