Hi, I'm Karen & I have lung cancer

[Karen_L]

Greetings! 

I was diagnosed with Stage 3A NSCLC in March 2021, with a 4.5 cm irregular right middle lobe mass; 2.1 cm subcarinal nodule, 1.5 cm right hilar nodule and 1.3 right infrahilar nodule. Sadly, the location of the tumor and the involvement of the lymph nodes meant this big mess was non-resectable.

I started chemo-radiation on April Fool's Day (appropriate, right?). I had 30+ radiation treatments and concurrent chemo (carboplatin & paclitaxol). So far, the tumor seems to have been blown to smithereens and the lymph nodes look like they are slowly turning into shapeless blobs. Radiologist & pulmonologist practically dance with glee when they look at the scans. 

The bad news is that the standard of treatment (based on the PACIFIC study) calls for consolidation therapy with Durvalumab, ideally twice a month for a year. I made it through four sessions when I developed pneumonitis. After several weeks of high-dose prednisone, we re-challenged with the "durva" as my oncologist calls it. I developed really bad pneumonitis -- "life-threatening" as my pulmonologist likes to remind me-- and went onto massive doses of prednisone. Somewhere in there, a pulmonary embolism appeared. I didn't have to be hospitalized, thank goodness, but I did get lots of new medicines. (As I tell the pharmacist, somebody has to pay for all the fancy training he got for his new pharmacy puppy, an anti-anxiety support dog for vaccine phobic folks.) Plus a spiffy new medical alert bracelet due to one of the new medicines. 

I'm now tapering down on the steroids and hope to be off them by 12/29, unless something exciting happens, e.g., a recurrence of pneumonitis, which the pulmonologist doesn't anticipate (fingers triple crossed). Meanwhile, I have my first "active surveillance" scans on 12/14. The CTA the pulmonologist did to diagnose the PE (pulmonary embolism) also showed a little nodule that was never mentioned before. The radiologist, whom I worship, has pulled up all the scans prior to that to see if she could see any sign of a nodule but she doesn't think she can. She says if it's cancer, it will "announce itself." How? "By growing."  

Right now, I'm friggin' fat-- thank you prednisone-since-July-- and, as the Brits say, knackered, as the prednisone drops and my adrenal glands have to get back to work.

I'm working on increasing my cardio fitness-- that's going to be a long road, and am doing some weights (don't be  impressed-- they say, "use 15-20 pound weights" and I feel like a bigshot because I'm using 5 lb. ones. Even then, I end up pausing the video and panting several times a workout. But I'm getting stronger.) 

So, I'm planning to live the next couple of weeks as though I've never heard the word cancer. Then we'll see what the scans show. 

I hate having lung cancer. Oh, well....

Thanks for listening! 

[LouT]

Hi Karen,

Welcome to our forum and sorry you have to be here.  Wow!  You've gone through some pretty rigorous treatment, but your results seem very promising.  In my case my lung cancer was staged at 1a so my treatment was surgical only, but you'll soon be hearing from many folks who have gone through treatment similar to yours and they'll surely have some input for you.  BTW, there are folks here who were diagnosed at Stage 3 that have been NED (No Evidence of Disease) since their treatment, so I hope that gives you some additional hope.  You're correct that lung cancer sucks, but treatments have advanced more in the last 5 years than in the previous 30 so we can be grateful for the chance to overcome this disease.  I look forward to hearing more from you.

Lou

[Judy M2]

Hi Karen, I'm sorry you've been through so much difficulty. Everyone reacts differently to immunotherapy and targeted therapy drugs like I take, and you never know what will happen until you try. 

I'm a little like you: diagnosed 2 years ago with Stage 3b, not a candidate for surgery, and I  underwent your same chemoradiation regimen. I had severe esophagitis from radiation and couldn't eat or drink. For whatever reason, a month after treatments ended, I developed a perforated sigmoid colon and sepsis infection and needed life-saving emergency surgery on Valentines Day 2020. I was hospitalized for 10 days and in a rehab facility for 10 days--luckily just before Covid hit. My recovery was long and painful. My esophagitis finally healed after 5 months or so. 

A month after my surgery, I started targeted therapy for my EGFR Exon 19 mutation. I have only minimal side effects from this drug, thankfully. 

