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NSCLC 22years old


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Shella, other people on targeted therapy also suggest drinking plenty of water to minimize side effects, so you're already ahead of the game. Also, depending on your dosing instructions, some folks find that taking their drug at bedtime (versus morning) helps with fatigue. I'm able to take mine at bedtime and find that time works best for me. 

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I have bad news. I got my updated scans done for my neck and it’s not gotten better. Doctor was calling me to go back up to the ER and get an emergency CT scan done. I can’t catch a break! Life has been so cruel to me and I don’t understand why.. It feels like I’ve been healing and it hasn’t and I don’t understand why. So now I don’t know what’s gonna happen, I just hope I don’t need surgery. Wish me luck, I really need it. 

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We’re all clear and I’m being discharged! The ct scan cleared up their concerns of my C3 being imbalanced but it seems to be all normal. Nothing yet to see if it’s been officially healing but I’ll find out eventually. Things do seem to be going somewhat in my favor I guess.

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Just goes to show that you can never jump to conclusions in this game!! Everything requires verification and you'll just have to learn good coping skills when "surprises" happen. Oh so easy to say, but so hard to do...

Next time something like this happens, keep in mind what happened this time...be the cool one in the room. Freaking out will affect YOU the worst...and you don't need that at all.

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That's a relief!

FWIW (and I know it's not as concerning as a cervical bone), I broke my collarbone falling OFF my bed on Labor Day, and it STILL hasn't healed. My ortho specialist says the fragments are too small for surgery to do any good. 

HE is convinced it's due to an undiagnosed bone metastasis and my chemo, which can interfere with healing. (My oncologist isn't convinced.) The ortho guy tells me, though, as long as I'm not having pain we aren't gonna worry about it. And even though it hasn't totally healed, I have no pain and have use of my arm on that side, so it isn't so terrible. 

Hopefully you can get your chemo started soon and get this show on the road!

 

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My esophagus has gotten REALLY bad in the last day. Easily the worst it’s ever been and idk why. My throat feels like it’s ok constant fire and I can’t eat or drink anything. Idk what to do it’s so painful, it was fine a day ago and boom I can barely function. I’m so over it.

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That sucks. I found that oxy helped me. The magic mouth wash not so much. Wish I had a better trick to offer. My wife bought the magic honey but we both forgot about it. Some people swear by it.

Tell your rad onc now. He/she should know.

Peace

Tom

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You bet, I'd be calling someone now or sooner to try and get some relief from that. You should have numbers to call just in case things like that pop up. It dosen't seem normal and your medical team needs to know...

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Magic mouthwash isn't going to help with esophagitis. Ale, you need some good pain management and don't be shy about taking it. For me, methadone was the best. Esophagitis can create physical deconditioning when you can't eat or drink. Get on top and ahead of your pain, and ask for IV hydration (through your port if you've gotten it) if you find yourself getting dehydrated. Your brain will not work properly if you're dehydrated. 

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They gave me some medicine called Carafate. I’m supposed to take it with water dissolved, I’m not sure what it does exactly. But I have been able to hydrate myself, it burns but I can do it. I just hope this is the peak of it, I’m so over not being able to eat things and drink. By far the hardest thing I’ve had to deal with in my life. 

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Ale, it was for me too and actually became very serious and life-threatening. This is why I'm so supportive of proper pain management and palliative care. I assure you it does eventually heal. The way I see it is I paid my cancer "dues" up front, and it sounds like you're doing the same. Makes you grateful for every day of pain-free life you get later on. 

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The pain has subsided substantially thankfully. The medicine seems to be doing it’s job very well. It does seem that everything is hitting me all at once and it really does suck. I’m hopeful that I will be okay soon, just the hurdles that life throws at us. 

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For the first couple of months, many of us think, is it ever going to get better? Sometimes just getting through the day seems like a ginormous effort both physically and mentally.  There will be a light at the end of this tunnel.  You will get there.  Believe in yourself and your team.  Try to remember you are not complaining but communicating with your team.  The more they understand what you’re dealing with (no matter how insignificant it may seem) the better they can address your symptoms.  Rest and fluids will go a long way.  So far you’re doing great...

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I do have a question. How long did it take anyone to go back to work or did you go back to work? I work at a car audio store so I don’t do a lot of labor intensive work, I want to work through everything so I can do the things I like. I know once my neck is better and my throat is normal I can work but it depends on the chemo.

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Hi, Ale,

I didn't go back to work. I'm a retired prosecutor and work for a nonprofit doing complex legal analysis and writing. Even though my side effects have mostly been mild, the brain fog and fatigue made it too tough to continue to do that job. So I'm out on disability and it's doubtful whether I'll go back. I'm on my second career, so I have a pension from my previous government job, plus an employer-paid disability policy and SSDI benefits, so I am in decent shape financially. I don't have to worry about health insurance because I get that through my retirement. That may be one of your more significant concerns (though at your age you are probably still eligible for coverage under your parents' health insurance). 

I just found out today there has been some progression of my cancer and I will be starting on a clinical trial of Keytruda plus another brand new immunotherapy drug, which acts like a "booster" for the Keytruda. And the Alimta will be discontinued. So it remains to be seen how I feel with this new drug regimen, which will probably start in 3-4 weeks.

My suggestion is that you see how you feel. You could look into Social Security Disability if you are unable to go back to work--people with Stage IV lung cancer automatically qualify as "disabled," though I'm not sure whether you need a certain amount of work credits to get it. It's worth looking into, though, just in case it becomes necessary. One advantage of SSDI is that you would be eligible for Medicare in two years, regardless of your age. Something to think about.

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I’m hoping that it is good progress towards your cancer so it’s one step closer to being taken out @LexieCat. I’ll be looking into SSI very shortly, I just hope that it gets approved pretty fast. I spoke to my boss earlier today and the good thing is I work for a small business so he is very understanding and is willing to work with my through everything I’m going through. We will see how the chemo effects my being and functions to see if I can continue working. 

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Well, "progression" in the lung cancer world isn't a good thing. It's the cancer that has progressed (grown and/or spread), not the patient. 

I'm hopeful about the clinical trial, though, and I'll be posting about it. Hopefully it's awesome and will eventually be available to everyone who has progression from treatment with Keytruda.

Here's my post about it:  https://forums.lungevity.org/topic/48256-not-what-i-wanted-to-hear/

 

 

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Ale,

After my year's worth of surgery and corrective surgery, I had a recurrence. My 3rd and 4th line treatments were chemo (taxol and carboplatin) and I worked during the infusions. My 5th recurrence was treated with CyberKnife (precision radiation) and I worked throughout that treatment. 

Social Security determined I was totally disabled in 2004 but I didn't feel totally disabled and sent the check back and went back to work. By 2012, the surgically induced chronic pain and neuropathic pain from taxol coupled with workplace stress became a bridge too far. I filed for Social Security Disability and left the workforce.

It is important however to have something to do when one doesn't work. I'd give that some thought as you consider your future.

Stay the course.

Tom

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