Introduction

[Fightlikeamother]

Hello, I joined this online community per the recommendation of a family friend. I have metastatic lung cancer, non smoker. I struggle with an enormous amount of pain partially due to the tumors on the lining of my lung, but also due to a trapped lung. My chest wall has according to the Radiologist, "remodeled" so the bones and attached structures have changed shape to accommodate the collapsed lung, sort of like a vacuum in my lung. As a result I have a lot of pain and shortness of breath that is more disabling than the cancer itself. I am wondering if anyone has had a similar issue and what they did for pain control? I'm not having much luck with chiropractic and prescription medications. Thank you.

[Denzie Moderator Volunteer]

Very sorry for the need that drives you here. A trapped lung is outside my experience but I wanted to welcome you.

Have they tried fentanyl patches yet? They were created for patients like us.

Can they remove the trapped lung or are they more worried about surgical risks?

[Fightlikeamother in reply to Denzie]

Most likely will not remove the lung due to being stage IV. Also when the surgeon went in for the biopsy he thought the tissue was too friable to attempt it.

Have not tried patches yet, seeing a pain doc and trying acupuncture in Tuesday so 🤞

[anrean]

Hi and welcome!

So very sorry you are in so much pain. I am wondering what medications your pain management doctor has tried, and for how long. It took awhile for my pain management doctor to find a pain med that works. Currently on dilaudid and that has finally given relief. I strongly suggest talking to the doc and keep trying until you find the med and dose that works for you. All too often they are reluctant to use opioids until they become the last resort.

As for a trapped lung, I have no experience with that and cannot imagine how painful it must be.

Are they addressing the shortness of breath with meds like Spiriva and/or Advair along with continuous oxygen? Maybe a pulmonologist can help you with that issue. I am on 2.5 liters of oxygen 24/7, which was prescribed by my pulmonologist. It helps with the shortness of breath. He also has me on a mucus-reducing med to help keep my lungs clear. In addition, he has me doing lung exercises to keep my lungs as strong as possible. The pulmonologist and oncologist work closely together.

To add to the mix, an anti-anxiety med helps me cope with the anxiety of not being able to breathe like I used to. It is a frightening feeling to struggle to breathe.

Hope this helps.

Lauri-Anne

[Fightlikeamother in reply to anrean]

Thank you for your reply! So far for the pain we have tried Neurontin, ibuprofen, Aleve, Oxycodone, Oxycontin, CBD, and Flexeril. The only thing that seems to work is the CBD and high dose ibuprofen with oxycodone. I also take 1mg ativan for sleep and anxiety. I am excited to see the pain doctor tomorrow and have acupuncture to try to help.

[anrean in reply to Fightlikeamother]

That is terrific to hear! Let us know how things turn out

[Ncpoet]

Wow, you are dealing with a lot. I don’t know anything about a trapped lung. Wish I could help you with this. Sounds like the most important thing right now is to help you with pain. Besides the cancer, I have an autoimmune disease and I was given plaquenil to help with body-wide pain. I also take neurontin, but I see you have already tried that. At least you have an upcoming appointment that will hopefully give you better answers on how to address your pain. Praying you get that under control soon.

I was diagnosed with stage 4 cancer in 2013 and still surviving. Also a non-smoker. So as for the cancer, there is hope! Keep fighting.

Judy

[Spainy]

Good for you to seek support here and welcome. Have you tried medical marijuana? Edibles and oils are available. Keep us posted and hoping you get relief soon!

[Jenniferroseolson]

Hi, and welcome. There are a handful of us very similar to you raising kids and living with Stage 4 cancer. It’s brings me a lot of hope to not feel like the only one.

