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Everything posted by LexieCat

  1. Great news--do you know what drugs he will be getting?
  2. Hi, Minh, SBRT is generally done in lieu of surgery when a patient can't tolerate surgery. Surgery is really the gold standard for making sure the tumor is removed in its entirety. So even though SBRT is very effective, unless there's some reason you can't/shouldn't have surgery (e.g., poor lung function), I'd go with the lobectomy. I don't know of any reason you COULDN'T get a lobectomy after SBRT, just haven't heard of its being done. Maybe there's a medical reason. Either way I'd want to go with my best shot out of the gate, and that would be a lobectomy. Another advantage of the lobectomy is they can take a sample of lymph nodes at the same time, to see whether it has spread. Most lobectomies today are done via VATS (laparoscopic surgery). There are three tiny incisions on your back/side. You are usually in the hospital only 2-3 days and I was out with friends to a concert and dinner just a week or so after getting out of the hospital.
  3. I'd suggest asking the oncologist. They often have pretty definite opinions about what kind of supplements to use. And I had next to zero GI issues due to chemo. They infuse anti-nausea meds with the chemo and prescribe pills (typically Zofran and/or Compazine) to deal with any bouts of nausea afterward. The only trouble I had was when I was taking the anti-nausea meds on a regular schedule, without waiting to feel nauseous. It caused the worst constipation I had in my life! The nurses set me straight and told me to wait till I started to feel queasy to take anything. As it turned out, it was rare for me to need more than one or two (at most) doses per cycle. Not once when I was on chemo did I ever throw up. It IS important to stay hydrated, but drinking plenty of water is probably sufficient. You need to flush out the chemo and not drinking enough water can cause serious kidney problems. Doesn't hurt to be prepared, but it might not be as rough as you're anticipating.
  4. I wore cloth masks in the beginning, but lately have been wearing a KN95. I recently bought a package of actual N95 masks (note that you need to check out the manufacturer--there are a lot of counterfeits still being sold), and I will use those for higher-risk settings--like the two indoor events (a reading by David Sedaris and a Clannad concert) I have next week, or the movie premiere I'm attending in NYC in October).
  5. That's one of the reasons lung cancer is so deadly--most people have no symptoms till it is far advanced. If it weren't for screening, I never would have known I had lung cancer when I was first diagnosed. And when it recurred, and I was Stage IV, I still would not have known but for the CT scans I was getting on a regular basis. Most people whose cancers are found early either discovered it as a result of lung cancer screening or because they were getting imaging for some other reason and the tumor was an incidental finding. Unfortunately, it remains largely a matter of luck.
  6. The University of Colorado has an excellent cancer center. And I'd strongly suggest that you consider a change in health plans when open enrollment time rolls around--it's right around the corner and you might be glad later for a plan with better benefits. Some of the targeted therapies are astronomical in price (over $10k a month), though the pharmaceutical companies generally have financial aid available for those whose insurance isn't adequate, and even a PET CT is over $2,000. You will want the best coverage you can afford. I don't know how your office works, or what kind of sick time benefits you have, but I don't think most employers expect you to know exactly how much time off you will need. I was working for a very small organization and they were very understanding--told me to do whatever I needed to do. I used sick time until that ran out and then short-term disability. When it became clear I wasn't able to continue performing my job (involving intense legal analysis), I used long-term disability (employer-paid). They held my job open (unpaid leave) till my long-term disability kicked in. I also qualified (as a Stage IV lung cancer patient) for Social Security Disability (SSDI). If I were you, I'd just be honest and tell them you will have a lot of appointments and that it's impossible to know what kind of treatment you'll require--that there's a good chance you might not need extended time off but you can't say for sure until all the testing is done. You are at the hardest stage of things, where you are waiting for tests and results and a treatment plan. Most of us feel better with all that behind us, where we can move forward with a plan of attack. I'd second the suggestion for anti-anxiety medication--hopefully one that will help you sleep. Do you have a good support system of family/friends? I've learned that keeping to myself the fact that I need help (e.g., a ride to an appointment or home from surgery) is a mistake. My neighbors and friends have really helped out when I've needed anything. My family is all out west, though my daughter came out to stay with me when I started chemo. I probably could have managed without her, but it was nice having her here.
  7. Targeted therapy does you NO good unless you have a targetable mutation. I don't have any, so targeted therapy is out for me. If you're eligible for targeted therapy, that's almost always the first line of treatment offered. It is much more effective, in most cases, than chemo. Immunotherapy might or might not be in the picture--that's a game-changer for many people. To the best of my knowledge nobody has chemo with targeted therapy--if I'm wrong about that, I'm sure someone will correct me. Most of the time first-line treatment is pretty standard, determined by cancer type, Stage, and biomarkers. One other option is a clinical trial if there is one that interests you and for which you are eligible. But most people don't go that route until first-line treatment stops working. The coughing after surgery isn't that bad if you have VATS. VATS involves three tiny incisions on your side/back, so no huge incision to strain. It sometimes helps to hold a pillow against your body at first when coughing. Oh, and while I'm thinking about it, you should get a wedge pillow for sleeping the first few weeks after surgery. It will be much more comfortable to sleep if your upper body is elevated.
