JuneK

Hi Justin,
Last August thru October I had 4 cycles of Carboplatin & Pemetrexed (Alimta) & Nivolumab (Opdivo) infusions taken every 3 weeks. My main issue was nausea. It would usually start 2 days after treatment and be bad for about 3 or 4 days. Then I would be so weak from the nausea days it would take another few days to eat enough to start getting my strength back. By the third week I would be feeling much better. Just in time for the next treatment! So for me the symptoms were worse days 3 through 5 & gradually improved after that. I’m not sure why your peak would be day 14. Maybe my dosages were different from yours? Fortunately, I never got mouth sores, but they told me about a special mouth wash if that happened. I did get terrible dry mouth from some of the anti-nausea drugs. They always told me to drink as much water as possible. I got so tired of drinking water but I do think it helps to flush out some of the bad stuff. It is so hard to drink it though when you have nausea. My goal was around 84 ounces per day & I usually made it.
Zofran helped a bit with my nausea but was just not enough. They added Compazine and then later we tried Olanzapine. The Olanzapine helped the nausea but made my blood pressure go so low I passed out twice & had to stop taking it. I woke up once on the floor & my poor husband was so freaked out he had called the paramedics. They almost made me go to the ER due to the low blood pressure, but it gradually started coming back after drinking a big electrolyte drink. So we never did find a perfect solution for the nausea - the Zofran made it just bearable & I basically toughed it out because I gave up on the other drugs by then with their weird side effects. Luckily it only lasted a few days of each cycle, but those were miserable days. I learned to take Miralax as soon as I took any nausea meds and that helped prevent the terrible constipation. (It only takes one failure to learn that lesson, oof!) The rest of the time was just dealing with fatigue, etc. Of course the overall anxiety of everything also wears you down. 
Sorry, that's probably not really much help. I do hope you improve in the next week. Just remember it's all the price for a good result and in the end will be worth it! Looking back on the treatment it just seems like an unpleasant dream. All the best to you, Justin!
Take care,
June

Hi everyone, I just wanted to thank you all for the wonderful support you give my son. Jus has had a pretty rough time of late and certainly didn't need the added stress from people who were supposed to be family (well by marriage) as he needs all his strength to fight this evil disease. Things are better now and I feel he is getting stronger and back to the man we all know and love. Your help and support has been invaluable to him and me, you truly are a family to us and once again thanks, I know it means a great deal to him to have people he can confide in and that fully understand what he's going thro and how he's feeling, I hope you are all doing well and keeping positive Take care and keep fighting Love and best wishes Isla xxx

Hi Justin,
I am so sorry and sad to read about all that you are going through. This treatment does sound scary (like so much of this cancer mess we have to go through) and with so many unknowns it makes it that much worse. Just remember that so many have been through this before you and survived, so maybe that can help keep the hope going. Please know you are in my prayers and I am wishing the best for you every single day. I'm doubly sorry that there are horrible people who have made added stress for you. I can't imagine being so heartless, what is wrong with people? But just know we are thinking about you every day and rooting for the best outcome possible. I hope the side effects do not get too bad and begin to improve soon!
Take care, June

That's wonderful! Congratulations and enjoy the cruise!

That's wonderful! Congratulations and enjoy the cruise!

Hi Justin,
I am so sorry and sad to read about all that you are going through. This treatment does sound scary (like so much of this cancer mess we have to go through) and with so many unknowns it makes it that much worse. Just remember that so many have been through this before you and survived, so maybe that can help keep the hope going. Please know you are in my prayers and I am wishing the best for you every single day. I'm doubly sorry that there are horrible people who have made added stress for you. I can't imagine being so heartless, what is wrong with people? But just know we are thinking about you every day and rooting for the best outcome possible. I hope the side effects do not get too bad and begin to improve soon!
Take care, June

That's wonderful! Congratulations and enjoy the cruise!

Hi Justin,
I am so sorry and sad to read about all that you are going through. This treatment does sound scary (like so much of this cancer mess we have to go through) and with so many unknowns it makes it that much worse. Just remember that so many have been through this before you and survived, so maybe that can help keep the hope going. Please know you are in my prayers and I am wishing the best for you every single day. I'm doubly sorry that there are horrible people who have made added stress for you. I can't imagine being so heartless, what is wrong with people? But just know we are thinking about you every day and rooting for the best outcome possible. I hope the side effects do not get too bad and begin to improve soon!
Take care, June

That's wonderful! Congratulations and enjoy the cruise!

Tomorrow (February 4th) I celebrate 19 years of life after diagnosis with NSCLC, squamous cell. I’m tapping this post out on a small screen while rocking and rolling in the middle of the Caribbean Sea, in route to Cartagena Columbia on our celebratory cruise. WIFI is spotty, thus the early announcement   
Two points are relevant for our Forum community: celebrate life, and if I can live, so can you. 
Stay the course. 
Tom

It's checkup time again. I had my brain MRI a couple of days ago and saw the oncology radiologist yesterday. Things are stable. 
I'm having some emotional whiplash, though. No scanxiety beforehand this time (thank goodness) but with each test, I'm reminded of the realities of lung cancer and I just...grieve. 
The good news: the next scan is in three months, not two!
One foot in front of the other, I'll shift my focus to the sweet life I am lucky to have.  It's so much easier said than done, eh? Onward!

That's wonderful news, Susan! Congratulations, I am very happy for you. It's posts like this that continue to give me HOPE! 💗 

That is great news, very happy for you!

That is great news, very happy for you!

That's wonderful news, Susan! Congratulations, I am very happy for you. It's posts like this that continue to give me HOPE! 💗 

That is such great news, Congratulations!!!

That is great news, very happy for you!

