Living with lung cancer - Introduce yourself & come say hi

Posted by Colleen Young, Connect Director @colleenyoung, Mar 2, 2017

Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

millie5737 | @millie5737 | Apr 22, 2023

In reply to @fowlair "Hi! I am Mary, and my husband has Stage 4 NSCLC. Originally diagnosed with Stage 1..." + (show)

@fowlair

Hi! I am Mary, and my husband has Stage 4 NSCLC. Originally diagnosed with Stage 1 in 2013. Had a wedge resection and everything was fine on all his scans. Then in 2020, out of the blue, it advanced to Stage 4. It had spread to his femur, liver, and brain, as well as both lungs. He had whole-brain radiation, which impacted his short-term memory. Then he was on a combo of chemo drugs, then switched to chemo/immunotherapy. Unfortunately, the chemo was killing his red blood cells faster than his body could produce them. So we took a "chemo vacay" in 2021, which was only supposed to last a month, but his scans kept showing no growth. In November 2022 the scans showed new growth. His oncologist said he wasn't strong enough to go back on treatment and referred us to hospice. During that time, he went from 180 lbs. to 131 lbs.

Hospice put him on a steroid to increase his appetite. He has gained 22 lbs. in two months. Woohoo!

We were originally told he had 3-4 months. We are now at 5 months and counting. Since he has gained weight, he has more energy and more awake time. It's like I got my husband back.

I know this is going to sound horrible, but I am so confused and conflicted. I planned around the time frames given to me. Trying to figure out if I should buy one or two airline tickets to our nephew's wedding in August. Should I sign up for an art class in a distant city in the not-so-distant future? Is he getting better? Should he have another PET scan to see how/if it is progressing?

His cognitive functioning gets worse every day, and he is experiencing urinary incontinence. I strongly suspect the cancer is back in his brain.

So I have to decide whether to stop hospice and try to convince his oncologist to take him back to do another PET scan or continue as is with hospice. I know the rationale for not doing a PET scan is that if you aren't going to have treatment, it doesn't really matter what the scan shows. But treatment was halted because he was so weak. Now he's doing so much better. I just don't know what to do or think.

Our anniversary is May 8th. I didn't think we would make it, but now it looks like we will be celebrating 47 years. And I am thrilled. Please don't get me wrong. I love my husband dearly and want to keep him as long as possible. I am just flummoxed by his improvement and really don't know what, if anything, are the next steps.

Sorry this is such a long introduction to the group.

Jump to this post

Thank you so much for sharing as your thoughts, feelings, conflicts are similar to mine. Husband diagnosed in 11/22 with stage 4a NSCLC. Planning…..yes, it’s difficult, especially when it’s a part of your marriage to go, do, travel etc. My husband was admitted 4/13/23 to the hospital because he asked me to take him to the ER because of trouble breathing. He has had chronic inflammation since 8/22 and the cancer was diagnosed 3 months later. The inflammation has been treated with steroids and he is back on them. The hospital stay of 7 days revealed embolisms in R lung and leg. He is home using FT oxygen. We have plane reservations on May 15 that he insists on keeping. We never asked and were never offered time prognoses. We will be married 50 years in 1/24. To young couples, they may think, well you you were lucky to have had each other that long. It’s never long enough……

Lisa, Volunteer Mentor | @lls8000 | Apr 22, 2023

In reply to @confident "Thank you for this forum.....I feel like I've found an "oasis in the desert". I'm into..." + (show)

Hi @confident, Welcome to Mayo Connect. I love your selection for your name, and I’m glad you found us. There are other EGFR patients here, who are taking Tagrisso.
I have the ALK mutation, so I take a different targeted therapy, but the side effects are usually similar and even after three years continue to be a challenge for me sometimes.
If you are comfortable sharing, what stage was your cancer identified, and just a couple of months ago?

confident | @confident | Apr 23, 2023

Good morning Lisa.....diagnosed with Stage 4 in February of this year. What a shocker....out of the blue!! It has been a real "roller coaster" since then, but doing my best to stay positive. Will have my next PET on May 9 to see if the Tagrisso is doing it's "magic".....keeping fingers crossed. If having side effects is a positive thing, then I am confident that it is working. My major complaint right now is shortness of breath and cough. I can handle the fatigue and occasional diarrhea. Other effects are minimal. So thrilled to hear that you are three years out.

theresa72 | @theresa72 | Apr 24, 2023

Hi I’m Theresa and just had the upper lobe removed from lung cancer. The good news is that it’s stage one. I’m in week three of recovery and have a constant pain under my breast and across my ribs. I guess this is just the healing process but wonder if there is an exercise to ease the pain Love and Peace

Lisa, Volunteer Mentor | @lls8000 | Apr 24, 2023

In reply to @confident "Good morning Lisa.....diagnosed with Stage 4 in February of this year. What a shocker....out of the..." + (show)

Hearing the diagnosis is never easy, but for those of us with mutations, it is usually a complete surprise. I was sure I had some sort of fungal infection, Nope, it's lung cancer! What?!
I'm hoping that your PET shows a reduction in the cancer. Keep an eye on the shortness of breath and cough, if it gets worse and not better, you should probably reach out to your oncologist. Those can be signs of other issues that can occur with the targeted therapies (lung inflammation). Wishing you the best, take care.

mjane120 | @mjane120 | Apr 24, 2023

Hello. I am new to this group I am recovering from a lobectomy 2 weeks ago. I have or had a carcinoid tumor. Pathology is still pending. The middle lobe of my right lung was removed

cmcguire10 | @cmcguire10 | Apr 24, 2023

In reply to @theresa72 "Hi I’m Theresa and just had the upper lobe removed from lung cancer. The good news..." + (show)

Hi Theresa, I just hit my 4 week mark after LUL Segmentectomy and a small lingular wedge. Also had both breast implants removed due to encapsulation and calcification. All in the same operation. I too still have the soreness and aches and pains of under the front breast incision(for the lung surgery) and the back and side incisions. My surgeon recommended using those lidocaine patches to help ease those pains. Like Aspercream or Solanpas. She said you could cut them to fit the area but do NOT put them on any incisions. I know Mayo offered a booklet for Pain after surgery and how to deal with it without more medications and it talked about Yoga, Tai chi, meditation, etc. You may be able to go on to their website and find it. The best thing, of course, is to talk with your surgeon about what you are allowed to do at this stage of healing. Good luck to you and I hope you heal well!
Cindy

theresa72 | @theresa72 | Apr 24, 2023

In reply to @cmcguire10 "Hi Theresa, I just hit my 4 week mark after LUL Segmentectomy and a small lingular..." + (show)

Thank you

cmcguire10 | @cmcguire10 | Apr 24, 2023

In reply to @mjane120 "Hello. I am new to this group I am recovering from a lobectomy 2 weeks ago...." + (show)

Greetings MJane , Well, hope you are feeling and doing well. Sorry that you have joined this group unwillingly, but good to have you here. This group of Mentors and people just like you are very knowledgeable and helpful. Hope you will ask any questions you need to or just get to know others on here that can give you guidance or information or whatever you may need. They are a great group and have big Ears and big Shoulders!

mjane120 | @mjane120 | Apr 24, 2023

The lung module/ tumor is or was a carcinoid. The pathology results are still pending. The middle lung was removed. Has anyone here gone through this!

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