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Everything posted by LexieCat

  1. Hi, Brent, and welcome. The spiculated nodule is the one they seem most concerned about. I know that when my nodule (being followed after being seen a year before) grew and became spiculated, that was when the pulmonologist and surgeon thought it was suspicious enough to remove the lobe. Pathology showed it to be cancerous. If I were you I'd get a referral to a pulmonologist for a consult. They are the experts on lung nodules. It's a fairly small nodule and it may not be possible to biopsy. If not, a PET CT scan would probably provide more information. That's not something you'd go get on your own--they are VERY expensive and a doctor would have to order it. The other nodules may not be anything to worry about--most nodules aren't cancer, and they could very well be scar tissue from your bout with Covid. Try not to stress out too much over this. If it is cancer, you've caught it early. Lobectomy (surgery to remove the affected lobe) is a fairly simple surgery with a quick recovery time. I noticed almost no change in my breathing after the surgery.
  2. What Tom is talking about is having tissue samples sent out for molecular (aka genetic or biomarker) testing. That's what you need to ask about. Samples don't have to come from the primary tumor--they can take samples from the lymph nodes instead. Also, a liquid biopsy (blood analysis) can sometimes provide additional information. Be sure to run any/all supplements by the oncologist. For instance, my oncologist advised me to stop taking fish oil and to stop taking Vitamin C (though amount in a multivitamin is OK). There have been studies that suggest Vitamin C might encourage tumor growth. Your body still needs it, so you don't eliminate all of it, but large-dose supplements should be avoided.
  3. I didn't find the bronchoscopy to be too bad. Sore throat for a day or two from the breathing tube. You'll need to have someone drive you home (due to the anesthetic) but you should be released in just a few hours. Glad things are moving along for you.
  4. LexieCat

    Flu shot

    Got one of those today, since my sore arm from the Covid shot is all better--not so much as an ache, even if I bump it. Since I just turned 65, I got the high-dose flu vaccine. I got both pneumonia vaccines a couple of years ago. The only one I still lack is the Shingrix vaccine (I got the old shingles vaccine a couple of years ago). My doc says the antiviral I'm taking for the trial protects against shingles, so he recommended waiting to do that one until I'm done with the antiviral. I hear Shingrix can be sort of unpleasant, but based on what I hear about shingles, the vaccine is way preferable. So now I'm as prepared to face this fall/winter as I can be.
  5. I agree with Judy--I would never consider staying with a provider I didn't trust (unless forced to because of enrollment rules and in that case I'd switch at first opportunity). Your medical records all belong to you, so it shouldn't make any difference what your current status is. All scans and other info should be sent to the new provider, who can review everything and determine appropriate treatment. I respect (and agree with) your not getting into the details of your lawsuit--especially in an online forum. I'd just note that generally speaking, you are not going to recover anything unless you can prove actual damages. IOW, even if the doctor did not follow proper medical procedures, unless you can prove serious physical harm as a result, you're not likely to recover anything. Having practiced law (not medical malpractice) for close to 30 years and having filed one lawsuit (not medical malpractice) that lasted years and cost me around $30k in legal fees, with a puny settlement in the end, I'd think long and hard about whether it's worth it. Make sure you consult with an experienced, reputable med mal lawyer before you dive too far into this. Life with cancer is complicated enough.
  6. I'm sorry, Mona, that's it's so difficult for him--and for you. I suspect the bad reactions he's having are largely attributable to his other health problems. Everything gets more complicated. I hope his doctors can get a handle on his pain and the other side effects. I wish I had something to suggest. Sending positive thoughts to you both.
  7. Sounds VERY encouraging! You're off to a great start--I'll look forward to hearing your boring scan results, lol.
  8. No, I don't think anyone is planning to throw all of that at you--not at once, certainly. Those are all the available treatments that conceivably COULD be used, depending on what testing shows. Few patients experience all of those treatments. I had surgery originally, then chemo/immunotherapy (drugs), and most recently treatment in a clinical trial of a new immunotherapy (using my own immune system). If that doesn't work, I'll likely be in another clinical trial with more chemo or immunotherapy. I'm not a good candidate for radiation due to the location of my tumor and I can't use targeted therapy because I have no targetable mutations. What kind of treatment you get will depend on all the information gained from the testing. Best case would probably be surgery with adjuvant chemo. That wouldn't last too long and there's a good chance you could continue working. Believe me, your situation is far from hopeless. But you are going to have to wait for the testing to be done. Lung cancer is full of uncertainties. It's best to work on learning to live with that. It isn't easy, but we've all had to do it. Even when treatment eliminates evidence of disease, it's still possible for it to come back. I'm not saying that to scare you--lots of people are very successfully treated and have gone years and years cancer free. But it is a reality and no matter what you do, there are no guarantees. OTOH, there are no guarantees how long someone WITHOUT cancer will live. There are accidents, acute or chronic medical conditions, etc. I look at it as having a heads-up about something that is still treatable.
