Drew Posted September 13, 2022 Share Posted September 13, 2022 Hi all my 81 year old relatively healthy mom was recently diagnosed last week with stage 4 nsclc with malignant effusion and bilateral lymph node involvement. Pet scan revealed one small lesion on her spine but no other involvement in any nearby organs in addition to a clean brain mri. We have an appointment next week to meet with an oncologist and to devise a treatment plan. In the meantime we are waiting on the molecular lab results to see (and are praying and hoping) whether she tests positive for any markers that would qualify her for targeted therapy. She has never smoke or drank a day in her life. what concerns me however is my mom has been suffering from rheumatoid arthritis for the past five years which she has been taking biologicals for (enbrel) in addition to her osteoporosis. I’ve been doing a ton of reading obviously since the diagnosis and am placing a lot of hope on the possibility of immunotherapy if she doesn’t qualify for any targeted therapy. However I’m concerned they may tell her she can’t have any immunotherapy because of her RHeumatoid arthritis. Does anyone have any background with this? Aside from the RA my mom is healthy, mobile and has no signs or symptoms that she’s even sick. Her only complain was a lack of appetite and weight loss the past few months which triggered us down this path. Any advise or direction would be appreciated. I just don’t want my mom to suffer through chemo and radiation. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 13, 2022 Share Posted September 13, 2022 Drew, Welcome here. A search of RA, immunotherapy and lung cancer returned a lot of conflicting information. The best source of information on this and other treatment topics will be your moms med onc (medical oncologist) As for biologicals and cancer therapy, ensure your mom's med onc knows the details on all medications your mom is taking. Advice? I wouldn't give up on chemo radiation yet. Conventional chemo formulations have really improved in effectiveness and with tolerable side effects. Your mom's rad onc (radiation oncologist) may be able to offer fractional general radiation that hits all metastatic areas (you don't report where your mom's primary tumor is). Normally, this fractional radiation is administered M-F for 30 treatment days and reduced strength chemo is given as adjuvant therapy weekly. This was my first line of treatment in February 2004. It is still a very effective first line treatment depending on the proximity of metastatic areas. The malignant effusion may be a problem but I'd ask for a consultation with a radiation oncologist. Let us know the results of molecular testing. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
Drew Posted September 13, 2022 Author Share Posted September 13, 2022 Tom, thanks for the reply her primary tumor is an adenocarcinoma located in the lower left Lobe of the left lung. I know this is a loaded question, but what is the general outlook for these days in the year 2022 when conventional chemo and radiation are the first line of therapy (assuming we can’t pursue immunotherapy and targeted therapy). The statics online are very discouraging and morbid to say the least outside of areas that involve targeted therapy and immune therapy. Has anything changed in respect to conventional chemo and radiation for a stage 4 diagnosis? Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted September 13, 2022 Share Posted September 13, 2022 Hi my dad was diagnosed in July with the same presentation. Malignant pleural effusion with Mets to spine. The malignant pleural effusion was difficult to control. He had 4 thoracentesis. He eventually had a pleurodesis and has been doing well since. He doesn’t have targetable mutations so he is on chemo and immunotherapy. Everyone treatment course is different. My advice for caregivers would be try to be on top of things as much as possible and seek second opinions if you can. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Drew Posted September 13, 2022 Author Share Posted September 13, 2022 1 hour ago, Holdonhope said: Hi my dad was diagnosed in July with the same presentation. Malignant pleural effusion with Mets to spine. The malignant pleural effusion was difficult to control. He had 4 thoracentesis. He eventually had a pleurodesis and has been doing well since. He doesn’t have targetable mutations so he is on chemo and immunotherapy. Everyone treatment course is different. My advice for caregivers would be try to be on top of things as much as possible and seek second opinions if you can. How is he responding to therapy? Hoping for a positive outcome for you guys Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 14, 2022 Share Posted September 14, 2022 Drew, I once had a survival projection of less than 6 months. Predictive statistics for cancer are so inaccurate. Why? This provides some personal insight. The last paragraph of my linked bog has a citation for an essay by Stephen Jay Gould, a man who was an eminent statistician and scientist and also a lung tenured cancer survivor. Listen to that essay. So much has changed for the better, even in conventional therapy. I don't know that anyone can answer what the general outlook for your mother's treatment might be. I had a doublet of conventional chemotherapy (taxol and carboplatin). Doublet therapy resulted from a 1995 trial that showed enhanced survival over a single drug treatment. Yet, in 9 years from the trial to my first treatment, the survival statistics failed to capture the impact of doublet therapy on survival. Predicting life has always been an "educated guess." The most important thing to focus on is that conventional therapy often extends life so I suggest you focus on what you and your family are going to do with your mother during that extension. There is always hope, with high confidence. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted September 15, 2022 Share Posted September 15, 2022 Drew, I think he is responding the therapy. Definitely moving and breathing better than before he started. My dad does not have a targetable mutation and his PDl-1 markers were negative on biopsy. So we take it day by day. I will keep you and your mom in my prayers. Quote Link to comment Share on other sites More sharing options...
