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LexieCat

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Everything posted by LexieCat

  1. I just learned, during my hospital visit, that the wife of my incredible surgeon is a cancer survivor, herself. Jenna Benn Shersher founded and heads up a nonprofit called "Twist Out Cancer" (the title references a video she made of herself doing the Twist, during the time she was undergoing treatment, which was picked up and went viral with hundreds of others making their own Twist videos). The organization's signature program is "Brushes With Cancer," which pairs those who have been touched by cancer with artists. Over a period of months, the artists create works of art (paintings, poetry, photography, etc.), which reflects their partner's experience. The resulting artworks are then sold to raise funds. Here's the website, for anyone interested in participating or learning more: https://twistoutcancer.org
  2. No, can't say I ever heard of it, but I sure wouldn't want my lung bulging through my ribs. If you aren't confident in your surgeon you can certainly find another, but it seems like something that should be fixed ASAP.
  3. Seems to me that mine was 4 hours or so. Best bet is to ask your surgeon.
  4. Susie, I'm gonna throw this out there just in case it helps. I, too, was a smoker for many decades. A year before my diagnosis I switched to vaping. It isn't the nicotine that gives you cancer, it's the products of burning tobacco when inhaled. Now, there has been some research SUGGESTING that nicotine might, even if not causing cancer, encourage tumor growth. So I later switched to zero percent nicotine liquid and finally stopped vaping altogether recently. My doctors, including my oncologists, knew about my vaping and considered me a "non-smoker." None of them urged me to quit. So the BEST thing to do is to quit nicotine altogether, but if you find it too difficult not to pick up a cigarette, give vaping a shot. It's certainly better than smoking. I vaped for about 5 years and didn't have the urge to smoke all that time. It satisfied the "nervous habit" aspect of smoking that nicotine patches or lozenges didn't touch. If you do decide to try vaping, do your research and find a reputable company that tests for impurities or dangerous compounds in their e-liquids. Some manufacturers are fly-by-night and not sufficiently careful in their manufacturing processes. The reputable companies will have good reviews and will talk about how they test their products.
  5. Hi, Scott, Sorry you've had to go through the pre-op jitters two times--once is enough. If it helps any, my lobectomy was one of the easiest surgeries I've ever had--my C-section hurt worse, and longer, than the lobectomy did. That was for the VATS procedure (video-assisted/laparascopic). Three tiny incisions and that's it. I missed only a couple of weeks of work. One of our members, Lou, has put together a nice list of tips and tricks for lung surgery: https://forums.lungevity.org/topic/47249-thoracic-surgery-tips-and-tricks/ The ones I found the most helpful were to use a wedge pillow for sleeping for the first few weeks (you'll breathe easier if you are slightly elevated) and doing your breathing exercises diligently. They make you cough, which is uncomfortable and annoying, but coughing is important to keep your lungs clear. One other thing--be sure a sample of your tumor is sent out for molecular/genetic testing. If it is positive for certain types of mutations, you might be able to use targeted therapy (a pill) instead of chemo, if additional treatment is needed. Hopefully this time it will go off without a hitch.
  6. OK, good. Hopefully the bronchoscopy will settle things. Unfortunately, it's impossible to go by our feelings as to whether something is "something" or nothing. Will keep my fingers crossed you get a good result with the biopsy.
  7. Well, the FDG uptake on some of those lymph nodes is a bit high. The lower right nodule they apparently were concerned about doesn't have a very significant uptake, but sometimes they don't, even when they are cancerous. You can't definitively diagnose lung cancer from a PET CT, but I'd suggest a consult with either a pulmonologist or an oncologist. At the very least, you should probably have another CT scan in a few months--but I'd get a lung expert in the picture, rather than just your PCP.
  8. LexieCat

