Living with lung cancer - Introduce yourself & come say hi

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”.

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”.

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

Hello, just introducing myself, I am of Flemish-Belgian origin, emigrated 5 years ago to Phoenix, AZ, having met the Love of my Life here in 2006, and enjoying a LTT (Living Transatlantic Together) relationship of 11 years. Flying in from Brussels, went through airport cattlewalk fences of Immigration 35 times. Permanent resident now, Citizenship in the pipeline. In December, suspicious nodules and lesions were found in my right lung after an unexpected X-ray. Which turned out to be a “happy accident”, as I had no complaints at all. Further CT-scans, MRI and Biopsy revealed a 25 by 21 mm tumor in my middle right lung. Whilst my cancer was originally diagnosed as stage 2B, results of biopsy later changed to 3A, as a little lymph node was also discovered right next to the “mother tumor”, as my doctor described it. Testing just showed that, after 2 of my 3 rounds of chemo+immunotherapy, tumor already shrank to 18 by 10 mm. Cancerous Lymph node found resolved. No further metastasis since Biopsy. Pretty good news, I was blown away with happiness. Now awaiting surgery end April. Doctors said it would probably and most likely be “the end of my treatment”. Needless to say, I will have regular testing afterwards. Still need clearance from cardiology for surgery though. Having had 2 successful heart ablations 6 and 7 years ago, for irregular heartbeat’s atrial fibrillation, there is some concern. Hope approval will follow. Getting pretty nervous now about surgery, as removal of the middle lobe of my right lung could become a very likely scenario. Body 71 Years old but mind and soul is 16 years young. So, worried about length of healing process, recovery time, pain, most common side effects, etc…And best way to handle them…I am very happy about getting excellent info from my team of top-notch Doctors, but would like to learn from patient experiences as well…Any thoughts or advice are very welcome !!! Wally.

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.

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.

This is very frightening. I had a LUL lobectomy in November for NSCLC, Stage 1. Just had my first CT Scan and all looks good. Reading about reoccurrences and not sure I would do anything. I am 72 and have no unfinished business.