Jesse L. Posted March 18, 2021 Share Posted March 18, 2021 So my story is maybe like many others, but it is definitely new to me... I'm a 64 yr. old male who tries to stay in good shape, never drank any alcohol, and quit smoking a couple years ago. An annual CT scan showed a single 2 cm. by 1.4 cm. spot on my lower right lobe back in mid December. Seemed pretty small to me but my Dr. insisted I get it checked. Next was a PET scan which showed no light up. Then through a bronchoscopy I had a biopsy done and sure enough it was diagnosed stage 1a adenocarcinoma. Next came the surgery to remove the lower right lobe and wouldn't you know it while the surgeon was in there he noted two irregular lymph nodes. Well, he took those out too and after testing them it is now determined that I'm a stage 3a. This is getting better right along...not!! Well, at least I learned today that through a brain MRI and a full body scan there is no other evidence of any cancer mass; thats a good thing. So now per my tumor board team I'm looking at 4 rounds of a Cisplatin/Pemetrexed cocktail just to possibly take care of any loose little cancer cells roaming around my lymphatic system looking for a home. In just 3 months I feel as if I've gone from a viable human to a broken down sickly human ghost. How can I help but feel this way when I see the commercials on TV showing barely alive people on their last days proclaiming how they should have lived healthier rather than dieing horribly at a young age... And the Dr. who gave me the news of 3a didn't help matters either; he honestly looked at me as if I was dead man walking when he told me that. Worse than that he continued in his speech looking for me to break down somehow; it was some really bad bedside manner. Don't get me wrong; I'm bummed enough about all this and I sure don't need any help in that regard. In any case I'm just trying to do the best I can to get through this... When all is thought and said, what else is there... I would appreciate any thoughts people can give me on expected side affects and how does one cope with the fear of recurrence. I don't want to go through all this only to do it again... And then again why would I be special in that it should never happen to me again. All the things I read on this forum tells me that recurrence can happen to anyone. Sometimes it just seems so depressing...and overwhelming!!! Please everyone just keep writing so I know you care...it is appreciated more than you know. Link to comment Share on other sites More sharing options...
TJM Posted March 18, 2021 Share Posted March 18, 2021 Dang. Depressing. Overwhelming. Totally unfair. And nobody deserves this. That sums up how I have felt many times. Your experience is very similar to mine (and many others). Chemo was not nearly as bad as I feared. Tired, a bit of Chemo brain and some nausea (not constant) and I stopped taking the anti nausea meds because of headaches. FWIW I would not hesitate to do it again if required. The best news? I was diagnosed early January 2020. Had a lobectomy and adjunctive Chemo and now, 14 months later, my latest scan was clean! You can do this and you definitely found the right Club. Peace Tom PS I was upstaged to stage IIIa after surgery as well. Link to comment Share on other sites More sharing options...
LexieCat Posted March 18, 2021 Share Posted March 18, 2021 Hi, Jesse, and welcome. Not to "the club" but here to these forums, which is a great place to get info and support. Actually, you've already been through what a lot of us find the worst part of the experience--the initial diagnostic testing and waiting. Did they send samples of your tumor out for molecular testing? I'd make sure they do that--ASAP--if they haven't already. It's possible you have a mutation that can be treated with targeted therapy (a pill) as opposed to the chemo regime. My cancer (now Stage IV after a lobectomy 3 years previously) is considered "oligometastatic," which means I have a single, small metastasis (on my sacrum). I had the option to get "curative" treatment, as for Stage III (what you're getting), but mine would have involved radiation and the location was such that they were worried about damage to my esophagus from the radiation. So instead, I got what we call the triplet--carboplatin, pemetrexed (Alimta), and Keytruda (immunotherapy drug). But if I'd received the other treatment I would have gotten the Cisplatin. From what i understand, cisplatin is a bit more heavy-duty in terms of side effects than carboplatin, but in both cases, you just have to get through several rounds. We have a bunch of people here doing well 15-20 years from an advanced lung cancer diagnosis. Remember, those commercials you're referring to are meant to scare young people away from smoking. LOL, hopefully they work--they didn't for me, but whatever. NOBODY wants to have to deal with lung cancer. Here's the thing. Even though there is always the possibility of recurrence, new discoveries and treatments are coming along every day. I think we all feel a bit more vulnerable/mortal after facing cancer than we did before. I'm not a hundred percent sure that's a bad thing. There are always things to appreciate. Hang in there--do see about that testing. The targeted therapies can be VERY effective. I don't have any "actionable" mutations (i.e., nothing they have a treatment for), but lots of people here do. Link to comment Share on other sites More sharing options...
