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Everything posted by LexieCat

  1. Babs, I don't think you need a doctor's referral. You should be able to make the call yourself to set up an appointment to be evaluated for eligibility. That's what I did. I did have to wrangle a research nurse who was incorrectly interpreting my oncologist's notes and telling me I was ineligible for that reason, but we got that straightened out within a day and it was just another day or two before I saw the doctor running the study.
  2. Hi, Karen, . Every cancer is different in terms of type and location, and every patient is different, too. Have they sent your tissue out for biomarker/molecular testing? Those might show whether you have one of several mutations that might respond to targeted therapy (a pill, rather than chemo). Most people with Stage IIIb aren't candidates for surgery. Whether you can get radiation will depend on the size/location of the tumor, among other things. I was strongly discouraged from radiation due to the location of my tumor--more than one doctor, including a radiation oncologist, told me the risk of severe damage to my esophagus was great enough that it probably wasn't worth the risk. I believe they have to make lab results available within a certain amount of time, but I try to time my procedures with my doctors so I don't see the results before they do. It's easy to freak out unnecessarily unless someone is there to explain what the test results mean.
  3. Thanks, Judy, Just downloaded it for my Kindle app on my iPad. I remember when I was going through my initial diagnosis back in 2017 (lobectomy), I read "Emperor of All Maladies." It's all about cancer research and treatment through the ages, and it's an absolute page-turner (they made it into a PBS miniseries, too). I mentioned it to my surgeon, who was also a huge fan of the book. Every challenge I have faced in my life has been helped by the reading I've done. When I get bad news (or puzzling or concerning news or circumstances in my life), books are my best friends. I guess it's my way of regaining a modicum of control--over myself and my attitude, even if I can't change the facts.
  4. Hi, Nav, and welcome. Yep, normal procedure. It's important to get all the diagnostic testing done before any treatment begins, because the wrong treatment can be not only ineffective, but actually harmful. It sounds as if they are being appropriately thorough. You will know more when they are able to identify the exact type of lung cancer he has. You want to be sure they send out his tissue samples for molecular testing--it sounds like that's what they are doing but you want to make sure. If he has one of a few specific mutations, his cancer might be treatable with targeted therapy (a pill) rather than chemo. 10 cm IS pretty fast to have developed in 3 months. Hopefully they can get a handle on a treatment that will get this under control. Glad you found us--this is a great place for information and support.
  5. I'll keep my fingers crossed for you!
  6. Hoping you all get through this without too much misery. How long do folks typically stay on this course of treatment?
  7. Hi, Stephanie, and welcome. Pembrolizumab IS Keytruda. Did you mean maybe Pemetrexed (Alimta) that she's on now (with the Carboplatin)? Has she had a PET-CT and brain MRI? Those are two of the other tests that are pretty standard at the time of early diagnosis/staging. If she has had those tests, is there any sign of mets anywhere else? Glad you found us--this is a great place for information and support.
  8. I don't know much about either small cell or PCI, but I do know small cell is a VERY tough cancer to treat and MSK is one of the best cancer centers in the world. I'm sure the VA doc is terrific, but MSK is the way to go with something like small cell, I think. You might want to get another opinion from a similarly highly-rated cancer center in the NYC area--fortunately, there are several. Good luck--glad to hear he's been doing so well, so far!
  9. Oh, and incidentally, I live alone. My cousin came out to give me a hand, but I really didn't need anyone to take care of me. The one thing I needed a little help with was dressing change, but only for the first few days--after that, you don't need to keep it bandaged.
  10. Hi, Sarah, and welcome. Assuming she has VATS surgery, it will be pretty easy going, from her point of view. I had my lobectomy in 2017--it was three tiny incisions on my back and side and that's it. My C-section hurt worse, and longer, than my lobectomy. Most people are in the hospital only 2-3 days, barring any complications. I was out with friends to dinner and a concert 1-2 weeks after getting out of the hospital. I needed the heavy-duty pain meds for only a couple of days and then ibuprofen was enough. It's important that she do her breathing exercises--they will make her cough, but that's encouraged, to clear her lungs. She'll also find it more comfortable for the first 2-3 weeks or so to sleep on a wedge pillow--it's easier to sleep if your upper body is elevated. One of our members, Lou, put together a list of tips and tricks for surgery: https://forums.lungevity.org/topic/47249-thoracic-surgery-tips-and-tricks/
  11. Hi, and welcome from me, too. I'd like to second Bridget's suggestion of finding a palliative care doctor to relieve some of his symptoms related to treatment. The oncologists are concentrating on fighting the cancer; palliative care focuses on comfort and pain relief.
  12. Hokey smokes. Stories like this make me realize how lucky I've been in the treatment department. I've tolerated the (rather tolerable) treatments I've had so far pretty well. We'll see how I make out when they bring out the BIG GUNS in a couple of weeks. For that, fortunately, I'll already be in the hospital--either on the oncology ward or in ICU. But, as I keep reminding myself, I can put up with anything for a couple of weeks. So glad to hear you're doing so well now, Wyde!
  13. There are many problems that could cause your symptoms--have them checked out but no need to assume the worst. They aren't necessarily related.
