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NSCLC 22years old


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Hello all,

Within the last month I was diagnosed with Lung cancer NSCLC. I’m only 22 years old and this has impacted my life tremendously. The way I look at everyday things feels to be like if I was on a checklist for the days I may have left. I haven’t found out what sort of mutation they are attacking if there is one but I’m waiting on those results. My oncologist had said that this isn’t curable or removable unfortunately. But I will still remain as positive as can be and try to beat this thing. I’d love to hear some of your stories as well and to give me an idea what kind of road I have ahead of me. I’m too young for this and I want to have a family one day so I won’t give up on that dream. Thank you all for being here <3. 

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Wow, Ale, I think you're the youngest patient/survivor I've run across so far. I'm sorry you are dealing with this, but don't start counting your days left just yet. One of our members was just pronounced "cured" after more than 17 years from his advanced cancer diagnosis, and there are others here 15-20 years out and still doing well. The good news is that they are making progress against lung cancer every day. "Incurable" doesn't mean "untreatable"--for many people lung cancer can be treated like other chronic diseases. 

For us to be as helpful to you as we can, a bit more info would help. Do you know what kind of NSCLC you have? Adenocarcinoma, squamous cell, something else? You mentioned they are looking for mutations. Are you receiving treatment currently? If so, what kind? Sounds like you had a biopsy, if they've ID'd it as NSCLC. Have you had a PET-CT scan? Have they given you a Stage for your cancer? Has it spread to any other locations?

Glad you found us--this is a great place for info and support. 

 

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So they haven’t given me a stage yet. They said it’s Adenocarcinoma. It has spread to my lower back and my neck area on my back. I’m glad to hear that there is that long of a prolonged state with this. They are going to start radiation treatments to potentially get rid of the spots on my back area and potentially remove the lower area one. I also took interest to do clinical trials if my treatments don’t do as well. But I have faith my body will do it’s job and fight this off. 

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Do you know what the "spots" on your back/neck are? Are they lymph nodes or spots on your bones? You didn't mention a biopsy--without that, I'm not sure how they can be sure it's NSCLC/adenocarcinoma, rather than some other form of lung cancer.

I don't mean to give you the third degree, here, just trying to get a handle on where you are at in terms of diagnosis/treatment. 

Radiation can be very effective, but most people also have chemo and/or immunotherapy or targeted treatment (depending on mutations/biomarkers). If they are still doing testing (which I would assume involved a biopsy of some kind), then it makes sense to hold off on drug treatment till they have all the relevant info.

Incidentally, you do want to have conversations with your doctors about what you might need to do to preserve your fertility, since cancer treatments can affect that. Maybe you've already discussed that with them. 

Are you living with family, or are you on your own?

 

 

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It’s okay I’m glad to share any info needed. They didn’t specify what spots on my lower back but the found a mass on my left lower portion on my back. The one on my neck is on the spinal area on my back towards my neck. It has spread to my lymph nodes on my neck. Also was mentioned was lesions on 2 of my bones on my neck. They performed 2 biopsy’s, one on my neck and one on my lower left back. They got most of their info off of the second biopsy. They’re giving me radiation for those spots not the lung. I’m still waiting for the pathology to come back to see if they can target a mutation. I’ve already discussed and banked a sample with a fertility place locally. I live with my parents and my sister. They’re a great support system on top my loving girlfriend.

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OK, sounds like your docs are doing what they should be. Believe me, what you're going through right now is the toughest part for a lot of us--just figuring out what's going on and waiting for all the testing to be done. Glad you've got a good support system in place--you've got all of us now, too. 

Because you ARE so young, there's a good chance you'll have a targetable mutation. Lung cancer in younger people seems to be especially likely to be driven by mutations. But fear not, there are effective treatments for many different flavors of lung cancer. I don't have any targetable mutations, but have had a really great response to the chemo/immunotherapy I've been getting. 

Keep us posted, k? We'll all be rooting for you. It's kinda quiet here tonight, but there will be others weighing in shortly.

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I’m really hoping that there is a mutation. How effective is the pill to get it to shrink and potentially eliminate it? Or how effective is it in general? I’ll definitely keep all of you posted, you guys seem to be a great support system by far. 

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There isn't just "one pill" that targets mutations. There are a number of different ones, targeting different specific mutations.

And any of them can be highly effective to varying degrees. But no two people--even with the same type/stage of cancer and the same driver mutations--responds in the same way. All medications--chemo, immunotherapy drugs, and targeted therapy drugs--carry a risk of side effects. For some people the effects are severe enough that they can't continue with that particular drug and they have to switch to a different treatment. And some people--even those who can tolerate the effects--simply don't respond, for unknown reasons. The cancer progresses and they, too, have to switch treatments.

This is why, once you begin treatments, you will have scans every few weeks to monitor how you are responding. For instance, I get an infusion of chemo and immunotherapy every three weeks. Every 9 weeks (or every three infusions) I get CT scans and see my oncologist, who looks at them and tells me how the drugs are working for me. So far, for me, they've been working well. 

Lung cancer is very tricky, though, and eventually many drugs stop working because the tumor cells mutate to avoid the effects of the drugs. That's often when people are switched to a new treatment.

