New Diagnosis

So Sorry to hear this
I am so sorry to hear this about your son. There is a lot of variation in how long people can survive as stage IV's. I am a stage IV and at the time of diagnosis my esophagus was completely blocked and I had a small leision in my liver. I have been at it now for 22 months and am stable at this time. I had a CT scan last week and will get the results tomorrow. We will see how that goes. Anyway, I am one of those who tolerates chemo well. Am now on my 5th drug and for the most part am in good shape. I do have fatigue and have no hair anywhere but am able to live alone and take care of myself. For me that's a big thing. If your son goes the chemo route, tell him as he begins to get tired more quickly, keep doing things but pick one project each day and don't worry about the rest. You, your family and most of all your son has a long road ahead. Will keep you all in my prayers. Sam Stage IV

sangora said:

So Sorry to hear this
I am so sorry to hear this about your son. There is a lot of variation in how long people can survive as stage IV's. I am a stage IV and at the time of diagnosis my esophagus was completely blocked and I had a small leision in my liver. I have been at it now for 22 months and am stable at this time. I had a CT scan last week and will get the results tomorrow. We will see how that goes. Anyway, I am one of those who tolerates chemo well. Am now on my 5th drug and for the most part am in good shape. I do have fatigue and have no hair anywhere but am able to live alone and take care of myself. For me that's a big thing. If your son goes the chemo route, tell him as he begins to get tired more quickly, keep doing things but pick one project each day and don't worry about the rest. You, your family and most of all your son has a long road ahead. Will keep you all in my prayers. Sam Stage IV

Welcome,
Hi, and so sorry to have to 'welcome' you here. You have come to the right place, however, and you will find more helpful information here than from any web site that you may find. First of all, please don't read the stats, they are very discouraging and also dated and inaccurate. Your doctor has no right to tell you a timeline, each and every person handles treatment differently and the progress of the disease varies from person to person. Your son may indeed have 2 months left, but he may also have years!!!

There are several stage iv's here that are handling treatment very well, a prime example is sangora (above). There have been many who have fought till chemo wore them out, and some who have chosen no chemo and are alive and doing well. The options are few, but each person must make their own choices, based on what they desire. The ultimate question is "quality" of life, or "quantity" of life. For many that is an easy choice, others struggle with it endlessly.

Unfortunately this disease is a nasty one with many bumps along the way. My husband Lee was 48 at diagnoses, and I am so saddened to see how very young your son is. Lee also was stage iv, with mets to the liver, which means no surgery. He also was not able to have radiation due to the size of his tumours. He suffered horribly through chemo, but for a short while they were able to shrink them down a bit. Unfortunately they grew back, and with a vengeance and he passed away within 10 months..... but there are many others who the chemo did work for!!! Like I said, each person is different, and no one can predict what will happen. We have our friend "chemosmoker" who has chosen no treatment, and he has had struggles along the way, but has outlived his doctor's prediction by months, and is still enjoying life to it's fullest.

No one can tell you what to do, but your son must ask many questions, research and do what he feels is best for him. There are no right answers.....
Wishing you all the best,
Chantal

ACOR
Gordon,

I am sorry to hear about your son's diagnosis. My husband had stage 2 EC, he is NED now. I would suggest you check out the ACOR listserv. It is an email service that will connect you with other EC patients and family members. There are do kaon there that have aggressively treated stage 4 EC. One person whom I think you should reach out to or read older posts of is Lois Ackerman. Her husband had aggressive treatment and was NED for 6 years from a stage 4 diagnosis, with mets to liver and lungs. He is now battling a recurrence, 6 years later. You can read their story by searching the archive. I don't want to give you false hope, just a resource for aggressive treatment if your son wants to pursue that route.

The website is www.acor.org

My best to you and your family

Niki
Wife to Jeff T2N1M0
DX May 2011
Chemoradiation 6/21/11 - 7/28/11
IL 9/6/11
Pathological complete response
3 round of post-op Chemo 10/21- 11/15

Welcome
Hi Gordon and welcome to you and your son. Sorry to hear of your son's dx. I was a caregiver for my dad, Ray. He had stage IV EC, went for 6 wks of chemo and radiation, tumor shrunk, he went into remission, made it to a year after dx, in Dec he had pain on right side, went for ultra sound, showed a blocked bile duct in his liver, had stent put in bile duct. Ultra sound also showed lesions on his liver, within 3 mos he peacefully passed away. He fought a 16 mo battle. My point here is that my dad was with us for 12 good mos. Your son's dx of 2-7 mos. is just a guess. I would suggest you get to have him get a 2nd opinion. My dad did. His first opinion gave him 6 mos. The second opinion told him they can treat it and shrink the tumor...he lived for 16 mos. Where do you and your son live? Are there well known cancer hospitals near you? Hope my story helps. Keep in touch.
Tina in Va