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Lisa:Thank you so much for your response. Since I shared my story I waited desperately for a post like yours. You answered so many questions even after I spend days reading on this site and elsewhere. I am still waiting for the results of the final tests hoping for a mutation with an existing drug but seeing your results gives me hope and most importantly the will to fight. I will read your post each time doubt enters my mind . Thank you again for taking the time to share your experience. It meant so much. I wish you the very best. Gary.

Gary, Feel free to ask any questions, we are all happy to share our experiences with you. Much of what we have learned is because of what we've been through or because of others who shared their experiences with us. I am very thankful to people I've met in Support Groups and would have been lost without them. LUNGevety is an amazing group and I'm very thankful to be one of many members. I'm also now very happy to be a Lung Cancer Advocate and love being able to help others. PS: My hip surgery was "hip replacement" surgery and I'm now in the need of having my other hip done, but it's been put on hold because of Covid. Hoping this time it all goes very well and I do not develop any problems. In hindsight we now know that I never did really have "post op pneumonia", it was actually lung cancer that was missed on those chest xrays. Just seems so surreal to think that everything up until the surgery was all fine, then just a month later I find out that I have Stage IV NSCLC that had already spread to my brain and caused the PE! Clearly, this is a sneaky cancer and far too many of us do not find it until it's advanced. Thankfully, we've come a long way in the past few years and now have more treatment options than ever before.

Sashjo, Just wanted to be ask if you have had a biopsy done for your rash. I had what I "thought" was an Immune mediated rash on my upper lip area (I had been on Opdivo). It wasn't overly bothersome and never itched, so I didn't think much about it and I could easily cover it with a bit of makeup. I had it for a few months and one day while at my PCP's office asked him to take a peek (I was Stable and no longer on Opdivo by then), he thought at first it might be eczema and gave me an RX to try, but also said, if that did not resolve it, he wanted me to go to a Derm for a biopsy. Long story short, the RX did nothing, so I went to see a Derm and then had the biopsy done and it turned out to be a Superficial Basal Cell Skin Cancer. I've since had MOHS and Reconstruction done and it's thankfully now gone. I had BCC once before, but it was Nodular and looked totally different, and I never ever thought this "rash" was skin caner, but it was. Hopefully, you have already had a biopsy, and this is not the same for you, but I thought I'd share my experience, just in case. I honestly thought my rash was related to Immunotherpay, but I was wrong. Best wishes and hope you can find an effective treatment. Lisa

Gary, Sorry to hear you are now facing your own cancer journey. You've come to a great group and you'll find lots of support here. I agree with our doctor's decision to wait for all the biomarker results before you begin any treatment and also agree that PDL1 does not always mean that Immunotherapy will not be beneficial for you. I have Stage IV NSCLC (Adeno) and was diagnosed back in March of 2015, (before they had "full genomic testing" available). I was tested for the most common mutations (EGFR, ALK, ROS, KRAS etc) and I am KRAS positive, but currently there is not a targeted treatment for that particular mutation. I also NEVER had PDL1 testing done, because it was not a standard test and back then the Immunotherapy drugs were still only available in Clinical Trials. I started with the standard treatment, which at that time, was two chemo meds (Carboplatin and Alimta), they still use those two drugs, but now also combine it with Keytruda (Immunotherpay) and this "triplet" is now the standard for most. I did quite well initially on chemo, but did have progression after I was put on Alimta maintenance. thankfully, by that time the FDA had approved two Immunotherpay drugs and I was able to go on "Nivolumab" (Opdivo), which had been approved as a second line treatment "regardless" of PDL1 Status. I was the very first patient at my local hospital to go on Immunotherapy and I am the longest survivor and continue to be doing well. Opdivo, was my life saver and within a few months I had positive results and was Stable by six months and have been ever since. I've now been Stable for over 4 years and have also been "off" all treatment since August 2016. I did have side effects, which ultimatley led them to stop the treatment, but by that time it had worked well. When I first stopped, we all assumed I would probably have to go on another treatment, if I had progression, but to date, that has not happened and I've now been "off" all treament for almost four years. I know quite a few folks who were also diagnosed around the same time I was and also did the same basic treatment, we all started with Chemo and moved to "Opdivo" after progression and most of us are now Stable or NED (No Evidence of Disease) and have been off treatment for 3-4 years. The majority of us had some type of side effect that caused us to be taken off of Opdivo, but even so, we've all remained stable for long periods. My Oncologist tells me that the most recent data seems to indicate that people who had my type of response are now expected to see continued long term stability (based on data from the original clinical trials), he feels I should continue to do well for many years and he is thrilled with my results. I see him every three months and have scans every six months, my next scans are coming up in August. The good news is that many patients with even Stage IV Lung Cancer are living long lives and more and more lung cancer is being treated as a "chronic" condition. I wish you the very best and hope you too will do well with your treatment. Lisa

