My updates (22 Years old, NSCLC)

[AleHondaa]

Tom and Lou,

Thank you guys for the clarity. This has been a tough road and it’s clear that it will have a mark on our mental health at one point. From what I’m seeing, it’s fatigue from the battle really, and our mental health is a cost to this if we let it. I will continue to better myself as much as I can as I go through these struggles in life. But what’s important is that I’m still here, still around and I should be grateful for this. I tend to spend a lot of time in the past, trying to realize what I could’ve done differently but really that’s most likely what has been dragging me down. I didn’t have control back then and I definitely don’t have control later on from now. 
 

Thank you,

Ale

[Justin1970]

Hi Ale 

I know how difficult your finding everything and the depression and low points certainly out weigh the highs,I also spent a lot of time in the past wondering what if things were different and recently I went through a really low stage because this disease never seems to end, I'm sure I will feel like it again and dreading it but at the moment I feel quite good and have realised I need to make the best out of the good news I have been given, I'm struggling with fatigue aswell at the moment and not sleeping hardly at all and it's really hard to motivate, thankfully my right side is getting better everyday now so I can do much more,

the depression will drag you down if you let it so its really important that you stay strong and beat it, easier said than done for sure but we are all here with you fighting so never feel your on your own because your not and if you ever need to talk or vent your anger and emotions just do it because at one point or another we have all done it, 

All the best Take care Justin 

[Izzy]

Hi Ale, I'm Justin's mum. I know I can never know exactly how you feel but I can know the sadness you must be feeling and I'm sure desperation. Jus has been there and still is to a certain extent because it can never leave you but I say to him you are living with cancer not dying from it. Every day is a fight but also a bonus that your still here. They are finding out so much more about this evil disease and the treatments are improving every day. Hang in there and keep talking to these lovely people on this forum as they really do help each other. Jus is an amazing person and proved he is stronger than he thought he was, I hope you start to feel better soon and remember your never alone x lots of love Isla xx

[Karen_L]

Two days ago, I finished my regular scan + oncology visit (every two months, yippee) and have been surprised to find myself in a bit of a tailspin of despair. I saw CancerShrink (my name for him) today and I'm feeling better, more able to focus on the present moment (which seems to be the key for me).

But I also recognize that I am just worn out, from a variety of life things, but especially with the day-to-day coping that having lung cancer sometimes seems to entail. I'm weary and down and I haven't even been having regular treatment! You have a body that's healing from the onslaught of treatment and the intense focus it takes to be positive. Hats off, my friend-- you got yourself up and out to your therapist. You're moving ahead. 

Losing your job stinks, but if it means you can take a nap in the afternoon or grab an extra few minutes in the sun or doing something you love, well then, maybe that's what you need right now. You need to focus on your health and well-being right now. It's the "right now" that's key. 

Hang in. One step, one moment, at a time, you've got this. 

Karen

 

[Karen_L]

@AleHondaa There are some great sites for AYA cancer folks. Stupidcancer.com really helped my daughter when she had lymphoma at 22.

Also, there's an insta for younger folks with cancer that's hysterical *and* also has a super podcast affiliated with it. @thecancerpatient Podcast: https://senditfoundation.org/resources/podcast/

 

[AleHondaa]

Hey guys!

I hope you guys a great Christmas and have a happy new year as well! I’ve been okay I guess, better than I have before and I now have a full time job so I’m working again. Keeping myself distracted from everything, I’m still having major financial problems but that will resolve within time I guess. I been having headaches like migraines lately like everyday for the past couple days. Is this to do with the keytruda? I heard that it’s a side effect from it but I’m not entirely sure. I’ll be seeing my doctor in the next week so if it’s needed to brought up I will. @Karen_L thank you for the advice I just saw it recently but a lot of what you said has been helpful. It’s what I’ve been trying to do since everything has happened. If anyone can help out that would be great! I really hate to think of the worse but that what immediately comes to mind with all this. 

[RJN]

A Happy Christmas to you too! (And everyone else on here).

Re your headaches. I have been on Keytruda for 15 months now, and haven’t experienced headaches. But in the various immunotherapy FB groups I am in, people have 100s of different side effects so it wouldn’t surprise me. One thing I would recommend is that you stay super hydrated as it seems to decrease many of the side effects from Keytruda. And of course tell your medical team.

[AleHondaa]

Hey guys 

So continuing off my last posts, doc Ordered an MRI of my head. Which is really concerning me bout spread to my brain. I’m really scared for health and future. So let’s pray it’s nothing like that.

Thank y’all

[LilyMir]

Try to pull back from negative thoughts for now, hoping it is nothing and just stress related but very happy your doctor was proactive. Even if there was something, there is much they can do usually so stay hopeful. I know how it is, I often catastrophize every symptom I feel but it is quite detrimental and I try to learn to pull back from such thoughts quickly. 

[LouT]

Ale,

Hand in there my friend.  Worry can't change the outcome of the test and until you know there is something wrong can only rob you of peace.  I know that going through this is hard, but you can do it and if you need any other kinds of help then reach out for them.  And you are added to my prayer list.

Lou

[AleHondaa]

Hey guys,

I got my results and it’s not good. Severe brain mets, I’m at the hospital rn so they can put on steroids and see a radiation oncologists see what I can do. I feel like I’m in the endgame now. But we’ll see what happens.

Ale

[LilyMir]

So sorry to hear this Ale, that news sucks! Please try and stay positive, I heard of many who survived mets, as they can be effectively targeted by radiation in many cases. Are those mets the only disease visible in your scans now? Did they tell you what severe means (I do not recall you saying you have cognitive or movement issues).

[AleHondaa]

@LilyMir it straight from mri, I’ve Been fine til now. I can’t speak that well but that’s it 

[AleHondaa]

Probably cause it spread a good amount

[AleHondaa]

In Philly  right now they gonna some procedures tomorrow hopefully it helps

 

[Justin1970]

Hi Ale

I'm so sorry to hear about the brain mets but there is brilliant treatment out there for it,as you know I had gamma knife radiosurgery done and brain surgery to remove one , the steroids will help reduce the swelling and fluid in the brain so that will help with the speech hopefully, it's not an easy road but it really is possible to get through it, I'm still having the odd problem now when coming off the steroids my right side is not working so well so I'm back on them for another 3 weeks, I had an MRI scan done on Wednesday to see what's happening now and I'm worried about the result, so I know a bit about what you are feeling, it's definitely not the endgame you refer to if you don't let it, your young ,strong and fought hard enough to get where you are now so please keep doing it, you deserve a win, 

All the best Take care Justin 

 

[Karen_L]

Hey Ale,

I'm so sorry you're going through this. FWIW, last summer, I met a young lung cancer guy who's had 29 gamma knife surgeries for brain mets. He started a very high level job in cyber security last year.  Don't stop believing in possibilities yet--you can do this. 

K