LexieCat

LOL, no matter what ever crappy thing happened to me, my mom's go-to response was: "It builds character."
Yeah, ticked me off no end. 

LOL, no matter what ever crappy thing happened to me, my mom's go-to response was: "It builds character."
Yeah, ticked me off no end. 

LOL, no matter what ever crappy thing happened to me, my mom's go-to response was: "It builds character."
Yeah, ticked me off no end. 

LOL, no matter what ever crappy thing happened to me, my mom's go-to response was: "It builds character."
Yeah, ticked me off no end. 

LOL, no matter what ever crappy thing happened to me, my mom's go-to response was: "It builds character."
Yeah, ticked me off no end. 

LOL, I'm just envisioning the puzzled look on the oncologist's face when somebody asks about the "Roscopal effect" and the ensuing argument when they ask if they meant "abscopal." You may have to register that trademark!

LOL, I'm just envisioning the puzzled look on the oncologist's face when somebody asks about the "Roscopal effect" and the ensuing argument when they ask if they meant "abscopal." You may have to register that trademark!

LOL, I'm just envisioning the puzzled look on the oncologist's face when somebody asks about the "Roscopal effect" and the ensuing argument when they ask if they meant "abscopal." You may have to register that trademark!

Thanks for sharing this, Ro. I've just had my first experience with post-chemo/immunotherapy progression (so far mild) and am looking into clinical trials. There are at least three worth consideration at this point, I think--each with a slightly different approach or twist. Two are where I'm currently being treated and the third is where I was first diagnosed (and had my lobectomy and subsequent second diagnosis of Stage IV). I'm waiting for someone there to get back to me to discuss. 
I've sort of skimmed over people's stories about clinical trials, focusing on what was most relevant for me at the time. Now I'm playing a bit of catch-up. Amazing how the perspective changes when something suddenly becomes deeply relevant to your life! 
Really happy you're having success with the radiation--hope it continues!

Hi LexieCat and Tom and BridgetO,
Thank you for your responses to my blog. LexieCat-deciding on a clinical trial is a really tough process. I carefully looked into the research and then went with what my medical oncologist believed was the best option. For my second trial, I also had a second opinion from a different medical oncologist and both agreed it was worth trying I wouldn't go into a trial unless you were physically ready for it. The side effects can be quite nasty, depending on the drugs involved. Luckily, once you are off the trial, the side effects eventually go away. 
 
Tom,
I look forward to sharing the results of my future scans and am always hopeful for NED!!
 
Best,

Ro

Thanks for sharing this, Ro. I've just had my first experience with post-chemo/immunotherapy progression (so far mild) and am looking into clinical trials. There are at least three worth consideration at this point, I think--each with a slightly different approach or twist. Two are where I'm currently being treated and the third is where I was first diagnosed (and had my lobectomy and subsequent second diagnosis of Stage IV). I'm waiting for someone there to get back to me to discuss. 
I've sort of skimmed over people's stories about clinical trials, focusing on what was most relevant for me at the time. Now I'm playing a bit of catch-up. Amazing how the perspective changes when something suddenly becomes deeply relevant to your life! 
Really happy you're having success with the radiation--hope it continues!

Thanks for sharing this, Ro. I've just had my first experience with post-chemo/immunotherapy progression (so far mild) and am looking into clinical trials. There are at least three worth consideration at this point, I think--each with a slightly different approach or twist. Two are where I'm currently being treated and the third is where I was first diagnosed (and had my lobectomy and subsequent second diagnosis of Stage IV). I'm waiting for someone there to get back to me to discuss. 
I've sort of skimmed over people's stories about clinical trials, focusing on what was most relevant for me at the time. Now I'm playing a bit of catch-up. Amazing how the perspective changes when something suddenly becomes deeply relevant to your life! 
Really happy you're having success with the radiation--hope it continues!

Thanks for sharing this, Ro. I've just had my first experience with post-chemo/immunotherapy progression (so far mild) and am looking into clinical trials. There are at least three worth consideration at this point, I think--each with a slightly different approach or twist. Two are where I'm currently being treated and the third is where I was first diagnosed (and had my lobectomy and subsequent second diagnosis of Stage IV). I'm waiting for someone there to get back to me to discuss. 
I've sort of skimmed over people's stories about clinical trials, focusing on what was most relevant for me at the time. Now I'm playing a bit of catch-up. Amazing how the perspective changes when something suddenly becomes deeply relevant to your life! 
Really happy you're having success with the radiation--hope it continues!

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).  

After some little thought, what is written here is very good and should be pointed out more often. I suppose it's part of being just human to believe that we are in control when the fact is we are not. I will try to develop a new mindset in this regard...one more thing that is hard about this all...

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/ 
 

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.
 

Thankfully, Stage IV approvals are swift...

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.
 

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.

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.

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.  

Holy crap.  As someone not yet "officially" diagnosed (but with likely cancer revealed during LDCT), I'm ETERNALLY grateful the screening in is available.  No matter what this turns out to be, I want to be out in front of it.
I read all the pros/cons, and I think given the risks that there MAY be, it's an individual decision, but I looked at the data, weighed the pros/cons and decided the advantages far outweighed the risks.