1997sldj Posted July 16, 2021 Share Posted July 16, 2021 Good evening, everyone. I suppose I'm introducing myself because I am sure to become a frequenter of these forums, so it seems best to introduce myself now. My 47 year old husband was just diagnosed with stage IV metastatic lung cancer. An extremely large and apparently extremely aggressive pancoast tumor (a scan five years ago was clean), which is now 10cm x 9cm x 5.75cm. He has 3cm masses in his adrenal glands, as well, and we will find out tomorrow if a small nodule in his brain is a met. He has impact in the lymph nodes in his left lung; based on all of this, definitely not a surgery candidate (for obvious reasons, but also because the tumor is pressing against his jugular and is likely in the chest wall.) You could've knocked me over with a feather when they said "10cm" - my son had a brain tumor five years ago that was considered huge at 2.5. I actually stopped the doctor - "wait, did you say TEN centimeters?" The initial biopsy report was shared with us today, where it was determined it is NSCLC, squamous cell carcinoma. We are still waiting for the molecular testing and markers to come in; guessing this will be late next week/early the following. He has been a heavy smoker for nearly 30 years, so I suppose this shouldn't have come as a surprise, but it did; until he got his second shot, he had no symptoms at all. Those he did develop, we chalked up to a reaction to the shot. Then, after about five weeks as more and more symptoms piled on and he grew weaker and weaker, we started thinking, "okay, maybe COPD?" We didn't even realize he had lost weight until they weighed him in the ER, where we learned he had lost nearly 20 pounds since the beginning of May (we've been working from home together for 18 months, so I guess I just didn't notice, and neither did he, somehow). I mean, we knew something like this was likely in our future, but at 47 and this advanced... we didn't expect it at all. He is a strong man who rarely shows emotion; he has become thin and frail and he cries at the drop of the hat. Not because he feels that he is dying (though he does), but because he carries SO much guilt, and because he is thinking of the impact on me, our son, and his parents. He is terrified I may have cancer as well, and wants me to get checked out. Our son is handling it... okay (age 28), but he also wells up every time he sees his sharp, scientific-minded dad struggle to put a thought together, or have to rest walking from room to room. My son and I are both also having a hard time hearing how thin his voice sounds. He went to urgent care on Friday the 2nd to get a negative COVID test (when we tried to make a doc appointment for testing, they wouldn't see him due to his symptoms sounding like covid), where they did a chest X-ray and told him his right lung was partially collapsed and to go to the ER. So we did, where they did a CT and found that the "collapse" was indeed a partial collapse at the very top of his right lung, but the rest of the massive white area on the x-ray was a tumor. They told us right then and there it was cancer (not as abruptly as that; the ER doc was incredibly kind and the entire staff was wonderful), and admitted him to the hospital the following Tuesday in order to fast track the testing and consults. (Instead of waiting weeks/months for appointments and driving all over, they did the testing in-house and had the doctors round to him.) I'm not asking for prognosis or anything like that. We meet with his oncologist again in the morning and will leave all of that to him. We know enough to know that the situation is incredibly dire, but that everything will depend upon the treatment plan and his body's response to it, so I know no one can really tell me what to expect. Just establishing myself here, I guess, because I'm sure I will have questions and maybe sometimes need to connect with others who are dealing with this from one side or the other. I am definitely interested in others' experiences in this regard. And certainly happy to take any advice on how to be a good caregiver, especially as things progress - whether the disease, the treatments, or both. Right now life hasn't changed too much apart from his weakness and fatigue and the fact that now we know, and now he feels like he has an hourglass above his head, so the caretaking isn't too complicated - feeding him a lot, administering meds and vitamins, giving him ensure shakes for protein, etc. But we both know as this progresses, the demands on both of us are going to significantly increase. Anyway, hi. I'm Shannon. He is Daniel. Link to comment Share on other sites More sharing options...
Marilyn Raven Posted July 16, 2021 Share Posted July 16, 2021 Welcome Shannon I am from Australia and just started on this journey so my knowledge is limited, however the people on this forum are wonderful and have a lot of experience. and most from the USA. I just wanted to welcome you and wish you and Daniel the best. Blessings Maz Link to comment Share on other sites More sharing options...