Drew Posted September 16, 2022 Author Share Posted September 16, 2022 As an update, some Of my mom’s molecular testing came back and was 40% positive for PDL1 which the pulmonologist stated was very good. We haven’t seen the oncologist yet because she doesn’t want to start her on any treatment until the results of the Egfr are back which we are still waiting on. Is 40% PDL1 good in regards to treatment options? Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted September 16, 2022 Share Posted September 16, 2022 Yes, PDL-1 at 40% is very good. But her pulmonologist is right that it's not a good idea to start immunotherapy before the other biomarker results are in. I hope they are testing for all other actionable mutations besides EGFR. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Drew Posted September 19, 2022 Author Share Posted September 19, 2022 While we continue to wait for the other molecular testing results to arrive, I was wondering if anyone can shed some light regarding the 40% expression of the PDL1. From everything I’ve read this far, anything below 50% is considered low and all studies generally point to greater positive outcomes from immunotherapy in patients who are considered to have high expression of PDL1 (50% or higher). Does anyone have any context they can share with me regarding how my mom may respond with 40% expression? Does the immunotherapy still have a high success rate in this patient population who are under 50%? Right now I am praying that she turns out to be EGFr positive solely because a lot of the tremendous success stories I’ve read seem to be associated with patients who have EGFR mutations. I know other mutations with targeted therapies do exist, I just don’t seem to come across them much in my reading. I’m also hoping we can avoid chemo for my mom as well and from my understanding in patients with lower level PDL1 expression the first line treatment is typically an immunotherapy like Keytruda alongside chemo. At At almost 82 years old I’m not sure how my mom would hold up with chemo. Hence again why we are hoping the EGFR mutation is present in her tumor. Any background or experience would be appreciated Quote Link to comment Share on other sites More sharing options...
Bbye Posted February 12, 2023 Share Posted February 12, 2023 Hi- how is your mom doing ? Was she able to do immunotherapy with a pre existing autoimmune disease ? My mom has a high PD1 % but oncologist is saying not a candidate for immunotherapy due to Scleroderma. I have been doing some research that I would like to present to her oncologist. I hope you both are doing well. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Drew Posted January 23 Author Share Posted January 23 Hi Everyone Figured I would give an update regarding my mother who was diagnosed in August 2022 with stage 5 NSCLC (Adenocarcinoma). Molecular testing revealed that mom has 2 uncommon mutations on exon 18 and exon 20. The specific mutations my mom has are S768l and G719S. She started Tagrisso 80mg at the time of diagnosis and has been stable since symptomatically as well as on her scans. All her bone mets disappeared on her scans and her primary tumor also shrunk in size but did not totally disappear. Everything was going smooth until this past September when mom started to experience ongoing painless diarrhea for 2 weeks. She was taken to the hospital where a bunch of tests were run to rule out everything GI related (Except for a possible virus) and after everything coming back negative it was assumed the Diarrhea was a side effect of the Tagrisso. She was instructed to stop the Tagrisso for 2 weeks and to lower the dose from 80mg to 40mg which she remained on until now. Unfortunately mom suffered another major setback this week. She started complaining of more GI symptoms (stomach pain similar to what she experienced when first diagnosed in the summer of 2022) and more fatigue (More than usual) the past few weeks. Her CEA markers were also trending upwards in the last 3 months and she is due for her routine CT scans which her Onc said would give us a better idea of what's going on. Her symptoms became too bothersome to wait for the CT scan to get scheduled (insurance hold ups) and we took her to see her pulmonologist yesterday who ran an ultrasound and noted a large accumulation of fluid again (effusion). She is scheduled to have the fluid drained tomorrow and they will send it out for lab markers as well. Of course we were informed that based on the presence of the fluid it was highly likely that the cancer is progressing. How much progress is still unknown because we still have not gotten her in for the CT scan. He told me the question now becomes, did the disease progress because of the lower dose or because the Tagrisso has stopped working entirely (I.e. resistance). He did not know the answer to this question but he will be reaching out to our Oncologist to inform her of today's findings. Do you know what happens next? If it stopped working, what options do we have? Mom has substitution mutations on exon 18 and exon 20. Is chemo going to be inevitable? Mom is very frail, only weighing 90lbs and i am very fearful she would not tolerate the Chemo. I was wondering, 1) is it common to see the tumor/disease progress after halving the dose of Tagrisso? 2) is the likelihood of the tumor/disease getting back under control high/good once you increase the dosage of Tagrisso again which is what I’m assuming will be suggested Basically, is this a commonly seen scenario where the dose is lowered and the disease decides to progress but can be brought under control again later by increasing the dosage? Just worried about what the future may be holding and hoping there may be an easy fix to this. 15 months on Tagrisso (with the last 4 months only at half dosage) hopefully doesn’t mean it stopped working. Thanks for any insight or advice Quote Link to comment Share on other sites More sharing options...
tgif i guess Posted January 24 Share Posted January 24 i have no experience with tagrisso so i can't speak to that - but i sense some hesitation about chemo i take keytruda on the immuno side - on the chemo side i was taking carboplatin and alimta (now off the carboplatin) i have had remarkably few side effects and none of them so bad i could not tolerate them - no nausea or hair loss (the two everyone thinks about first) some chemo drugs are worse than others and we are all different - all the disclaimers my last few pet scans show no disease - was it the chemo? i don't know - but i tolerate the chemo well try not to assume the worst if your mom's treatment takes the chemo route Quote Link to comment Share on other sites More sharing options...
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