Talking Frankly about Living with Advanced Cancer

Hello @testlady

I see that this is your first post on Mayo Connect. Welcome and thank you for so honestly describing your feelings. Your phrase, "the fog of inevitability," so aptly describes what so many of us feel at one time or another. Especially after a test finds a new source of cancer, and we find ourselves facing another surgery or another round of treatment.

Please continue to share your journey with us as you feel comfortable doing so. We would like to get to know you better, and also may I offer my congratulations on your "six years and counting."

Teresa

Hiya I’m Dave just starting 7/23 to live with stage IV mets lung to liver, bone (pelvis, hips, clavicles, entire spine) & again right lung. The dr said he cannot cure me but he’ll make sure I won’t die of cancer. Tanx doc. Immediately started radiation. Partially successful due to the location of the nodules in the spine. Next up chemo another joy ride. Those days following treatment are brutal even with all the anti-everything meds they give you. Then there’s the pain. Bone pain is hurtful, really hurtful. Even with morphine patches and oxy there’s a constant feeling of being unwell in my abdomen and back. Cannot stand at the sink to wash dishes much less climb a ladder to clean gutters. I’ve lost weight and continue to do so even with help from a nutritionist. So how do I live with advanced cancer; I guess I’m still angry hurting sad. I’ll get thru this as I did 2 yrs ago when I had sbrt for lung nodules. Self-pity isn’t helping

Has any one had conflicting diagnostics? I had PET/CT and Singtura, both cancer free. Yet my CA125 is rising. My oncologist prescribes a CT with contrast to see any tiny cells. She says it’s unusual to have this type of test discrepancy…anybody have similar experiences? In the mean time I’m focusing on the two “no cancer” tests.😊

Yes, it's been confirmed that it's spreading. Luckily, its still only in the bones and not a 3rd site so I am starting a new treatment tomorrow. I understand it's a bit harsher than the Ibrance I've been taking. I was really hoping to stay on Ibrance longer but I guess it's just not in the cards. I'll my research makes me just hope that I can still maintain what I do in my life for maybe another year. Could be wishful thinking, but I guess we have to do that, right? Good to hear that you've been metastatic for 5 years and still doing well. Or maybe you didn't say that. Are you still doing well?

@robynwithay, I don't have metastatic breast cancer, but I have had metastatic lung cancer for the past 5 years, and breast cancer stage 1B within this past year. I did really struggle with the metastatic diagnosis for the first few years. I was in a fog and just kept living my life as I had prior to cancer. It's a difficult diagnosis to process, and asking for help from your oncology office (social worker or therapist who is good at working with cancer patients) may help to restore some joy and purpose to your own life. Having an adult son that needs you for his care adds an additional weight to your shoulders. You have a lot to process and work through. I hope you are able to find some help. You shouldn't have to do this on your own.
Have you learned anything more from the recent PET scan?

I was diagnosed with gastroesophageal junction cancer adenocarcinoma stage IV with two liver mets in early February 2024. I had no previous symptoms, so this was quite a shock! (I was 57 years old at the time and very healthy.) Based on my initial tumor testing for PD-L1 I was put on Nivo in addition to FOLFOX for eight rounds. Since that time I have been on 5 F-U and Nivo for 36 rounds total. I'm considering going off 5-FU, which has been recommended by my oncologist, but I am nervous about it as one of my liver mets grew back a year ago. (I had SBRT in Sept. 2024, and my scans have been clear since Dec. 2024.) I would love to hear from anyone who is on immunotherapy (not chemotherapy) about your experience. Thank you!

Thanks for your comment. My oncologist doesn't think that the 5FU is doing much at this point.

I was also diagnosed in February 2024 with GEJ stage 4 with a lymph node in my neck positive.
Have been on 5 FU and immunotherapy for 28 cycles. Have had clear scans for quite awhile but my doctor has not said anything about getting off the 5 FU. I would be interested in the reason why your doctor is recommending stopping 5FU.

@rschreib You might want to check out the pancreatic cancer group. Many have taken FOLFOX, some have adenocarcinoma, and they may have experience with drugs that will also address gastroesophageal.
Best wishes to you!