NSCLC 22years old

[TJM]

1 hour ago, AleHondaa said:

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. ❤️

It's a marathon, not a sprint. Best to get your mind thinking that way.

It's worth it tho

Peace

Tom

[AleHondaa]

Update for my people’s lol 

I had my appointment with the neurosurgeon and it seems that there’s growth on my c2. Good thing is radiation feels like it’s being effective since I’ve been feeling a good amount of relief recently. If that’s the case then I don’t need surgery and the bone will be able to heal on it own. I haven’t had any pain recently which is good and it’s really just discomfort now. Thankfully things seem to be going in a good direction. If anything I’ll be needed more radiation but we’ll see. 🙏🏼

[LexieCat]

I was wondering whether you might have a bone met that caused the fracture. My osteo surgeon I've been seeing for my broken clavicle is convinced it was due to an undetected bone met (pathological fracture). My oncologist doesn't think so--he thinks it was just the fall (though it should have healed by now under normal circumstances).

Either way, hopefully the treatment will address it so you don't need surgery. Fingers crossed!!

[ConcernedSib]

Wow. Tom and Lexie are just great for offering their experiences and knowledge. Others in this group have given wonderful support to me and others.

Just want to ring in re: radiation therapy. My sisters diagnosis on Dec 2020 was BM NSCLC. For the brain, she received 2 weeks of WBRT. Her recent MRI results showed shrinkage of the lesions in her brain. Hooray! In late January, she started Trabecta (just recently approved for her mutation last spring) for her lung tumor. So far so good, as far as virtually no side affects. She meets with her onc to get blood work and more follow up later this week. Her attitude is good and she’s fighting the fight in her 60s.

Just read an article in The Atlantic re: the future of messenger RNA and the potential to help with tumors and cancers, as well as finding medicines to cross the blood brain barrier.

You have youth and science on your side. And it sounds like you have a good team of professionals and a good support family.

You will have good days and bad days on your journey going forward. We will be here to support you.

All the best for you.

 

 

 

 

 

[ConcernedSib]

Also my sister is receiving palliative care which is helping her tremendously. 

Palliative care is specialized medical care focused on relieving symptoms and stress to a serious illness for any age and any stage of treatment.

For more information and Web site:  getpalliativecare.org

[AleHondaa]

Today I met with the doctor for clinical trials. Unfortunately, there is no clinical trial or pill I can be given for this. So it’s resorting to the traditional chemotherapy/immunotherapy. I’m so heartbroken right now, I feel like this just gets worse and worse by the day. I know it’s a process but the more news I receive just seems to be worse every time. Hopefully this will be effective with me and take care of it. I just don’t want to be strapped up to an iv for the rest of my young life. Hopefully there is a silver lining out soon.. I also want to thank you guys for being there for me, I know all of us have a huge battle ahead, including myself.

[LexieCat]

I was disappointed, too, that I didn't have any targetable mutations. And right now, there don't seem to be any suitable clinical trials for me, either.

BUT.

I've responded VERY well to the chemo/immunotherapy, and I've spent between 2 and 4 hours once every THREE WEEKS getting my infusion. Not exactly my whole life. Overall, the pandemic has limited my ability to enjoy life more than my cancer treatment has. 

I don't mean to be dismissive about how this throws a monkey wrench into life--especially when you're young and there is so much going on. It sucks--I won't argue that point. But having a lack of mutations or (current) clinical trials isn't the worst news. There's no reason to think you won't respond well to chemo/immunotherapy. 

 

[AleHondaa]

I guess we’ll have to see what the treatments do. I’m not trying to be discouraged, but I am disappointed this is all going on. Just the way these doctors put it just makes it seem so conclusive and it gets to you really bad.

[Lisa Haines]

Dear Ale

    I am very sorry that I somehow missed reading your story!  Please know that many of us here are doing well with Lung Cancer even those of us who are Stage IV. 

   It does however break my heart to think of someone as young as you (22) having to go through this.  It is never easy but you are so young and for me that always seems to make me feel very sad and that it's very unfair.  I hope very much you will do well with your treatments and know it can take time to find the one that works best for you.   