My case is similar to yours in that most of my cancer was actually in the pleura space (lining of the lung). Before the cancer started responding to chemo, I was very short of breathe and had a lot of pain from chest tubes and a pigtail pleural catheter following a pleuradisis procedure. I was on a fentynl patch for more than a year or so, which was a Godsend. In order to titrate off the patch, I had a nerve block. I have repeated that several times a year to help with the nerve pain around the tube sites (bra-line, go figure.) The shortness of breathe improved dramatically as the chemo did its job. I used Ativan to help with the panicky feeling, and simply waving a fan or magazine in front of my face helped me feel more comfortable (placebo maybe, but it helped). I also take an anti-anxiety med escitaolpram to help with the overall struggles of living with cancer and see an amazing therapist at my cancer center. I am allergic to diladid and find oxycontin did work for me, but not like the fentynl patch. Hopefully your pain management doctor is getting you better situated. I also use acupuncture and have found it to help with pain from total hip replacement(age 47, thanks to AVN caused by post-craniotomy required steroids).

I didn’t see where you indicated how long ago you were diagnosed and whether or not you are recieving treatments/immunotherapy right now. Praying that you find relief from the pain.

Jennifer

P.S. My teammates and friends held a volleyball tournament for me and call me onetufmother...funny.

[Fightlikeamother in reply to Jenniferroseolson]

Thanks for your reply! I was diagnosed 1/23/18 my canniversary (bad joke I know) is coming right up. I suffered since mid December 2017 with large pleural effusions that they thought was due to a pneumonia, which I never had. I had 2 thoracentesis and about a total of 2L fluid drained within a week. It took another month to get me to surgery so my lung is very damaged and actually trapped now so I am short of breath with really any activity and the pain is excruciating at times. My chest wall has actually changed shape due to the trapped lung and I have almost continuous muscle spasms. I started on Tagrisso an oral pill about a month after diagnosis, after struggling to have my insurance approve paying for it.

I think we are in a very challenging subset of cancer patients. WE are supposed to be the caregivers, especially with small children (3 and 7 in my case). My husband is very supportive but I still jump anytime my kids need anything, instinct I think. I'm seeing a wonderful acupuncturist now who does all Chinese medicine and a pain specialist but he has not given me much hope.

I am still working a few hours a day so can't be on a fentanyl patch, I'm a nurse and cannot be under the influence of anything which is challenging. I live on ibuprofen in the morning just to get some work done. Ironically I work in a Cardiothoracic Surgery office and have worked with lung cancer patients for 12 years, never thought as a non smoker I would be one! The surgeon I have worked with all that time was the one to do my surgery and tell myself and my family I had cancer. It was like a bad lifetime movie. That being said my coworkers have been so loving and supportive, I couldn't ask for better!

[OrangeSkies]

Hello FLAM,

I am following you because I too was recently diagnosed (Sept 2018) and I too am a Registered Nurse. My children are fur babies (all three have 4 paws), but I still consider myself a mother!

I am also an Army Veteran. I served 4 1/2 Army years before Honorably discharging to be with my then husband (now divorced) and attend Nursing school.

For YEARS I suffered with horrendous migraine headaches...I was told the MRI'S were clean.

I guess you could call me a procrastinator... I graduated from nursing school with an Associate's degree in Applied Science; then went back for a Bachelor's Degree in Health Administration; then back again for a Master's Degree in Public Health. The Master ' s just about drowned me....working full time, dealing with pain, and getting all the school work in on time.

Finally the summer of 2018 the migraines were so bad I was calling ambulance's/paramedic's to the house on a regular basis. Basically I would be medicated at the hospital and then discharged.

One hospital in June 2018 performed a CT-Scan and MRI....I was told I had a left temporal brain tear. It made sense to me because all of the migraines occurred at my right temple.

Finally one Saturday I took an Epsom salt bath, called an Uber and went to an Urgent Care affiliated with a hospital where I once worked. The MD on staff took one look at me and called an ambulance to take me to the hospital.

The doctor looked me in the eyes and said, "You do not have to feel this way. We will find out what is wrong" ....and they did.

I was so very grateful to have someone listen to me and search for a way to get my pain under control that when I received the diagnosis of Cancer, I was not really bothered. I just wanted the pain under control.

So, since being diagnosed, I have been on XALKORI pills twice per day and in January 2019 I began monthly infusions of IV Zometa along with other meds.

I do not feel as well informed as some of the friends on this page, but if I hear of good info or read something worthwhile, I will surely pass it along.

Big hugs and prayers,,

~Bri