  8. No worries--I'm a lawyer/writer and when I find a misspelled word or misplaced comma in any of my posts here, you better believe I'm gonna go fix it. Yeah, pretty big diff between 5 mm and 5 cm. If the entire tumor is removed by surgery, that should relieve coughing to the extent it's due to the cancer. But with your asthma, I don't know if that might continue to cause coughing. You WILL cough for a while after surgery. It's annoying and pretty uncomfortable, but they will give you breathing exercises that encourage coughing. They actually WANT you to cough right after because it helps clear the lungs. Most of my post-surgery cough lasted only 2-3 weeks. And if you can have the VATS lobectomy, that's pretty simple surgery with a fast recovery time. I was back at work about 3 weeks or so after my discharge from the hospital. One other thing--be sure a sample of your tumor is sent out for biomarker testing. Because you're relatively young, there's a good chance you have a targetable mutation that would enable you to benefit from targeted therapy (a pill) in lieu of chemo. I'm betting that with the size of your tumor, you will be offered adjuvant chemo after surgery--you need to find out if targeted therapy would be better.
  9. Hi, smashley, and welcome. I'm surprised they were able to biopsy a nodule that small--5 mm is tiny. A PET CT provides a pretty good indicator as to whether cancer has metastasized, but they will also sample lymph nodes as part of any surgery--not everything will show up on a scan. Usually, though, with a nodule as small as yours, it wouldn't be likely to have metastasized yet. Given the size of your nodule, I'd be surprised if that is contributing to your cough. Usually a tumor has to be larger or in an unusual place for it to cause coughing. Most people with nodules the size of yours have no symptoms at all. BTW, I'm from Colorado originally (Colorado Springs) and my kids and other family members are still out there (kiddos in Denver metro; others in the Springs). I'm hoping to get out there to see the kiddos at Christmas--last year was a no-go for that.
  10. Hi, Debbie, Congrats on the great outcome of your surgery! The best cure I know for feeling depressed about a lung cancer diagnosis is to stay close, and post often, in this forum. Talk about what worries you, listen to the wisdom of others who have BTDT. You can also reach out to find a therapist, since you feel particularly traumatized by your diagnosis and surgery. I was a longtime smoker, too, so I can't say I was shocked to find myself with lung cancer. It's a scary thing, for sure, but learning as much as I can about my specific cancer made me feel much more in control. I had a recurrence three years after my lobectomy (for what was then a Stage 1b cancer)--the recurrence in my other lung was Stage IV because I had a small metastasis to my sacrum. That was pretty upsetting at first, but I came back here and got busy dealing with what would come next. Surgery wasn't an option due to the Stage, but at first, before I knew about the metastasis, my doctor said it might be possible to remove the nodule with Cyberknife (radiation). Instead I wound up with a course of chemo and immunotherapy, and when the cancer eventually progressed again I chose to participate in a very promising clinical trial. I was treated a short time ago and it's a bit ambiguous how well it's working, but if it doesn't for some reason, there are lots of other trials out there for which I'm probably eligible. The thing about lung cancer is that it does change your life to some extent--even if there is never a recurrence you need to keep checking. OTOH, most of us learn to adjust to the new normal and even if some things are different, we are still able to enjoy life. Lung cancer brings with it inherent uncertainty--you never know if it will come back or if the new treatment will work, or for how long it will work. Still, we have people here 15-20 years out from their advanced cancer diagnosis. It does take a while to get your head in the right place, but it can be done. Good luck, and I do hope you'll stick around here. This is a great group--they've had my back (not to mention my lungs) since my original diagnosis in 2017.
  11. Ya know, I just noticed--there are FOURTEEN LEVELS--good god, why do we need that many? Not to mention you prolly have to live to be a hundred to get to level 14. Now THERE'S something for us lung cancer survivors to aspire to!
  12. Yeah, they booted everyone back to boot camp! Sorta silly, if you ask me--you really need only 3-4 levels altogether and it should start from where you are, not as if you're having day one all over again. SMH Good to see you again, though, and hope sticking around here helps. I need people who aren't *ahem* intimidated by my rapier wit!
  13. LOL, no matter what ever crappy thing happened to me, my mom's go-to response was: "It builds character." Yeah, ticked me off no end.
  14. Oh, I didn't realize she'd already had the brain mets treated. She should be in good shape as far as that goes, then. They will still likely order a brain MRI before any trial begins. I never went through so much testing in my life as I did for my trial!!
  15. Great--it definitely helps to be near a good research hospital. One thing--for my trial and several of the others I've seen, having untreated brain mets is a disqualifier. So addressing those brain mets (as I said, most likely with radiation) would seem to be the first order of business. I had to have a brain MRI before the trial, but my surgeon (who did my lobectomy, port implantation, and tumor cell harvest for the trial) told me not to worry--if any mets showed up we could treat them immediately and I could still do the trial. As it turned out, I had no brain mets but it was good to know they could be treated quickly. Just one thing to keep in mind. For trials, they want to stick with only one cancer treatment--so they don't want to confuse the results with radiation. But radiation first can zap the mets so she wouldn't be disqualified on that ground.
