NSCLC 22years old

[Judy M2]

Could be the start of esophagitis. Definitely tell the rad onc. Liquid Tylenol may help but you could need stronger pain relief. It may get worse before it gets better. Standard advice is to stay away from crunchy/hard or spicy foods and eat soft foods like smoothies (which I personally dislike), applesauce, mashed potatoes and ice cream. Ensure or Boost Soothe are also tolerable and a good source of protein. However, your tolerances may change from minute to minute. This issue is why I recommend getting palliative care on board early on. My pain was severe, and it would take me an hour to get an Ensure down. In the end, methadone worked very well for me for pain management. My esophagitis lasted for about 4-5 months but has since cleared up.

[Jesse L.]

OK, so I may not be the best person to advise you on your sore throat because I've never had radiation therapy yet, but I've heard from many others on here who have that it gets much better a few short weeks after radiation is over. Essentially your esophagus became sore and inflamed from the nearby radiation and it makes it hard to swallow. I'm sure others who have had radiation therapy will tell you the same very much probably better than me.

You'll want to check out the radiation forum... From what I've read there you might find some doable remedies to help with the swallowing thing till your throat heals. 

As I've always said take the time and effort to learn all you can. You should always want to become your own best advocate; it is helpful in so many ways to be informed as much as you can. That way everything is not so overwhelming and your capacity to be able to deal with what you have and may be around the bend grows exponentially. I can imagine you think it sucks that someone as young as you should have what you have at all, but each of us feels the same for our own reasons. It doesn't matter...you have to play the hand you're dealt. Check in when you need the support...someone will always be glad to give it!😊

[Sandy N]

I had esophagitis something fierce.  It started near the end of my 3rd week of radiation (I had 6 weeks of it).  Eating and swallowing in general is going to be hard.  I found that sticking with soft foods helped.  But even so I had to take a drink immediately after each bite to wash down anything that might want to hang around on my esophagus.  I didn't really have any problem with any beverages.  I could eat canned soup (Campbell's and I became BFFs) but still had to do a beverage chaser.  There is a "magic mouthwash" that you can get a prescription for and you can swallow it.  I got some and took a smell of it.  The smell alone deterred me from even trying it because I knew I'd probably barf it up - LOL!  My SO dipped his finger into it and tried it....wasn't impressed and made a face.  I was hungry but maybe not hungry enough.  Or brave enough, I might say.  Nice thing is that this side effect begins to ebb 10-14 days after your last treatment so it's not forever.  Hang in there!

 

[AleHondaa]

Good news, it seems to be going away but very slowly. Yesterday and this morning were very awful to go through but it’s not as bad as it was. I was able to eat a sandwich which is different to the soup I’ve been chowing down lol. Aiming for a pizza sometime this week so hopefully it heals fast! As for fatigue, none had. I’m moving around good, my leg feels a tad bit tired but I was able to go out for a little bit today and it felt good. The road to recovery is definitely began. 
 

The more I got through this, the more I realize everyday that my youth is definitely on my side. I’ve seen your guy’s story in similar situations that what I’m going through and it seems so hard and so far I’ve only had to endure a portion of it. Thank you for keeping me going every day, it really helps me out. ❤️

[Rower Michelle]

Ale, 

That's great news, it sounds like you are starting to turn the corner.  You might want to check out Andrew Weill MD's Anti-inflammatory Diet.   Some of my friends who have had radiation have found it helpful.  I've been following for a few years and feel my energy levels are better.  Unfortunately, it's as you suspect, lots of vegetables, so the "fun" foods aren't on the list.   But in this battle you need every weapon at your disposal: 

https://www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/dr-weils-anti-inflammatory-diet/

 

 

[LexieCat]

Great news to hear, Ale! I think your youth is definitely on your side in terms of withstanding some of these medical assaults, lol. 

Go easy with pushing it before you're ready--pizza will still be available a couple weeks from now.  

[Sandy N]

Great news, Ale - and it seems your spirits are higher these days.  Keep them there....I've been told more than once that attitude is a good part of the battle!    

[Jesse L.]

Lots of folks concerned about you out here as easily seen by the number of comments... and you must be feeling better and that's great! Keep the faith, you'll be alright!!

[TJM]

I vote double pepperoni and fresh tomatoes.

In fact. Sounds so good I'm cooking a frozen pizza!

Peace

Tom

[Rower Michelle]

Hi Ale,

Just saw the American Lung Association is having a virtual patient meet up on May 11th.  One of the break out sessions is dedicated to advances in HER2 lung cancer.  Thought you might want to check it out. 

[AleHondaa]

Hey all, 

I feel as I need to vent a lil bit. The closer I get to chemo day, the more scared I get. I don’t know what to feel or believe in. I’m so worried that it isn’t gonna work, I know I can’t have that mindset but it’s always crossing my mind. I know I’m young and it’s definitely helped out with the other treatments but I feel so out of it.. 

Other news, the side effects from radiation are slowly going away but it sure is hell. I can barely speak without some sort of mucus buildup and I’m always spitting stuff out it’s annoying. It still hurts to eat but definitely not like before. I’m so over this, dealing with the brace on my neck is way better then the pain of not being able to eat and drink things. Part of the reason why I’m feeling so off lately.

Im glad to see that there’s some advancements in the mutation they found, I’ll pay close attention to it, perhaps there’s a silver lining coming soon. Thanks for the lookout.@Rower Michelle
 

Thank you ❤️

[LexieCat]

Hang in there, Ale. I had a lot of trepidation when I first started chemo (having escaped the experience the first time around), but it was WAY less unpleasant than I feared, and when I went for that first scan and saw that my tumors had shrunk WAY down and my lymph nodes normal-sized, that made it even more tolerable.

