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My dad was diagnosed with Stage 4 esophageal, mets to liver

Posted by randikw @randikw, Dec 13, 2023

My dad was diagnosed with Stage IV adenocarcinoma in Oct 2022. Mets to liver and lymph nodes. We were told surgery was off the table and would never be on the table. Radiation also not an option at this point. After 1 year of immunotherapies and chemo, the tumors in his liver shrunk drastically and so did the original tumor in his esophagus. Just when we were starting to believe his original diagnoses wasn't a death sentence and maybe he'd outlive the "12-15 months" average time frame that he was given; November 2023 he had a scan that showed new masses in his liver resurfaced and a couple in his lungs. Also showed esophageal wall thickening again and lymph nodes enlarged again. The immunotherapies stopped working which his doctor just kept saying "was very, very disappointing." He's now on CPT-11. Has anyone else gone through something similar as him? I'm getting married Nov 2024 and his Dr suggested that maybe we think about moving the wedding closer so dad can walk me down the aisle. I'm just looking for similar stories--either to give me hope that he'll be there for the wedding or to accept the fact and come to terms with that maybe this is the beginning of the end for him?

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

mrgvw | @mrgvw | Dec 14, 2023

Well, I've seen just about everything. I've been talking to hundreds of patients and caregivers the past 3 years... they have taught me much. My own stage 3 journey counts for something as well (chemo, radiation, esophagectomy, a year of immunotherapy), but not as much. It's learning from others from around the world that has taught me the most.

So yes, I've seen some crazy sht. Quite a few stage 4's who have come back to have both radiation as well as surgery... to stage 1's who went straight to surgery... and woke up stage 4's... due to many positive lymph nodes. It's cancer... it doesn't play by the rules.

His oncologist knows what the data says for patients similar to dad. But he doesn't know exactly what's coming for your dad. But if nothing is done, we all know what's coming, and that is true for just about every one of us, regardless of stage.

So his first line treatments have stopped working. So this must now be abandoned, or at least changed up somewhat, if not totally. Between Folfox, FLOT, CAPOX, Epirubicin, Ramucirumab, Keytruda, Herceptin, Enhertu, and yes, even palliative radiation on the esophageal tumor, to maybe help eating... to maybe buy more time... many things can still be done. And getting into a clinical trial, anywhere in America, can also offer hope.

Statistically, yes, the odds are against dad. But that has not changed. I am also in the group that has maybe a 20% chance of seeing 5 years. But now that I'm closing in on 4 years from diagnosis as well as 42 months post-op... my odds are starting to get in my favor.

So when does dad start his new treatments? And yes... moving the wedding would be smart, if that matters greatly to both you and dad. And like @dave640 said, I too am on the SmartPatients site. We host twice weekly free Zoom calls for us EC patients, all around the world. Be well...

Gary

REPLY
1 reply
jcrs | @jcrs | Dec 14, 2023

My husband had the same diagnose. He wasn't legible for immunotherapies. He is doing only Modified Folfox chemo (4th round yesterday), where he seem great improvement in swallowing, he is now eating regular food and no back pain.
They didn't offer radiation, first I was concerned, but after reading this forum, I saw many side effect as well.
One doctor said to us, don't rely on statistics, every human being is different, so that helped us to look for the future.

REPLY
zebu | @zebu | Dec 17, 2023
In reply to @mrgvw "Well, I've seen just about everything. I've been talking to hundreds of patients and caregivers the..." + (show)
@mrgvw

Well, I've seen just about everything. I've been talking to hundreds of patients and caregivers the past 3 years... they have taught me much. My own stage 3 journey counts for something as well (chemo, radiation, esophagectomy, a year of immunotherapy), but not as much. It's learning from others from around the world that has taught me the most.

So yes, I've seen some crazy sht. Quite a few stage 4's who have come back to have both radiation as well as surgery... to stage 1's who went straight to surgery... and woke up stage 4's... due to many positive lymph nodes. It's cancer... it doesn't play by the rules.

His oncologist knows what the data says for patients similar to dad. But he doesn't know exactly what's coming for your dad. But if nothing is done, we all know what's coming, and that is true for just about every one of us, regardless of stage.

So his first line treatments have stopped working. So this must now be abandoned, or at least changed up somewhat, if not totally. Between Folfox, FLOT, CAPOX, Epirubicin, Ramucirumab, Keytruda, Herceptin, Enhertu, and yes, even palliative radiation on the esophageal tumor, to maybe help eating... to maybe buy more time... many things can still be done. And getting into a clinical trial, anywhere in America, can also offer hope.

Statistically, yes, the odds are against dad. But that has not changed. I am also in the group that has maybe a 20% chance of seeing 5 years. But now that I'm closing in on 4 years from diagnosis as well as 42 months post-op... my odds are starting to get in my favor.

So when does dad start his new treatments? And yes... moving the wedding would be smart, if that matters greatly to both you and dad. And like @dave640 said, I too am on the SmartPatients site. We host twice weekly free Zoom calls for us EC patients, all around the world. Be well...

Gary

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Hi Gary, I have a great friend around 75 years old. He has helped a lot of people in his life, but now he needs some help himself. He was recently diagnosed with EC, and I was wondering how I could get him on the Zoom call with your group. He is currently considering TruFreeze Cryotherapy instead of chemotherapy radiation, as surgery is not an option for him. He could use some support from a veteran in this area to help him navigate the false hopes from real options. Thank you. Steve

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1 reply
mrgvw | @mrgvw | Dec 18, 2023
In reply to @zebu "Hi Gary, I have a great friend around 75 years old. He has helped a lot..." + (show)
@zebu

Hi Gary, I have a great friend around 75 years old. He has helped a lot of people in his life, but now he needs some help himself. He was recently diagnosed with EC, and I was wondering how I could get him on the Zoom call with your group. He is currently considering TruFreeze Cryotherapy instead of chemotherapy radiation, as surgery is not an option for him. He could use some support from a veteran in this area to help him navigate the false hopes from real options. Thank you. Steve

Jump to this post

Assume you got my private message. If not, we can do this out in the open.

Gary

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