Rower Michelle Posted March 18, 2021 Share Posted March 18, 2021 Hi Jesse, Welcome here. The first thing I want to say is with all the scientific advances in lung cancer treatment today, we don’t look anything like those people on TV. Smoking doesn’t cause lung cancer, it’s a risk factor. I never smoked and found out that anyone with lungs can get lung cancer. In the early days of my diagnosis in September, 2018, I received the same expected “stare” from almost everyone when I told them I had lung cancer. When I started treatment, with a Stage IV diagnosis, the word remission wasn’t in my vocabulary, yet here I am, almost three years into this, thinking about all the fun summer projects. We will be here for you- ask us anything.. Michelle Link to comment Share on other sites More sharing options...
LouT Posted March 18, 2021 Share Posted March 18, 2021 Jesse, Glad that you found us. We, very much, understand your feelings as we've all gone through them. Sometimes we can even see our feelings on others' faces. That happened to me in the beginning as well. I believe it is just a normal human reaction. But as you've heard from others here; there have been so many advances that many LC's (lung cancers) can now be treated as a chronic disease rather than a terminal one. While our type of cancer can recur more than some you will find story after story here of folks who have had to undergo treatment more than once, but are NED (No Evidence of Disease) and living a full life. Stay strong Jesse, you can fight this and medical science has so much more to offer than they did just five short years ago. Lou Link to comment Share on other sites More sharing options...
Judy M2 Posted March 18, 2021 Share Posted March 18, 2021 Hi Jesse, welcome to the fight club. Sorry you had to join. I was (shockingly) diagnosed with Stage IIIB in October 2019 at age 67, went through 30x radiation and 6x chemo (carboplatin and taxol). I was not a candidate for surgery. Radiation gave me very painful esophagitis, and I could not eat or drink. When chemo ended, I went to my chemo infusion center for hydration 3x a week. For whatever reason, I developed a bowel perforation and needed emergency surgery on Valentine's Day 2020. I was in the hospital for 10 days and a rehab facility for 10 more days. I was discharged just as Covid started to shut things down. So talk about a sickly human ghost, that was me for months last year. I had to use a walker, and just moving was painful. Then when I started feeling better, I developed shingles in June! So another setback, and the anti-viral meds made me nauseous. I'd say that by August 2020 I was feeling more normal. In fact, as of this January, I've been declared healthy again. I have an EGFR mutation and have been taking Tagrisso since March 2020. My scans have been showing improvement, and my oncologist says I'm doing amazing. I feel good today. I've regained all the weight I lost and you'd never know I had any disease if you didn't know my story. So please get your biomarker testing to see if you have a targetable mutation. I find Tagrisso to be very tolerable with just some minor nail splitting. My oncologist is a huge believer in hope, because he had a near-fatal injury as a teenager. He has never given me any reason to think I couldn't be a cancer "thriver", not just a survivor. Yes, there are ups and downs, but everything I've been through has made me more positive and determined. If and when recurrence happens, I will deal with it then. The more you learn about lung cancer, you'll find that the research is amazing, and we have reason to be hopeful. Who knows what they'll come up with in the next few years. Link to comment Share on other sites More sharing options...
Jesse L. Posted March 18, 2021 Author Share Posted March 18, 2021 Thank you to all who replied for the encouragement and whatever advice you can give me. I hate to admit it but I really do need that. For that matter this is the first time I have ever put anything out there on the internet...that's how vulnerable this makes me feel. I really don't like feeling that way but I suppose none of us do. Guess I'm a social animal after all along with the rest of the human race...who knew? They have sent my samples out for testing to determine whether I am eligible for targeted therapy in pill form after the chemo is done. We'll see how that goes... Also it is not certain yet whether I'll get Cisplatin or Carboplatin...depends I guess on how much my hearing is affected. I have to go in for an initial hearing test and then through the treatments more hearing tests to determine if I will be losing too much of my hearing. To much hearing loss and I guess it'seems on to Carboplatin instead... Also one good thing...I'm getting my care through the VA (34 year veteran USAR) and despite all the horror stories, I think my care has been very good. So kudos to the VA... As to recurrence I suppose I should just concern myself with the here and now, but that's hard to do when for so many years I just took for granted that I would live to a ripe old age. As hard as it sounds it is hard to admit human frailty...that is what I see now. I guess I just have to stop bargaining for time as if I lived long anyway and just live life day to day. What a mind shift that is...and so very hard to do for someone like me who was raised to believe that "better times are coming...you just wait, they'll be here for sure"! This is hard...!!😩 Link to comment Share on other sites More sharing options...
