New Here: Dad has Stage 4 - What's next after 2 years?

Posted by pghsusan @pghsusan, Apr 7, 2023

Hi all.

My Dad was diagnosed in January of 2021 when he couldn't eat without food getting stuck in esophagus. Has spread to Lymph nodes, hip bone. Lost about 80 pounds fairly quickly. Doctor initially said that without Chemo life expectancy would be about 6-12 months...with Chemo 12-18 months. Here we are 26.5 months later !!

Side note: I am his caregiver and he lives with me and my family.

Surgery not an option, but started Chemo right away. Chemo has changed twice since progression and next week will be the 3rd cycle of new regimen.

Early last month he presented with ascites with a weight gain of 15 lbs. He was admitted and had fluid removed, which helped greatly.

His tumor marker had been consistent for months and then in February it jumped and then a change in chemo and it went down slightly in March. We will find out next week what the tumor marker is for April. I had asked the doctor what to expect in months to come and he said that it really depends on the tumor marker. If it goes down again, said he will most likely still be around in 6 months but if it goes up, then he will mostly likely not be around in 3 months.

I know there is no crystal ball for all this and every patient is different but I really want to know what to expect.

His voice has gotten worse, he has to clear his throat alot and he sounds like he has a frog in his throat all the time. That is fairly new in the last few months.

In the last 2 weeks he doesn't want to really leave the house and is not hungry, but does eat (very little). He started writing stuff down so that we know what to do when the time comes...

I am not sure what to make of all this and was wondering if any of of you may know what to expect at this point?

Any input is greatly appreciated.


Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

I lost my appitite during chemo and radiation for tumor in my lower Esophagus. I ended up losing 20 pounds. I've since had 28 days of chemo and radiation since surgery was not at option for me at 78 with high blood pressure. I'm feeling much better now and appitite is back.
I can't really say much about your case, but I can say that the body is amazing and sometimes we just don't know what will happen. I pray that your case does improve.


While I was having radiation and chemo treatment and feeling tired, I also did some planning in case things didn't go well. I sent family thoughts on final arrangements. I will be having endoscopy and PET scan in a few weeks and hope I will be done with treatment. So have you heard the latest update?


My husband with stage 4b (lungs, liver, nodes, bone and muscle mets) started chemo (FOLFOX, keytruda, herceptin) every 2 weeks in February. While he had some discomfort swallowing and intermittent chest pain, radiation was not indicated. Surgery is not an option. He has maintained his weight and has had few side effects.
PET scan is scheduled for May. We are hoping for regression if not remission. Because of the nature of esophageal cancer, we were advised that treatment would continue every 2 weeks indefinitely, even if the scan was clear although the drugs (oxalyplatin) would change.
Sending positive thoughts to all and prayers for remission.


Thank you all. My Dad has done folfox and a few others when they weren't as effective. New regime seems to be ok. Tumor marker went down the slightest bit, but I will take that!!

He also could not have surgery and no radiation. In total he's lost about 90 lbs. (Good thing he was overweight to begin with...he he). But he is a frail little thing now. Still getting around with a cane, but we did buy a walker a bit ago & keep in the car just in case.

Hoping you all do as well as he has so far...he's definitely a fighter.

As a side note, he lost my mom 22 years ago to lung cancer that we didn't find until it metastasized to the brain. He got remarried and his new wife also passed away to lung cancer 6 years ago. So, he's seen it & been through it....just a shame it's now his turn.

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