    Keytruda

    The standard for survival rate statistics is five years--even for easily-cured cancers. They stop counting after that point, to the best of my knowledge. What we can expect to see is an increase in the number who survive five years. The further out you get from diagnosis without progression, the less likely you are to have a recurrence. It can happen, but it's less likely. I have about 5% PDL-1. I did great on the triplet (Carboplatin, Alimta, Keytruda), but had progression soon after starting maintenance therapy of Alimta and Keytruda. So Keytruda was not the magic bullet for me, unfortunately,
  9. It hasn't been approved; it has just been granted "breakthrough therapy" designation. That means the steps necessary for approval can be expedited so it will reach the approval stage sooner. I believe it is currently available only through clinical trials. Here is a list of trials that are ongoing--you might see if your relative qualifies for one of these trials: https://www.clinicaltrials.gov/ct2/results?cond=&term=adagrasib
  10. You've posted in a few different forums. If you click your name by one of your posts, your profile will come up. On the right side of the screen are all your posts. If you click one of those, you can scroll up or down to see responses. Hope this helps.
  11. Your thread is under Treatment Forums and then Chemotherapy. Here's a bookmark--you might try that if you're worried about losing your thread: https://forums.lungevity.org/topic/48788-clean-up-chemo-post-curative-surgery/ Once you are logged into the forums, at each visit to the home page (https://forums.lungevity.org), you will see any forums with unread content highlighted in bold print. If you click the forum, the threads with unread content will be bolded. That's the way I normally read the forums--I can tell at a glance what's been posted since last time I looked.
  12. Personally, I don't know of any way to distinguish symptoms like tiredness due to disease vs. tiredness due to chemo, assuming both can cause it. I always think tiredness, which is such a common side effect of many chemo drugs, is most likely to be due to the drugs. How you feel while on chemo doesn't tell you anything about whether it's working. So yes, you can feel like crap and it's still working. Unless there is some new symptom unlikely to be caused by chemo (e.g., pain from bone mets), it's pretty hard to tell how things are going until you have the next scan.
  13. I think inflammation is usually identified by changes in the scans over time. The thing is, even the best oncologists often can't say with certainty what a particular scan shows. They can say, based on what I know about this type of cancer and this patient's diagnosis and course of treatment, this is what I think is going on. One of the best pieces of advice I can give someone newly diagnosed (or with a loved one newly diagnosed) is to try to get used to living with uncertainty. Even when it looks like things are going great (or very badly) there are surprises--both good and bad. There are people here who have had to go through several lines of treatment before they get a significant response. Other times, we can be sailing along, thinking we're doing great, and suddenly there's a change and new tumors or metastases. turn up. I try to be positive--my reasoning is that there's no reason not to believe I'll be one of those people who winds up with a durable response with the cancer gone for good. At the same time, I'm well aware that this disease might eventually do me in. My goal is to hang around, with good quality of life, as long as possible.
  14. Remember, stopping the cancer from growing is a response--not a big one, but it is a sign that the treatment is affecting the cancer. It's certainly possible to see the cancer reduce in size over time. Also, with immunotherapy, there is something called "pseudo progression"--where it looks like the tumor has grown, but it's actually just inflamed because the immunotherapy is working. One thing I've learned the hard way--don't go by the radiology reports; the oncologist's interpretation of the scans is much more reliable. Radiologists report impressions; the oncologist knows the patient's history and treatment and what they hope/expect to see. So the best source of info is the oncologist.
  15. I had a lobectomy in 2017--at that point I was Stage Ib and the doctors said it was almost a coin flip as to whether adjuvant chemo would be of any benefit. Given the odds, I passed on the chemo. Three years later, the cancer recurred in my other lung and at that point was Stage IV, since it had spread to several lymph nodes and a spot on my sacrum. Nobody could tell me whether this was truly a spread/recurrence of the original cancer or a completely new one. Nobody can say whether having the chemo would have made a difference. I've made my peace with it--what's done is done and I just have to deal with things as they now are. I still think I made a reasonable decision. BUT, had I known then what I know now, I think I probably would have gone with the chemo. It's a bit of added insurance and not that terribly burdensome.
  16. You have to be careful about using the word "progress" with cancer--like the word "positive" (as in a positive biopsy), it isn't a good thing. "Progression" means the cancer is growing and/or spreading. So we way "improvement" or "response" when we talk about the cancer's being arrested or reduced. Generally speaking, having the cancer stop growing/spreading is good news. She may have more of a response with the next infusions/scans. I think it's too soon to say it's not doing any good. When someone is truly not benefiting from a treatment, the oncologist usually switches to a different treatment. What did her oncologist say about the scan?
  17. The combo a lot of us receive/d we call the "triplet"--Carboplatin, Alimta (Pemetrexed), and Keytruda (Pembrolizumab). If that's what he's getting, there's a good chance his side effects will be minor/manageable. I used to get hit with horrible fatigue about day four of each cycle, but most of that would disappear over the next couple of days. The other effect that bothered me was "brain fog"--difficulty concentrating. That affected my ability to work (intense legal job) but otherwise wasn't too bad. Hopefully he has a similarly easy time of it. Glad he's getting some relief from the cough.
  18. The report says the "new" nodules do not have uptake in excess of the background--IOW, there is nothing in the FDG to suggest they are cancerous. In fact, the report suggests these "new" nodules might be due to scarring or atelectasis (lung collapse). It sounds to me as if the surgeon is, as Tom suggested, wanting to be absolutely sure those other nodules are benign--especially given that your confirmed cancerous nodule also shows no uptake. I don't think any of us here are any better equipped to answer your questions than your doctors are. I don't know what else to suggest other than, as I said, a second opinion if you aren't satisfied with the answers your doctors are giving you. Have you asked them the same questions you're asking us? If what they are telling you isn't making sense, tell them you don't understand and ask them to explain it again. Sometimes the answer is simply, "We don't know." There are limits to what the testing can tell them (and you).
  19. No, you wouldn't necessarily have any symptoms. If the nodules are not blocking any of your airways and aren't pressing on nerves or anything, they could continue to grow/spread for a while before you would have any symptoms. You can always seek another opinion, though it may not speed things up any. You could do that while proceeding with the recommended testing where you are now. A second opinion is often useful. Even if it results in the same recommendation, it is reassurance that your providers are on the right track.
  20. I assume they didn't biopsy the new nodules back in August because they didn't know they were there--you said these just showed up on the PET-CT, right? After the biopsy was already done. Staging depends on whether either of the new nodules is cancerous. If one in the other lung is, then you would be Stage IV and treated with radiation and/or chemo/immunotherapy, unless you have a targetable mutation. The lingula is just a specific area of the left lung. Supposedly it resembles a tongue, which is why it's called that. I'm sorry, Minh, I know how frustrating this must be. It's important, though, to find out whether those other nodules are cancerous, too. If they are, surgery would not do you any good, so they want to find out what they're dealing with before you get any surgery. Did the doctor say how soon they could do the biopsy?
  21. LexieCat

