Tom Galli

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

Roz,
This is a remarkable story about a superb result that only happened because you had the courage and tenacity to insist on treatment. 
Your story also points to the importance of consulting with all medical disciplines who treat lung cancer: thorasic surgeon, pulmonologist, medical oncologist and radiation oncologist. The latter is not often seen but as you’ve demonstrated has very effective treatment tools to apply. 
I do look forward to hearing you tell us of future scans showing diminished cancer until it is gone! And, you are NED!
Stay the course. 
Tom

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!

Boy!!! I really missed this...happy belated anniversary...
Lou

Tom,
Just want to let you know I much I appreciate you sharing your blog post. You're an excellent writer! Would it be okay with you if I pulled some quotes out of the blog for my article?  I will, of course, attribute them to you.
Thanks again, and yes, stay the course (words to live by during a pandemic)
Linda

beautiful message Tom ...so true

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...

Tom thank you so much for your insightful into surviving Lung Cancer. I love the helpful tips to mange treatment and live life. ❤️Thank you. 

Just wonderful to read about this important milestone Susan!
Stay the course.
Tom

Congrats, Tom!  Nice feet and good pedicure job! I expect to see at least another 17.

Sorry that you have to go through this with your mom. We lost our mother and as a stuborn lady that she was, she decided of the moment to  let go. At he hospital she waited for me to arrive and then said: " I did have a good life and at  88yrs old am now ready to die!" . Good luck and courage!

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/ 
 

Awesome post Tom. Thank you for sharing. 
Claudia

So well said Tom.  You are an inspiration for so many of us.  Happy Thanksgiving.
Lou

Thankfully, Stage IV approvals are swift...

Thankfully, Stage IV approvals are swift...

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.

There can be a lot of confusion regarding the two programs offered by Social Security for those who become disabled.
SSDI (Social Security Disability Insurance) is for those who worked and paid into the system and then become disabled and meet the SS's criteria to be considered disabled.  Generally, you need to be considered unable to work for a least one year.   IN my case my Disability date was the last day I worked.  I was approved in about 2 months, but needed to wait for the sixth month to start receiving my monthly benefit.   My understanding is that Stage IV Lung Cancer is approved quickly, but again, you'll still have to meet your waiting period before benefits start.    
 SSI  (Social Security Income) is also a program for the disabled and provides additional funds for those who have very limited assets and income.  In most cases if you are married and have a working spouse, you would be denied, because they look at "family income".   The asset level is very low, under $3,000 and that is also based on family assets.    It's basically for those at poverty level.   If however you are eligible there is not waiting period, so you'll start benefits much sooner.   In many States this also makes the recipients eligible for Medicaid (low income insurance programs that each State offers).     Check the rules for your State to see what you may be eligible for.  
I always share this link https://www.ssa.gov/benefits/disability/ to the SS website, which has many more details.  You can apply online and/or call your local SS office for more specifics, especially now with Covid, as I would assume many of the offices may not be staffed.   
Good Luck!
 

Thank you for your service Tom.  

Two are my round trip to Hope Summit 💜 !

Tom,
Not sure how I missed this one, but thank you for this and ALL of your posts. I honestly don't know what we'd do without you here!  I'm having a particularly tough morning and read this - it helps. Big cyber hug for you. Thank you.
 

Thanks Tom.
This is advice is so important to me.  Thanks for responding so thoughtfully to my posts and for being here.
 

Thank you Tom. I just found this and I really appreciate your advice. You are truly an inspiration.