JuneK

Such wise words Karen - I agree with you completely! I sometimes find myself slightly annoyed when a well-meaning friend tells me I have to remain positive. My first thought is always, "well, that's easy for YOU to say". It's just one more thing to feel bad about - am I a failure because I struggle to remain as positive as I should while fighting this disease? GBJ - I experienced a recurrence this summer so I know how devastating it can be. Especially when things had been going so well for a while. I hope that's not what is happening with you, but if it is, I will pray they find the best treatment options for you going forward.

In researching clinical trials, I came upon some interesting info regarding BMF-219. It has shown great results for leukemia, and now they are looking at trials for lung cancers with any KRAS mutation. This is hopeful for me as I have one of the lesser known types - KRAS A146V. Here are a couple of links I hope some will find interesting: https://www.targetedonc.com/view/treatment-with-novel-kras-inhibitor-commences-in-phase-1-1b-study-covalent-10 https://aacrjournals.org/cancerres/article/82/12_Supplement/2665/699885/Abstract-2665-Irreversible-menin-inhibitor-BMF-219 Best to all, June

Hi everyone. Sorry to take so long to check in. My upper right lobectomy was performed by Da Vinci RATS (Robot-Assisted Surgery) on December 8th, which was ten days ago. The surgery took 4 and ½ hours, which was longer than expected, but my surgeon said overall it went very well. He said the tumor had basically turned to a mushy mess (presumably dying from chemo & immunotherapy), so he had to be very meticulous to get every bit of everything. There was a lot of sticky tissue that had to be teased apart, etc. which made for what he called a "tough" surgery. He had been a little worried by how close the tumor was to the other lobe, but upon inspection he verified it was confined to the upper, so he did not have to cut into the middle lobe at all. I did very well in the hospital. My surgeon used Exparel (bupivacaine) which is injected into the incisions and is designed to release numbing medication over time. This worked very well for me. Even though I had pain, it was nowhere near as bad as I expected for the first 2 or 3 days. My whole mid-section was quite numb for a long time. It did hurt to breathe deep, and to cough, but the pain was manageable. I truly hated the spirometer those first few days though! It was very difficult to pull in much air. But I was able to walk around pretty well – in fact they had me up walking that very first evening. I know that is common, but it still amazes me! The day after surgery the nurse noted there was very little drainage coming from my chest tube, so they were able to remove it around noon that day. I didn’t feel a thing when it came out – again probably due to the numbing agent that was used. Since the chest tube came out a little early, I was able to go home on the morning of day 3. Unfortunately, day 3 was when the numbing med began to wear off! So the pain was actually much worse after I got home than when I was in the hospital. I had to take Tramadol to be comfortable enough to get any sleep. The next few days I took mostly Extra Strength Tylenol, a muscle relaxer and/or Ibuprofen during the day, but had to use Tramadol at night and other times when the pain got worse. I've used the spirometer religiously (must admit I am so tired of that thing!). However, I woke up Wednesday morning feeling like I couldn’t get my breath. I was having more trouble breathing then than at any time after the surgery. I also had developed a bad sounding cough (there was a weird little rattle to it). Just walking across the room made me very short of breath, to the point I became anxious about it, which of course made things worse. I called the drs office and the nurse recommended I get a chest x-ray, just to make sure all was OK. So I went in and got the chest x-ray Wednesday afternoon. They called Thursday morning and said everything looked OK. My breathing slowly got better Thursday and by Friday I was breathing easier and past the “anxiety” stage. I still don’t know how much of all this was because I worked myself into a state of anxiety or if there really was something going on, but I just felt especially bad those two days. When the cough got better, the shortness of breath got better, and by Friday I was feeling much better overall. So here is it Sunday evening – 10 days since my surgery. I have to say I have more pain and swelling than I thought I would have at this point. I had a lot of abdominal swelling after surgery, and it has not gone down a whole lot. I feel like there is an incredibly tight band across my upper abdomen. Overall, I am doing OK, but I think I wasn’t prepared for the healing process to be this slow. I still need to take at least one Tramadol a day to get through it well and to be able to do my light walking and other exercises they want me to do. I think part of my issue was expectations - I had read many comments saying this surgery was not really all that bad, so then it turned out to be not quite as “easy” as I expected. I just did not expect to have this much pain & discomfort after a whole week. I realize everyone’s case is different though. The doctor did say it was a difficult surgery in that it took so long to clean everything out. I also read that the healing process can be slower if you are over 60, which I am. So, in summary, I would say that the first few days after surgery were easier than I expected, but the following week at home was a little more difficult than I expected. I’ve had to learn to be more patient with the whole process. The nurses I’ve talked to say a slow recovery is very common, and of course not everyone heals at the same pace. My next appointment with the surgeon is on December 27th. Hopefully by then I will have improved and he can put my mind at ease. I will say that when I take the Tramadol, I am pretty comfortable. I had just thought that by now I would be getting by on Tylenol & Advil! I could have sworn I read that somewhere, lol. Most of all, I want to say how thankful I am that I was even able to have this surgery. And I am thankful to still be here for one more Christmas! Best to all, June PS - I love my surgeon, he is talented, caring and kind. If anyone in the Atlanta area needs a recommendation, I would not hesitate to name him. He apparently has a great reputation. Just contact me.

