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LexieCat

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  1. LexieCat
    Glad to hear you're better now! Yes, it always pays to push it with the medical professionals when something doesn't seem right. Was that a typo? I'm assuming the "good news" is that it did NOT interfere with your infusions?
  2. LexieCat
    The only metastatic lesion I have is the tiny one (7mm) on my sacrum, and the consensus is that it's responding just fine to the same therapy I had for the main tumor, so no need for radiation. That WOULD have been an option if I needed it, but no point in treating something that's already responding to treatment. I recently had an MRI for hip pain (arthritis) and that showed the lesion to be "almost completely resolved." Depending on the size/location of other mets, precision radiation can be very effective. It's not an option in every case, though. Radiation's great, but it's appropriate only in situations where it is likely to do more good than harm.
  3. LexieCat
    The only really troublesome side effects I have are fatigue (which isn't constant--it mostly hits 3-4 days after infusion and the worst of it is over in a couple of days) and brain fog (aka chemo brain), which is more annoying than debilitating. The effects made it too difficult for me to continue working in my job requiring complex legal analysis, but they've had little effect on my life otherwise. I nap when I feel like it. VERY rarely I feel a bit queasy but if I do I take an anti-nausea pill. I've never actually vomited from chemo. People have different effects, though--for some people the effects are intolerable and they switch to another treatment. But most seem to do fine on the triplet. I always suggest people keep track of what effects they experience and when in the cycle they tend to appear/go away. That gives you an idea what to expect the next time and you can plan not to do anything too intense, for example, four days after infusion when you're likely to feel more like sleeping than moving around. Oh, and I started the triplet in September last year, ending in December. I've been on maintenance (Alimta + Keytruda) since early December.
  4. LexieCat
    Hi there, I was on the same "triplet" of drugs your mom will be getting. The carboplatin is included only for the first four cycles, but the Keytruda and Alimta (pemetrexed) I'm getting every three weeks now, as maintenance therapy, indefinitely. So yeah, what's being recommended for her is in line with what I, and others here, have been getting.
  5. LexieCat
    That sounds terrific--very hopeful and encouraging! Frankly, anyone going into this lung cancer deal WITHOUT being anxious is a little "off," if you ask me. It's perfectly normal--you just don't wanna get paralyzed by it. But chemo, with an aim of surgery in your future, is very positive news. Thanks for sharing--and keep us posted!
  6. LexieCat