  14. Lung cancer does not tend to metastasize to the bowel/intestine, nor to the prostate. There are certain places it tends to go--to the bone, liver, brain, adrenal glands, and a few other places. But I've never heard of a lung metastasis to the intestine or prostate. Six mm is TINY--it would be very, very unusual for a nodule that size--even if it's cancer--to metastasize to the extent where it could be seen or cause symptoms. The vast majority of lung nodules are benign. I can't say what's going on with your intestines and prostate, but as far as the lung nodule is concerned, re-scanning in six months is standard procedure and reasonable.
  15. Wyde, I'd check with someone from Social Security on this. It looks to me like the only thing you're REQUIRED to take is Part A. If your private insurance is completely job-based, then I think you won't pay a penalty if you later want Part B. The main reason I'm forced to take Medicare is that my retirement-plan-paid insurance requires it. But if your private insurance is truly private (and they don't require you to take Medicare when you're eligible), it seems to me you should be able to waive Part B and Part D, in favor of your private insurance. Sounds like it's certainly worth asking about.
  16. Agree with Michelle. Incidentally, I believe the term is lymphangitis--it describes inflammation of the lymphatic system, which might or might not be related to cancer.
  17. Hi, Gray, and welcome. I'm sorry about your aunt's diagnosis, but this is a far from hopeless situation. You will know more when the tests are done, but I suspect, based on the size of the primary tumor, she's most likely Stage III or IV. It's important to know what type of nsclc she has (adenocarcinoma, squamous, large cell, etc.), and her treatment team should send out samples for molecular testing--for that, she might need a biopsy, even if they were able to ID the cancer from the fluid. Nobody wants to be dealing with lung cancer, obviously, but it isn't the hopeless situation it used to be. There are people on this forum 15-20 years out from an advanced cancer diagnosis. More and more, it has become possible for many people to treat their cancer like any other serious chronic disease. Please try not to treat her like she's checking out anytime soon--she could be around for years to come. I'm sure she would appreciate your concern, but try to encourage her to stay positive. There are many great new treatments out there and more being developed every day.
  18. Hi, Sarah, and welcome. I'd suggest starting a new thread in the newcomers' forum--this thread is from 2007. In any event, I found my lobectomy via VATS one of the simplest surgeries I've ever had. Three tiny incisions and that's it. There is some pain, but I think I needed the heavy-duty pain meds for only a couple of days and then ibuprofen was plenty. She will cough a lot, which is encouraged because it helps clear the lungs. A recliner would be comfy to sleep in (unless, like me, you have cats that will climb all over you if you try). What I used (and lots of other people used, too) was a wedge pillow. It does help you sleep if your upper body can be a bit elevated. She should come through this with no problem. I was out with friends for dinner and a concert about a week after getting out of the hospital. One of our members, Lou, created a list of tips and tricks for recovery from lung surgery: https://forums.lungevity.org/topic/47249-thoracic-surgery-tips-and-tricks/
  19. Oh, I see you found our new forum for MET! Just curious, where do you get your treatment, Wyde? I'm right across the river and have been treated since last summer at Penn (though this trial I'm doing is at MD Anderson--Cooper in Camden).
  20. No apologies necessary--we're just really glad to hear you're doing well now. Welcome back, and please stick around. We just added a MET forum to our Mutations section, and your input would be valuable to others. Unfortunately, I have no mutations, but I'm starting a very interesting clinical trial of a new immunotherapy. (I had progression after an initially good response to chemo plus Keytruda.)
  21. Claudia has a great suggestion, there--recording the doctor visits. I think it's always best to ask permission before you do that--no one should refuse, but it helps build trust. Also, in SOME jurisdictions, recording someone without their knowledge is illegal. Ask first, and you'll be in good shape either way.
  22. That's the exact same treatment I, and many others here, have had. I didn't have to change a thing about my diet. The only drug in that bunch that caused any nausea at all for me was the carboplatin, and once that was discontinued after four rounds, I didn't need any of the anti nausea meds. The other thing to be careful of is that the anti nausea meds can cause severe constipation if you take them on a regular basis. I was told to take them ONLY if I started to feel queasy (but not to wait till I was throwing up), and if I had to take it more than a couple of times to take some Miralax to stave off constipation. I never lost my appetite--in fact, I gained weight the whole time I was on treatment. Hopefully your MIL will have a similarly easy time of it.
  23. Hi, John, and welcome! Sounds like you're doing great! What kind of nsclc do you have and what kind of treatment have you been on? Glad you found us--this is a great place for information and support.
  24. That's kinda similar to one of the other trials I was considering--it involved injecting a drug contained in an adenovirus shell into the tumor.
  25. I think it's definitely worth being treated at one of the cancer centers--particularly if it's a NIC Comprehensive Cancer Center. Most of those are affiliated with universities, do research, and are familiar with the latest cancer treatments. Sixty miles isn't all that far. I'd suggest asking for copies of your scans (they can put them on a CD for you), the scan reports, and your biopsy report and get a consult with a doc from one of the cancer centers. I'd keep the appointment for the PET CT--you don't want to postpone that too far and you'll want to have that done no matter where you're treated. My own treatment has bounced between two different healthcare systems. My local hospital has a cancer center affiliated with MD Anderson. I had my lobectomy and post-surgery scans there. When the cancer returned in my other lung, three years later, I was treated with chemo by an oncologist at U. Penn., which is a highly rated Comprehensive Cancer Center. After an initially good response, the cancer started to progress so I'm now being treated in a clinical trial back at the cancer center where I started (which is where this particular trial is located). I've found it quite easy to have records sent over (or to carry them, myself) from one place to another, depending on who I need to see.
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