GBJ

@RJNThanks. Still working on getting the molecular testing done. The last was done during original diagnosis, using the biopsy samples. Now trying to get the liquid biopsy based testing done. Another question, do doctor's prescribe adjuvent radiotherapy for stage 4. I have some in the lymph nodes, just wondering if radiotherapy would work. My doctor never mentioned it. Thanks

@Karen_LThanks for the very kind words. @JuneKThanks. We are probably in the same boat now with the progression. Happy to hear that you found a targeted gene for which there are treatment options. Good luck, my prayers are with you. So an update after meeting my onc-doc. He said the progression was real, but local. No more psuedo-progression. But Alimta and Keytruda are no more working. So I have been switched to Paclitaxel/Carboplatin/Becavizumab regimen for the next 6 cycles, with scans after every 3 cycles. Platimum treatment worked for me in the first round before it was removed during maintenance therapy, so the doctor feels it will help contain/minimize the growth this time as well. If this works, then they will stop Paclitaxel/Carboplatin after 6 cycles and continue with Becavizumab from then on. If not, Docetaxel would be the way forward. The doctor also suggested molecular testing, but was not persistent on it. He does not think there will any ALK/ROS/EGFR mutation now. He thinks because immunotherapy worked for me for almost 20 months, it is highly likely ALK/ROS/EGFR mutations are present. Since molecular testing is not covered under insurance here, and more so, technicians/pathologists are not well trained in performing the test or reading the results, there have been lot of cases of false positives/negatives. Have a friend who is a molecular oncology geneticist who does this for a living, specifically for lung cancer. He himself says that he would not trust the results from these molecular testing studies most of the time, as he has seen a lot of such false positives/negatives. Will give it a try anyways. Anyone here have an idea on the side-effects of Paclitaxel/Becavizumab. The doctor told me issues of high BP/palpitation and neuropathy (tingling of hands and legs etc.), but other than that, what can one expect. Any information will be helpful. Thanks. GBJ

Thanks Tom and Karen. Meeting with the oncologist today. Will know more what he has to say. Will surely ask for molecular testing (rare in India) and about radiation therapy (SBRT is rare in India) The results are a huge setback. Trying to be positive in all of this. GBJ

Hi All, it been a while since I posted on this site. Dx with Stage IV A adenocarcinoma Lung in Feb 2022, have completed 6 cycles of carboplatin, 25 of Alimta and 24 of Keytruda by September 23. Have been on maintenance therapy - carboplatin dropped - since July 2022. First 3 scans taken until April 2023 showed significant regression in nodes and lesions, almost 90% gone. PET scan taken in July showed increase in size and SUV by a few mm, same location. No new location found as per the oncologist. Since I have been on immunotherapy, the oncologist was thinking it is more likely a pseudo-progression caused by the immune cells generating a response rather than growth. He has asked for continued treatment with Alimta and Keytruda for the next 3 cycles, with a follow up scan. He said, since I do not have any other symptoms and all my blood markers are normal, it should be okay. Another PET scan taken this week. Results are back with further increase in size and metabolic activity. Also new lesion detected in D2 spinous process. Awaiting doctor's appointment. The size of tumor increase is only 1-2 mm in some places, and some nodes have either regressed or are persistent. Physically as active as ever with no major heath concerns. The progression is localized and has not spread to any other organ. Unable to understand what is going on. I am not sure if the doctor will start second line therapy. Any ideas what I need to expect from here on. Just wanted to get a feeling of my options. GBJ

Thanks Tom. However in my case the growth in couple of locations is greater than 5 mm and SUV is also high. But CEA marker was within normal range. Hard to understand. My oncologist is very proactive, and orders scans and blood tests quite often. Last CT scan in March was stable. CEA marker test in April was normal. But this report is concerning. Trying to stay positive.

Hi All, it been a while since I posted on this site. I guessed I could wade through the treatment and reach NED by the time I posted. Dx with Stage IV A adenocarcinoma Lung in Feb 2022, have completed 6 cycles of carboplatin, 22 of Alimta and 21 of Keytruda by July 23. Have been on maintenance therapy - carboplatin dropped - since July 2022. First 3 scans taken until April 2023 showed significant regression in nodes and lesions, almost 90% gone. However, recent PET scan showed increase in size and SUV by a few mm, same location. No new location found as per the oncologist. Since I have been on immunotherapy, the oncologist is thinking it is more likely a pseudo-progression caused by the immune cells generating a response rather than growth. He has asked for continued treatment with Alimta and Keytruda for the next 3 cycles, with a follow up scan. He said, since I do not have any other symptoms and all my blood markers are normal, it should be okay. It is a risk, but he seems confidant. However I am not sure. Do not know how to take this recent setback. Fingers crossed and fight continues. GBJ

So PET scan done yesterday. Further significant reduction in size and metabolic activity (some down almost 80-90%). Not NED yet but feeling good. No progression anywhere. Two persistent lesions (< 9mm) in the intercoastal space with SUV of 3.5. They also did a carcinoembryonic antigen (CEA) test. Sometimes they are used as an indirect tumor marker. Value was 0.85 ng/mL which is what they say is usually for healthy persons. So far so good. Doc has recommended another 6 infusions of Alimta and Keytruda. The fight continues.