  9. Sounds pretty par for the course. I was diagnosed (this time--I had a lobectomy three years previously) with a bronchoscopy, along with a PET-CT and brain MRI. That took at least a couple of weeks (and I had to get the surgeon who did my lobectomy to move up the biopsy, which was originally scheduled a month down the line). I learned that my oncologist (who was new to me--my previous oncologist had moved to another state) saw no reason to do comprehensive molecular testing--he tested only for the most common mutations. So that led to a consult with an oncologist at another cancer center, who said the additional testing was absolutely appropriate. I switched doctors and consulted with a radiation oncologist to confirm that I wasn't a good candidate for radiation. Meantime, I had a port implanted and we proceeded with first-line chemo/immunotherapy (I had no targetable mutations). All told, it was a few weeks before I started treatment. I wouldn't worry too much. A few weeks is unlikely to make any difference, but getting the test results to determine the right treatment is critical.
  10. FWIW, there's no requirement that you PROVE you're immunocompromised. When I filled out the appointment questionnaire and it asked if I were immunocompromised, I answered "I don't know;" I wasn't questioned any further (if I had been, I would have taken off my baseball cap covering my bald head). If asked to elaborate, I'd say I was on active treatment when I got the first two shots and I had this chemo that made my hair fall out only a few weeks ago and tell them their guess is as good as mine, but my doctor advised me to have the third shot. I don't think the techs giving the shots have enough medical knowledge to overrule it.
  11. I'd suggest waiting to apply for SSDI till you have a diagnosis. If you are approved, the waiting period should date back to the earliest date you were disabled. (SSDI has a six-month waiting period from the time you were disabled till you are eligible for benefits.) You can't apply for medicare till you've been on SSDI for two years. Assuming your employer is large enough you should qualify for COBRA for 18 months. COBRA can be very expensive, though--you might want to look into other healthcare plans under the Affordable Care Act. If your income is very low, you could apply for Medicaid. Also, as I think I mentioned before, most hospitals have financial assistance available. I had two former partners who lacked health insurance receive free care for serious medical conditions under the hospital's "charity care" program. With any luck, you will have early stage cancer that is easily treatable and you can remain employed. It's smart to think ahead, but you don't need to assume you won't be able to work.
  12. So far, so good. My arm is very sore--feels like I got punched, hard--but no chills or other symptoms. I'm pretty tired, but part of that is because I didn't sleep that well. I kept waking up trying to get comfortable. My bet is that the pain will be gone by tomorrow.
  13. First of all, if you do have Stage I cancer (a or b), you might only need short-term disability. I was out with friends for dinner and a concert two weeks after my lobectomy and back at work about a week later. You might not need any further treatment, depending on what they find during surgery. Some Stage I patients get adjuvant chemo, but it's often not that debilitating. The only way you can qualify for Medicare before age 65 is if you received Social Security Disability (SSDI)--but you qualify only after you've been on disability for two years. Stage IV patients automatically qualify for SSDI; lesser stages might require a lot of documentation, appeals, etc. I would STRONGLY suggest you not get ahead of yourself. It's frustrating to wait, but you really have to deal with all of this one step at a time. Since you're being treated at MD Anderson, it's likely a tumor sample will be sent out for biomarker testithng--ask to be sure they do that. Biomarker testing will show whether your cancer has a mutation that would allow targeted therapy (i.e., a pill) in lieu of chemo. The good news is that new treatments are being developed every day. I'm Stage IV, had my cancer progress after chemo/immunotherapy, and I was recently treated in a clinical trial. I'm hoping that will have a great outcome, but if it doesn't, there are tons of other trials out there. So do your best to keep cool. We have a lot of long-term survivors here on the forum. You are going through the hardest part right now. You will start to feel better when you have all the testing done and a treatment plan in place. Just to save wear and tear on you, I'd suggest seeing if you can have as much testing done locally as you can. And if you wind up getting chemo, you could probably have your infusions locally and just see your MD Anderson docs when it's time for a more thorough exam with scans.
