Mally

Hi Nichole,

I'm so sorry you are having to face this, especially at such young age. My heart goes out to you! Tom is right, you will find so much information here, and if you have a question don't be shy about asking! I don't know anything about your type of lung cancer or mutation, but I did get 4 treatments of Keytruda. The side effects for me were minimal, some fatigue, but unfortunately it didn't work for me. I hope it is successful for you!

Blessings,
Michelle


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Hi, Nichole,
Welcome to LCSC. This online community is a great place to connect with other survivors and ask questions and share experiences. I can encourage some of our younger members and members who are on targeted therapies to respond to this thread. Please let me know if you'd like additional resources or support and I will be happy to connect you.
Lauren
--
Digital Community Manager
LUNGevity Foundation

Hi Nichole!

I am so sorry that we are meeting under these circumstances [emoji20]
I was diagnosed at 30 with NSC lung cancer. Stage IV adenocarcinoma. I am 33 now! I have been thru a few different treatments including gilotrif, tarceva, cisplatin/ alimta, radiation, surgery and now I am on tarceva/cabozantinib. I've been on my current treatment for 14 months. My tumor is EGFR+ with MET amplification.

If you have any questions please feel free to ask!


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Dear dear Minnie. Your mother is doing what all of us moms do. We do what is best for you children, I know!! You are an adult, let me tell you as long as you are alive you are her 'child'. I have 3 kids, 25,23, and 16. There are days when I want to crawl in bed but one of them has something important for me to see or do. Your mom knows you need to finish school and she does not want her disease to stop you from doing it. Go on and do it. Just call her often, drop her a card once in awhile, write her a poem or just a letter telling her what she means to her. I know that those things mean so much to me. Your mother knows best, do what she tells you

I agree with Cindy. We moms just want to do our mom stuff. I was home a week from my mastectomy and writing a big health report with my then 12 year old. I remember I had taken a nap, and saved my pain pill for that time. We want our life to be as normal as possible.
And I also remember not wanting people lurking. I didn't like feeling that I was being watched.
You can find a way to connect.
Keep breathing.

Gail,
I love your sign off: "Keep Breathing" !!! That pretty much sums it up!
Smiles,
Tiny

You all are so RIGHT. But no matter how much I know that she is an adult and my mom, I sometimes still feel like it might be time for a little bit of role reversal.
I know that sounds so crazy, but dealing with someone so close to you that has lung cancer sometimes seems to make you crazy.
I've read a lot of posts where those that are fighting this disease often rely on medications to 'keep the edge off.' Sometimes I feel like I need them.
I find myself lately just very depressed and always looking into the future with the 'what ifs.' Like, what if she becomes seriously ill tomorrow, or what if she dies unexpectedly and I'm not there. It's horrible.
Not only that, but sometimes I find it very difficult to concentrate on my studies. And if I fail, that will make her so disappointed, I know, but how do I get through this? Especially being so far away?
I can tell in her voice when I talk to her when she doesn't feel so well, I even broke down one night while I was talking to her on the phone. I don't want to do that. I don't want her to worry about me. I want her to concentrate on herself. But sometimes, I'll just be sitting in class, think about her, and I've got to leave before the tears start coming. Or other times I just have to sleep. Not that I am exhausted, but it feels like my brain just needs to shut off for a while. She would absolutley kill me if she knew all this was going on. And like I said before, sometimes it's just too hard to try to talk to people who don't understand what you are going through.
I really appreciate the replys, especially from the mothers. You give me a perspective that I know is full of unconditional love for your children. Thank you so much.
Enough of my rambling again ... until next time!
Minnie

Minnie:
You mentioned several "what if's" Here's one you should mention, and remember; "What if she survives and beats this". Think about that one.

Last chemo treatment i had to have a magnesium infusion because i was very low and i was changed to a different recipe of chemo before i started because being t2 diabetic they said the original plan can cause neuropathy sharp pains and it wouldve most likely affected me ..

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I get the steroid meds after my double bag of chemo and after that its maxalon or ondansatron for nausea but both dont seem to cover it well but now im on my 2 week break things usually settle down untill the next dose

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Thank you for the welcome Mally & Tom. My cramps started last night, this is early for them to start. I barley got any sleep. Since I was going to work today I couldn't take a pain killer so I took some Ibuprofen, as of right now it seems to be helping. Thank goodness. 
My next chemo appointments are next week and they will take more blood work. I will ask about a magnesium blood test.
I will let you all know when I have my pet scan. 
I also get shooting pains after my chemo treatments. Does anyone else get these?
 