That time of the treatment cycle when you are anxious about your results. Backstory: Dx with Stage IV A adenocarcinoma Lung in Feb 2022, have completed 6 cycles of carboplatin, 12 of Alimta and 11 of Keytruda by Oct 29. 1st scan showed significant regression in nodes and lesions. Have been on maintenance therapy - carboplatin dropped - since July 2022. Now 2nd scan scheduled next week and anxiety increases. All parameters are fine, except for Thyroid TSH which was slightly elevated - so the doctor have prescribed Thyroxine for 2 months - one daily. The thyroid increase is due to the side effects from Keytruda. Receive 3 Filgrastim injections after chemo/immuno sessions for 3 days - though I never needed it, doctor are cautious due to lingering COVID/infection in India. Been fairly active, working 2 jobs to decrease financial burden and mainly to keep my mind of bad thoughts I guess. Daily take a 4-flight test (walk 4 flight of stairs under a minute without holding a railing). I am able to do that in 30 seconds so it helps me think I am doing okay. I also try 6-8 flights to check for my breathlessness - do have some minor breathlessness when doing 8 flights otherwise okay. Anyways, I try to walk 2-3 miles each day. Have a cough which comes and goes usually in the morning. Doctors here in India do not prescribe any medication so home remedies - steam inhalation, honey hot water etc is what I take. Sorry about the ramblings but thought I could share all the activities I have done. Now once I get the scan results, doctors will prescribe next steps. The oncologist here says, irrespective of the results, maintenance therapy will continue for one more cycle - 6 Alimta and 6 keytruda for every 3 weeks and then another scan. How long is one prescribed these cycles. I have no idea. Also does progression show up in your daily routines. I would like to believe it should but never know. Fingers crossed and hope for the best.

CH29, Sorry to hear about your husband's condition. Praying that he get well soon. For me, a Stage IV NSCLC, I have had 6x carboplatin, 8x Keytruda and 8x Alimta till now. Scans were good the last time (2 months ago), with significant decrease in lesions and nodes, same as your husband's. The doctor had mentioned side effect of Keytruda at the time of its first infusion, one of them being kidney problems. Hence they ask me to have a kidney function test and a liver function test every 3 weeks. They also have me tested for cortisol serum and ACTH in the blood. Maybe that might be something the doctors can check as well. As Tom says, stay the course. He will be better soon.

Had my PET scan yesterday after 6 infusions. Almost complete resolution of the nodes and significant reduction in the lesions. Almost 70% reduction in lesion size and significant reduction in metabolic activity (SUV for some reduced to 2.9). Doc said minimal disease now, but wants to continue treatment. Now on maintenance therapy, have dropped carboplatin and only onAlimta and Keytruda for another 5-6 infusions and then a PET scan. Staying the course.

@CH29This is great news. Enjoy the results. I am in the same space as your husband. I guess we are having the same journey. Had my PET scan yesterday after 6 infusions. Almost complete resolution of the nodes and significant reduction in the lesions. Doc said minimal disease now. Now on maintenance therapy, have dropped carboplatin and only on Alimta and Keytruda for another 5-6 infusions and then a PET scan. Enjoying my first good news in days. A toast to you too.

Thanks J for the advice. Thoughts always going around the PET scan results. Anxious as usual. Here in India, docs do not operate or perform lobectomy for Stage 4. And radiation was not mentioned by the doctor. Was wondering if people survive long without surgery. Sorry for bombarding questions on this.

Thanks Tom for the advice and your prayers. I am also hoping for clear scans. You are truly an inspiration. I have handled the first cycle of chemo and immuno well, no major side effects. I have been active with my regular walking and light exercising. So always wondering what is happening on the inside. My doctor never mentioned second line of treatment, so was wondering about that.

JJ, Good to hear you are doing well for 2 years. You are a positive story. As Tom says: Stay the course.

It has been 4 months since diagnosis - Stage 4 NSCLC with mets to the abdomen (a few nodes there). I have completed 6 rounds of chemo (Pemetrexed and carboplatin) and 5 rounds of immunotherapy (Keytruda) - 15% PDL-1. Now my first scan after the infusions is next week. Fingers crossed and all. Anyways, wondering what the next steps would be. My oncologist mentioned that I had three options depending on the PET-scan results: 1) Be on maintenance therapy (dropping one chemo drug carboplatin) and continue immunotherapy+1 chemo drug 2) Stop therapy altogether and monitor (assuming if scans are good) 3) Continue with immunotherapy alone till I can bear the costs of it (In India, immunotherapy is not covered under insurance) Wondering if anyone was told the same. Also, another question: do they stop therapy if the tumor grows or do they start second line of treatment. I am confused on that. Please advice