    5 Years!

    LexieCat commented on Susan Cornett's blog entry in Susan Cornett

    I missed this, Susan--congrats!! 5 years is a biggie. Thanks for all the help you offered me when I was new and confused (as opposed to my present state of old and confused).
  7. LexieCat
    Hi, Ocean, and welcome. There are lots of reasons for lung nodules and most are not cancer. They tend to be scar tissue resulting from old infections, etc. That said, some ARE cancer. 2 mm and 9 mm are very small--most likely too small to biopsy. It's a bit too soon to consult an oncologist, but a pulmonologist is the expert in all things lung-related. Typically with nodules that size, they would have you come back in a few months to see if there are any changes. Also, sometimes the appearance of the nodule will provide clues--my first nodule was "spiculated," which made it suspicious for cancer. When/if it becomes suspicious, you'd probably be referred to a surgeon for a consult. Again, though, at this point I'd make an appointment with a pulmonologist to make a plan for going forward. How was the nodule discovered? Did you have imaging for something else?
  8. LexieCat
    Hi, Terry, I'm not on Durva (I get maintenance of Keytruda and Alimta), but I think any fever should be reported to your doctor, just to rule out infection. Cancer treatment of all types messes with your body's response to infection, and sometimes in unpredictable ways. I'd check, just to be on the safe side.
  9. LexieCat
    Great--that's more good news. You should come through this without much difficulty. The surgery is actually pretty easy--most people get VATS, which is laparascopic. Three tiny incisions and most people go home within a couple of days at most. I was out for dinner and a concert with friends two weeks later. And for me, the chemo wasn't too bad. I didn't have chemo till my recurrence (I was Stage 1b first time around with no lymph nodes). I'm now Stage IV, so I'll be on maintenance therapy (chemo/immunotherapy) indefinitely, but the initial chemo had relatively mild side effects (mostly fatigue and brain fog). Yeah, unfortunately lung cancer sometimes recurs so you will want to stay on top of your followup scans, so if that does happen you can jump right on it. Keep us posted!
  10. LexieCat
    Hi, KM, Sorry about the diagnosis but glad to hear things are moving along. What did the PET CT scan show? Since you have a couple of positive lymph nodes, there's a good chance you'll be getting adjuvant chemo after surgery (assuming you have surgery). Thanks for your work as a paramedic. I'm a retired prosecutor and have always appreciated the good work you folks do taking care of victims of violence.
  11. LexieCat
    LOL, Lou, I gotta remember that one--like reading my own reviews. Yeah, some things are just plain dangerous to one's mental health!
  12. LexieCat
    Hey, I updated my will and other info, myself, as soon as I was diagnosed. The way I look at it, I'd sooner do all that crap while I'm feeling good (and I'm the same age as you are--65 later this summer) than worry about it/struggle with it when I'm feeling sick. It makes me feel better, actually--like I'm controlling what I can. A bunch of things I no longer have to worry about. Worst case scenario, I live to be a hundred and spend all my money having fun in the meantime.
  13. LexieCat
    Hi, Barb, I'm sorry you're still having pain. Just so you know, this thread is from 2004. You MIGHT get a better response if you start a new thread, maybe here: https://forums.lungevity.org/forum/59-surgery/ It might be helpful if you told us exactly what type of surgery you got and what you have tried for pain relief. Have you let the surgeon know you're still having bad pain? The surgery I had was VATS, so pain really wasn't a problem for me. I hope you get some relief soon.
  14. LexieCat
    One other suggestion--everyone is different about this but I prefer to make sure I don't see scan reports before the doc has a chance to discuss/explain them. I've had several instances where the oncologist or other doctor disagreed with the radiologist's take on it, and if I'd read the report on my own I would have been freaking out a bit. Plus PET-CT results are often not definitive, and you need for a doctor to explain the significance of the results. Just my experience--YMMV.
  15. LexieCat
    I haven't heard of COVID-related masses, which isn't to say they don't exist. 3 cm is large enough to be concerned about, though. The PET-CT and biopsy, if possible, will tell you a lot more.
  16. LexieCat
    Over the course of diagnosing/treating lung cancer, most of us have literally dozens and dozens of CT scans. The risk of radiation from these is far less than the risk from the cancer if it's not properly assessed and treated. I wouldn't worry at all about that. The type of biopsy most often depends on the size/location of the tumor and any lymph nodes or other sites they want to sample. When I was first diagnosed back in 2017 with my Stage Ib cancer, the nodule was too small to even biopsy. My upper lobe was removed based on its suspicious appearance and sure enough, it turned out to be adenocarcinoma. This time, I had a bronchoscopy to sample a much larger tumor and lymph nodes. It all depends on individual characteristics.
  17. LexieCat
    Hi, Quing, It's great to jump in and offer support to others. I'd suggest, though, that you focus your responses on more recent posts--this one is from 2003, and I don't believe the guest poster ever posted again. We get new people in all the time, though, and you might want to especially check out the caregivers' forum, located here: https://forums.lungevity.org/forum/9-caregiver-resource-center/. It takes a bit of poking around to get familiar with all the info and resources here on the Lungevity forums, but there's a wealth of knowledge, experience, and support to be had--don't hesitate to ask us anything! Most of the time, one or more of us has been through something similar to just about every situation.
  18. LexieCat
    Steve, have you asked to be connected with someone in Palliative Care? Their job is to help sort out things like side effects. There might be strategies that could address the worst of the effects you're experiencing. And as far as whether misery is "worth it" depends, I suppose, on how long the misery continues vs. the possible benefit (and also what other options might be available). I'm not for a second suggesting there doesn't come, for some people, a point where it makes no sense to continue treatment. I think you might be a ways off from that point right now, but I totally get the feeling--I won't say the thought didn't cross my mind with the back pain that left me unable to sleep. Still, the pain med prescribed to deal with it helped tremendously. And if this comes on for a few days after each Zometa infusion, I could probably take it, as long as the pain meds work. Hoping you will try to hang in there and bring in some additional professionals to help you get through this.
  19. LexieCat
    Sounds pretty awful, Steve--I hope Ron's right and it might be a temporary reaction. I'm still trying to figure out the genesis of my severe lower back pain that came on last week--apparently that can be a side effect of the Zometa I'm taking for bones (or I suppose could be a sign of a spinal met). If it's the Zometa, I dearly hope it's a temporary effect because it was unbearable until I was prescribed oxycodone (which I needed just to get through my CT scans on Tuesday).
  20. LexieCat
    Hi, and welcome. You might have better luck connecting with others here if you post on the Veteran's forum, here: https://forums.lungevity.org/forum/64-us-veterans/
  21. LexieCat
    Lots of us have the "appearing and disappearing" mystery nodules. Here's what I learned--because CTs examine many discrete "slices" of your anatomy, very small nodules may show up on one scan but not be visible on another. It's not a secret and it doesn't mean anything alarming is happening--it's just a limitation of testing. I keep all my old scan reports and nodules in the same location sometimes show up and sometimes don't--it can also affect the apparent size (depending on angle, etc.). If nothing dramatic is happening, they just continue to keep an eye on them.
  22. LexieCat
    Got everything crossed for you, Barb. Keep us posted!
  23. LexieCat
    Hi, sorry, just seeing this. What I did was to very carefully answer EVERY question about the tests and treatments I've had since I was diagnosed in July (and included my surgery from 2017). I got a call from a caseworker a few days later who wanted copies of my paystubs. I asked if I should actually mail the records I had (I'd printed them all out, of course) and he said no need--they would get everything they needed. I think the specific answers I provided helped speed the process--they knew what they were looking for. Like I said, it wound up being 10-14 days from first application to approval, for me.
  24. LexieCat
    I have Stage IV LC and was approved about 10 days after I applied. It helps, I think, if you have all your info ready about all your tests and treatments. I, too, have the 5-month waiting period before I get my check (it's actually 6 months because checks are for the previous month's benefits). The good news is that the time runs from when I was diagnosed, rather than when I started treatment and stopped working. For non-Stage IV--patients who may actually feel worse symptoms than someone like me--you do have to go through the drill of showing you are too disabled to work. From what I understand, it is highly beneficial to get a disability attorney involved early on--you don't pay anything till you win your case and the lawyer is paid a percentage of any "back pay" benefits going back to when you became disabled. I agree with Lisa--the SS website is great, and there are also several other good sources of info that promote attorney services (but you don't need to register to hook up with a lawyer to read the info on the site). Here's one that I found helpful: https://www.disabilitybenefitscenter.org. It's not affiliated with SS, and it does promote attorney services, but the info looked legit.
  25. LexieCat
    WTG--great news! Yes, persistence pays off.
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