Living with lung cancer - Introduce yourself & come say hi

They told me yesterday that it’s not unusual for a patient to have improvement after starting hospice care because they are mote concentrated on quality of life. Also they said if we want to temporarily end hospice care, we can do so and then start again later. But they don’t think this is a change in how the cancer is spreading. It’s now a moot point, because my husband decided yesterday he didn’t want scans or chemo again.
Hospice advised us to basically do whatever we want while he is feeling better and is still able to do so. So I am going to try to let go of the uncertainty.
The nurses have been a Godsend. The social worker has been my rock. I know she is there no matter what to help me think things through and talk me down from the ledge when I’m getting anxious.

I get that folks don’t hang here unless they have questions or a need to share. I am a retired nurse so always looking for an opportunity to help. I can only do that from experience with the early stage cancers. But this site helped me when I was having post op pain and I continue to monitor and think I will for a long time.

Also interested in the reoccurrences although disturbing.

Good Morning! I am right there with you! I just had my segmentectomy LUL, for NSCLC (Adenocarcinoma)and a little wedge (Granuloma -benign), 3 weeks ago, today. I feel good, but this IS SCARY! Reading that after someone has gone through the same thing, they suddenly have stage IV somewhere else. I am only scheduled to have a CT every 6 months for the next 2 years. No chemo or radiation was “necessary” as my cancer was stage 1A. But I have read some of these other posts that say there cancer was stage 1 and it happened. Well, I know that God has me in HIS hands and whatever HIS will, will be done. I think the best things to do are remain Positive and treat myself a lot better and try to be healthier, by way of exercise (walking for now), food intake (Lots of fruit and veggies) and mindfulness/gratitude. If cancer does come back, hopefully this will all help me fight it again, like Mary- who has been living with cancer for 25 years! Everyone! KEEP UP THE GOOD FIGHT!

It’s so nice to hear that you have good support. I hope he continues to feel well for as long as possible and both of you can enjoy each other’s love, and find some peace too.

2yrs ago I had lobectomy for a stage 1 tiny spot that was biopsied. Dr said I didnt need oncologist because they got the cancer out clean. 9 months ago I was being treated for sciatica. After 6 months of orthopedist an mri showed cancer on my glute muscles. Stage 4. Pet showed some tiny spots on my lung and one lymph node involved. Radiation took the pain and swelling away. Now getting keytruda. I’ve had 3 infusions. My rump hurts now and I want a scan to see what’s happening. Dr says not to worry, that sometimes during immunotherapy the cancer can grow. How soon after starting keytruda should I expect a scan?

I too had Stage 1 Adenocarcinoma. I had a upper left lobectomy and no chemo. I had scans every 6 months and then yearly. That was 9 years ago. Enjoy and be grateful for every day as most others aren’t as fortunate to be diagnosed as Stage 1.
Bring a former smoker it is not surprising that I now have cancer in my upper right lobe. I keep reminding myself that everyday is a gift. Appointment with surgeon and EBUS at the end of the week. i refuse to let this take away from the joy and contentment I have in my life.

Lou Lou -
I wish you the best of luck! I wish for you a skilled surgeon if that is the case. I wish for you that the EBUS comes back that your lymph nodes are clear! More than just wish this for you, I will say a prayer for you! Please let us know how it goes?
Cindy

@pego, I don't blame you for being concerned with additional pain the area, but I do know that many have had success with immunotherapy and Keytruda specifically. I'm reading that it can be 2-4 months before seeing results, and that may vary based on stage and type of cancer. Did you have a high PD-L1? Have the doctors given you an idea of when to expect the therapy to have a positive effect? And when a scan may show if the therapy is working?

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.