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Everything posted by LexieCat

  1. The vast majority of nodules aren't cancer. I have a number of nodules that have hung around for years without change. Also, the same nodules appear on some scans and not others. The doctors explained to me that with very small nodules, the angle of the CT can determine whether they are visible or not. Bottom line is that it's smart to keep an eye on any nodules (which is why Tom was suggesting regular--usually annual--CT scans). But what you're describing right now doesn't sound alarming to me. If you're concerned, I'd suggest a consult with a pulmonologist--they are the experts in lung nodules.
  2. The drug company (AstraZeneca), like many drug companies, has programs providing financial assistance to patients. Here's a link to their page for patient financial assistance: https://www.myaccess360.com/patient/tagrisso-osimertinib/patient-affordability.html
  3. Just an update for anyone stumbling across this thread--first scan was terrific. My doc had told me not to expect too much from first scan, but he was over the moon excited about it. Hopefully the response continues to whittle down the tumors.
  4. Hi, Mona, and welcome. Lots of us here have been on the "triplet" of Carboplatin, Alimta, and Keytruda. Most of us had relatively few, and mostly mild, side effects. I had a bit of fatigue (which typically hit hard around day four of each cycle, then let up), along with a bit of "brain fog" (which wasn't too bad, but it did interfere with my mentally taxing job). I also lack any targetable mutations. I responded GREAT to the main chemo/immunotherapy, but after I went on maintenance therapy (Alimta and Keytruda alone), my cancer started to progress. I joined a clinical trial then for a treatment called TIL therapy (which I know they've done at Moffitt), and so far that seems to be doing the trick. My first scans were terrific and this treatment is designed to be a one-time treatment, so we shall see. The bottom line, though, is that you want to have him treated at a top medical center so his other medical issues can be appropriately treated. You also might want to consult with a radiation oncologist to see if radiation might be appropriate for the bone mets--the radiation can often provide fast pain relief. Precision radiation might be available as palliative treatment, even if it can't be used on the tumor(s) in the chest.
  5. I just ran across this nice 5-part (the parts are short) presentation on the use of TIL therapy in treating NSCLC. The presenter is Dr. Schoenfeld at Memorial Sloan Kettering: https://www.curetoday.com/view/treatment-options-in-nsclc-after-first-line-therapy.
  6. I'm pretty sure this isn't correct. Every article I've read says that vaccine-based immunity is stronger. Here's a recent CDC page discussing two recent studies: https://www.aha.org/news/headline/2021-08-06-cdc-study-confirms-vaccinations-greater-protection-against-covid-19. I'll check with my doc on my trial as to whether a booster is advisable, and act accordingly. I'm avoiding indoor spaces with unmasked people--had to sell a concert ticket last week because the venue wasn't requiring masks.
  7. As far as I know, taking medication that suppresses the immune system doesn't necessarily preclude immunotherapy. CTs are standard lung imaging tests; PET CTs are much more specific (and expensive), but helpful for staging and identifying any other areas of metastasis--not all of which will show up on a regular CT scan. It's great that your dad is feeling better right now and has a positive attitude. That will help him throughout his course of treatment, whatever that may be.
  8. Hi there, and welcome. Sorry about your dad's diagnosis. Lots of people have brain mets, though, and the fact that he has only two lung nodules and no evidence of other mets are positives. Brain mets are often very treatable with radiation. Do you know the size/location of the nodules in his lungs? Chances are there will be more testing before it's appropriate to start a treatment plan. Has he had a PET-CT? You also want to be sure samples of his tumor are sent out for molecular testing. That will show whether he's likely to respond to some form of targeted treatment (usually a pill) rather than chemo. Immunotherapy is also often highly effective. I understand being scared, but lung cancer isn't what it used to be. There are quite a few long-term survivors here. And two weeks before starting treatment is absolutely normal. Many people require several weeks of testing before an appropriate treatment can be settled on. It's frustrating, for sure, but very important that the treatment be appropriate for his exact type of cancer.
  9. I get a pension from my first career (government job). After I retired I started a second career--I quit working when chemo made it too difficult to continue. I applied for and received SSDI as well as employer-paid long-term disability (which will continue only till next December, when I reach my full retirement age). Whether it would benefit you to apply for SSDI now probably depends on your current age. If you are already at your full retirement age, there might not be any benefit.
  10. Hi, Pam, and welcome. Ditto what Tom said. Just one thing--you posted this in the SCLC forum, not one of the NSCLC or general forums. SCLC (small cell lung cancer) is much more aggressive and harder to treat than the NSCLC cancer you said your brother has. Not saying this to scold, but rather to get you pointed in the direction of the most helpful information--and also to help you avoid some of the scarier stuff about SCLC.
  11. Hi, Linda, and welcome! What can you tell us about your husband's cancer (type/stage; what tests have been done; etc.)? That information will help us provide the most helpful assistance. Glad you found us--this is a great place for information and support.
  12. LexieCat