    Keytruda

    That would be a question for the oncologist. Most of the time, Keytruda maintenance would be two years, though apparently there is some debate about continuing it longer.
  22. Here's how it was explained by my surgeon. He starts off with VATS. If some emergency situation occurs during surgery (e.g., uncontrolled bleeding; some unexpected finding) then he would switch to an open procedure. IOW, it's all planned to be VATS, but if the unexpected happens, he will do what he has to do. And he started off with a wedge and sent that out for examination to see if the nodule was cancerous--assuming it was, he would then remove the lobe. He explained to me that it's safest to remove the whole lobe if there is cancer--it's more likely to remove all of the cancer so it doesn't spread. Incidentally, there's also RATS--robotic assisted surgery. It's virtually identical to VATS, but they use a robot. My doc said which they do--VATS or RATS--was a matter of the surgeon's preference and the availability of the equipment. He said one of his colleagues loved using the robot, while he preferred hands-on. Everything I've read indicates one is as safe/effective as the other. Since you already have a biopsy-confirmed cancer (I did not), I doubt the surgeon needs to do a wedge resection first. I think ultimately, based on everything I've read, a lobectomy is more likely to be effective at removing all the cancer than a wedge resection is. I'm sure your family/friends will understand if you have to skip the host duties this year (another option to consider, if your guests are nearby and you're comfortable with the idea, would be to have others prepare the meal at your house and clean up after). And by Christmas you should have no difficulty hosting (though you might ask for help putting a 20-lb turkey in the oven).
  23. I don't know what having Thanksgiving and Christmas with family involves for you. If you are planning to travel or put together a holiday gathering for everybody, I'd say you probably wouldn't be up to it. But if you are just going to someone else's home and they do the major work, chances are you'd be fine. I was out to a concert and dinner with friends only a week or two after I got out of the hospital. And hospital stay for a VATS lobectomy is only 2-3 days, generally. The other thing is the further out you plan to have surgery, the less certainty there is about what the COVID situation will be--whether hospitals will be overcrowded, etc. Personally, I think I'd do it sooner rather than later, but it's something you should decide after discussing with your surgeon.
  24. Just to add to what Tom said, the nodule didn't necessarily "shrink" in size. CTs take images of a "slice" of your anatomy at a time. Depending on the angle of the machine or your body, nodules may appear slightly different in size from one scan to another. A biopsy is more reliable than a PET CT for diagnostic purposes.
  25. Great news--do you know what drugs he will be getting?
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