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Newly diagnosed - stage 4 NSCLC


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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!

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Hi June,

I had a similar experience as you. The vast majority of those of us diagnosed stage 4 are floored as it often comes out of the blue. You can get lots of helpful pointers on this site, but the No 1 thing to know is that stage 4 is NOT a death sentence. I am coming up to my year one since diagnosis, and I can say that although a big chunk of the year has gone with treatments, test, worries etc, I have just spent the last 3 weeks at various family parties, festivals, concerts etc. I am now convinced I have time and I am not wasting it worrying. So you will likely have some months of grief and worry ahead, but life is absolutely and in no way over! 
 

Having said all this, this is tough, and this site is such a help. So stay with us and ask any question as you go through the maze.

Best, Rikke

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Hi June, we all know what a shock it is to be diagnosed. I certainly was shocked when I was told I had Stage IIIB lung cancer in October 2019. 

It's important to have your biomarker test results when your treatment plan is established. You may have a genetic mutation that can be treated with a targeted therapy drug. My mutation is EGFR Exon 19 deletion and I take a daily pill. There are many Stage IV patients who are doing well for a long time. I've had No Evidence of Disease since April 2021 and although I'm not cured, I am healthy. 

So don't listen to Dr. Google and consider virtually attending LUNGevity's upcoming International Lung Cancer Survivorship Conference, where you can learn a lot in a short amount of time. 

Let us know how things go. Hang in there and try not to get ahead of yourself. 

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JuneK,

Welcome.

Judy's advice is just what you need now--to acquire knowledge about this disease. Her suggestion of attending our upcoming survivorship conference is a good one. It is a virtual conference using Zoom technology and it will be a crash course in understanding all things "lung cancer". Here is the link that allows you to register for this free event.

My diagnosis, like yours, was a surprise. Mine occurred at age 53 and I did exactly what you did--took a deep dive into "Dr. Google" to ascertain survival possibilities. The virtual doctor suggested about 6 months, and I've beaten that by a large margin. In February, I will have survived nineteen years after diagnosis of late stage lung cancer, progressed to Stage IV. So my first suggestion is, if I can live, so can you!

How does one do that? I believe knowledge is power in this disease so learn everything you can about it in general and most importantly, when you get your biopsy information back, take a deep dive into your particular type and presentation. How does one do that? The survivorship conference is a grand introduction but here (our Lung Cancer 101) is a very good tool you can use today.

Besides knowledge, survival attitude, I believe, is important. I don't know why. There is not any science to back up my attitude suggestion. But there are human dynamics that support it. If you present yourself as a knowledgable patient, believing the treatments you receive are going to help, and asking relevant questions of your treatment team, they will stretch to do there best for you. Here is a blog I wrote years ago that cites Stephen Jay Gould, PhD, who was diagnosed with a very lethal form of lung cancer but went on to survive 10 years beyond his diagnosis. In the blog, there is a link to the essay Gould wrote about his survival journey that speaks to attitude and listening to that essay now, for you, will be most helpful.

So we have knowledge and attitude and last but perhaps the most important thing for you to embrace now is hope. And, indeed "hope is a good thing." Here is my message to you about hope.

We are here for you every step of the way. We can answer questions and offer feedback. Recognize that lung cancer treatment is no longer a medieval experience. New and sophisticated methods that actually produce results are in play for those in treatment today. There is much to be hopeful about.

Stay the course.

Tom

 

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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

 

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Hi June and welcome! I'm glad you're hearing those messages of hope from those other members.  Stage 4 is no longer a death sentence. My lung cancer was stage 1. Before that, I had a gynecologic cancer of a rare and aggressive type that was Stage 3 with a "dismal prognosis"(those words are in my chart!) Yet, here I am more than 10 years later with no evidence of disease. Old survival statistics are pretty irrelevant! 

The conference should give you useful information. With all the recent advances in lung cancer treatment, the learning curve can be pretty steep, so don't be concerned if you can't take it all in at once.

Best wishes to you!

Bridget O

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Hi june 

Sorry to hear your going through this, it is difficult to stay strong and positive but sadly the alternative is worse, I know I felt exactly the same way as you and sometimes still do, goodluck with everything keep us updated this site is really helpful and gives everyone hope.

take care Justin x

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June, other people are in your shoes. It's new, scary and the technical language is foreign to us laypeople. I've found that the more you can hear from experts, the knowledge starts to sink in. After watching many presentations, I have a working knowledge of terminology but admit that I still don't understand everything, especially about other mutations. 

I'll be watching the conference. This will be my third year!

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Hi June, 

Sorry you have to be here, but if you have lung cancer, you won't find a better group to hang out with. I hope you got some good info from the conference. I learned some helpful things. And the upward trajectory on treatment options and research is amazing. 

One thing I learned is the benefit of having both a liquid and tissue biopsy. As one doctor said, tissue is the gold standard, but sometimes that's not possible. The benefit of a blood biopsy is that it yields results much more quickly-- days, instead of weeks-- and may give information to speed the development of a treatment plan. 

