That's great Aaron, I am glad you're alright. Keep on fighting.
Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
Chemo 6 months, Tumour didn't grow but lymph nodes
New Chemo 4 months, not working, new spot 4mm in Liver
Aug 16, start Opdivo ,immune therapy
CT Nov 16 , Tumor shrank, Lymph nodes shrank
CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
Thanks for the update. Hope you are on your feet again soon.
At the time - 46 yo male, non-smoker
Sept 2012 - DX - One tumor NSCLC Squamous Cell Right Upper Lung
Oct 2012 - TX - Treatment similar to Pancoast Tumor - Pre-operation radiation and chemo (5.5 weeks of IGRT and 3 cycles of Cisplatin and Etoposide)
Dec 2012 - Surgery - Remove RUL, Surgical Pathology Report Adenocarcinoma T2N0M0
Now - Wait, watch, & pray
Ditto the message from Mike.b.
Please keep us in the loop!!
Hey guys! Ill start by saying Thanks for all the kind words and well wishes they really really mean a lot! I had my post op appointment with my surgeon roughly two weeks ago and he told me that all the margins were clear, he said he's happy with the operation but with this type of tumor it's pretty likely that it'll come back fingers crossed it doesnt! I'd like to give you a positive update but truth is I'm really finding recovery harder than I thought I would. The main problems for me seem to be the paralyzed diaphragm, it makes life a fair bit harder for me as well as not being able to really catch my breath when I'm out of breath I can't lay on my left, and when I crouch down of bend over to tie my shoes or pick something up it feels like I'm under water or something like that and can't take a breath in it's actually a really weird feeling. I've been coughing a lot but the surgeon told me that's because my body is feeling the staples in my lung and thinking there's something foreign in there that it needs to get out. Anyways I've been walking a fair bit trying to improve my lung capacity and I'll get there eventually
thanks so so much for listening and taking the time to reply guys ❤️️
Sorry guys pretty pointless message this time just thought I'd let you know what's happening
Good report. Sorry to hear about your diaphragm issue. Is that expected to improve over time?
You should have received a surgical pathology report. What stage did they determine you to be at surgery?
Never pointless Aaron. We enjoy hearing from you. good to hear the margins were clear. Sorry to hear you are struggling with recovery from the surgery. Like Mike, I am curious to know if the drs feels this may improve. Is there a respiratory therapy you can do or is it a just wait and see?
You just take care of yourself and please continue to keep us posted!
Wife to husband with squamous lung cancer stage 3 b
dx - April 20/14
tx started May 20/14 - radiation and chemo
June 23 - chemo finished
June 24 - tumor 1/3 the original size
July 4 - radiation finished
July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
Married July 19/14
Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
Dec 16/14 - pretty much nothing left but a scar
April 7/15 - ditto scan and screw you stats
Oct 6/15 - more scarring but still cancer still gone
Feb 2016 -scan the same
Aug 2016 - more of the same
Hey mike hope you're doing good, nah the diaphragm issue is not expected to get better as they didn't just damage the phrenic nerve. They completely removed one.
Originally Posted by mike.b
They staged it at IB it hasn't spread to any of my lymph nodes or anything like that. I was pretty happy about that
Hey Jodie thanks so much, that's so nice of you. As I said to mike it's not really expected to change. My lung capacity will get better but the way I actually breath will stay the same. Which sucks. Thanks so much for the message I hope you've been great!
Originally Posted by jorola
While I'm here I just wanted to ask if anyone experienced back/neck pain after surgery. I've seen a chiro and it didn't seem to help at all it's just shooting pain from near my left shoulder blade up my neck and in my left temple. I'm guessing it's because of all the muscle tightness but any little tips and tricks you lovely people have would be amazing
Thanks so much!
Great to hear that you were 1b, the odds are in your favor. Given that you are a baby, how are they planning to monitor you for recurrence? Also, did they offer you any follow up treatment?
Sorry for all the questions. Just want to help!
Hi guys I've got a bit of an update that's pretty full on but actually worth saying today's Thursday and it's 9:30pm on Monday night I was with my girlfriend not feeling too well, and the past few days before that I was throwing up etc. anyways Monday night my girlfriend was really worried and upset so I agreed to go to the emergency room. Got there about 11:30pm they brought me straight in and to a bed because my heart rate was only 74 (( I went to the Austin hospital emergency room which is where I had all my surgeries))
They rushed me in for an x ray then requested a c.t scan shortly after. And what they found from that scan, was the left subclavian artery in my arm that they had worked on and patched up, the patch seemed to have Come loose a bit so that was leaking bit by bit over the past 5 or however many weeks they said and it formed a clot, they said if I left it any longer the patch would have completely flung off and I would have died.
Anyways after they found that out they sent me for an angioplasty Stent procedure which involved laying me down and inserting two metal rods into my pelvis and traveling down the main arteries to get to the artery in my arm that had the leak to place a stent in there which would stop the bleeding. I'm going to be quite blunt and say that from the minute I walked in hospital seen everyone freaking out and rushing me to do this procedure I was just in panic mode and so scared. About an hour after that procedure which took about two hours they sent me for a vats procedure, to clean it out and here I am today. Three days later in a hospital bed just got out of icu. The Drs came to see me today and said that there was also an infection and because there was an infection in the space where my missing lung is, unless the space is filled with living tissue it would most likely get infected and keep getting infected which can be lift threatening. They said if the space isn't filled, there's no way for the antibiotics to get into that space, so what they want to do, is remove my whole left lat muscle..... when I heard this I can not describe how shocked I was I started crying and everything. They want to remove it without completely detaching it, roll it up and slide it through my chest into that empty space so that there's living tissue filling the space. They said they. Could also do this with stomach fat but that would be pretty experimental. I don't have long to make my decision but it absolutely broke my heart.
On Saturday I'm going in for another clean out and then on Monday is the next procedure. (That's
Three operations in just a few days, chest drainage tubes and all) I can honestly say this is the worst news I've had and I really don't know what to do.
If I don't get my lat muscle removed I'll be prone to infection and that can be life threatening. But if I do remove it that lowers my quality of life and I really don't know what I'd do, I know for a fact there's 0% chance of me ever doing my job again (electrical linesman majority is working with arms above my head) also not that it matters but it will look pretty silly too and I think at 23 years old this is just so much I'm still in shock and the worst part is I have to make A life changing decision while under the influence of lots of morphine and I'm even on a ketamine infusion 16mg every hour.
I dunno guys I just really need help and advice what do I do I'm just so scared as silly as I feel to say I'm laying here crying so much because this is such a big deal to me but the surgeons and doctors don't see it that way they just see this as "something that has to happen" They don't get the fact that my nephew will be born in 4 months and I won't even be able to lift him above my head or I won't be able to climb ladders or do the job Love anymore or boxing it's really everything I love in life that would change from this.
My surgeon keeps telling me that he'll get me having a long healthy life but I think it's really important that I have a happy life too because knowing the person I am I won't be able to wake up every morning without being able to do the things I love every single day. They were all that was getting me through this situation in the first place, I was always hanging in there to get stronger then be able to hit the gym again and couldn't wait to get back to work and see the guys faces but now it's like it's all just been shut down and I have this decision to make that seems like it's going to ruin me either way.
Sorry I know this was a lot to read and I'm not very good grammatically or spelling wise so it's probably torture. Sorry but thanks for listening. Aaron