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Everything posted by LexieCat

  1. 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.
  2. 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.
  3. 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.
  4. 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?
  5. 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!
  6. 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.
  7. 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.
  8. 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.
  9. 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).
  10. 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!
  11. 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.
  12. @AleHondaaYou might want to check that out!
  13. 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
  14. 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.
  15. I is. Currently being carpetbombed with chemo.
  16. ENT= Ear, Nose & Throat specialist. A pulmonologist is the one to see about lung nodules.
  17. 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.
  18. I agree with Tom. They are concerning, but seem to be concentrated in the one lobe. Lobectomy is relatively simple surgery, and if these do turn out to be cancer, it might be easy to treat. One step at a time.
  19. We really can't make recommendations, and I doubt anyone here has any knowledge or experience with treatment for this particular type of cancer. I'd suggest contacting the National Cancer Institute--they might be able to point you in the right direction: https://www.cancer.gov/contact Incidentally, I'd crop that photo if I were you--it has your dad's personal info on it.
  20. I'm not sure how helpful we can be in terms of his treatment--I've never run across anyone on these forums with a glomus tumor--as I said, I don't think it's technically lung cancer, even though he has a mass there. I think you're going to have to talk to the oncologist about it.
  21. Here's a VERY long thread on Durvalumab. I haven't taken it, either. https://forums.lungevity.org/topic/44842-durvalumab/ I DID have four rounds of Carboplatin and Alimta, along with Keytruda. I had very few side effects, which were pretty tolerable. I did get hit with fatigue; any nausea was easily managed with the anti-nausea meds (I recommend you take them ONLY when you start to feel queasy--I took them regularly the first time and had the worst, most painful constipation in my life); and brain fog that bothered me only while I was working. I had a legal job that required a lot of complex analysis and just couldn't keep up with it. Sounds like they are planning pretty standard treatment for you. I didn't have radiation--the location of the tumor was such that the docs felt it would cause too much damage to my esophagus.
  22. I'm pretty sure that's not what's considered lung cancer, though there are rare instances when it appears in the lung. I looked over your early posts and noted you said his biopsy showed "malignant focal spindle cell of lung." I had to look that up, too, as it's very rare. Maybe that's why the consult with Mayo clinic. Where did you read/hear about "glomus tumor"? Has someone diagnosed him with that?
  23. No other mets is great news! Keep us posted--really glad to hear she's having a good response so far.
  24. I'm not sure I've heard of adding two immunotherapy drugs (outside of a clinical trial), but I could be wrong. I'm certainly no expert. Can you find out the name of the second immunotherapy drug? Did the oncologist have the results of the PET scan? Any signs of any other mets? Glad you were able to get her back to NY with you!
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