  14. FYI, the doctor is not going to be able to predict how long he might live. Every person and cancer is different and new treatments are coming down the pike all the time. We have people here given a matter of months and here they are years later. It's next to impossible to predict how well any given patient will respond to treatment, and many of us have to try a number of different lines of treatment before we hit on the one that works long-term. I DO think anyone with a serious health condition should have an updated will or any other appropriate documents, including a living will (or advance health care directive). Beyond making those essential moves, though, most of us do best by planning on sticking around and enjoying life. NONE of us, with or without cancer knows how long we have. And BTW, I'm all for humor as a coping mechanism. It's my personal go-to.
  15. Hi, there, and welcome. It's really not possible to definitively stage lung cancer based on a biopsy alone. I believe what they told you was their best guess based on the information available. I assume you will be having a lobectomy. When they do the lobectomy, the surgeon will most likely sample more lymph nodes. Having just two lymph nodes examined doesn't preclude the possibility of metastasis. The PET CT is more likely to show whether there has been any spread elsewhere in your body. As for the scheduling, I'm not sure why it wasn't done sooner, but it really shouldn't make any difference, as long as it's done before the surgery. You might want to see if you can have the PET CT scan done locally and have it sent to MD Anderson. Almost any radiology department can do the scan.
  16. The CVS I normally go to apparently has only Pfizer. I had to go to the one inside Target. I was appalled at the number of people in Target unmasked. Then I stopped for milk at the Wawa (convenience store) and MORE people without masks. And a ton of the people with masks had them hanging under their noses. I swear, I haven't been inside anyplace with that many unmasked people since this all started. Of course, most of my indoor shopping has been at a store that insists on masking. But WHY, right when numbers of cases are climbing, are more people maskless than before?? Makes me feel like I did the right thing getting the booster now.
  17. Shot #3 done--went to CVS and it took all of 20 minutes, including 15-minute post-shot wait. The pharmacist persuaded me to wait a few days for the flu shot--even though the CDC is saying no problem, we are just hitting flu season and so not a lot of experience with the two shots together. No biggie--the flu shot can wait till next week.
  18. I decided to go ahead and get my third shot now, just over two weeks from the concert I'm planning to attend. I'm not positive whether I qualify as currently immunocompromised--I don't think I am, as of this moment, but I definitely was when I had the first two. My reasoning is if that status prevented the vaccines from reaching maximum effectiveness, then I probably need the booster. And I had my whole immune system messed with only a few weeks ago, so I don't feel like I'm gaming the system. Also, according to the CVS website, the CDC has determined it's safe to get the flu shot at the same time, so I'm getting that, too. The other thing is that my next scans will be on or about 10/12, so hopefully any swelling of lymph nodes will be gone by then. Hopefully side effects won't be too bad. I felt pretty lousy the day after shot #2, but I don't expect any bad effects to last more than a day or so.
  19. Great article, Judy, and I listened to the podcast, too. You were very articulate and I'm sure it will be helpful to others who had similar exposure. Thanks for sharing it!
  20. Jeng, you know your husband better than we do (obviously) but the PET CT is not a diagnosis of cancer. Don't get me wrong--everything points to this being cancer, but you said he prefers not to dwell on it and I can tell you that my own attempts to understand radiology and lab reports have often steered me wrong. The doctors are the experts, so I would suggest letting them explain to both of you what the scans and other test results mean at his next doctor visit. Maybe make a list of questions you'd like answered to bring with you to the visit. Another thing I do is ask the doctors if it's OK to record the visit. I have an app on my iPhone called Just Record, and I tap a button and it records till you turn it off. That way, I'm not trying to write things down and missing other important info, but I'll have something to refer back to if there is something I don't remember. As I said, just a suggestion.
  21. Wow--great news!! The thing is, there are pretty strict protocols about how long they can give carboplatin. There might not be an option to give it longer than four cycles. The 3.4 uptake doesn't necessarily mean there is active cancer, I don't think. You're doing great--keep us posted on the next steps. And don't worry about going on maintenance too soon. For a lot of people the maintenance eliminates remaining cancer. I just got an email that I have new test results in my portal. I'm assuming that might be my scan (though it could also be lab results from blood draw yesterday). But my appointment with the doc is in 45 minutes and I'd rather wait and have him interpret the scan and report. If I'd looked at the last one, myself, I wouldn't have grasped the significance. Better not to let my imagination run away with me!