Hi Rosie, I just wanted to check in and see if you have been able to continue with the Opdivo & Yervoy treatments? I hope and pray treatments are going well and will bring you some positive results. I have my 6th Opdivo treatment this Thursday. I don't dread it as much now that we have dropped the chemo, but there is always some anxiety about the possible pain reaction and the worries as to how long the treatments can be tolerated. Please give us an update when you have the time. Sending love & prayers - June

@Strongmamaof3My chemo drugs were Carboplatin and Alimta. Yes, I don't know how they come up with all these different combos. I remember my oncologist referring to a specific study when he initially told me my treatment plan. I had a mutation for KRAS, but it was NOT the one they now have a targeted therapy for. There was another mutation I had never heard of, and I honestly can't remember the name right now. All I remember was that neither one was treatable with targeted drugs.

Hi @Strongmamaof3 and welcome. I am a non smoker also. It's surprising to me how many of us non smokers with lung cancer there are! I'm so sorry your first line of treatment did not work. That really sucks. I would try not to be too worried about the Opdivo. My oncologist told me that Keytruda and Opdivo are similar in the way they work. So I'm guessing if you did OK with Keytruda, then hopefully you won't have any problems with the Opdivo. But of course, I'm not a doctor, so I really don't know. I have my next Opdivo treatment this Thursday. At this point I am resigned to the initial back pain. I'm just hoping our method of stopping & waiting it out continues to work. It does make for a stressful infusion though, because I'm always worrying the pain might start back up at any moment. I will definitely keep you posted as to how it goes. Hopefully Rosie will let us know how hers goes also. As for scans, I had my first PET scan yesterday (since treatment began). It was after completing 4 cycles of chemo & Opdivo. I forgot to ask how long it would be before I could do another one. Luckily, my lung tumor and the spot on my hip were both reduced in size, so I'm feeling very fortunate about that. I hope and pray your next phase of treatment finds success! Please keep us posted. Wishing you all the best. June

Hi Rosie, I'm sorry you are still having the pain also. Your "feeling of things closing in and getting dark" sounds very scary to me! I hope you told them about that. They've been stopping my treatment as soon as I get the first twinge of pain, so I haven't experienced anything like that. For some reason, when they wait a few minutes and start it back up, the pain has (so far) not returned. I don't understand it and it makes for a very stressful infusion, as you well know. I have my Pet scan tomorrow. I am really nervous about it. I have this dreaded feeling that nothing has been working! I'm trying my best to put it out of my mind, with limited success. Wishing you the best on your next Opdivo treatment. I hope you can get through it pain-free! Great to know you only have one more. If the Opdivo is helping me, my oncologist wants me to take it for 2 years if I can tolerate it. (I am stage 4, so I guess that's why) All the best, June