I saw an article yesterday about biomarker testing and this caught my eye: Naiyer Rizvi, MD: "OK. Jacob, any other biomarkers you feel are important up front? We've got the DNA-based test. We've got the RNA-based test. We have PD-L1 testing. Anything else that you use to inform treatment decisions?" Jacob Sands, MD: "I think those are, obviously, the most important ones. And one thing I'll add to that is, even in people who have squamous cell carcinoma who are never smokers, or light with a distant history of smoking, we do test those as well. Then we had a recent publication in Lung Cancer looking at our squamous cell population and going back and looking at NGS testing from those. And interestingly, there are some where it looks like it's probably more of a metastatic skin cancer or something else like that, particularly in these non-smokers, and so just to consider that there can be other possible sources of that, particularly in that population. And we saw a UV signature on the NGS panel within that, and then looking back, they actually have a history of a squamous skin cancer that had been resected. So sometimes the picture isn't quite as clear, and it takes a little bit of digging as well. But we as well do NGS panel and a PD-L1 expression testing." https://www.onclive.com/view/advanced-lung-cancer-a-year-in-review?utm_content=6-22-20_OncLiveSS_Peer Exchange Lung eNL_Infimzi AstraZeneca CID_ed911ebda20bce9db65a2f33a6eb3ab6&utm_term=Workup and Management of Nondriver Metastatic Lung Cancer&utm_medium=email&utm_source=CM ONCLIVE&utm_campaign=6-22-20_OncLiveSS_Peer Exchange Lung eNL_Infimzi AstraZeneca My husband has had a number of instances of squamous cell skin cancer and has had Mohs surgery several times to treat it. The quotes above make me wonder whether it truly is lung cancer or cancer than originated in the skin and spread - especially since he falls in the 'never smoker' category. Not sure whether it makes a difference either way in his treatment, but it's on my list of questions for the next oncology visit.

Hi Kwally. I’m truly sorry that you are going through this. I’ve been down the road you are on. I lost my Mom on May 5th after an 18 month fight with a combo of NSCLC & SCLC. I was there for everything beginning to end. What I can tell you is just enjoy being with your Dad every minute you can even if it’s just sitting with him talking. I learned more about my Mom in the last 6 months of her life than I knew in the previous 60 years of my life. It’s the simple things that ultimately mean the most in my opinion. It’s hard to discuss the “business end” of things but it’s a relief to know exactly what’s what and their wishes. My Mom had her affairs in order long before her diagnosis but there were still things that needed to be discussed and I was relieved when we had that discussion because there was no question in my mind about what to do. If you and your Dad choose hospice when the time comes, they are a huge support system. Ask questions, educate yourself on what to expect. There is no absolute timeline and everyone is different but if you know what the subtle changes you see mean, you may be more prepared for the next step and the ones after that. The last week of my Moms life was the most terrifying experience of my life and there were many times I asked myself how in the world did I ever think I could do it. But I did it, you find strength you never knew you had. And as terrifying as it was and as heartbroken as I am, I would do it all over again for her. I wish for strength and peace for you in the journey you have in front of you.