I always say one of the most helpful things for me in dealing with my lung cancer is to cultivate a flexible mind-set. A bad test result isn't necessarily disastrous. A few good test results don't mean that won't change in the future. Yeah, it sucks to have all that uncertainty, but this disease is full of uncertainties, and accepting that fact will make it a bit less frustrating. We all get anxious when we go for our scans--people call it scanziety. The important thing to remember is that there is often a Plan B and a Plan C, if Plan A doesn't work out. It's also important, at times, to get a second opinion when it's appropriate--when there are serious questions about the best approach. 

Here's a link to a lot of good info on lung cancer in general: https://lungevity.org/for-patients-caregivers.

 

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Ale,

Lexie has given excellent advise. Sorry about my late response. We've have a general internet outage in our town for some unknown reason.

The radiation treatment you mentioned ("They are going to start radiation treatments to potentially get rid of the spots on my back area and potentially remove the lower area one") is very, very effective. It is a form of precision radiation and there are many technical ways to administer this treatment. Here is some more information. Navigate to this link, and read information at How is radiation therapy administered. About halfway down the linked page is information about Stereotactic Body Radiation Therapy (SBRT). This very likely is the method your radiation oncologist will use to zap the "spots on your back area and remove the lower area one". This treatment is very effective. I owe my life to it.

Additionally you will likely have some form of chemotherapy as Lexie mentioned. Your first treatment may (likely) be adjuvant chemotherapy. Here is a quote from  Lungevity.org, found in Lung Cancer 101 that defines adjuvant chemotherapy. "Adjuvant chemotherapy: After surgery or radiation therapy, there may still be some microscopic cancer cells left behind that cannot be seen on regular computed tomography (CT) scans. When chemotherapy is given to kill those microscopic cancer cells, it is called adjuvant chemotherapy." Here is the link where you can read more about it. Read the material under the heading: When is chemotherapy given for lung cancer. This form of chemotherapy is designed to sweep the blood and lymphatic systems of lung cancer cells while the precision radiation does the actual killing of the spots on your back and other places. Adjuvant chemotherapy is often a weaker dose than non-adjuvant therapy. Thus you may not experience any adverse side effects. My first line treatment was radiation and adjuvant chemotherapy and I didn't even lose my hair!

This is a great place for questions. I do hope your radiation zaps all your spots.

Stay the course.

Tom

 

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I don't have any words of wisdom to add as Lexie and Tom pretty much said anything I could say.  Just wanted to respond to your post as a gesture of support and caring.  

The one thing that I found scary was the unknown.  Like "what comes next" and all that jazz.  The testing period is the one thing that tried my patience the most because I wanted to get going on treatment.  ;)  But the testing is absolutely necessary so the docs know which angle to attack the Big C.  I found that once treatments began and I was more informed, things were a little easier to deal with.  One thing that I'm going to say is don't pay any attention to ANY statistics you may see on the internet, no matter where you see them.  As Lexie and Tom have said, there are so many treatments out there and even more are being developed.  We have hope now.  You are in the company of many hopers. :)  Refuse to lay down in front of this disease and give it all the fight you've got.

I'm glad you found us.  I have been blessed by the many wonderful folks on this forum and I'm sure you will be, too.  Please keep us posted because we really DO CARE! 

Hang in there!  

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Hi Ale,
Wishing you all the luck in the world. I know it’s scary but with all the different treatments available I’m sure your doctors will nudge you in the right direction. Mine did. I started out with stage IV NSCLC and now I’m NED (no evidence of disease). There is hope. As @Tom Galli’s signature says Stay The Course. Please keep us in the loop. Peace, light and great scans to all. Claudia. 

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On 3/13/2021 at 10:44 AM, AleHondaa said:

I’m really hoping that there is a mutation. How effective is the pill to get it to shrink and potentially eliminate it? Or how effective is it in general? I’ll definitely keep all of you posted, you guys seem to be a great support system by far. 

Hi Ale,

A belated welcome from someone who is actually one of those mutants.  I was diagnosed in September, 2018, the ALK mutation was identified about a month later. It was an agonizing month. 
 

Like you I had some small spots on my spine along with my right hip and ribs.  
 

When I started the targeted therapy, that cough that had been worsening for months (broken rib too) disappeared within an hour.   We were astonished.  After my first scan there were improvements noted and by April, 2019 I was No Evidence of Disease (new way of saying remission).  
 

I would urge you to contact the Go 2 Foundation when your biopsy results come in to arrange a second opinion.  Since there been more advances in lung cancer therapy  in the last three years than the last thirty, it’s difficult for medical oncologists to keep up with the pace of scientific developments.  
 

If you look for the Go 2 Foundation on YouTube you will find a number of helpful videos in their Lung Cancer Living Room.  
 

I would also like to suggest two books to give you a road map on how to manage this disease: Greg Anderson’s: Cancer 5O things you should do and Lorenzo Cohen’s Anti Cancer Living.  
 

In these two books I found a wealth of stuff the doctor didn’t tell me about that was super helpful. 
 

Once the treatment plan gets on the way, you will feel a greater sense of control.  Brighter days are coming. 
 

