LexieCat
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Everything posted by LexieCat
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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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Hey Lee,
Just mentioned this to Steff and Tom--my daughter is new on the scene. Last summer she came out to me as trans. She came out to her dad earlier this year, and this will be the first time I've been with her since she went full femme (at Christmas she was wearing baggy clothes). So I'm trying to scout docs for her ongoing hormone therapy, as well as an good place for electrolysis.
I was really touched when she came out to me--she said she was telling me first because I'd be her strongest ally. Made me feel like I must have done a FEW things right. It's been a bit tough for her dad to adjust to. He loves her, but he's a worrier by nature.
Anyway, I'm really glad she can be here and I think she is, too. Oh, and she goes by Steph now. LOL, the one person who had an issue with her name was her brother, Jeff ("Did she HAVE to pick a name that rhymes?"). I told him to pity ME--people will think I named my kids so they had cutesy rhyming names.
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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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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.
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Mom newly diagnosed with Stage IV NSCLC
LexieCat replied to Katum31's topic in SHARE YOUR LUNG CANCER STORY
EFGR is not hereditary--it's just a mutation found in some cancer cells. It is not a gene that is passed along. -
Mom newly diagnosed with Stage IV NSCLC
LexieCat replied to Katum31's topic in SHARE YOUR LUNG CANCER STORY
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. -
Mom newly diagnosed with Stage IV NSCLC
LexieCat replied to Katum31's topic in SHARE YOUR LUNG CANCER STORY
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. -
Great to hear from you, Kleo! Sounds like you're doing great--keep it up!
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"No Evidence of Disease"--IOW, what we all want. They don't like to use the word "cured" but NED is where we all want to be.
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Kleo, Great news! Hope you feel better, soon (I'm sure the result helps with the pain!).
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Aw, Kleo, I'm so sorry--that's gotta be discouraging. When will you see the oncologist to get a better idea what any of this means? Sending a hug (and a tissue).
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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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Personally, I'd tune into their podcast.
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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.
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I've been very disturbed the past few years at the increasing number of articles promoting quack "remedies" for all kinds of conditions that are posted on even credible news sites, mixed in with harmless clickbait and legitimate news items. My personal opinion is that the mainstream media (which I regularly defend, and believe in) would do well to examine their own contributions to this kind of REAL fake news.
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Yay! It will be great to get the show on the road. And really, you and Bob need to take YOUR show on the road--you guys crack me up.
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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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Hey, Tom,
Just tried to send you a private message, and got a notification you "cannot receive messages"--do you know what's up with that?
Teri
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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.
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Very cool! You are fortunate to have that available to you, as well as doctors who can help you get hooked up with the latest and greatest drugs. I just did a quick google and found out the monthly cost is $15,000 (USD). Yikes!
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Best of luck to the two of you! Please keep us posted on how you are making out--you guys are like the intrepid pioneers. Love your attitudes.
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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.