Tom Galli Posted July 16, 2021 Share Posted July 16, 2021 Shannon, Welcome here. I'll get to the point quickly. At my surprise diagnosis, I had a tumor about 5 cm long and 3 cm in diameter completely filling the main stem bronchus of my right lung. The nature of my surprise was coughing up blood! I'm also a squamous cell guy and after surgery removed my right lung, tumors were found in my left--so stage IV after what was supposed to be curative surgery. Then almost 3 continuous years of treatment before I achieved a state of no evidence of disease or NED. My diagnosis was in February 2004--more than 17 years ago--and I'm still here! So if I can live, so can Daniel. The extent of molecular testing for squamous cell is to check for suitability of immunotherapy treatment. And, immunotherapy in our disease is a game changer. When it works, it yields amazing results so I am hoping Daniel's cancer will respond to immunotherapy. If immunotherapy is administered, it may be in the form of what we call "a triplet". That is two conventional chemo drugs (say taxol and carboplatin) plus an immunotherapy drug. Regardless, you should start addressing Daniel's weight loss. To negotiate chemotherapy requires calories and proteins to replace the drug's assault on many of the fast growing cells including very necessary red and white blood cells. Nutrition is one thing you can start working on and when he is discharged from the hospital, get him eating. I normally pass this along to the newly diagnosed. Moreover, you've about to become immersed in mastering a new vocabulary and this resource is very helpful. Of course, now that you've joined us, you have access to the many years of accumulated knowledge from survivors and care givers on this forum. We are here to support and sustain you and Daniel throughout treatment and most importantly, we'll answer questions. We are not doctors, but few doctors understand what it feels to have lung cancer. We understand! Stay the course. Tom Link to comment Share on other sites More sharing options...
TJM Posted July 16, 2021 Share Posted July 16, 2021 So sorry. Getting the actual diagnosis is a shock to everyone. Welcome and thanks for the excellent post. Let us know how we can help. Any chance your husband might join as well? Keep the hope. There are many options available now. I wont try to predict the treatment plan (though I have a good guess). Looking forward to hearing what the plan is. Peace Tom Link to comment Share on other sites More sharing options...
LouT Posted July 16, 2021 Share Posted July 16, 2021 We're sorry that you need to be here, but glad that you found us. You're going through a lot and it is something that all of us have had to go through as well, so we do understand. As you get to a point where you have questions we'll do our best to answer based on our own experiences. Lou Link to comment Share on other sites More sharing options...
PCW Posted July 16, 2021 Share Posted July 16, 2021 Hi Shannon and Daniel Welcome to the forum. Sorry you guys are going through such a hard time. I can almost say I know how you feel cause back in March I was given the same diagnosis : stage IV NSCLC which has metastasized to multiple organs including my spine, adrenal glands, liver and bones. I’m very hopeful now after just finishing 4 cycles of triplet : carbo, Alimta and an immuno agent named Keytruda. I experienced the triple SE to the minimum, with fatigue and hiccups as major ones . My initial plural effusion was basically gone after the first cycle of chemo. I know every patients case is different and your oncologist might try a different approach, but I’m relating to my experience. Things might look bad but please remain hopeful! Best of luck and take care! Paul CW Link to comment Share on other sites More sharing options...
1997sldj Posted July 16, 2021 Author Share Posted July 16, 2021 Thank you for all the helpful responses; the very good information already offered aside, it's reassuring to know that you're all out there. Since I'm new to the forum I'm not sure if this is going to end up as a reply to one person or not, nor am I sure everyone who has commented will receive a notification that I responded, but I did want to share today's update - which is actually positive news, it seems. To cut to the chase, after the doctor explained to us that the further testing wasn't in yet (he was extremely frustrated with the lab), he told us this would be either chemo, immunotherapy, or a combination. (Not a candidate for radiation unless the brain lesion turns out to be a thing - doc is still unconvinced so will order a new MRI in six to eight weeks; if it has grown, then okay, it's a met that will be irradiated.) He explained that if Daniel's PD-1 levels came in at 50% or above, he'd be a candidate for immunotherapy, but he didn't seem confident this would be the case and prepared us for going straight to chemo. It's not that he was negative on it, but rather, warning us this could be a thing. This was obviously not awesome news, because it basically meant, "if your levels are too low, targeted immunotherapy won't really be an option; we'll have to just pour poison into you and hope maybe it works." Either way, though, our oncologist was reassuring and positive, and advised that no matter what, treatment would start next week. I won't bore you with the details of the discussion, but trust it left us feeling very confident in his doctor. Told me to call Monday morning to ask if the labs had come in, and we'd go from there, with treatment starting very quickly regardless of the form it takes. So we came home, filled in his parents (who had been listening in on the phone and met us at our house), and about an hour into our discussion, the doctor called Daniel's phone. "I have good news and I didn't want to wait till next week to tell you." His PD-1 levels tested at an overall 97% positivity. The doctor said he doesn't even want to wait for the rest, and that there's no need to go the chemo route just yet - Daniel will start Keytruda next week. Link to comment Share on other sites More sharing options...