I totally understand where you’re at right now. I think most of us here do as well. Feeling consumed is completely normal. I know it’s hard and right now, the intensity of the emotion isn’t something you can will to stop. There’s a gradual process with ups and downs. Eventually the ups outnumber the downs. In the beginning this is an hour by hour process. It took me six months and three CT scans before there was a sense of normalcy. Try not to bottle up, if you want to cry, sob, if you want to yell, scream, angry-hit a pillow. Keep talking to us, we will be here to help along the way. You can do it. Believe in yourself. Michelle

Hi All, The diagnosis is stage IV non-small cell adenocarinoma. I’m waiting for the bio marker results, and I get the pet scan and mri later this week. The dr thinks I’ll be a good candidate for targeted therapy so crossing my fingers and toes for clean scans (other than what I already know), clean mri, and “good” mutation. Feeling all kinds of things! Working hard to remain positive and keep a healthy attitude. ❤️

Thanks again Steff: So much knowledge and wisdom I feel spoiled. I am constantly reading trying to get educated but you ladies put me on the right track in no time. I wish and hope I can help others the way you helped me. I will however read about the Keynote-189 trial in order to catch up. Thank you once more. Gary

Gary- My mom had a high PD-L1 prior to beginning the triplet. Keep in mind, this was nearly 3 years ago and lots has changed since then. In fact, my mom was diagnosed in June and the triplet had just been publicly released as more effective than Keytruda alone just 2 months earlier. Although my mom has a high PD-L1 percentage, immunotherapy can be very effective in folks without PD-L1 too. The Keynote-189 trial showed increased survival rates no matter what their PD-L1 number, as long as it was combined with alimta and either cisplatin or carbo for first-line treatment in metastatic non-squamous NSCLC. The triplet has become a standard of care for many. However, as Michelle discussed, ruling out any other biomarkers/mutations is really important.

GaryG, My mom had 6 sessions with the triplet recommended to you and then went on to about 1.5 years of Keytruda only for her adenocarcinoma recurrence, initially stage 3a. She did have a high level of PD-L1 cells. She had a tumor on the back of her trachea which was closing off airflow in which a tracheal stent had to be placed. Within 6-8 weeks, the tumor had shrunken enough to have the stent removed. It's been nearly 2 years since her final Keytruda treatment and (knock on wood) her lung cancer has not returned. You can read more about her journey here and here. I hope my mom's experience can answer some questions for you and give you some hope. Take Care, Steff

Hi Lisa: What helped me with your post is that you told me the whole story from start to finish. I kept reading other posters on this site and all I see is "this worked" or this didn't work". Without knowing the full story it was impossible to formulate an opinion. Maybe I am not familiar with all the posters since I just started. I am sorry to hear about your other health problems and I am glad they are behind you. Before being diagnosed with cancer I was as healthy as can be with the only setback are 2 knee replacements from playing sports, still they never slowed me down. I traveled around the world, played Tennis and walked almost daily and enjoyed gardening. My big mistake was smoking 35 years ago for 10 years. Maybe it caught up with me. My friends and family are all surprised to see me this sick. I will take cancer as a challenge and work hard to beat it. You gave me all the reasons to do so. Thank you again and best of luck.You are a real fighter. Gary

