LexieCat
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Posts posted by LexieCat
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It's great that you are doing so much research and are willing to advocate for your mom. I don't know your mom, but I do know this about myself. For me, even though I value the support and input of my family, I would not be comfortable turning over all the information and decision-making to them. At least as long as I am capable of doing so, *I* want to be the person making fully-informed decisions about my own treatment. So make sure you aren't shutting your mom out or making her feel like she doesn't need to know what's going on. Some people (like Steff's mom, apparently) really don't want all the details. But a lot of us do. Everyone is different. Just be careful that in the interest of doing what you can to help you don't discourage her from taking an active role in her own treatment.
I hope you don't take offense--none was intended. It's great to have kids who care so much.
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Hi there, and welcome.
I'm sorry about your mom's diagnosis. Unfortunately, being "healthy" doesn't prevent a person from developing lung cancer, but it really does provide an advantage when it comes to fighting it. It's great that she came through the brain surgery so well.
We have quite a few members here who have long-term survival after a Stage IV diagnosis, so there's plenty of reason to hope. Others here will have more input on the chemo/immunotherapy/clinical trials issues--I was one of the lucky Stage I people, so surgery is the only treatment I have personal experience with. But the others will be along soon.
Glad you found us--this is a great place for information and support.
- BridgetO, Samanthagg, LaurenH and 5 others
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Great to hear from you, Kleo! Sounds like you're doing great--keep it up!
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You're a trouper, Bob! Sounds like that tumor isn't happy about having its happy existence disturbed. Glad you went and had it all checked out. Your visit to the ER sounds a bit like my re-admission for the crepitus I experienced after my surgery--after the four-star treatment at the time of surgery I felt like I was back in the Motel 6. What counts most is coming out of it OK.
Hang in there and hope the coughing is done soon.
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Bummer--I sure hope it resolves soon.
Sending good vibes!
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7 hours ago, Rower Michelle said:
The “twins”are gaining quite the following!
Personally, I'd tune into their podcast.
- Kleo, Tom Galli and Rower Michelle
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I'd suggest talking with a social worker or patient advocate or patient navigator at the place where you're receiving care. They often know about ways to help pay for care. There's almost always a way to do it.
Hang in there, but do reach out and let people know who might be able to help.
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Hi, Helen, and welcome.
No, the results do not mean you're "cancer free." The fact that cancer was found in your lymph nodes means it has spread, and that's also what the staging tells you. The lobectomy removed the primary tumor, but not the cancer cells that have spread to your lymph nodes (and possibly other parts of your body). So you will need to have some kind of drug-based therapy to kill those other cells.
Not everyone experiences the same side effects, nor with the same intensity. Side effects can be managed--there are lots of folks here who can give you tips for ways to do that.
I hope you will continue with treatment. Cancer treatment is improving all the time, and you could have many, many years of life ahead of you if you opt for treatment.
- Mally and Seventhson
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That's great news! Definitely moving in the right direction.
Looking forward to the next good report!
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3 hours ago, Robert Macaulay said:
This compassionate drug use is available in the USA .
Oh, I know it is. I just meant it's great when anyone who needs these drugs has a way to get them. Anyone eligible for such a program is fortunate.
I know that R&D of new drugs is expensive, but some of the pricing really is off the charts.
- Kleo, LouT and Robert Macaulay
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Personally, I don't believe in those things you read online about sugar "feeding" cancer. We all need carbs in our diet. While too much added sugar isn't especially healthy for anyone, I don't think it poses any particular danger to cancer patients. And if, like Donna and Tom, the only foods that appeal to you or you can keep down are sweets, go for it--you can supplement with vitamins and minerals to make sure you are getting the right nutrients.
Note that there are oncological nutritionists out there--if you are concerned about nutrition you can ask for a referral to one. I'd be more comfortable following the advice of a properly credentialed nutritional expert than I would the wacko stuff you sometimes read online.
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I think you want to eat healthy food in general, but I've never seen/heard anything credible to suggest a particular diet is beneficial. Sometimes the treatments make eating difficult--there is sometimes nausea or difficulty swallowing or changes in the ability to taste food. When that happens, it's important to try to get sufficient calories to keep up your weight and strength. Tom Galli, who will be along shortly, can tell you all about the wonders of mint ice cream when things got tough for him.
But apart from that, I've never heard that drastic diets do any good.
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Wow, that's frustrating. I don't know a lot about the targeted therapies, but plenty of other people here do, and I'm sure they will have an idea about how to get things moving in the right direction.
How are you feeling after your back surgery?
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Hi, Susan, and welcome.
I'm sorry, too, about your diagnosis. Lung cancer sucks no matter what your age or your smoking history. Like Bridget, my cancer was caught very early because I was in a screening program for longtime smokers. I'd given up smoking a year before my diagnosis.
There are, indeed, quite a few long-term survivors here whose cancer was Stage IV. They will be along shortly.
Has your tumor been biopsied so you know what type of cancer it is? Do you know if it's been tested for genetic markers that might make you eligible for targeted therapy?
Glad you found us--this is a great group of folks and you will find a lot of collective knowledge and support here.
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Hi, Kathy,
My situation is quite a bit different from yours, but I had to make a decision, too. Although my surgeon was convinced that my cancer (adenocarcinoma, caught by screening) was Stage 1a, the pathologist concluded it was stage 1b, based on his belief that the tumor had invaded the pleura. After a whole big debate at the the tumor board, the pathologist "won," so it was staged 1b. Interestingly, my stage is apparently about the only one without a clear-cut recommendation for further treatment. Chemo is never recommended for 1a, since it's actually been shown to result in worse outcomes than surveillance alone, and with stage 2 or greater there is always a recommendation for either chemo or radiation. But for my stage, ehhhh, nobody really knows what's best. My oncologist laid out all the options, and given the relatively small likelihood chemo would increase my chances of survival or avoiding a recurrence, I chose to pass on the chemo. I'm pretty comfortable with that decision, but there's really no way to know for sure whether I would have been better off with the chemo. But I'm pretty sure that if there were a strong, clear-cut indication that the chemo would be of positive benefit in terms of survival or avoiding a recurrence, I probably would have gone for it.
I get your point (as I think we all do) that when faced with a highly aggressive cancer then there is sometimes a point at which quality of life takes precedence over extension of life. But right now it doesn't sound to me like you have enough information to conclude it's only going to be "misery before death." Remember, you can always stop later if that's what seems appropriate. But if you make the decision not to pursue treatment too soon you might really be shortchanging yourself and your chances for many, many healthy years to come.
It is, indeed, a very personal decision, but that's how I tend to think about it.
Teri
- Susan Cornett and BridgetO
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WooHOO!! Sounds to me like some serious celebrating is in order.
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Well, that sucks. Yeah, unfortunately a lot of the stuff in our heads is stuff we actually need. Sorry you're having to deal with it, but glad to hear it's small/treatable.
Keep us posted!
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Mom newly diagnosed with Stage IV NSCLC
in SHARE YOUR LUNG CANCER STORY
Posted
EFGR is not hereditary--it's just a mutation found in some cancer cells. It is not a gene that is passed along.