LexieCat

Yeah, I think it took a week or two for my approval. I just had to get them all the medical records, but it was pretty simple. 

Is it normal to be stressed out and a little bit nuts when facing the prospect of lung cancer? Sure is.
Enlarged lymph nodes rarely cause pain. In rare cases, there could be pain if a nerve is pressed against, but you'd know if you had a lymph node that big--it would have shown up on the CT scan. 
And anxiety can definitely constrict your breathing. Listen, I have Stage IV lung cancer, had one lobe removed, and haven't had any breathing problems, other than those related to my treatment I just finished.
Do your best to relax, and wait till you have more information. I know it's hard not to get carried away, but seriously, it doesn't help anything and will just make you miserable in the meantime.

Hello and welcome,
Thanks for joining our group.  A few of the members in my LC support group have had PEs shortly after diagnosis, they were all hospitalized for at least a week to receive IV blood thinners and were discharged following a confirmation via CT scan the clots were responding before going onto Xarelto.  Unfortunately this is a common situation.   It is serious condition but treatable condition that requires long term medication.  

With a stage IV diagnosis, SSDI will be approved, there is a six month waiting period before payments can be received and two years before Medicare eligibility.  It’s possible to work and earn a small amount of money each month.  The best source of information is contacting the Social Security Administration directly as the internet is loaded with misinformation.  
 
You’ve been through a lot this summer- I hope your scans go well for you.  Keep us posted. 
 
Michelle

I have not applied for SSDI yet.  I've worked every single day, even the day I broke my arm and all through the rest of this mess.  Unfortunately, my husband (well ex-husband now - of 35 years - so he could obtain insurance through the state to get a life-saving operation done because we are both self-employed and could not afford insurance on the marketplace) has been dealing with a degenerative back issue, hasn't worked in three years, and has applied for disability (denied twice but we have an attorney) so I'm the only source of income.  I have to work and disability won't come even close to my present income.  Thankfully, I work from home and have 24 hours to turnaround my work so I somehow make that happen no matter how punky I may feel.  I can tell you, it was definitely interesting trying to type medical records (I am a medical transcriptionist) for 7 weeks with a broken arm    Can one earn money while on SSDI?  I truly have no idea.

Hi, D, and welcome out of lurkdom. I don't have any experience with pulmonary emboli. It's great that your nodule is gone--hopefully any other spots, like your arm, are gone, too.
Just a heads-up--hopefully this will not happen to you, but I had a terrific response on the triplet, but my cancer started to progress while on the maintenance. Just keep in mind, there are TONS of clinical trials for folks who have progression after first line chemo/immunotherapy. I just did one and so far, it's working great (next scans next week). Many of those expenses are covered by the study's sponsor.
Also, have you applied for Social Security Disability (SSDI)? Stage IV lung cancer patients automatically qualify for benefits, and after two years you would be eligible for Medicare. Even though Stage IV cancer is treatable, lots of us have to undergo treatment for quite a while. So it's worthwhile to plan for that possibility.
Let us know how your PET CT turns out. I go for my next CT scans the same day, so I'll be rooting for you, too.

LOL, Lou, I gotta remember that one--like reading my own reviews. Yeah, some things are just plain dangerous to one's mental health!

Is it normal to be stressed out and a little bit nuts when facing the prospect of lung cancer? Sure is.
Enlarged lymph nodes rarely cause pain. In rare cases, there could be pain if a nerve is pressed against, but you'd know if you had a lymph node that big--it would have shown up on the CT scan. 
And anxiety can definitely constrict your breathing. Listen, I have Stage IV lung cancer, had one lobe removed, and haven't had any breathing problems, other than those related to my treatment I just finished.
Do your best to relax, and wait till you have more information. I know it's hard not to get carried away, but seriously, it doesn't help anything and will just make you miserable in the meantime.

OK, all due respect to your doctor, but to my knowledge (and I've been dealing with lung cancer since my first diagnosis and surgery in 2017) lung cancer can't be diagnosed without a biopsy. There may be strong suggestions that that's what it is, but it can't be definitively diagnosed from a CT scan. Your doctor certainly might be right, and it will turn out to be cancer, but I'm just suggesting you not get ahead of yourself. The PET CT will provide more info, but you really need the biopsy to know what you're dealing with. 
Anyway, glad you have all those tests lined up. You'll find out, if you're around here for any length of time, that it pays to take things one step at a time. The waiting for tests and results is one of the hardest, most frustrating aspects of this whole deal. But learning to be patient and not get carried away will be good for your mental health.  