Anyway, it took a little over a year for me to reach NED status (as of April 2021). I believe that chemoradiation destroyed the cancer and my targeted therapy is just maintenance. I did have pneumonitis from radiation but it wasn't treated--it was nowhere near like yours. 

All the suffering was worth it. I feel good today and live a normal life. Good for you doing your best to exercise. I think it's important to exercise our lungs. 

I also have a stable 5/6 mm nodule in my upper right lung that is being watched. It hasn't changed in 2 years, so I don't worry about it. You should know that the majority of nodules are not cancerous. 

I am very impressed that your pharmacist has a support dog. I'd go there just to visit. 

Having lung cancer isn't ideal, but treatments have come a long way and are still in development. Somehow we have to come to terms with the beast. I recently bought a bracelet that says "It came. We fought. I won." It gives me strength whenever I look at it. 

Best of luck to you! 

[Tom Galli]

Karen,

Welcome here.

Your first line treatment was exactly like mine except I had taxol opposed to paclitaxol. And, my first post treatment scan was exactly as you reported: my large tumor was indeed blown to smithereens. Your consolidation therapy--Duva--can be troublesome. Unfortunately pneumonitis is commonly reported and the extent of the condition varies from person to person. We have a pretty extensive body of knowledge on Duva here, if you want to read about others and their experience.

I do hope your forthcoming scan shows no nodule growth or any other problem for that matter.

Stay the course.

Tom

[Karen_L]

7 hours ago, LouT said:

BTW, there are folks here who were diagnosed at Stage 3 that have been NED (No Evidence of Disease) since their treatment, so I hope that gives you some additional hope.  You're correct that lung cancer sucks, but treatments have advanced more in the last 5 years than in the previous 30 so we can be grateful for the chance to overcome this disease.  I look forward to hearing more from you.

Lou

Lou,

Thanks for the welcome. Especially, thanks for the reminder to have hope. I go through waves of acceptance and The Uglies: anger, hopelessness, more anger, crabbiness, etc. My denial-- or something-- has kept me from signing up here, but I can see that it will be a comfort and help. I look forward to being involved.

Thanks.

Karen

 

[Karen_L]

7 hours ago, Judy M2 said:

I had severe esophagitis from radiation and couldn't eat or drink. For whatever reason, a month after treatments ended, I developed a perforated sigmoid colon and sepsis infection and needed life-saving emergency surgery on Valentines Day 2020. I was hospitalized for 10 days and in a rehab facility for 10 days--luckily just before Covid hit. My recovery was long and painful. My esophagitis finally healed after 5 months or so. 

A month after my surgery, I started targeted therapy for my EGFR Exon 19 mutation. I have only minimal side effects from this drug, thankfully. 

Anyway, it took a little over a year for me to reach NED status (as of April 2021). I believe that chemoradiation destroyed the cancer and my targeted therapy is just maintenance.

....

I am very impressed that your pharmacist has a support dog. I'd go there just to visit. 

....

Best of luck to you! 

Judy,

Thanks for your encouraging words.

I'm so glad you missed bad pneumonitis. I wouldn't wish it on anyone. But the esophagitis sounds like no picnic either. I have a drawerful of meds in case of esophagitis, which they fully expected me to get due to the nodes and their radiation field. Luckily, very luckily, it never happened. And the colon perforation-- wow, you went through the mill. 

What TKI are you on? 

Here's a picture of Hal, the pharmacy dog (clipped from the instagram site of the training school he went to.) He's a total cutie.  

[Karen_L]

6 hours ago, Tom Galli said:

Karen,

Your consolidation therapy--Duva--can be troublesome. Unfortunately pneumonitis is commonly reported.... We have a pretty extensive body of knowledge on Duva here, if you want to read about others and their experience.

I do hope your forthcoming scan shows no nodule growth or any other problem for that matter.

Thanks, Tom, me too. Especially since the TKI options for my mutations don't have much overlap. But I generally am taking things one day, sometimes one hour, at a time. Your experience is helpful, and hope-inspiring. 

Karen

[Judy M2]

Karen, you're right, esophagitis was awful. Now I'm on Tagrisso and only have minor side effects. 

OMG, Hal is such a cutie! He looks like my sister's golden doodle. I'm going to send his picture to my friend who had a therapy dog for many years and is now involved with training a service dog for our local service/therapy dog organization.