Stage 4 Lung Cancer

By jaxlady2003

1 min read

Being diagnosed with stage 4 lung cancer

On March 28th, I was diagnosed with stage 4 lung cancer. Within 18 months, I lost almost 60 pounds. Other than occasional wheezing the weight loss was my only symptoms.

My treatment journey

I am currently receiving chemotherapy and immunotherapy as a part of my treatment plan. I've just completed my 2nd round of chemotherapy out of 4 total rounds. A symptom from that I have experienced from this is total hair loss which has occurred in only 4 weeks of treatment, but I can deal with that.

Support goes a long way

I am receiving tremendous support from family and friends. This is a hiccup in my life, not the end!

I choose hope!

My hair loss, due to hair coming our in handfuls I chose to have my hair buzzed

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Richard Faust Community Admin
Hi <inline-mention username="jaxlady2003" user-id="4743167"/>. Yes, hope is real. Please know that this community is here for you and feel free, if you like, to keep us posted on how you are doing. Great photo! Best, Richard (LungCancer.net Team)
Alisa Member
Hello <inline-mention username="jaxlady2003" user-id="4743167"/>, thank you for sharing some of your story with us. I was diagnosed with Stage 3b lung cancer (nsclc) 22 years ago, had surgery and chemotherapy, and that particular cancer never came back. There have been amazing advances since back in my day, hope is not a cliche anymore. Wishing you all the best, Alisa, LC Team Patient Leader
nuHehTalittA Member
I was diagnosed with stage three NSCLC. Then it was changed to stage four, without letting me know, I read it on one of my test papers. The biopsy confirmed it as NSCLC, however my scans always show only the mass outside of my lung, but wrapped around a large bundle of nerves and is against ribs it is deteriorating and I am in constant severe pain. I was just switched to methadone, since morphine started to be less and less effective. My first scan showed a small speck on my kidney. This is why they rated it stage three., so they said. Still don’t know why it was changed to stage four. I don’t understand the stage four I was rated. I can not find a surgeon that will repair my ribs, or remove the cancer. Well, I did find one that said he can do the surgery and get all the cancer removed and my ribs repaired. But, they gave me an appointment with a radiologist, even though I told them I was maxed out on radiation. So I am back to nobody wanting to do surgery. The immunotherapy using Tecentriq has greatly reduced the mass after it grew considerably with chemotherapy and radiation therapy. But I am having issues with the side effects I have; memory loss, severe anxiety and severe depression, abdominal pains and others that I can’t be positive it is from my therapy, but the handful of drugs I need to take come with their own evils. Should I continue to try and find a surgeon? Anyone know if my ribs will heal on its own. Why the stage four classification? By the way, I was diagnosed Christmas Eve, 2018. Been on Tecentriq for two years. 
1. nuHehTalittA Member
 <inline-mention username="Alisa" user-id="2346003"/> my ribs are deteriorating from the cancer. As for the surgeon, I think he was told at the daily meeting they have to not do it. They changed his mind before he set me up with the radiologist. His excuse was blatantly lame. I am almost certain it was because I don’t have good insurance because my only income is from SS Disability. There was something written in one of my files that they were not going to do something because I wasn’t financially able to get it done. I asked my oncologist about that and was given some kind of excuse that I just couldn’t believe her. 
2. Alisa Member
 <inline-mention username="nuHehTalittA" user-id="4552524"/> Oh, that does not sound right. I know we have had discussions in the past, but please refresh my memory - have you gotten a second opinion from a separate comprehensive cancer center and what state do you live in? I know in NYC the major comprehensive cancer centers take HMO insuances from the Affordable Care Act, finances should not be a factor in treatment. ~ Alisa
nuHehTalittA Member
I did not go for a second opinion because I saw that mass on the scan and that just verified the biopsy. I live in Pennsylvania, near Harrisburg. Penn State Hershey Medical Center is where most oncologist are affiliated with. Because of my poor insurance, I have financial assistance from Penn State Hershey Med, so I’m pretty much stuck with only them. I also have state funded insurance that is good for prescriptions, but not much else. 
1. Alisa Member
 <inline-mention username="nuHehTalittA" user-id="4552524"/> Are you near Penn Abramson Center? I hear they are very good for lung cancer treatment and may take your insurance. A second opinion isn't just for diagnosis, it can also be used to confirm you are getting the best treatment for your situation. You may be getting the best treatment already, but a second set of eyes can sometimes be very helpful. I understand the limitations with state insurance, but may be worth a try.
nuHehTalittA Member
I never heard of the Penn Abramson center. I have thoroughly researched all the options I have and have also discussed them with my GP. I look at other options, including oncologists on a regular basis, but it just seems as if I am stuck where I am. I may be contracting Patient Relation Advocate since that was suggested by a friend of mine. She has been through so much with many different cancers and she also has been a big help. 
1. Alisa Member
 <inline-mention username="nuHehTalittA" user-id="4552524"/> Sounds like a good idea, please keep us posted! Wishing you all the best!
2. Yolanda Brunson-Sarrabo Moderator
 <inline-mention username="nuHehTalittA" user-id="4552524"/> Sorry to hear of this merry-go-round you're receiving in care. I would second that motion in finding an Oncologist Patient Advocate or even working with your hospital social worker to speed up a list of resources needed to help you through this. Wishing you the very best! Yolanda(LungCancer.net Team)
nuHehTalittA Member
Thanks. By the way, are you still having rib pain? I have been using Salonpas roll on and it helps a lot. Doesn’t last more than a couple hours, but feels great not putting up with the pain constantly. It has 4% lidocaine. Ordered a 5% cream and it works so much better. Hope everyone who has pain like this tries these. 
1. Alisa Member
 <inline-mention username="nuHehTalittA" user-id="4552524"/> Yes, I still have rib pain, but it has gotten somewhat better. I don't think it will get better from here, but at least I can get into a halfway comfortable position to sleep now. It is out of place since my recent surgery as the nodule they removed was on my rib. I wish I knew this would happen, I would have told the surgeon to bind my ribs (if possible) before he closed me up from surgery, but we didn't know at the time. Salonpas are great, many of my friends with lung cancer use them, unfortunately it doesn't help my rib, but does help with other aches and pains that come and go. Thanks!
Spitfire Member
Hi <inline-mention username="jaxlady2003" user-id="4743167"/>. You had mentioned your 60lb weight loss. What was that like? Were you just not hungry? Did you get sick when you ate? Thank you for your insight.
1. Yolanda Brunson-Sarrabo Moderator
 I'm not sure of <inline-mention username="jaxlady2003" user-id="4743167"/> exact experience but some of the questions you asked could be a variety of effects from diagnoses or side effects of the treatment with medications. What affects one person may not be the same for another, with that said eating and weight loss should be addressed with doctors, so that if necessary they can fine-tune a plan that works better in regard to how one feels when taking specific medications. Here's an article that addresses the trials of loss of appetite and weight loss. Wishing you the very best! Yolanda(LungCancer.net Team) https://lungcancer.net/symptoms/appetite-weight-loss