NSCLC 22years old

[AleHondaa]

I just had my first round of treatment today, it went well. However I’m feeling pain in my neck area and it’s very hard to move around. I saw my doctor and he said it may be fluid removed from the biopsy coming back. So I hope it goes away so I don’t have to deal with it. 

[Shella677]

Hi! I’m glad to hear your first treatment went well. I don’t have any advice as I’m awaiting a treatment plan myself, but your situation sounds similar to mine. What stage have you been diagnosed at?

[AleHondaa]

They haven’t given me a stage yet. But I would think it’s a high 3 or 4 because of spread. Also does anyone know if nausea and vomiting is normal after the first radiation treatment? I haven’t ate much all day and I got the treatment done and I’ve thrown up twice so far. 

[Judy M2]

Ale, I didn't have that reaction to radiation, but your doctor or NP can certainly prescribe some anti-nausea medication to alleviate it. Please let them know about this. 

[Sandy N]

Thank you for keeping us posted.  I don't have an answer for you regarding your nausea and radiation but I have heard that can be a side effect.  Do get a prescription for some anti-nausea meds.  Just a head's up....if you go that route, they can cause constipation so get a good laxative as well as constipation can make a person feel nauseous as well.  I don't know if chemo is in your future but, if so, they will infuse you with anti-nausea meds before infusing you with chemo and that's a real God send!  I hope everything goes well for you and please check in often.  

 

 

[TJM]

On 3/18/2021 at 6:29 PM, AleHondaa said:

So they haven’t talked about me getting any radiation on my lung. Just the spots in my back area. I don’t know if that’s a bad thing or not 😕.

That is better IMO. I had (optional) adjunctive radiation after Chemo. I asked the radio guy what he was "aiming" at since I was tumor free. He basically said the general area where the cancer had been while avoiding the dangerous areas (heart, throat). I found that form of radiation more impactful than Chemo. Mostly intense fatigue. If I could have a redo I would NOT have done it for two reasons.

First is, I did not have a real informed understanding of possible side effects. I started going "backwards" last fall. Was it because of the radiation? I will never know.

Second reason is I feel like I expended one possible tool. They tend to not want to re-radiate areas that have already been radiated with adjunctive radiation therapy.

I am all for targeted radiation...it is both much more , well, targeted and I think much more effective.

Peace

Tom

[AleHondaa]

Okay so I have a big update, they found a mutation but it’s not a common one. The mutation is HER-2 (idk if that’s the correct spelling). Found mainly in Breast cancer patients, also found in lung cancer too but not as common. Currently there is no FDA approved medicine to combat this but my oncologist is highly considering clinical trials since there is most likely something that could help me. If not, then I have to get the traditional chemo and immunotherapy combo. My doctor also said he can see me doing good since I am younger and other wise healthy. I’m so glad I got some good news today. If there’s anything about this I should know please inform me. Thank you everyone! 

[LexieCat]

Sounds like good news to me! I know they are studying treatments for HER2, so even if you don't start out with something specific to your mutation, if you have later progression or recurrence, there will probably be new drugs to try.

 

[AleHondaa]

I do really hope so, let’s hope for the best!

[AleHondaa]

So I had my second treatment postponed today because of of pain I had in my upper neck area. They gave me Percocet and moltrin, the Percocet did a number on me and caused me to almost faint and fall. I was at my appointment when this happened and taken to the hospital immediately. Since I’ve been here I have gotten a ct scan done and they’ve found that I’ve fractured my neck. Now I’m stuck in the hospital until I get some answers. This is the worst I’ve ever been through, has anyone been through something similar? 

[Judy M2]

Yikes, no. Good thing you were sent so quickly though. Fingers crossed for you. 

[LexieCat]

Not quite the same, but the week I was scheduled to get my port right before starting chemo, I had leg cramps in the middle of the night. I sat up to rub my leg and fell off my bed, breaking my collarbone. Still not completely healed and it happened on Labor Day. 

Hope they get you fixed up soon.

[TJM]

Dang girl. That is just crazy. Please keep us posted.

A broken neck as a side effect is a new one for me.

Take care

Tom

[LouT]

AleHondaa,

I have not had radiation, but did suffer a fractured neck.  Years ago I was t-boned by a drunk and went through the windshield (1979, before seatbelts were required).  I can tell you the pain was pretty darned bad.  Of course I had a lot of other injuries, but the neck was the "star of the show".  You medical team will need to titrate your meds so you can have reduced pain and still be able to navigate without falling.  My only advice is to be careful, follow the medical team instructions and know that the neck pain will improve over time.

Lou

[AleHondaa]

The radiation did not cause this. I felt the pain before I started and then it got unbearable. I was in the hospital when they said I have a fractured area in my neck. It does suck a lot, I have to rely on people to help me for a lot of things. Thankfully I have my lovely girlfriend by my side helping everyday she can and I have my parents. I really do hate relying off of others, to be honest it puts my self esteem down a lot. But it’s just a bad pothole in a long road, I’ll get through it. (I can’t drive too and I love driving) 

[Jesse L.]