    Hi, Roxy, and welcome. Glad you found us! Can you tell us a bit more about your cancer--what type, what kind of tests you've had done? That will help us get you pointed in the right direction for the most helpful information. What kind of treatment is being discussed so far?
  13. Hi, Gina, I know very little about non-Hodgkins lymphoma, but I'm glad to hear you've finally gotten a proper diagnosis. That is a HUGE step toward getting the right treatment and getting your life back. Best of luck--you have the right attitude to put yourself in the best possible position to approach treatment and recovery!
  14. 5 mm is VERY small. You do want to follow up on it, but even if it's a recurrence/progression, you are catching it early. And there is a good chance it's nothing to worry about. Try to relax--you can't do anything about it till there is more information, so no good in getting ahead of yourself.
  15. I just read about this trial, which is actively recruiting at numerous locations all over the country. The enrollment criteria are a bit different from the trial I'm in, but it looks like even more NSCLC patients might be eligible. Worth checking out, if your cancer has progressed: https://clinicaltrials.gov/ct2/show/NCT03645928.
  16. LexieCat

    CBC results

    Sounds good. Changes in blood work can mean SOOO many things. For laypeople like us, I think it's like trying to read tea leaves.
  17. Anyone interested in learning more about this trial, please feel free to PM me. I just got out of the hospital after going through it. It's a tough trial, for sure, but fascinating and I have a good feeling about its success (won't have a scan till the end of the month).
  18. Hi there, and welcome. I suggest you start a new thread (click here and then click the “start new topic” orange button at top of the page. Tell us about why you’re here and what kind of help you’re looking for. Glad you found us!
  19. X-rays are lousy for imaging for something like lung cancer. It may show that there’s something there, but a CT will give a much better image, more accurate sizing. If you don’t have a pulmonologist, I’d connect with one pronto to interpret your CT scans and make any further referrals for testing, oncology, or surgery. Lung cancer ain’t what it used to be. We have people on this forum 15-20 years out from an advanced cancer diagnosis. But for the moment, you don’t need to assume you have cancer based on an X-ray. And even if it appears to be cancer, you will have lots of testing to determine the appropriate course of treatment. Keep us posted. Glad you found us. This is a great place for information and support.
  20. @AleHondaaYou might want to check that out!
  21. Hi there, and sorry to hear about your dad’s diagnosis. I have no idea how anyone can suspect SCLC without biopsy results (unless maybe they looked at them in the lab immediately after the bronchoscopy). I’m not familiar with either of the hospitals you mentioned, and we really can’t give recommendations here, but if it were I, I’d try to find one that is an accredited Comprehensive Cancer Center. You can start searching here: https://www.cancer.gov
  22. Voice problems are not inevitable after mediastinoscopy. I didn’t have that problem at all. I’m sorry to hear you’re dealing with this. I suspect Tom is right and it has to do with the intubation rather than the procedure itself.
  23. I is. Currently being carpetbombed with chemo.
  24. ENT= Ear, Nose & Throat specialist. A pulmonologist is the one to see about lung nodules.
  25. Nope, none. I've never had any symptoms of lung cancer. Recently I've noticed a mild cough and less lung capacity than I had, but it's a year later (from when I was diagnosed as Stage IV) at this point.
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