TJM Posted July 16, 2021 Share Posted July 16, 2021 That is awesome news! So happy to hear it. Peace Tom Link to comment Share on other sites More sharing options...
LouT Posted July 17, 2021 Share Posted July 17, 2021 Wow! Let's see how this works out, but it sure is sounding good. Lou Link to comment Share on other sites More sharing options...
1997sldj Posted July 18, 2021 Author Share Posted July 18, 2021 On 7/16/2021 at 7:38 PM, LouT said: Wow! Let's see how this works out, but it sure is sounding good. Lou We are under no delusions and are aware that people react differently to treatments - what works for five may not work for the 6th, and vice versa - but the fact that our oncologist seemed delighted by the result (if "delighted" is a word that can be used in this context) has left him cautiously optimistic, and pulling the brakes on prepping to not be here a month from now. He actually just texted his boss, "I guess you shouldn't transfer my projects JUST yet," which for him was a signal of a significant shift in his thinking up until now. No question it's going to be a long road, but it was the first small bit of okay news we've gotten since his diagnosis two weeks ago. Up until this, it's just been bad upon bad. I will say again, we both adore his oncologist. We lucked into someone passionate, knowledgeable about the new therapies, forthright, and the kind of guy we'd like to have a beer with even apart from "CANCER". for Daniel to like his doctor... he rarely likes his doctors, so part of me thinks his admiration and respect for the person managing his care will ultimately prove (and has already proven) helpful in how he embarks on this new journey. Link to comment Share on other sites More sharing options...
LouT Posted July 19, 2021 Share Posted July 19, 2021 You're correct that we can never be sure how someone will react to the same treatment with the same symptoms, but the fact that this marker may provide for an immunotherapy is good news as a first step. Please keep us updated. Lou Link to comment Share on other sites More sharing options...
TJM Posted July 19, 2021 Share Posted July 19, 2021 10 hours ago, 1997sldj said: We are under no delusions and are aware that people react differently to treatments - what works for five may not work for the 6th, and vice versa - but the fact that our oncologist seemed delighted by the result (if "delighted" is a word that can be used in this context) has left him cautiously optimistic, and pulling the brakes on prepping to not be here a month from now. He actually just texted his boss, "I guess you shouldn't transfer my projects JUST yet," which for him was a signal of a significant shift in his thinking up until now. No question it's going to be a long road, but it was the first small bit of okay news we've gotten since his diagnosis two weeks ago. Up until this, it's just been bad upon bad. I will say again, we both adore his oncologist. We lucked into someone passionate, knowledgeable about the new therapies, forthright, and the kind of guy we'd like to have a beer with even apart from "CANCER". for Daniel to like his doctor... he rarely likes his doctors, so part of me thinks his admiration and respect for the person managing his care will ultimately prove (and has already proven) helpful in how he embarks on this new journey. Wish I had his oncologist. I have to treat mine like he is my mother in law. There will be many of these small victories going forward. Celebrate them! Peace Tom Link to comment Share on other sites More sharing options...
Tom Galli Posted July 19, 2021 Share Posted July 19, 2021 Shannon, If Daniel has infused immunotherapy or immunotherapy in common with infused conventional chemotherapy, ensure he get's a port. That may at this point be a minor consideration but it will quickly grow to a major pain in the a** as more and more well intended folks in the medical community attempt to access a vein. Here is a IV assault lesson learned of mine. Stay the course. Tom Link to comment Share on other sites More sharing options...
Judy M2 Posted July 19, 2021 Share Posted July 19, 2021 Having a good relationship with your oncologist is important because they'll be your care team for a long time, hopefully. My oncologist is kooky but he does everything he can for his patients and expresses his love for all of us on a regular basis. That attitude really does transfer from him to us. I also recommend a port for infusions. It's a simple enough procedure, and the port can be used immediately after placement. Best of luck with Keytruda. Link to comment Share on other sites More sharing options...
Susan Cornett Posted July 25, 2021 Share Posted July 25, 2021 Great news on the PD-L1 numbers. Mine have always been under 20% so I went the traditional route with chemo and radiation. Not as exciting but it worked! Something you'll quickly learn is that treatment options are increasing and improving every year. I was diagnosed in 2016 and I've been amazed at the progress made in treatment options. It's definitely a roller coaster of emotions so know that we're here for all of it - good and bad. If your husband can hold onto his good attitude, it will absolutely make a world of difference. Link to comment Share on other sites More sharing options...
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