Gary, I am very happy to hear that my experience was helpful to you and I truly wish you the very best too! Please keep in touch and let us now when you have your test results back. I know the waiting can be the hardest part, so hoping it won't be too much longer. One other thing I can also share is that I have always tried to remain very determined and have said from day one that I am going to beat this, even before we had Immunotherapy. For me, this all started with a very sudden onset of neuro changes that I first thought was "vertigo". I never had any symptoms or suspicion of lung cancer - no cough, no SOB, no chest pain - nothing. I actually had hip surgery exactly 4 weeks before my diagnosis and my Pre-Op Labs and Chest Xray were all fine. I developed what they said was "post op" Pneumonia the day after surgery. At first they thought it was the Flu, but I tested negative, so they they ran to more chest xrays and diagnosed me with Pneumonia, even though I had no symtoms and the fever was gone the next day? I went home a couple days later and began my recovery. Then the "vertigo" like feeling started, I went to see my PCP and he did a Neuro Exam and I knew I had failed and he sent me directly to the hospital for an urgent Head CT Scan and they found a brain tumor, within hours I lost use of my right arm/hand and my speech. I was sent by ambulance to a larger sister hospital and admitted to a Neuro Unit and all the tests began. The next day one of the tests was a Chest CT Scan and that's when they saw the lung tumor and also found that I had a Pulmonary Embolism (again with no symptoms or warning). Needless to say, I was totally overwhelmed -- I had a brain tumor, lung tumor and a Pulmonary Embolism, just four weeks out from hip surgery, still in PT and using a cane to get around. The outlook was pretty grim - but I told my husband and my two sons that I was going to fight hard. I am so thankful that I had a Oncologist who was into research and who had been following the immunotherapy trials very closely. I tell her all the time, she saved my life by encouraging me to try Opdivo when I had progression later that year. At that time, there was very little known about Immunotherpay and knowing I'd be the first patient at my hospital to try it was pretty frightening. I still remember how big of an "event" it was. Bristol Myers sent in team to train the staff and they were there for my first infusion. It was a life changer for me, no doubt about it. It has given me 5 plus years and two little grand-daughters who I am thrilled to have in my life. Hope this is also helps provide you with some additional encouragement... Lisa

Hi Josh, I've not had the chemo mouth sores, but several on the forums (and elsewhere) who have had have uses something called "Miracle Mouthwash". It's a prescription that has to be compounded by the pharmacist. I don't think it's intended to be curative, but rather to relieve pain so eating will be easier. I agree with Tom about seeing a dentiist. Best, Bridget O (aka Lee)

I've been on Keytruda off and on for two years now. I've been so fortunate that it has kept my cancer pretty consistently dormant. One of Keytruda's known side effects is a skin condition called Lichus Planus. I have a terribly resistant ulcer on my lower lip. My oncologist and dermatologist have me gargling two times a day with Tacrolimus, which is an immunosuppressive drug. I also use a strong steroidal cream called Fluocinonide. Both are powerful drugs but my lip seems very resistant to them and isn't healing. My doctors seem stumped butd I trust them implicitly. Sometimes it's a hit or miss things treating immune system reactions. Has anyone else experienced this problem and/or had success with other types of treatments. Any suggestions or advice would be greatly appreciated. Thanks so very much. Be well everyone. Peace and gratitude - Josh

Marie. Thanks so much for the info. I’m going to talk to my oncologist at some point about this. Right now if Kadcyla is working my P.A. says hopefully you get a couple of years of stability. Ride the Wave! But always good to know there is other options

CLM, Just thinking of you and hope you will soon have the answers you've been waiting for ! Please let us know how you are doing and take care.

CLM, Thinking of you! Hope you get some encouraging treatment plans from your doc! Best, Ro

Co-Survivors! We now have a meetup just for you! LUNGevity Foundation Caregiver Meetups will be twice a month on Thursdays at 7pm E. Join us if you can on Thursday July 16th. The link to join on that date is https://zoom.us/j/96667587148?pwd=YWM5KzdOM3JnNFQ1QVhHMmZUNWxIUT09

Thanks for all the advice Tom! I'm going to check with my dentist and see what he's got to say. Warmest Regards - Josh

Josh, If you are in treatment, and are eating less, you have an "eating inorder." Try ice cream or milk shakes or something with lots of calories. During chemo, everything tasted so bad that I stopped eating. My wife's research, a dietitian and a RN, discovered mint flavored items were appetite enhancers for folks receiving chemotherapy. She purchased commercial chocolate mint ice cream to test the theory, and when proved, she started churning up her own adding crushed Oreo mint cookies into the blend to add even more calories. Don't drop weight during chemo! Mouth sores are hard to deal with. I would think a dermatologist would be helpful. I consulted with my dentist and he prescribed a regime of prescription mouth rinses that dealt with my sores. I've heard the real "old time survivors" tell me a mouth rinse with a weak concentration of baking soda worked. I didn't try that, but relied on my dentist. OBTW, if in chemotherapy, it is a good idea to have regular dental checkups. Stay the course. Tom