LexieCat Posted March 18, 2021 Share Posted March 18, 2021 One of our longtime survivor members (also on Lungevity's Board), Tom Galli, is an Army vet who got VA treatment. We've mostly heard great things about lung cancer treatment through the VA, so your experience, happily, isn't unique. Glad to hear they are on top of the molecular testing. Hang in there--none of us here is a superhero and we're all getting through this--you will, too. Link to comment Share on other sites More sharing options...
Jesse L. Posted March 18, 2021 Author Share Posted March 18, 2021 Thanks to you all for your kind words of faith and encouragement... I start my chemo on 4/5 and every three weeks thereafter for a total of four rounds. For now that has my mind preoccupied. I can't help but feel a tinge of guilt though for all on this forum whose stories I read are so much worse than mine. All I can think is I wish the best for all...for sure this is not the "club" to join for fun but I'm glad it exists... Link to comment Share on other sites More sharing options...
LexieCat Posted March 18, 2021 Share Posted March 18, 2021 BTW, Jesse, There's a Veterans' forum here, that is intermittently active: https://forums.lungevity.org/forum/64-us-veterans/. You might want to put a post there for other vets to see when they come in. No rules here, though, about where you can post--as I said, that one is active only intermittently. Most of the relevant info you'll be looking for will be on the other forums. Link to comment Share on other sites More sharing options...
LouT Posted March 18, 2021 Share Posted March 18, 2021 Jesse, Glad that you are getting started. We all feel better once we are going through treatment as opposed to the waiting during the diagnostic period. Stay strong and let us know how you are coming along. Lou Link to comment Share on other sites More sharing options...
Tom Galli Posted March 19, 2021 Share Posted March 19, 2021 Jesse, I'm the "old guy" (long time survivor) that Lexie identified. And I am also a vet. But while I've received medical care through the VA, I did not have my cancer treatment at a VA hospital. When diagnosed, I benefited from a very, very good employer-provided medical plan that had almost no deductible and covered almost everything. But, I've used VA medicine after retirement and was pleased once I navigated the bureaucratic process of eligibility for care. I'm sorry I'm late to respond. Texas has been plagued by electrical power outages! So surgery discovered more that anticipated. It happens. You report post surgery chemotherapy and that is normal for stage IIIa folks. The term for this form of chemotherapy is adjuvant therapy. Here is the definition. OBTW - spend some time reviewing Lung Cancer 101 here. One of the advantages of being around for a while is having a "how to" library on lung cancer. Here is something that is useful to the newly diagnosed, and here is some personal insight on recurrences. Lung cancer is hard but so is life. You've chosen treatment and therefore life so... Stay the course. Tom Link to comment Share on other sites More sharing options...
Jesse L. Posted March 19, 2021 Author Share Posted March 19, 2021 Thanks to all and especially Tom for your insights and help. I actually have had all of my care at the VA between the clinic in Green Bay and the VA Hospital in Milwaukee. As stated earlier I have no complaints at all... After some investigation it seems that there's agreements between most of the major hospitals in WI (Froedert, Children's Hospital Milwaukee, Medical College of WI, University Hospital of Madison with cancer center, etc.) to share doctors, nurses, technology, knowledge, care and everything to do with medicine. And as also stated everyone in the system has gone way out of their way to be helpful and accommodating. When I had my surgery there was no less than a dozen folks in the OR and by my count over half were Dr.'s or same in training. I was kind of concerned they would get in each other's way but they must have made it work. Then too after my surgery I wanted to stay an extra day in the hospital just to be sure I was OK before going home and they had no problem with that at all. Just today I got a call from the Clinic in GreenBay to get me in tomorrow for the hearing test to get it out of the way early...apparently someone canceled and I could get in then. Just another little way they make me feel as if I'm a priority... And I don't need to tell anyone that I have enough to worry about now without what everything costs... I hope everyone out there gets good care when they need it...it's important to feel cared for as well as being cared for. Link to comment Share on other sites More sharing options...
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