I don't think it's possible to feel anything but scared, overwhelmed, and angry at the beginning, so if you don't feel hope yet, just let us have hope for you.

For example, I'm also a Stage 4 person, and was pretty sick for a while. But I just finished a week's vacation on the Olympic Peninsula in Washington, where we hiked and rode bikes. I've been working consistently on building toward my former levels of fitness and was happy to be able to hike upwards of 8 miles a day. And, after a year of being off of my bicycle, I did a a 20 and a 30 mile ride.

So, onward. There is life with stage 4 lung cancer and we can make it worth living!

Hang in, we're rooting for you.

Karen

 

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Take your pain meds. My rib pain was so bad, my blood pressure was 190 over 140.  Ask for 15mg of morphine.  I take as needed.  But after being on Tagrisso targeted therapy for two weeks,  my rib pain is non existent and I can stop the morphine.  Morphine is a wonder drug at 15mg.  I don’t even get itchy.  

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On 7/17/2022 at 10:37 AM, Karen_L said:

For example, I'm also a Stage 4 person, and was pretty sick for a while. But I just finished a week's vacation on the Olympic Peninsula in Washington, where we hiked and rode bikes. I've been working consistently on building toward my former levels of fitness and was happy to be able to hike upwards of 8 miles a day. And, after a year of being off of my bicycle, I did a a 20 and a 30 mile ride.

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 

 

 

 

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@JuneKOh dear June, I wish for you that my experience would become your hope for the future.

I had to do a lot of thinking about what hope actually is. After some reading and pondering, the best I came up with is that it's a combination of belief + action + some kind of planning for the future. Someone I know said that hope is a muscle that had to be used. In the beginning, I thought that was very nice 😉, but there was no way I had either. I didn't see that my action was that I underwent all my testing, went to treatment each day, and tried to do some kind of moving around.

At first the movement was pretty basic, e.g. counting steps. The day I hit 2,000 I felt like I deserved an Olympic medal. (Actually, the first step was walking to the end of the street. hahaha) I learned that fatigue was best addressed by exercise, daily. And I think my belief was that the treatment would somehow affect the cancer. It must have been, otherwise why would I put myself through that !? 

My insistence on exercising earned me cautions from my oncologist. But I have always held fitness as an important principle in my life, so I made sure to add enough rest and I kept on. 

This past January, I was given the green light to go back to a full course of exercise. (Not that I was in any kind of shape I recognized.) I'm lucky that my pulmonologist is an avid bicyclist. When I told him I wanted to train to do a very long, challenging ride in September, he said that was a wonderful ride and he thought it was a great goal. So, phooey on you oncologist-who-probably-doesn't-exercise-like-that. (Just kidding.) I think that goal is evidence of hope. 

I also have learned enough about lung cancer to make peace with the parameters of the disease. So, while I can, I am hiking, bicycling, doing these things I love. Coming up: two weeks camping on Cape Cod in MA, and a week hiking in Zion & Bryce Canyons. Lung cancer will not steal these things for me; I will not consign myself to the couch and wait to die. (After all, it could be a long wait. ;-) ) (I cope through humor. I find it completely absurd that a nonsmoker, very fit individual would get stupid lung cancer. I get emotionally clobbered by each development that isn't favorable and have to curl up under my bed for some period of time, but then I emerge and make fun of it.)

You're going to get through this, no matter what. And stories of your experience will be exactly what someone needs to make it through another day. 

Karen

 

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  • 2 weeks later...

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…

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Hi june 

This journey is filled with overwhelming sadness unfortunately, but your not going through it alone,  we're all with you along with your family and we'll all get through this, please try and stay strong take care Justin x 

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June,

There may be some that are strong enough to face a lung cancer diagnosis alone, but in 18-years of hanging around in life after diagnosis, I've not met anyone.

If you think you eventually will need professional help, then it is highly likely you do. Don't wait like I did until I was severely depressed and then enduring depression on top of treatment. 

Stay the course.

Tom

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Hi June

I was in your shoes about ten months ago my Oncologist told me I was stage 4. Depression and anxiety was consuming me couldn't talk about the cancer without tearing up. I did meet with a therapist a few times but what helps me most is checking out this group daily. Family and friends are there for us but communicating with other people fighting this disease helps me move forward. 

Stay with us

Chuck

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Hi from me too June-

Your story is so similar to mine- I had an undiagnosed cough that went on for months with multiple physicians and treatment plans.  Two chest X-rays, two CTs, before we finally got around to the shocking diagnosis.  We hoped the biopsy would identify a fungal infection.  No one was looking for lung cancer in a competitive athlete who was 51 years old.  
 

In a few weeks I will be celebrating my 55th birthday, a milestone that I didn’t think was possible when I was diagnosed in 2018.  
 

Nothing about this disease is easy but we’re here to say you can do this.  Life will eventually settle into a new normal.  Believe it or not there will be a time when you’ll be able to say you didn’t even think about your cancer.   Brighter days are coming. 
Michelle

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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

 

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