OK, all due respect to your doctor, but to my knowledge (and I've been dealing with lung cancer since my first diagnosis and surgery in 2017) lung cancer can't be diagnosed without a biopsy. There may be strong suggestions that that's what it is, but it can't be definitively diagnosed from a CT scan. Your doctor certainly might be right, and it will turn out to be cancer, but I'm just suggesting you not get ahead of yourself. The PET CT will provide more info, but you really need the biopsy to know what you're dealing with. 
Anyway, glad you have all those tests lined up. You'll find out, if you're around here for any length of time, that it pays to take things one step at a time. The waiting for tests and results is one of the hardest, most frustrating aspects of this whole deal. But learning to be patient and not get carried away will be good for your mental health.  

Hi, Justin, and welcome. I'm curious--if you haven't had a biopsy yet, how is it you've been diagnosed with lung cancer? Generally, a biopsy is necessary to diagnose, though nodules may be suspicious for cancer. I had a nodule that had grown and developed a spiculated appearance, which made it suspicious, but the cancer could not be confirmed until the pathology results came back after surgery.
Good luck--hopefully if you do have lung cancer it will be early stage, though all stages are treatable.

Terrific! I had a small complication with an air leak (had to be re-admitted for deflation), but otherwise my experience was similar to yours. Amazing, isn't it? Keep us posted after your appointment.  

Hey all!
Update for everyone, today I’ll be getting my fourth dose of enhertu. After this dose I’ll be due for more pictures to see how everything is going. Hopefully I’m due for some good news like I’m been hoping for and continue this treatment. Lately I’ve been pretty fatigued and nauseous so lying down has been my remedy most of the time. I’ll update you guys with results once I get them, fingers crossed 🤞🏼 

Update time!
Just got my 3rd infusion of enhertu on Friday and I’ve been feeling great. One thing I’ve noticed is after a couple of days after infusion I get some fatigue and nausea but only for a couple days. I have one more infusion before my scans which let’s hope for some good news because I’m in need of it. I don’t like being left in the dark for so long but it’s part of it unfortunately.
I actually found out some news of my previous treatment. It was actually a mixed response but the bad outweighed the good and I believe my doctor didn’t tell me not to get my hopes up. The good portion of it was that there was some shrinkage of the main nodule in my lung, but the bad was all the spots that emerged. So hopefully this new drug (which was recently just approved and I’m the first patient my doctor has given it too works).

I’ll post updates when I got some more stuff for y’all. Thanks for being around like always and I hope things are going in your favor for everyone ❤️

Hi, Ale! You sound terrific!
I've been having sort of a long slog recovering from the trial, but I woke up today feeling more energetic than I have for the past few weeks. Kinda like slowly coming back to life, ya know?
Yesterday I finally shaved the few hairs that were still clinging to my scalp, and that made me feel better, too. I hated looking like a badly-plucked chicken, but now my head is smooth and I have some comfy caps to wear as it starts to grow back. I really don't mind losing it (just hoping it re-grows the way it was). 
So trade school to be a mechanic? That's awesome! I remember when I was 17 buying a book and teaching myself how to change my oil and spark plugs, set the timing, etc. Back in the days when computers didn't control everything, lol.
Proud of you, kiddo--rock on!

Ooh, I just had body work done on my car the week before I went into the hospital. The last time I went to Penn (for my Zometa infusion) I parked too close to one of those cement pillars in the parking garage and put a nice dent in my passenger-side front door. Most of the places I called couldn't get me in before July. The guy who does my detailing for me (a once-a-year indulgence) recommended this place he knew and they did an amazing job and had it done almost a week before my June 9 admission date. I'll def. be using them next time. 
Sounds like a great line of work--no shortage of need!

Ooh, I just had body work done on my car the week before I went into the hospital. The last time I went to Penn (for my Zometa infusion) I parked too close to one of those cement pillars in the parking garage and put a nice dent in my passenger-side front door. Most of the places I called couldn't get me in before July. The guy who does my detailing for me (a once-a-year indulgence) recommended this place he knew and they did an amazing job and had it done almost a week before my June 9 admission date. I'll def. be using them next time. 
Sounds like a great line of work--no shortage of need!