Hi Rosie, We are definitely in the same boat with this for sure! I do hope & pray that you had no further problems and were able to finish your treatment. The pain came back for me today also. But I was able to complete the infusion so we have agreed that for now we can "manage" it. We knew the last two times the pain hit me right at the 10 to 11 minute mark. So we were ready! As soon as I got the first twinges they stopped it immediately. The pain did increase a bit after stoppage, but not nearly as bad as the last two times when I waited until the pain was stronger to get them to stop it. So they monitored my vital signs while we waited for the pain to subside. They had already given me the steroids and Benadryl before starting. Once the pain was completely gone, they restarted the drip (with emergency kit at the ready just in case something worse happened). But just like the last two times, the pain never returned so I was able to finish it. I don't understand why it works this way, but it has been very consistent. So we have all agreed to continue doing it this way, being very careful, as long as we can. If more problems develop down the road he will switch to one of the other immunotherapy drugs and just hope I can tolerate one of those better. So for now I am feeling a little bit better about it. I have a scan on October 17th to determine if any of this is even working! There will be some high anxiety that week! I'm praying we both get through this Opdivo challenge with minimal further problems! Best to you, June

Hi Rosie! Yes, it sounds like we had almost the exact same Opdivo experience on our second infusions! I had no problems at all with the first one. Then I had my third treatment on Sept 8th. Even though they gave me both Benadryl and steroids up front, I still had the severe back pain about 10 minutes in. It was very upsetting, because I'm thinking "Now, what do we do?". So they stopped it and had a big consultation. The oncologist decided to move on to the Alimta & Carboplatin and then try the Opdivo again afterward. For some reason this worked and I was able to finish the Opdivo afterward with no more pain. But I was told that after two bad reactions it is sometimes recommended to stop that drug & try something else, possibly Keytruda. My next infusion is this Thursday the 29th (same as yours!). A nurse called last week and told me the oncologist decided he wants to try the Opdivo once again, but this time change the order & do it after the chemo drugs. I don't really understand how that would help, but maybe it's to give more time for the Benadryl and steroids to take effect? I'm pretty sure if I have the reaction again, they will discontinue the Opdivo. So now I am now getting quite stressed over this next treatment. If it doesn't work and I have to change to Keytruda, I worry that I might have a similar reaction to that one, too (since I assume the drugs work in a similar manner?). Since I'm not eligible for any targeted therapy drugs, I feel like these are my only hope! This is why I was so disappointed that I did not have one of the "good" mutations. Also, I had not ever heard that the steroids could have a negative effect on the immunotherapy. That is a little concerning, but I guess if it helps me to take it maybe it is worth it. I will have to ask about that at some point. I certainly hope the pre-treatment Benadryl works perfectly for you. I think it usually does, as they seemed a bit surprised that it didn't work for me. So you will most likely do fine, and I sincerely wish you the best of luck! Please let us know afterward how it goes. And please cross your fingers for me also . Best to all, June

Hi Mike, I hope you are doing well. I don't know if you have had your second treatment yet, but if so I sure hope everything went better than the first. Such a scary situation you experienced! I had a small problem with my 2nd treatment yesterday and they had to give me an extra dose of steroids. Now, after reading your story, I'm wondering if the steroid crash you experienced is a possibility for me. So I want to thank you for posting about it. If it DOES happen at least I will have an idea of what is going on. That is what is so good about sharing our experiences. Thank you and take care. Please give us an update when you can. June

I had my 2nd chemo treatment yesterday. It didn't go quite as well as the first but thankfully everything turned out OK. About 10 minutes into the Opdivo I started having severe lower back pain. It went from nothing to very bad in about 20 seconds! They stopped the drip immediately, then gave me an injection of Benadryl and a big dose of more steroids of some kind, I forget the name. The pain stopped almost immediately. They called the oncologist to see if treatment should continue (he's usually there but just had a baby so had a fill-in today & she wanted to check with him). He wanted to try again ("challenge it" is how they put it) and I was glad of that. I didn't want to have to give up on this drug so soon! So they waited another 30 minutes and started the infusion again with a reduced drip rate. Everyone held their breath to see if the pain returned, but it did not and I did fine. Everything went smoothly after that. What a relief! They said from now on they would start with the Benadryl & use the slower drip rate. It still worries me a bit because the hope was to be on the immunotherapy (Opdivo) for a long time. I wonder if since I already had an issue are there more likely to be problems in the future? Has anyone else has had an experience with this? I've also noticed most people on here talk about Keytruda or Imfizi when given immunotherapy. Makes me wonder why they are using a different one for me. Future questions for the oncologist I guess. I do remember him talking about some recent study when we first went over my treatment plan. Best to all, June