Vent away anytime, though--we all need to now and then, and you've had an awful lot of stuff going on.

[Judy M2]

Ale, that esophagitis is enough to get anyone down. It's awful but it does get better. You'll be surprised that you feel good on chemo days because of all the drugs (and possibly hydration) they give you at each infusion. I used to stop at Wendy's on the way home from chemo as a treat until my esophagitis got too bad. Make sure you have anti-nausea meds (from the oncologist) and also OTC meds for constipation. When you get fatigued, rest. Any changes in taste are temporary. Everything will settle and you'll eventually know what to expect after each infusion. You've got this. 

[Sandy N]

21 hours ago, AleHondaa said:

Hey all, 

I feel as I need to vent a lil bit. The closer I get to chemo day, the more scared I get. I don’t know what to feel or believe in. I’m so worried that it isn’t gonna work, I know I can’t have that mindset but it’s always crossing my mind. I know I’m young and it’s definitely helped out with the other treatments but I feel so out of it.. 

 

Thank you ❤️

Chemo can be daunting and terrifying at first.  But it really isn't that bad.  They will shoot you up with anti-nausea meds prior to beginning the drugs.  It's not a bad idea to have prescription anti-nausea meds as well but try to go easy on those if you can.  They cause constipation which in and of itself can create nausea.  Some chemos do, too, so that's something to keep in mind.  You should get "chemo ed" by one of the nurses or your onc prior to your first infusion and they will let you know what you might expect.  Not everyone experiences all of the side effects.  Some do but I'm going to guess that most don't experience all of them. 

I use my chemo appointments as "me" time.  I bring a good book (nothing like being in the middle of a good book) to read and just relax.  Hang in there.  This is just another step in giving this nasty tenant its eviction notice!   

[Jesse L.]

Hey...following your threads on here and after getting my first infusion on 4/5, I can say for a fact that the information you've got from everyone is pretty much right on the money. Oh, for sure I had my fears too (still do really) and to be honest the chemotherapy can make you feel like crap at times, but it's a whole lot better than the alternative. OK, I got it...why me but then again why not...there's no guarantees out there and all of us have to take life as it comes.

Just be committed and stay in the fight. It definitely makes a difference having this crowd to talk to...you know, the human side of this disease. Together we can make a difference in this disease as long as we pass along our experiences to others... Never forget that your input and life is important to so, so many...    

[TJM]

I found radiation to be more impactful to me than Chemo. I had a crushing fatigue the last two weeks. I managed to get thru chemo with almost no issues (had to skip one treatment hue to blood counts) and few side effects.

So...in my book you already have done the hard part!

Peace

Tom

[AleHondaa]

I’ll be surprised if the radiation is tougher. I took it on like nothing other than the esophagus issue. It’s still going to scare me, but getting some reinsurance that it isn’t as bad is somewhat reliving. As well as today as definitely easier with the esophagus and I believe it’s starting to go out. I was able to talk a lot more and eat better today which is progress.  I also stated driving again, my neck has definitely felt a lot better since the initial fracture, I just need to get back to working. In due time 💪🏼
 

[Jesse L.]

All the input available in these forums only gives you the wide gamut of how the disease and it's treatments affects so many. Everyone is so different, but the one thing that stands out is that no matter what we're all taking the steps necessary for a positive outcome. Even if it sucks, we're still in the game! 

So far my chemotherapy has caused the usual nausea and fatigue issues, but it's all doable. You just have to compensate and keep the faith...treatments are usually not forever. Well, sometimes I guess, but in those cases much consideration is given to the a person's ability to stand the treatment in the long term. Medical purpose is not to make a person suffer...even though sometimes we think so! 

Stay with it and stay in touch... 

[LouT]

It's good to vent and also good to realize that while some stages of our treatments (regardless of the form) are really uncomfortable most of the symptoms are temporary (sometimes things like numbness and pain can go on for quite a while).  You're doing well getting through this and I look forward to your next update.

Lou

[AleHondaa]

Well today’s the day. I’m still not ready and I’m absolutely terrified. Wish me luck today please, I’m gonna need it. My throat seems to be 80% cleared up now, not much pain anymore and I can eat somewhat normal. I still have a bunch of mucus but not as much. 

[LexieCat]

Good luck, Ale! I think you'll be pleasantly surprised at how uneventful it is. 

And I'm SO glad you're feeling so much better. I think that probably bodes well for your ability to tolerate treatment.

[Judy M2]

Good luck, Ale! Hope everything goes well. 

[AleHondaa]

So it was postponed because of my labs. My platelet count was too low for me to start today because of the radiation. So I wait another week. A lil relieving but still was kinda good for me to start now. I have the full scoop of what I’m getting. Keytruda, carboplatin, neulasta, pemerotrixin (I think that’s how it’s spelt). Also it sucks how you can’t be sedated during the infusion. That’s would’ve been nice. I also I have to scheduled for the port which wasn’t for today, so it may have worked out for the better. 

[LexieCat]

I think you mean pemetrexed (AKA Alimta). The neulasta is for low WBC count. I've never had to get that, but I know several people here have. The only time I had a low WBC count was when  I had my labs drawn a few days before my infusion. The re-tested the day of the scheduled infusion and by then it was back up. Hopefully as you get further out from the radiation, your WBC count will increase again.

Trust me, you don't need to be sedated during the infusion. It's not bad at all. Once you get the port accessed you won't even notice you're getting it, other than when the nurses change the infusion bags/flush the port/take your vital signs. And none of that hurts at all. 

[Judy M2]

Agree with Lexie. The infusion process is actually a boring time, so bring stuff to occupy yourself. My infusion center had individual TVs, and the recliners were comfy. For your throat, try to stay away from dairy products until it clears up. You'll do just fine.