LexieCat
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Posts posted by LexieCat
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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.
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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.
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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.
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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!
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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?
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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.
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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!
- LouT, Justin1970 and KM_NRP
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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.
- Justin1970, KM_NRP, LouT and 1 other
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LOL, Lou, I gotta remember that one--like reading my own reviews. Yeah, some things are just plain dangerous to one's mental health!
- LouT, Justin1970 and DMaddox
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1 hour ago, Jesse L. said:
To be honest my first thoughts were to acquire an estate plan and I even went so far as to buy a headstone and burial plots for both me and the significant other as well.
Then again maybe those are things I should have done long ago... After all I am 64 already and just living gets Dicier the older a person gets...
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.
- LouT, KM_NRP and Justin1970
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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.
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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.
- Justin1970, LouT and Sandy N
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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.
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7 hours ago, Qing said:
I’m here for you too. My mother is lung cancer patient, pending surgery.
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.
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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.
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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).
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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.
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Down below where it says "quote" there is a box that says "reply to this topic." That's where you would type your post. You don't have to quote to reply.
Also, up top, there is a big orange box that says "reply to this topic," so you can do it from there, and next to that box is a link to "start a new topic," which allows you to start a brand new thread on a topic of your choosing.
You'll get the hang of it.
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Great summary, Lou, I can't think of a thing to add.
Except maybe one. It's a rare situation that doesn't affect most people, but it did me and a few other people I know. I developed something called "crepitus" or "sub-cutaneous emphysema" right after surgery. Has nothing to do with what most people think of as emphysema. This is a small leak of air that gets into the tissues under your skin (sub-cutaneous). It made me feel at first like my glands in my neck were swollen and then it spread to my whole chest and up my face. I looked like a chipmunk with the mumps!
Sometimes this resolves on its own but if it progresses, it becomes VERY uncomfortable--if you look it up online you can see some people have even their eyes swollen shut! So you do NOT want to let it get to that point.
I had to go back in the hospital for a few days with a chest tube to slowly deflate, and then I was fine.
As I said, it's pretty rare but it does happen, and if it does, it's something to report to your doctor. Not generally life-threatening, but a complication you want to address ASAP.
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4 hours ago, TJM said:
As for depression, I just finished treatment last week and almost immediately went to a dark place for a solid three days. By far the most depressed since all this started in January.
I kinda think there's always a letdown after a big effort is finished. I'm a retired prosecutor and I used to feel that way after I finished a trial and the jury was out. It's like you've done all you can, and there's a sense of being at the mercy of forces outside your control, after a big push giving it everything you've got.
Glad you're feeling better--I think it just takes time to adjust to not having to actively battle.
Durvalumab
in IMMUNOTHERAPY
Posted
Hi again!
I'm not on Durva (I'm on Keytruda, along with pemetrexed, as maintenance therapy), but just wanted to note that it's important to run any other medications or supplements by your oncologist. Not everything you read on the internet about potential interactions is reliable and your doctor knows your situation the best.
It's still pretty early here in the US, but there should be some Durva folks along before too long.
Glad to hear the side effects have been tolerable!