  16. Hi, Pam, For the brain mets it will almost certainly be radiation. For the bone mets, it depends on their location. My cancer had a similar course. I have no targetable mutations. I had a lobectomy in 2017, and last year, almost three years to the day, the doc found cancer in the other lung. This time it was Stage IV with one small met to the sacrum. I had the same triplet (plus Zometa) as your mom and responded great to that, but when I went on maintenance of Alimta & Keytruda, my cancer started to progress. I had additional bone mets and a spot on my liver. My doctor recommended one of a couple of clinical trials they were doing at U. Penn (where I'm treated), but I found another trial here on the forums that was being done at the other cancer center where I had my lobectomy. My first scan after that was terrific; the second one more "iffy;" and now I'll have to see how the next one looks. My oncologist told me there were literally hundreds of clinical trials for which I would be eligible, given my diagnosis and treatment history. So my suggestion would be to look into clinical trials and have her discuss any interesting ones with her doctor. Her doctor might know of some, or there are free services to match you to potential trials. Go2 Foundation does that; Lungevity has a matching service; and there are others out there. If you want to browse the possibilities on your own, you can do that at https://www.clinicaltrials.gov Every trial has its own criteria for who can or cannot participate. The cool thing about clinical trials is that you get to try out the latest and greatest science has to offer. There's never any guarantee it will work, but we don't have that with standard treatments, either. If my trial doesn't do the job, I'll most likely go for another. From what I understand the next standard line of treatment would include chemo much stronger than what I had before--a prospect that is less than appealing! But there are lots of trials in the immunotherapy sphere--certainly worth looking into.
  17. I think everyone's given Jeng great advice about caring for her husband's coughing and esophagitis. I think, though, one of the main questions she had was whether he needed 24/7 care, or whether she could take an hour or two here and there to run errands, take some time for herself, etc. I gave my opinion, but I've never been in exactly that situation with severe coughing and esophagitis. Could some of you who have BTDT weigh in on that question?
  18. Glad you were finally "found" by the system. You're absolutely right not to be too patient. You should also not assume that everyone has read the right reports and is doing everything correctly. My docs and nurses are terrific, but they've been known to make mistakes and get details wrong. If that happens, speak up right away so it can be corrected. Worst case, they were right and you were wrong, but no harm done by asking. The PDL tests, I believe, are pretty fast. It's just a matter of staining and looking at the cells--not like genetic sequencing. And yeah, for me the triplet (same drugs you're getting) was not too bad. Keep us posted!
  19. I certainly didn't need anyone around. My daughter came out to stay with me but she returned home after three months. I enjoyed the company and she was good to have around to help with certain things but didn't need any help otherwise. I didn't have radiation, but I did have carboplatin and pemetrexed. Infections build gradually--it's not likely to attack someone so fast they can't wait an hour or two for the caregiver to return. If you are worried, have him keep a cellphone or smartwatch nearby so he could call you or 911 in case of emergency. But really, I don't think an emergency like the one you're envisioning is likely.
  20. Just got a reply from her thanking me for the note and the high-five. She said she was happy to hear I'd been able to participate in Lungevity's programs.
  21. I sent her a message this afternoon. Not sure if she's seen it yet.
  22. I think this makes three of my doctors who have received Lungevity funding for their research! Dr. Marmarelis is one of two researchers getting funding for a new category, Health Equity and Inclusiveness Junior Investigator Awards. She will be studying disparities in NSCLC molecular testing, while the other researcher who received an award in this category is studying how incidental nodule findings are managed in underserved communities. This is an important area of focus--we know healthcare isn't provided equally to all patients. https://www.lungevity.org/news/media-releases/lungevity-awards-inaugural-health-equity-and-inclusiveness-lung-cancer-0
  23. I don't think you can draw any conclusion from how long the scan takes. My latest scan (and I'm dealing with somewhat ambiguous results) was super fast. I've had some that seemed longer than others. Might just be a variation on which machine is used or who the tech is. But two weeks is a ridiculously long time to wait for results of your scan. Is there any way you could contact your oncologist and ask them to phone with the results sooner? On the off chance that there is something significant to discuss, that could wait till your appointment, but if there's nothing of any great significance, it would spare you a ton of stress to find out sooner. Welcome--glad you found us. You might want to introduce yourself in the newcomers' forum. As you can see, there isn't much action on this thread--the last post was two years ago.
  24. Nodules sometimes appear and disappear on subsequent scans. Your nodules are tiny, and a CT scan takes an image of a "slice" of your anatomy at a time. If the angle changes even slightly, a nodule that showed up on a previous scan might not on another, even though it's still there. Different machines will take different images, too. So there's a good chance those nodules were there before but just didn't get picked up.
  25. When I was on the triplet (which included Carboplatin and Pemetrexed), I had fatigue hit about Day 4, which lasted only a couple of days. I also had a bit of brain fog that made it difficult to do my intense legal-research job. It really depends on his individual reaction as well as the type of work he does. Incidentally, I'm assuming he will be getting regular CT scans during this time (typically every 9 weeks or so)--that should indicate whether the tumors are shrinking.
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