  22. Hi, Kathy, and welcome. I'm guessing that how your dad makes out with this treatment depends a lot on his other lung conditions. Chemo/radiation is a standard treatment for those who aren't candidates for surgery. Do you know the exact type of nsclc (most are adenocarcinoma or squamous cell)? Did the doctor say what chemo drugs he would receive? Many of us have been on the same drugs with different effects. Some people have severe side effects and have to change treatments; others have relatively mild side effects. I mostly suffered from fatigue (especially the first few days after an infusion) and a bit of "brain fog." There are medications to manage many side effects so they are tolerable. I've never had radiation but many people who do complain of fatigue, loss of appetite, sometimes difficulty swallowing (especially if the radiation hits the esophagus). Most side effects disappear after treatment. Lungevity has some great educational materials, including information about different types of treatment: https://www.lungevity.org/for-patients-caregivers.
  23. A couple of things. Most drug companies have financial assistance programs to provide medications to those who can't afford it. Second, many hospitals also have programs to help out with financial issues--ask to speak with the hospital's social worker. Also, depending on the stage, there is Social Security Disability (SSDI). Those diagnosed with Stage IV disease automatically qualify and it takes only a couple of weeks to be approved. The other good thing about SSDI is that after two years you automatically qualify for Medicare, regardless of age. I'm on SSDI and my benefit is approximately what I would have gotten had I taken SS at full retirement age).
  24. Hi, Stephen, and welcome. I had a tiny nodule removed via lobectomy, Stage 1b. It was b, rather than a, because the pathologist believed it had invaded the pleural lining; my surgeon disagreed. I, too, was deemed "borderline" and opted to skip the adjuvant chemo. Three years later to the month I was diagnosed with Stage IV cancer. Despite scans every six months, I developed cancer in the other lung and a PET CT showed metastasis to a bone. Nobody can tell me whether this was a spread from the original cancer or whether it was a completely separate one, and I'll never know whether having adjuvant chemo would have helped. My Stage IV cancer did progress after chemo for that--I'm doing well now after treatment in a clinical trial. If I had it to do over again, knowing what I know now, I think I would have opted for the chemo. Good luck in whatever you decide. Incidentally, was a sample of your tumor sent out for molecular/genetic testing? If not, I'd definitely push for that. It might give you other options down the road if you should have a recurrence.
  25. The first scan (I think about two months after starting maintenance) was equivocal. The radiologist thought it showed progression; my oncologist wasn't convinced and wanted me to continue on maintenance (my then-oncologist is a highly regarded expert--I trust his judgment). The next scan, about two months later, left no doubt--the cancer was definitely progressing. At that point, my doctor suggested two clinical trials they were doing at Penn (where I get my oncology treatment). I started the paperwork for one of those, but then I read about a trial here on the forums that sounded super interesting. It's called TIL therapy (stands for tumor-infiltrating lymphocytes). First they take a sample of tumor tissue (my surgeon could not access the main tumor so the sample was taken from my "hot" lymph nodes) and send it off to a lab. There, they extract the lymphocytes that have already invaded the tumor (so they already recognize the tumor as a bad guy to kill) and multiply them till they are in the billions. That takes about three weeks. Then I was admitted to the hospital and given a 5-day course of intense chemo (to deplete my lymphocytes to make room for the new ones), followed by an infusion of the new and improved lymphocytes, followed by several doses of IL-2, a biologic that revs up the immune system. All told, I was in the hospital for three weeks. This trial was at the hospital where I had my lobectomy four years ago, before the recurrence that made me Stage IV. The doctor told me not to expect too much from the first scan, but mine was terrific--the tumor shrank dramatically. The best thing about this treatment is that if it works, that's it--no more cancer treatments. That's the main reason I chose this trial over the others--which involved ongoing treatment with new drugs. There are several ways to find clinical trials. Your oncologist might know of some. Lungevity provides a matching service. And Go2 Foundation can also help find suitable trials. Or you can do your own searches at clinicaltrials.gov. I read about my trial here on the forums, and it happened to be local (happily for me). Some of these trials have sites all over the country. Others are smaller and at fewer locations. Some trial sponsors will provide help with travel and lodging if it's far away. So you're a ways off from having to look into that (although there are also trials for newly diagnosed who have not been treated), but it's good to have in the back of your mind the fact that there are options--often, many of them. My oncologist said there were literally hundreds of trials that i might qualify for, having progressed after first-line therapy. Incidentally, I have plain-vanilla adenocarcinoma with no targetable mutations.
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