Michelle

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Hello there - just chiming in to say hello and welcome. In my opinion, the roughest part is the wait for a plan. As others have said, you'll likely have some sort of chemo so let us know. Some of us have had a chemo cocktail or two and can give you some tips. I just celebrated 5 years as stage IV adenocarcinoma, and I've been cancer free for 2+ years. 

Hang in there.

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Thank you to everyone showing love and support! I really do feel more motivated to beat this thing. I officially start radiation treatments on Monday. Any tips with these? Should I eat differently or ingest more protein (which I’ve been doing)? So far I haven’t a coughs or anything of that nature. Other then small uncomfortableness in my left lower back I’ve felt fine.  

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I never had radiation, so I can't share any personal experience, but many others here have. Meantime, here's a section of the forum that deals specifically with radiation: https://forums.lungevity.org/forum/55-radiation/

I, too, was lucky enough not to have any symptoms of lung cancer, itself--never had a cough, shortness of breath, etc. Kinda makes it harder to get your head around what a beast this thing is. I have a feeling your youth and your otherwise good health will be a big help in dealing with all of this.

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Hi Ale,

I wish we could just be given a list of “here eat this!”   I do see an integrative oncologist who recommended the Andrew Weil MD Anti Inflammatory Diet.   Generally I avoid sugar and any processed food- but the bottom line is you do what you gotta do to get through treatment.

 For sore throats I use Manuka honey form New Zealand with a high floral count mixed in with warm lemon water.

Of course the handiest little gadget is my Magic Bullet-along with the Big Book of Juices   (Rather than juicing just throw the stuff in the Bullet) 

I think this will help get you started, once you start treatment there’s lots of “food as medicine” tips to address any number of issues that may come up  

You got this.... 

Michelle

 

 

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@AleHondaa, expect some fatigue from radiation. I had 30x and I think the fatigue started around day 10. They irradiated lymph nodes right along my esophagus, which gave me painful esophagitis, starting 2 weeks in. It was awful, and my radiation oncologist wasn't too helpful about pain meds. To make a long story short, I eventually connected with a great palliative care doctor and got the pain under control. The good news is that both the fatigue and esophagitis cleared up. The radiation did leave me with some inflammation and mild pneumonitis that PET scans picked up, but that too has subsided. All in all, both radiation and chemo were effective, and I'm now on a targeted therapy for my EGFR mutation and doing very well. You should see good results too. 

P. S. Everything dietary went out the window with my esophagitis, because I never knew what I could tolerate from moment to moment. It would take me an hour to drink an Ensure or Boost Soothe. They do recommend protein, but otherwise do whatever you can to keep your weight up. 

Edited by Judy M2
Added P. S.
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16 hours ago, AleHondaa said:

Thank you to everyone showing love and support! I really do feel more motivated to beat this thing. I officially start radiation treatments on Monday. Any tips with these? Should I eat differently or ingest more protein (which I’ve been doing)? So far I haven’t a coughs or anything of that nature. Other then small uncomfortableness in my left lower back I’ve felt fine.  

I had 30x radiation on my "Mr. Nasty" (the name I gave the evil little imp that dared to take up residence in my lung!!!) and it eradicated it, leaving behind what we call the "burn pile" (scar tissue).  I felt some fatigue (but I was also doing chemo once a week for 6 weeks as well) but the esophagitis is what was tough.  It's sometimes a necessary evil in order to reach the tumor.  Right now I'm going to tell you to eat eat and eat what you can.  My esophagitis hit about halfway through the radiation process and it started to abate about 10-14 days after my last treatment.  Even eating soft foods is going to be difficult (and drinking some things as well) as you'll have Mt. Vesuvius erupting in your chest.

There is a "magic mouthwash" that you can have prescribed to you that you can swallow prior to trying to eat.  That's supposed to take some of the misery away.  I had gotten some but just the smell of it - blech!  Couldn't bring myself to go there.  My significant other put a dab of it in his mouth and made the nicest sour face you ever did see!  So this is an option.  I did find that chewing things to a pulp and taking a drink of milk or water immediately after each bite kept the food from hanging around in my esophagus.  Kind of had to muscle my way through eating sometimes. 

But take heart....this is going to be well worth it.  Just keep thinking "burn pile".  ;) 

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That sounds right to me for now, the radiation is typically used for the bones. In my case, I did seek a second opinion where radiation on my spine was not recommended pending the biomarker biopsy results.  I have the ALK mutation. Since ALK targeted therapy is very good at knocking out cancer cells on the bones, I started targeted therapy in October and by February, the bones were healing.  It took about a year or so before no cancer was detected on the scans.  
 

Radiating the lungs can also be an option but that typically follows chemotherapy or immunotherapy.  There’s lots of tools in the box for doctors to use, even surgery in some cases.  Generally the oncologist looks for the most efficient and effective agents initially then may opt to add therapies along the way if needed.  Seems these days the what’s next options gets a little longer every year.  (Last year the FDA approved something like 11 or 12 new lung cancer therapies).  

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16 hours ago, 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 😕.

Radiation can work miracles.  I'm happy that you have that option!  :) 

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