HI Michelle, Thank you for the encouraging words. I certainly hope you are right! I have this fear that my treatments won't work for whatever reason. And I don't have any of the targeted mutations, so it worries me to not have that backup line of defense! But I am trying hard to stay positive. I am very happy for you that everything is going so well! That is certainly encouraging. It's so frustrating when I look back on all the times this thing should have been caught earlier. I'm sure it was for you as well. Over 18 months ago I was complaining to my doctor about loss of stamina on the hiking trails. I was referred to a cardiologist. We did a stress test, echo, etc. and they proclaimed my heart was fine. I had a clear chest x-ray, so no one considered to look any further. I keep wondering why no one ever suggested a simple CT scan? I had no idea that you couldn't always see cancer on a chest x-ray, but surely the doctors knew that. I know I shouldn't worry about what "could have been", but it does bother me a bit. I blame myself, too, for not pushing back more. I sort of convinced myself it was just an age thing. I should have listened to my body, it was trying to tell me! Hi Chuck, Thank you also! I actually grew up in Mississippi and still have tons of family there. I'm from up around the Starkville area. But I lived in Gulfport for a few years way back in the 80's as a college co-op student with MS Power. Anyway, I am very glad you are doing well also. There are so many encouraging stories here and it does help a lot to hear them. Take care all, June

Thank you, Justin and Tom, for your support and for the good advice.

Karen, I can see that you are much more into fitness than me - I just love to walk and be in nature. But I love reading about all you are able to do. Maybe there can still be a few adventures left in my future. I love Zion and Bryce - I hope you enjoy your hiking there. Bryce is high elevation though - tough on breathing! We spent a week in Moab this past April. It was wonderful and I will always treasure that trip. So many great hikes in that area. I struggled with breathing on some of them, but assumed it was because of my recent bout with pneumonia. If I had only known! But in a way I'm glad we were able to enjoy that trip without the knowledge of what was lurking in my future. A week ago Thursday, I had my first infusions. Opdivo/Alimta/Carboplatin. A strange calmness came over me that day. I have to say that from a mental standpoint, that is probably the best day I have had since this whole nightmare began. I think it was purely because we were finally DOING something, instead of all the waiting around and agonizing over different test results, etc. I actually felt better physically that day, too, I assume simply because some action was finally being taken. I think for the first time I became fully aware of just what a devastating effect the anxiety I've been experiencing was having on my body. The infusions went quite well that day with no ill effects. I felt good on Thursday and Friday. I messed up a bit on the weekend, by waiting a little too long to start taking the Zofran they prescribed. So I got a little behind on the nausea on Saturday and Sunday. I never did throw up, but could not eat so was worried a little about that. But by Monday morning I was feeling much better and by Tuesday all nausea was gone. I will definitely be more proactive with the Zofran next time. But overall I have had a very good week. I am able to eat pretty well and am not having any weird side effects. I do have to admit I feel an overall “strangeness”. It’s hard to describe, but just a little off with some weird head pressure now and then. And of course I get tired very easily. But feeling fortunate so far. For now I’m just trying to focus on my treatments and not think too much about the future. That is when the overwhelming sadness hits, so I am choosing to ignore it as much as I can for now. Of course the tears still manage to creep in more than I’d like, but doing the best I can. I know at some point I will have to face it all, but I’m just not ready. I'm starting to think I will eventually need some professional help, not sure I’m strong enough on my own…