Ooh, I just had body work done on my car the week before I went into the hospital. The last time I went to Penn (for my Zometa infusion) I parked too close to one of those cement pillars in the parking garage and put a nice dent in my passenger-side front door. Most of the places I called couldn't get me in before July. The guy who does my detailing for me (a once-a-year indulgence) recommended this place he knew and they did an amazing job and had it done almost a week before my June 9 admission date. I'll def. be using them next time. 
Sounds like a great line of work--no shortage of need!

Hi, Ale! You sound terrific!
I've been having sort of a long slog recovering from the trial, but I woke up today feeling more energetic than I have for the past few weeks. Kinda like slowly coming back to life, ya know?
Yesterday I finally shaved the few hairs that were still clinging to my scalp, and that made me feel better, too. I hated looking like a badly-plucked chicken, but now my head is smooth and I have some comfy caps to wear as it starts to grow back. I really don't mind losing it (just hoping it re-grows the way it was). 
So trade school to be a mechanic? That's awesome! I remember when I was 17 buying a book and teaching myself how to change my oil and spark plugs, set the timing, etc. Back in the days when computers didn't control everything, lol.
Proud of you, kiddo--rock on!

@LexieCatIm super glad to hear things have been working out in your favor! Hopefully that treatment kicks it’s butt and gets you better.
Im going to be a collision repair tech, so fixing body work on cars and learning how to paint. Which is really what I want to do in life. I’m not letting this disease stop me from living life and advancing in it.
I’m currently a garage mechanic for my house so I know a lot but no by trade, just by tinkering. My pops has shown me a lot in there and I have thought myself as well.

Hi, Ale! You sound terrific!
I've been having sort of a long slog recovering from the trial, but I woke up today feeling more energetic than I have for the past few weeks. Kinda like slowly coming back to life, ya know?
Yesterday I finally shaved the few hairs that were still clinging to my scalp, and that made me feel better, too. I hated looking like a badly-plucked chicken, but now my head is smooth and I have some comfy caps to wear as it starts to grow back. I really don't mind losing it (just hoping it re-grows the way it was). 
So trade school to be a mechanic? That's awesome! I remember when I was 17 buying a book and teaching myself how to change my oil and spark plugs, set the timing, etc. Back in the days when computers didn't control everything, lol.
Proud of you, kiddo--rock on!

Hey all,
I just got my second out of four infusions done yesterday with enhertu. Like last time this treatment shouldn’t be too hard on me like chemo was. I have been able to work and do thing I use to do like go to the gym and work on my project car. I forgot to mention I’m going to trade school! One thing I have learned with this disease is that it can beat you to the ground and keep you there if you let it, which had happened to me. Not being able to work, being stuck at home 24/7 and stuck in that neck brace threw me into a bad depression. But I realized what cancer was doing to me and I fixed it right away. Now a days I’m doing better and my neck injury has been as well. I look forward to good news my way because I know I’m due for it. Hoping this treatment works in my favor, I have a feeling it will. I hope each and everyone has been doing good and has had good things come there way in life. If not, I’m sorry but keep your head up because it does get better. ❤️

Hey all, 
Treatment hasn’t been too hard on me. It’s actually a lot easier than the chemo definitely was. I’ll be on this for 4 infusions so I hope it works, I feel as it will but let’s hope. I’ve been having a lot of nausea last 2 days, I’ve been taking compazine but it hasn’t worked that well. Any other remedies for nausea? I could definitely use it. Doc said it’s the disease causing it but I feel like it’s left over symptoms from chemo. Thank you all, much love and luck to all. ❤️

Hey all, 
Quick update on my targeted therapy. It was accepted by insurance and I’ll be starting tomorrow. Let’s hope this does the trick and controls this thing! 

Hey all, 
Quick update, I’ve been pretty good. I’ve managed my nausea with an anti acid pill I was prescribed. Other than that life has been pretty normal as it gets, no sickness or anything. I’ve been working again as well, I’m just waiting for my next infusion. Hopefully y’all are good and good news has come yall way. 

Judy’s right—pay more attention to what the oncologist says than the radiology report. You can also always get a second opinion on treatment options. Hope your insurance comes through fast.
And thanks for the well-wishes for me. One of the research nurses put me in touch with another woman who is starting this same trial next week. We agreed to exchange numbers and finally connected today. We may be like two ships passing in the night—her arrival will pretty much coincide with my departure next week. But still, good to have a buddy to compare notes with. She was very interested in this group too, so I sent her a link to the forums.