Just thought I'd throw my two cents in for what it's worth... I can't even relate to what you're going through as I'm 64 with a minimal (if any cancer can be called that) case compared to yours. In general though I would tell you to hang in there though...so, so many have done so and beaten this thing.

I guess the trick for me was to catch it quickly when it's easier to treat and that was done simply because I am older in the first place with other certain risk factors. A thing one doesn't think anything of at your age... Nevertheless from now on you will be more in tune with your body for the rest of your days...I can tell you that for sure.

My only advice for what it's worth is to learn everything you can about what you're about, what you're fighting and how you're going to beat this thing. There's lots of onto out there that you can learn from. That way you can become your own advocate, talk intelligently with your cancer team, and together come up with a viable plan of of attack to kill the beast. A lot of my team is amazed at what I've come to know since my diagnosis at the beginning of 2021 and they really do work with you better when they know you're that self interested. 

Keep your head up and keep fighting. It seems as if you have a close family and folks pulling for you but now you have the rest of us out here doing that for you as well!!

[KM_NRP]

@AleHondaa  Just a note about narcotics (ie, Percocet and many others but does not include Motrin(that's an NSAID)).  Eat when you take pain meds. This is more help to minizine stomach upset. You maybe too sensitive to the dose they gave you or the medication.  There are many pain meds out there, so make sure you team is aware. If you start to get dizzy, sit or lay down.  That will help with the blood pressure dropping. 

Get well and get out of that hospital! Good vibes for you. 

~K

[LexieCat]

Glad you have a good support system. You might want to discuss with your oncologist whether/how your cancer treatment might affect the healing of your fracture. My docs think that's why my collarbone hasn't healed yet (though I have no pain from it, just a bit of weakness on that shoulder). They give me regular (every three months) infusions of a drug called Zometa, which they also use for bone metastases and for osteoporosis (both of which I have). When you think about it, the chemo drugs attack fast-growing cells, so it makes sense they would interfere with the healing of a broken bone. Drugs like Zometa (or Xgeva is another) can help with healing. 

I'm the queen of accidental injuries to take my mind off the cancer--I also managed to shoot myself in the eye from a spring-loaded link while resizing a medical alert bracelet, lol.  Not to mention other maladies common to us old people, like arthritis and cataract surgery. It's like, REALLY? The cancer treatment isn't enough? Nothing to do, though, but get through it.  Hang in there.

[Judy M2]

Ale, lean on whoever you can during this time. I'm sure your loved ones and friends will want to help. This too shall pass. I was fortunate to have a lot of support last year when I needed it. You will drive again, you'll know when you're ready. 

[AleHondaa]

I’m trying my best to stay a float. It’s really hard being in this position. My hospital wants me to see a neurosurgeon which can’t be good. I have to get another mri and I hate those. I just can’t catch a break, it makes me think what did I do in life to deserve this. 

[LexieCat]

Aw, man, I know the feeling--sometimes it feels like when it rains, it pours. The neurosurgeon referral is probably to make sure you don't do any permanent damage to your nerves/spinal cord. I suspect they will want to stabilize your cervical spine. It's possible you'll have to wear something to hold your head in a safe position for a while. It sucks, no doubt about it, but you can do it. 

Try to think about it this way--things are being addressed before they become much worse. Even if this winds up delaying your treatment a bit, that usually doesn't pose a big problem. Lots of lung cancer patients have other issues going on at the same time, and they figure out ways to work around it.

[Sandy N]

14 hours ago, AleHondaa said:

The radiation did not cause this. I felt the pain before I started and then it got unbearable. I was in the hospital when they said I have a fractured area in my neck. It does suck a lot, I have to rely on people to help me for a lot of things. Thankfully I have my lovely girlfriend by my side helping everyday she can and I have my parents. I really do hate relying off of others, to be honest it puts my self esteem down a lot. But it’s just a bad pothole in a long road, I’ll get through it. (I can’t drive too and I love driving) 

Wow, what a way to discover a fractured neck!  I'm happy you were in a place where you could definitely be helped right away.  You have a lot coming at you right now but just take everything one day at a time.  These things will pass.  And you have some hopeful news from your oncologist so there's a silver lining on one of the clouds.  Hang in there!  We're all pulling for you!  Also, THANK YOU for the regular updates.   

[Sandy N]

1 hour ago, AleHondaa said:

I’m trying my best to stay a float. It’s really hard being in this position. My hospital wants me to see a neurosurgeon which can’t be good. I have to get another mri and I hate those. I just can’t catch a break, it makes me think what did I do in life to deserve this. 

You did nothing to deserve this.  

[LUNGevityKristin]

Sending a gentle hug. We are all sending you our love and support!

[AleHondaa]

So they’re still continuing the treatments regardless. I just long for this the go away fast, it’s an awful thing to go through. I felt in a dark place this morning but I’m feeling better now mentally. It’s just another hurdle I’m going through.

Thank you to everyone for your support, I really appreciate it. ❤️