   You have come to a wonderful group and you'll find lots of support here as well as in any of LUNGevity group on Facebook.   Please know we ALL care and will be keeping you in our thoughts. 

    Please know that this can all feel very overwhelming in the beginning -- there is just so much going on and it's LOT to take in and deal with.  Please don't hesitate to reach out for more support -- we all TRULY understand how  you feel.

     Sincerely,

       Lisa

[Lisa Haines]

PS:   I never had a mutation that was targetable myself, I have KRAS v12G and there is not treatment specific for that or any great clinical trial.  However, I had a excellent response to Immunotherapy and I am now NED and just celebrated my 6th Cancerversary earlier this week.   There are many Stage IV patients living long lives and being treated as if we have a "chronic" health condition.  I HOPE you too will have a wonderful response to your treatments.   My outlook started with Grim as I also had a brain tumor and pulmonary and it all came on with no warning or symptoms.  You can click on my icon to read my full story!

 

     Lisa

[TJM]

Ale,

Damn right I would feel disappointed and pissed. So far you cant catch a break

Ok...we got that out of the way. What is the next treatment plan?

Peace

Tom

[AleHondaa]

Thank you for sharing this story with me @Lisa Haines. It’s really inspiring to see that someone as yourself faced such a terrible diagnosis and it’s gives me so much hope that I’ll be okay. It’s gonna be a long fight but I’m going to stick with it. 
 

As for my next step, I’ll be doing a follow up with my med oncologist to proceed with treatment with I finished radiation. I should be radiation after next week and I’ll probably start my chemo afterwards. Then from there I believe it may 1 time every 3 weeks.

The thing that gets me is that the doctor said 2 years of treatment until it worsens and I still don’t know how to take that in. Has anybody else had a similar response from a doc and beaten their odds? I’d love to you know.

Thank you all ❤️

[LexieCat]

Yeah, that's commonly how they express it: Treatment to continue for two years or until progression. That doesn't mean it WILL progress, just that progression or two years would be an endpoint for the treatment you're currently on. 

[AleHondaa]

Oh okay, good that makes it a lot better on my mind knowing that’s really how they express it. 

[Lisa Haines]

17 hours ago, AleHondaa said:

Thank you for sharing this story with me @Lisa Haines. It’s really inspiring to see that someone as yourself faced such a terrible diagnosis and it’s gives me so much hope that I’ll be okay. It’s gonna be a long fight but I’m going to stick with it. 
 

As for my next step, I’ll be doing a follow up with my med oncologist to proceed with treatment with I finished radiation. I should be radiation after next week and I’ll probably start my chemo afterwards. Then from there I believe it may 1 time every 3 weeks.

The thing that gets me is that the doctor said 2 years of treatment until it worsens and I still don’t know how to take that in. Has anybody else had a similar response from a doc and beaten their odds? I’d love to you know.

Thank you all ❤️

   Ale - I am very happy to help and I sincerely to wish you the VERY best!    

[Susan Cornett]

There are definitely ups and downs with cancer and treatments and all of the extras that go with it. Some days it is 2 steps forward and 47 steps back. In the first 2.5 years of my journey, I had the initial diagnosis, two recurrences and thyroid cancer. But it's been 5 years as stage IV and I'm here. I have rough days from time to time because of lingering side effects but those side effects sure beat the alternative.

Just keep coming back here. We all understand where you are. Hang in there.

[Rower Michelle]

Ale- 

People beat the odds, every day.  With each year, there's more treatments available for lung cancer.  Early on in my diagnosis my doctor suggested I read this essay: 

https://journalofethics.ama-assn.org/article/median-isnt-message/2013-01

I found this really helpful in understanding that there is a lot of hope on the horizon.   Right now, it's a day by day process, as soon as the treatment plan gets established, you will begin to feel a little more settled.  

Michelle 

 

 

 

[AleHondaa]

I finally got my treatment plan mapped out. To be honest I feel a lil bit at ease now and genuinely feel that I’m gonna make it through this. I have my good health and youth on my side with a incredible support system too. 
 

