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LexieCat

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Everything posted by LexieCat

  1. 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!
  2. 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.
  3. 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.
  4. 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
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. Sounds VERY encouraging! You're off to a great start--I'll look forward to hearing your boring scan results, lol.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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.
  24. 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.
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