Sandra

Dave,
Understand your fear completely. My diagnosis and first line treatment (name for what you are having) was frightening in the extreme!  
So, radiation is the inverse of March. It comes in like a lamb and goes out like a lion. At first I thought this is no big deal. Then week three happened and my strength departed. My first line chemo (taxol & carboplatin) was weekly but reduced strength. I didn't loose my hair, except my gray hair. My before and after treatment photos showed no gray!
Chemo side effects were also less than full strength chemo. I know this because I experienced 12 more infusions at full strength after recurrences. That brings up an other important point: lung cancer is persistent, suite up for the long game. Recurrence are frequent. 
I found chemo side effects to be somewhat controlled by medication. I experienced an unusual side effect of extreme joint pain but thankfully after chemo side effects are predictable starting almost the same time after infusion. Because of this, I could take my pain meds about an hour before my pain started and minimize the symptom. 
You'll have many more questions. Ask away because you'll likely find answers from the tee-shirt designers the experts wear.
Stay the course. 
Tom

Carl,
Depressing absolutely, positively, most assuredly, but extra life at high quality is likely and achievable. 
Contact KatieB by message on this site and arrange for someone to talk you through the mayhem. LUNGevity provides this support and you'll need it. You are matched up, generally, with someone who has the same lung cancer affliction and experience as you. 
I'd arrange the contact points but am away from my computer and struggling with this impossibly small iPhone keyboard. 
Stay the course. 
Tom

Had pre- op today, angioplasty on my leg tomorrow then May 30 is lobectomy. Nurse today said lobectomy is about 4.5 hrs. We'll see how it goes also have a breathing test Friday. Whole thing is rather depressing.

Susan, My prayers are with you. You have encouraged me so much & I am just starting my journey with cancer. I pray things will get easier for you.

Mally,
No my nausea symptom remained constant. It set in about 18 hours after my infusion and I learned to start my nausea medication about 17 hours after the infusion. Thus, my symptoms were controlled. 
But, about a week into second line (full strength) chemo, my hair departed. It thinned quickly to gone!
Stay the course.
Tom

I am fortunate to have a big family and many friends including my church family who have been literally a life saver for me. I hope you can get connected with a church or a local cancer support group, no one needs to go through this alone.

Thanks Katie, being alone with this is not fun

Susan,
I know what you are going thru and want you to hang in there. I went thru 15 sessions of daily radiation and am going thru chemo once a week (3 on 1 off) for 12 weeks while I wait to see if I can do the targeted therapy. I totally understand and sympathize with you. Hang in there Susan....just concentrate on the end!
 
vicky

Hang in there, Susan! I've been there. I had the daily radiation with weekly chemo, too. Mine was for cervical cancer and the worst of it was my digestive system REALLY objected to it.  I understand the need to vent. When my hair started going, I had a short buzz cut. It was less upsetting than waking up with chunks on my pillow or having a bunch come out when I combed it. Getting it off all at once gave me some sense of control. I got a wig (cheap one!), which I wore rarely. I really got into hats and scarves, though,  indulging myself in quite a few.  A couple of the nicer ones I still wear. Yep, you're right that you need o do (and can do, and will do!) what ever it takes. Hair is just hair --although sometimes it doesn't seem like it 
All my best to you,
Bridget

The up side of this Susan is
YOU WILL NOT HAVE TO SHAVE YOUR LEGS OR UNDERARMS !
Donna G
 

Just a post to vent......I'm mentally and physically exhausted.  I have finally hit the wall with this round of treatment.  I endured chemo (cisplatin/pemetrexed) last year, but that cycle was a little more forgiving; one long day every three weeks.  This round, I've had daily radiation for almost 6 weeks and weekly chemo (carboplatin/taxol).  The chemo side effects aren't as bad, but I guess the daily grind of radiation, with the weekly chemo, and the fatigue have finally knocked me down.  I'm also starting to lose my hair and Super Doc told me I'll have two more rounds of chemo in June and those two treatments WILL take the rest of my hair.  I thought I was mentally prepared to lose my hair, but I wasn't.  It's starting slow but at some point, I'll take matters into my own hands and just shave my head.  But then I remind myself that I told Super Doc I'll do whatever it takes to beat this, and losing hair is just a casualty of this war.
Thanks for letting me vent.  Sometimes just putting it in writing helps me, especially because I know you've all endured this and so much more.  

Stay strong, sweet girl, you've got this!

Well I finally start my radiation treatments starting next Tuesday and they will be 5 times per week for about 7 weeks. Today I got my 3 tattoos and Monday morning I'll get another tattoo. The oncologist sounded very optimistic that with both treatments, that we may be able to eradicate this cancer.
My chemotherapy appointment scheduler should be calling me anytime. That treatment is for only 1 time per week. I've been told that this is the treatment that will make me sick, nauseas, and weak and of course, lose my hair. We shall see.
There seems to be signs of cancer in one of the lymph nodes, but due to my heart condition, surgery is not an option. I'm scared but very optimistic about everything that will be happening to me. I'm going to fight this thing. I'll keep updating. Need positive input and any healthy suggestion for exercise or diet to help me fight this thing.
Dave (DragonKing)

Allow me to introduce myself, please call me Fred! I was diagnosed in March of this year with non-squamous, non-small cell adenocarcinoma, stage 2, moderate, with a Standardized Uptake Value (SUV)of 12.5 in my right lung. However, surgery was ruled out due to some lymph nodes that lit up during the PET scan. I am very appreciative of all of you that participate on this forum, and look forward to networking with you!