As for treatment, I’m getting 4 different drugs. I don’t remember all the names but I know there’s one called keytruda. I am scared of how it’s going to affect my body and my everyday life while my body gets better. It’s just a lot going through my head.

As an update on my neck, I’ve definitely felt improvement in movement and strength. I can feel it’s healing and the radiation is definitely helping me with all the other things I had going on. 
 

Thank you all again so much for all the info and support you’ve shared with me. If it wasn’t for the awesome Redditor that suggested y’all I would’ve been going crazy looking things up and causing myself to panic. ❤️

[LexieCat]

So happy to hear you've got a plan! Keytruda is a game-changer for lung cancer. Most people don't have serious side effects from it (a few do). It boosts your immune system so your own body can fight the cancer. When you remember the names of the other drugs, let us know--chances are some of us have had them and can give you some idea what to expect. 

And SUPER glad your neck is feeling better and that the radiation is doing its job.

It really is amazing how much better most of us feel just to have a treatment plan figured out.

I can't remember if you said you'd gotten (or were getting) a port. I HIGHLY recommend it. It really beats getting stuck repeatedly with needles. And chemo can be rough on the veins, so the port helps keep them healthy.

[LouT]

Having a plan is always a relief and give us a feeling of some sort of control again.  We know the enemy and our "army" is locking and loading to battle it on our behalf.  We need to be in there with them as well and that may be scary but you won't be alone.  

Lou

[AleHondaa]

So I tried looking for the notes and didn’t find the 2 other ones. But I know for a facts he said Carboplatin was another drug. Also they are doing a port. @LexieCat

[Jesse L.]

Let me be another to tell you that you are on the road to recovery...all the things that you mention are happening with the vast majority of us out here as well. I had a port installed on 3/24 and I start a Carboplatin/Alimta cocktail on 4/5. To be honest I'm leary of the whole works but I'm just as committed to doing it anyway. I'll be darned if I'm going to let a disease win without a fight and with the weapons out there, chances are getting better for life right along. That might not have been the case a while back but oh how times have changed in just the last few years. 

My advice to you is to learn all you can so you can become your best advocate. Ask lots of questions of everyone, your medical team, fellow patients, caretakers, and very importantly people on this forum. This is representative of the human side of cancer; what to expect both mentally and physically. We as humans are not a statistic so don't be one...survive, live, and even prosper! 

[LexieCat]

If I had to guess, Ale, you'll be getting the "triplet" of Carboplatin, Alimta, and Keytruda. The fourth drug, I'm thinking, might be something for bone mets--Zometa or Xgeva. I get Zometa every three months to strengthen my bones because of both bone mets and osteoporosis. You can ask your medical professionals next time you talk to them. 

[TJM]

On 4/2/2021 at 12:31 PM, AleHondaa said:

I finally got my treatment plan mapped out. To be honest I feel a lil bit at ease now and genuinely feel that I’m gonna make it through this. I have my good health and youth on my side with a incredible support system too. 
 

As for treatment, I’m getting 4 different drugs. I don’t remember all the names but I know there’s one called keytruda. I am scared of how it’s going to affect my body and my everyday life while my body gets better. It’s just a lot going through my head.

As an update on my neck, I’ve definitely felt improvement in movement and strength. I can feel it’s healing and the radiation is definitely helping me with all the other things I had going on. 
 

Thank you all again so much for all the info and support you’ve shared with me. If it wasn’t for the awesome Redditor that suggested y’all I would’ve been going crazy looking things up and causing myself to panic. ❤️

That was me 😁. I am so happy you decided to join the group!

[AleHondaa]

Well, today is my last day of radiation. I’m excited and nervous too, I just hope that it reminds in effect in the issues I had, but I have no doubt that’s the case. My throat has been very very irritated and hurts to swallow at times. Does anyone have some remedies for this? I tried Mylanta and it sort of helped, anything cold like popsicles help a lot but I cant just eat those. I’m gonna bring it up my doctor later on but I wanted to see if someone has dealt with it in a different way.