Hi Karen, When I read your post about hiking 8 miles a day, it literally made me cry. That was our retirement dream, to travel to different national parks and hike. We've always loved doing that but never had the time to do a whole lot. I've felt so weak lately, I assumed that dream was over. It's so encouraging to read that someone was able to feel good enough again after all this to do something like that! I have been struggling greatly to achieve this great hope that I am supposed to have, but stories like this really do help. I did attend a lot of the virtual conference. I came away with mixed feelings. Yes, it was a lot of good info, and yes everyone had all these great messages of hope. But I still came away horrified when I really looked at some of these charts they were presenting that were supposed to be so "hopeful". All I could see was how grim the overall statistics seemed to be. Maybe it's too early for me, but I am still having a very difficult time with the "acceptance" part. I'm trying so hard, I really am. But still fighting the despair more often than I want to admit. I appreciate you offering to have hope for me, until I am ready to embrace it fully myself! As to treatment, I am finally having my port put in on Monday, and will begin my chemo/immunotherapy infusions on Thursday. Unfortunately I did not have any of the currently targeted mutations, so that was a big disappointment. The good news is my PD-L1 was 60%, so they say I am a good candidate for immunotherapy. I will have Opdivo, Alimta and Carboplatin for 4 cycles, but they cautioned this could change as we go along. I am having an EBUS done on Tuesday to check lymph nodes in the middle of my chest. Apparently this will have an impact on whether I'm a candidate for a lobectomy after my treatments. So there's something else to stress about results over. I also have a lesion on my hip that they will do radiation on later. So, I am very happy to start treatment next week, but a bit nervous about it. My biggest fear is that the cancer won't respond well to it for whatever reason. More than ready to get this thing started though! All this waiting around has been excruciating. Thank you all again for your support and encouragement! I appreciate each and every post. I hope someday in the future I can be the one offering support to someone else, rather than all this whining about my fears, ha ha! Best to all, June

Wow, thank you all so much for these messages of hope. I can't tell you how much it means to me to read these! Tom & Judy, thank you for the info regarding the conference. I feel so ignorant, I don't even really know what questions to ask. I will definitely register & do my best to learn what I can. So far I've been totally trusting in the doctors because I don't know what else to do. My oncologist seems very knowledgeable and good at explaining things. It's just all happening so fast I feel I'm not grasping things well. It's also scaring me that this thing is getting more painful every day, so it must be growing fast! I just want them to do something quickly, whatever it is. Maybe that's not the right way of thinking. I think the pain is causing me to panic somewhat. They called in a prescription for Tramadol, but I'm trying not to take it except when it's really bad, because it makes me feel weird. Tom, I love your message about hope. And to have survived 19 years! I didn't even know that was possible from a late stage. So thanks again for all your responses. I will start trying harder to learn and improve my attitude. Feeling thankful that I came to this site. June

Hi all. Recently diagnosed and still in a bit of shock to be honest. Shocked and grieving and still can't talk about it without crying. I've scanned some of the posts here and you all put me to shame being so calm and brave. I hope I can become braver as time goes on. I'm a 64 year old wife & mom of two sons in their 20s. I'm a hiker, non-smoker, with no family history of any cancer whatsoever, so this was a total shock. I had just announced my pending retirement from work on June 1st. Talk about a change in your retirement dreams! Back in March I came down with walking pneumonia. I thought it was odd at the time, but they treated it with 2 courses of antibiotics and it cleared up. Apparently they could not see the mass on the x-ray at the time. I still felt more tired than usual but assumed it was leftover from the pneumonia & from working late, etc. Kicking myself now for not following up on that. Then around the first of June I started feeling a soreness in my right shoulder. It almost felt like a sore muscle so I didn't think much of it at first. A few days later I started feeling really bad again - almost like when I had the pneumonia, plus the shoulder pain worsened suddenly. So I went back to the Dr and this time they did a CT scan and there was the mass in my right upper lobe (with some involvement of one lymph node). A week or so later My PET scan results also showed a lesion on my hip. When my oncologist said this meant it was Stage 4 I felt like the floor dropped out from under me. (Unfortunately I had been Googling which had told me Stage 4 was pretty much a death sentence.) But my oncologist is telling me about advances in treatment, etc. so I'm trying to have some hope! At least my brain MRI was clear. We do not have all the test results back yet for the bio-marker stuff (sorry, I haven't learned all the terminology yet), but the bloodwork results were not promising in that regard. My case goes before a Tumor Board review tomorrow, so I should have a treatment plan by mid-week. I think I will feel better once we have a plan. Thank you for listening. I hope that wasn't too long-winded!