That's wonderful news, Susan! Congratulations, I am very happy for you. It's posts like this that continue to give me HOPE! 💗 

That is such great news, Congratulations!!!

That is such great news, Congratulations!!!

Just an update that my last scans came back as still stable. I wasn’t too anxious, but having had a cold an cough for a while now it was still a relief. So bring it on 2023! Happy holidays and the best wishes for the new year!

My Dec CT scan results are out, NED! Now the wait for the next scan starts but at least my family can have some joy starting the new year. Happy New Year everyone!

Received my latest scan results a few days before Christmas. I'm still NED - been that way for 4 years. Super Doc says if my next scan (June) is clean, I'll get moved to an annual scqn. If you had told me in August 2016 that - first - I'd still be here and - second - that I'd be NED, I wouldn't have believed you.
If you are newly diagnosed, please know that this disease can be survived. I'm proof. 

Well tomorrow is the big day! I will have my lobectomy in the morning. Upper right lobe. I think I am ready - a little nervous right now, but not too bad. Getting ready for bed now. Not sure how much sleep I will get - we have to get up super early and be there by 5:30. I never sleep well when I have to get up that early, not to mention when facing surgery! Thank you, Lou for directing me to the "tips & tricks" for lung surgery. My surgeon's office also provided a really nice booklet with advice for all aspects - pre, during my stay, and for recovery. Also, thank you to all who have posted their experiences. I've noticed there seems to be a wide spectrum of levels of difficulty people have and of recovery periods. Hopefully in a few days I will be able to give you an update. Crossing my fingers that all goes well! 🤞
June

Hi everyone. Sorry to take so long to check in. My upper right lobectomy was performed by Da Vinci RATS (Robot-Assisted Surgery) on December 8th, which was ten days ago. The surgery took 4 and ½ hours, which was longer than expected, but my surgeon said overall it went very well. He said the tumor had basically turned to a mushy mess (presumably dying from chemo & immunotherapy), so he had to be very meticulous to get every bit of everything. There was a lot of sticky tissue that had to be teased apart, etc. which made for what he called a "tough" surgery. He had been a little worried by how close the tumor was to the other lobe, but upon inspection he verified it was confined to the upper, so he did not have to cut into the middle lobe at all.
I did very well in the hospital. My surgeon used Exparel (bupivacaine) which is injected into the incisions and is designed to release numbing medication over time. This worked very well for me. Even though I had pain, it was nowhere near as bad as I expected for the first 2 or 3 days. My whole mid-section was quite numb for a long time. It did hurt to breathe deep, and to cough, but the pain was manageable. I truly hated the spirometer those first few days though! It was very difficult to pull in much air. But I was able to walk around pretty well – in fact they had me up walking that very first evening. I know that is common, but it still amazes me!
The day after surgery the nurse noted there was very little drainage coming from my chest tube, so they were able to remove it around noon that day. I didn’t feel a thing when it came out – again probably due to the numbing agent that was used. Since the chest tube came out a little early, I was able to go home on the morning of day 3. Unfortunately, day 3 was when the numbing med began to wear off! So the pain was actually much worse after I got home than when I was in the hospital. I had to take Tramadol to be comfortable enough to get any sleep. The next few days I took mostly Extra Strength Tylenol, a muscle relaxer and/or Ibuprofen during the day, but had to use Tramadol at night and other times when the pain got worse.
I've used the spirometer religiously (must admit I am so tired of that thing!). However, I woke up Wednesday morning feeling like I couldn’t get my breath. I was having more trouble breathing then than at any time after the surgery. I also had developed a bad sounding cough (there was a weird little rattle to it). Just walking across the room made me very short of breath, to the point I became anxious about it, which of course made things worse. I called the drs office and the nurse recommended I get a chest x-ray, just to make sure all was OK. So I went in and got the chest x-ray Wednesday afternoon. They called Thursday morning and said everything looked OK. My breathing slowly got better Thursday and by Friday I was breathing easier and past the “anxiety” stage. I still don’t know how much of all this was because I worked myself into a state of anxiety or if there really was something going on, but I just felt especially bad those two days. When the cough got better, the shortness of breath got better, and by Friday I was feeling much better overall.   
So here is it Sunday evening – 10 days since my surgery. I have to say I have more pain and swelling than I thought I would have at this point. I had a lot of abdominal swelling after surgery, and it has not gone down a whole lot. I feel like there is an incredibly tight band across my upper abdomen. Overall, I am doing OK, but I think I wasn’t prepared for the healing process to be this slow. I still need to take at least one Tramadol a day to get through it well and to be able to do my light walking and other exercises they want me to do. I think part of my issue was expectations - I had read many comments saying this surgery was not really all that bad, so then it turned out to be not quite as “easy” as I expected. I just did not expect to have this much pain & discomfort after a whole week. I realize everyone’s case is different though. The doctor did say it was a difficult surgery in that it took so long to clean everything out. I also read that the healing process can be slower if you are over 60, which I am.
So, in summary, I would say that the first few days after surgery were easier than I expected, but the following week at home was a little more difficult than I expected. I’ve had to learn to be more patient with the whole process. The nurses I’ve talked to say a slow recovery is very common, and of course not everyone heals at the same pace. My next appointment with the surgeon is on December 27th. Hopefully by then I will have improved and he can put my mind at ease. I will say that when I take the Tramadol, I am pretty comfortable. I had just thought that by now I would be getting by on Tylenol & Advil! I could have sworn I read that somewhere, lol.
Most of all, I want to say how thankful I am that I was even able to have this surgery. And I am thankful to still be here for one more Christmas!
Best to all,
June
PS - I love my surgeon, he is talented, caring and kind. If anyone in the Atlanta area needs a recommendation, I would not hesitate to name him. He apparently has a great reputation. Just contact me.