Living with lung cancer - Introduce yourself & come say hi

Wally:
I had a right middle lobectomy in 2013 and I know the prospect of surgery is frightening. My surgeon used a VATS procedure, which goes in between your ribs from the side to access the lung involved. I had about 4-5 small holes where various instruments were inserted, but they healed very well and very quickly. I had the surgery two weeks before Christmas and was up and cooking for the holiday! Ten years later, I have a couple of very small nodules, "broken glass", and some lymph nodes that are slightly enlarged. I now get either a CT or PET scan only once a year because everything has been stable for so long.

Good luck with your surgery and let me know if I can help answer any questions.

Mary

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.

The scans showed no response to treatment (meaning tumor growth) but continued inflammation. We have thought possibly a visit to infectious disease doctor, after the final elimination of a fungus infection that takes 6 more weeks to return. The oncologist actually left the decision to have infusion #6 up to him. He said yes and received it yesterday. Doing nothing seemed to be giving up.

My goodness, you and he are traveling the same path. He is now on just keytruda and pemetrexid, yesterday was his #6 infusion after taking 8 weeks off to try to determine cause of inflammation. Still unknown, but chose to have infusion. Scheduling oxygen and cardiologist appointment to determine if he has edema. I send you positive thoughts, prayers and support also. Thank you for responding.

I was diagnosed September 2022 with same as your husband, nsc, stage iv, only in lungs. Was in clinical trial all winter but the trial drug showed no positive effect. Currently am on same three drugs as your husband, third infusion tomorrow. Hopefully will get through this third and fourth infusion. After it’s supposed to be keytruda and pemetrexid on maintenance basis. I also was in good health before last year. My p c p kept treating me for pneumonia all last summer. I wish your husband better health and a good recovery.

Hi @millie5737, It sounds like you and your husband have had some fabulous adventures! I'm glad that you were able to do that when everyone was feeling well.
I'm sorry to hear that he's struggling. Have there been any scans after the 8 week hiatus; is there tumor growth, or is the inflammation just not getting better? It can be so hard to know what the cause is, and then hard to know what to treat. What a circle of confusion we live in sometimes! It's never fun or easy. Wishing you both the best, Lisa

Hi Kira @kiraleesingleton43, Welcome to Connect. Each case of lung cancer can be a bit different, so her doctors may be able to offer the best information on the extent of her treatment. It sounds like they identified the cancer at an early stage, and that's a great first step! There are many people with early (and late) stage lung cancer that can recover well, enjoy life, and smile again. There have been many advances over the past decade, and there is much hope. Take care of yourself too, she needs your support, but don't be afraid to be vulnerable along with her too. It's a difficult time, but there is light and hope. Take care, Lisa

My husband of almost 50 years (omg, we are old, lol) was diagnosed with stage 4a (both lungs, nowhere else) in Sept., began treatment in Nov for NSCL adenocarcinoma with carboplatin, pemetrexed and keytruda. Those he received for 3 rounds. Then just the pemetrexed & keytruda. After an undiagnosed inflammation ( that was thought to be caused by keytruda) that did not respond to massive steroids and an 8 week hiatus from infusions he has declined physically in that his breathing is labored and his fatigue forces him to sleep up to 15 hours a day. Today, he begins back on chem & immunotherapy, has ordered an oxygen evaluation and there you have it.
Before diagnosis he was an active sailor, we traveled the world, rehabbed our home etc. We considered going to PHX where we lived at one time )and son #1 is still there) for treatment at Mayo. There’s also a Mayo clinic about 5-6 hours away from us currently. He receives treatment locally and Moffitt Cancer Hospital in Tampa is also monitoring his “progress”.

Sorry my name is Kira and my partner has cancer and i am trying to be the strong one

Hello my partner has small cell lung cancer and she had surgery. She is going through the healing process. It was told to us that the tumor and the one lymph node was removed. Now she has to go through Chemo, about how long will she possibly have therapy considering it did not spread to any other lymph node. Will she even have a chance to enjoy life again? i miss her smile i think i need the counseling more than she does. Please I hope someone can help with these questions.