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#199706 01-20-2020 01:08 PM
Joined: Jan 2020
Posts: 1
Amc Offline OP
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Joined: Jan 2020
Posts: 1
I am sorry to ask about death when all here are fighting for life. You are all amazing warriors and I hope you can forgive me. My loved one wants no treament. I read a lot about treatments, and how terribly difficult they are, not so much about what to expect about disease progression, and palliative care for someone not receiving curative treatment. Is adequate pain management possible? Nutrition when he can no longer eat? Please tell me everything I should know to help make him as comfortable as possible.

Amc #199708 01-22-2020 07:13 AM
Joined: Oct 2012
Posts: 1,245
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Patient Advocate (1000+ posts)
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,245
Your post did not say whether your partner has had any treatment at all. My husband had cancer in the base of tongue (oropharyngeal). He had radiation and two doses of cisplatan. There were various kinds of complications from treatments like DVT in both legs and his esophagus was closed by scarring.

However, when the cancer metastasized, John was given a chance at immunotherapy. It was at that time a Phase 1 trial. When it did not work for him, he was given Taxol/Carboplatin. Following, he was enrolled in a Phase 2 trial of Selinexor, which weakened him and it was discontinued. John also had a new procedure done to open up his esophagus. As far as I know, up to 2019, he was still the only person who had had received this procedure. The procedure was successful and he was able to eat soft foods by mouth. Unfortunately, he then developed silent aspiration which caused him to be hospitalized for pneumonia. After he came home, he had a fall which resulted in a hairline crack in one of his ribs. It hurt but was not serious enough to put him in hospital. At that point, he was in palliative care at home. He was prescribed codein (if I remember correctly, it was 1/4 or 1/8 teaspoon only) for his pain. Then he developed pneumonia again and eventually, he passed from pneumonia.

John never gave up. He would take whatever treatment that was offered. He was never in a lot of pain except when he cracked his rib. As a caregiver, I could see he was becoming progressively weaker. It was like he was slowly slipping away. There was a lot of managing on my part — the daily injections for his dvt, the meals, the meds (whether they could be crushed to be put in his feeding tube) or if there was a liquid form of the prescription since he had difficulty with swallowing, the postural hypotension when he could pass out at the most inconvenient places like the parking lot, the medical emergencies when I had to take him to emergency. Like you, I was determined to keep him comfortable. However, he complained constantly about not being able to drink even a sip of water after he developed silent aspiration. Despite being quite sick, he was still an individual with his own mind and wishes. I felt it was important to respect that.

I don’t know if this is the kind of information you’re seeking. Whether your partner chooses treatment or not, it will be a bumpy road ahead, and it’s not just the pain. The body, I far as I could tell, slowly breaks down. There will be the loss of interest in even the basic things in life, like watching TV or reading the papers because the body is so weak.

I cannot tell you or your partner what choice to make, but not choosing treatment may not mean the end would be quiet and easy even if the pain’s under control.

She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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