One patient with glioblastoma still alive nine years later
by Adam777 on Mon Jun 04, 2007 12:00 AM
Hi all, my dad is 67 and was diagnosed with stage IV esophageal cancer back in Feb 07. He has metastases to lungs and now brain also. After radio to the main tumour in April, and now stereotactic radio to his brain, he sleeps nearly 80% of the time. He is still managing to eat simple foods however (choc ices, soft wafers, biscuits, soup, e-sure etc....), and with good admin of medicine is managing to stay generally pain free. However he is not willing to share any detailed prognosis with us, his family. We would very much like to hear from anyone who has experienced a relative with this stage of esophageal cancer, specifically with questions such as:
Q) What happens in the final couple of months, (symptoms wise)?
Q) What are the signs that he might be coming to the end of his life?
Q) When should we consider a hospice?
I have looked for similar info online but found very little.
Thanks for listening.
by 2cats on Mon Jun 04, 2007 12:00 AM
Does he have any of you listed with the doc's office as people they can release info to? Are any of you able to go to the doc with him?
My mom has her children and a couple other people listed on her forms. We can call at any time and ask questions. They will release info to us. You might see if that is an option. You could also call hospice and ask them some of your questions. They should be able to tell you what to watch for. I know when my aunt was dying (not from EC) they did a great job preparing the family, letting everyone know what stages she would probably go through, etc.
I dont know that you'll get a lot of info about the end stages on this board. Most people dont come back after their loved one has passed. You might look up Cathys EC cafe. Its a site where people post blog type things about their experience with EC.
Wishing your family the best!
by Adam777 on Tue Jun 05, 2007 12:00 AM
Thanks for your post 2Cats.
I did ring both the Radiologist and Oncologists secretarys, informing them that I/we would like to be kept up to date with Dad's prognosis etc..but unless he gives them specific instructions to be able to do so, they are boung by patient confidentiality... I spoke to my father regarding this, and he is being very stubborn about it. We have told him that it is only in his best interests to be kept right up to date on his situation, but he thinks it best to handle it his way. I think he is worried that we might put him in a hospice, whilst he wants to stay at home.
All the best.
by Debbyw67 on Tue Jun 12, 2007 12:00 AM
I highly recommend Cathy's EC Cafe's listserv. They are very active and are a good mix of survivors, caregivers and also caregiver's whose loved ones have already passed away from EC. They can probably give you some very good honest answers to your questions. It sounds like your dad is trying to protect you from the brutality of this disease. I would also highly recommend two books "Final Gifts" and "May I walk you home" which both deal very honestly with helping a loved one through the dying process. I just started reading them this week but find them very beneficial. My father also has Stage IV with mets to liver, lymph node and lungs. His last series of chemo failed miserably and he will begin a new series with different chemo tomorrow but his onc has told him there is only a 15% chance of this working since the first ones didn't.
I wish you and your father the best of luck in your battle with this awful disease.
by Cmt928 on Thu Jun 14, 2007 12:00 AM
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If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
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