Living with lung cancer - Introduce yourself & come say hi

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.

Thank you for this forum.....I feel like I've found an "oasis in the desert". I'm into my second month of taking Tagrisso, and am experiencing a lot of side effects....mostly shortness of breath and cough. Mostly good days, but some "not so good".

It's good to know I'm not alone in this.

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.

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

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

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