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Living with lung cancer - Introduce yourself & come say hi
Lung Cancer | Last Active: Jan 22 8:18am | Replies (1013)Comment receiving replies
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.
Replies to "Hi! I am Mary, and my husband has Stage 4 NSCLC. Originally diagnosed with Stage 1..."
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……
@fowlair Mary, I just want to let you know that I'm thinking about you, knowing that tomorrow is your anniversary.
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@fowlair, Living without a timeline is so difficult.
I am a stage IV patient, and doing well, but making long term decisions is tough when you’re not sure how long you are going to be around.
What are the hospice nurses saying about his condition, have they been helpful when making decisions?