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Everything posted by LexieCat

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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/
  6. 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).
  7. 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.)
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. Hi, Banna, I made it three years after my lobectomy before it came back. I assume you've been having scans every few months, right? Is this a nodule that's been there all along and is now 1 mm larger, or did it recently appear? 1 mm is pretty small--I think that amount of change could be due to the angle of the imaging. A PET CT will tell you a lot more. When my recurrence first appeared and they thought it was confined to the one lobe, my then-oncologist said it was possible I'd be a candidate for CyberKnife surgery (precision radiation). Unfortunately, the PET CT showed it had spread to a number of lymph nodes and a spot on my sacrum, making me Stage IV, so surgery was out. You'll know a lot more after the PET CT. Hang in there--no matter what, there are lots of treatment options.
  14. Hi, Cricket, and welcome! Well, for a 2 cm nodule, I would THINK (unless they found cancerous lymph nodes during biopsy or during a PET scan, that you would be a candidate for surgery. Did anyone talk to you about surgery? These days, VATS surgery to remove a lobe (lobectomy is usually the standard treatment for removing lung cancer surgically) is really a very simple procedure from the patient's point of view. Three tiny incisions in your side and back, and that's it. Usually 2-3 days in the hospital. I was out to dinner and a concert with friends a week after getting out of the hospital. What exact type of lung cancer did the biopsy show? There are several different types of non-small call lung cancer--adenocarcinoma, squamous cell, plus large cell and a few rarer types. You will want to be sure they send your tissue out for molecular testing. Even if you don't need any further treatment right now other than surgery, lung cancer does have a nasty habit of coming back. If the testing shows you have specific mutations, you might be eligible for targeted therapy (a pill) instead of chemo. Sorry to hear the kiddo and doggie have medical issues to deal with right now, but chances are any treatment for you will be a few weeks off. Glad you found us--this is a great place for information and support.
  15. I can't get any sound--it's claiming I have no audio output device (YouTube sound is just fine), then it keeps saying the meeting has timed out. I think I'll have to try to get the recordings later--this is just too frustrating to deal with.
  16. "Alternative" therapies imply something that is used in place of treatments approved by medical science. Some people integrate other kinds of treatments/therapies into their regular cancer treatment. Anything involving supplements should definitely be run by your oncologist--some actually work against cancer treatment. For instance, my oncologist told me to cut out fish oil and Vitamin C (which is suspected to enhance tumor growth). As far as vegan/vegetarian diets go, whatever you like, but I wouldn't count on its doing anything to fight cancer. Eat healthy, be sure you are getting enough calories, and you should be good in the diet department.
  17. Hi, Tunnel and welcome! Is your wife KarenR? I see you both posted for the first time today from Malden, MA. Glad you're here.
  18. Me, neither. It's one of those things that seems utterly unnecessary to actually name.
  19. Hi, Karen, and welcome. What lit up on your pet scan? Virtually ALL lung cancers are treatable--some types are harder to treat than others (e.g., small cell), but there are quite a few people here many years out from an advanced cancer, with no evidence of disease. You want to be sure your tissue samples are sent out for molecular testing. That will show whether you have a mutation that might be treatable with a pill rather than chemo or radiation. I know it's frustrating to be having all these tests and waiting for the results, but it's critical that the docs have as much info as possible before launching into a treatment plan. Glad you found us!
  20. LOL, not bad for an engineer!
  21. I found it helpful (I was on the same triplet) to keep a running calendar/diary of how I felt every day. I had relatively mild side effects--for me, the fatigue hit (and hit hard) around day 4 of each cycle. I'd feel wiped out for 2-3 days and then feel much better. Usually that's somewhat predictive of how each cycle will go. I also had mild edema (swollen feet/ankles) for the first few days after infusion but that generally went away quickly. I also had some "brain fog"--difficulty concentrating/ remembering stuff--but not too debilitating.
  22. Hey, Diane, good to hear from you, and glad to hear you are doing OK. You'll never stop missing him, but I was eventually able to get to a point after losing my mom where the happy memories overcame much of the pain. Your continued input here is invaluable--when there are relatively few long-term survivors, those who have lost loved ones can help keep their voices alive to help others.
  23. Here's a recent post from Rower Michelle on that particular book: https://forums.lungevity.org/topic/44842-durvalumab/?do=findComment&comment=441536 I think an overall healthy diet is always important when dealing with any serious disease, but I'm highly skeptical of claims that particular diets do much in the way of affecting the outcome.
  24. Looks to me like both of those trials require progression after first-line therapy. Glad she's home and feeling better.
  25. Hi, D, and welcome! Glad you've come out of "lurk mode"--this is, as you've seen, a great group and you'll find a lot of information and support here (and, believe it or not, a few laughs along the way). What kind of treatment(s) have you had and how are you doing now? I'm glad to hear you're adjusting and feeling more hopeful. There can be a lot of ups and downs along the way, even for long-term survivors. Few get there without a few detours here and there. Glad to have you aboard.
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