My dad had stent last monday-having a lot of pain. Need advice.

LivingFaith
LivingFaith Member Posts: 74
edited March 2014 in Esophageal Cancer #1
I read everyday but don't post much. My 65 year old dad has stage 4 EC with Mets to liver and nodes. Dx on July 16 from bx and Pet scan. He started chemo 2 days later, which he has tolorated very well, but the swallowing has gotten worse. Many of you gave great advise about a J-tube but my stubborn dad won't do it as he thinks it means that's the end and he would be some kind of vegtable hooked up to be fed. We know that is not true but at this point he has refused. Part of the resistance comes from having my little sister die last summer due to a botched Gastric Bypass. She was on tube feeding then TPN and suffered tremendously for 2 years before she passed at my parents home 14 months ago leaving her daughter for my parents to raise.
No to the stent. He had it placed on the 23rd. He has had a lot of pain, burning, and vomitting since then. His Dr said the pain was from the "streching" and shouldn't last more than a couple of days. He started taking Prilosec for the burning and sleeping propped up. He is worse. He says he can feel the tumor being "pressed". The vommiting is scary. When they placed the stent he was told that the cancer has grown larger and when they touched it, it bleeds so he may need blood transfusions. Only one of the days did he throw up dark blood and what looked like some kind of tissue. His MD said it was dead cancer cells. That sounds like crap to me. Has anyone heard of throwing up part of your dying tumor after chemo?
We know the risks of stents, migration, heartburn, ect. Does anyone have any experience with a stent? I remember Unclawed dad did and was not good. Anybody with advice or ideas to make this stent experiece better? How long did it take to get some relief from the stent?
Other than the swallowing problems and some fatigue my dad had been doing well. He still works full-time at the hospital where he is being treated. He loves his job and wants to work til the end. He is being treated and surounded by the doctors and nurses that are his friends and co-workers. I believe they have his best interest at heart but I question there ablilities sometimes. I know I'm being a nagging daughter, but this is not a cancer center. He did get a second opinion from a major hospital with an EC Center. They gave him the same advice and his drs do still consult with the EC Center on his treatment. I want my dad to get his treatment there but it is 100 miles away and out-of-network for insurance. Financially, being treated at his hospital is great as it is all paid for, but I think the surgeons and staff would be much more skilled at the other. Both sets of doctors agreed that EC is the beast and the outcome isn't going to change if he is treated in his hometown. How can that be? Dad had this super positive attitude at first that he was going to beat this but I think his choices in care are showing otherwise. I know we could never get him to fly to another part of the country to another cancer center for a 3rd opinion.
Between his stubborness and stent troubles I don't see this ending well. I take that back. It will end well in that my dad is Saved by Christ and walks his faith. He will end this journey in Heaven at peace with Jesus. It is the in between now and then that scares the H@%% out of me!
Thanks for your support. I pray daily for the EC board.

Deb in NE

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  • LivingFaith
    LivingFaith Member Posts: 74
    unknown said:

    This comment has been removed by the Moderator

    stent trouble

    Thanks Sherri. I do feel frustrated and worried about my dad a lot and so does my mom. After visiting yesterday I realize it is about control. We all feel out of control of this beast. By suggesting or plain nagging, treatments I feel like I'm at least doing something.
  • unclaw2002
    unclaw2002 Member Posts: 599
    Deb,
    Hi, I am unclaw2002 and

    Deb,

    Hi, I am unclaw2002 and I would be happy to speak to you personally about the stent issue. You may contact me at my personal email collinscin@gmail.com and give me your number.

    This is a really important issue and my dad's stuborness almost cost him his life and has become a big factor in limiting his options now because of the debiliting effect of the stent on his health. Also, you may want to check Susan posts under Lyle's my Prince. Her husband also had a stent, it wrapped around the tumor and into his esophagous and caused really severe complications. I am not trying to scare you ---- thats not true - I am trying to scare you so you can get your dad to get a j-tube and stop playing around with the stent. One really difficult thing, amoung the many of EC, is that because it involves the one organ part that gets nurishment into your body that ensuring that you can get proper nutrition during chemo and radiation doesn't just involve getting around the nausau and lack of appetite from the chemo but the actual physical inability to eat or drink.

    Good luck --- I know first hand how hard it is to watch people make mistake after mistake and have to stand by and know you will have to pick up the pieces. It isn't easy and you are right for someone like me that likes order and control and has lots of control professionally this whole experience has been one of growth for me in learning how to let go.

    Best,
    Cindy
  • nancyann3
    nancyann3 Member Posts: 173 Member

    Deb,
    Hi, I am unclaw2002 and

    Deb,

    Hi, I am unclaw2002 and I would be happy to speak to you personally about the stent issue. You may contact me at my personal email collinscin@gmail.com and give me your number.

    This is a really important issue and my dad's stuborness almost cost him his life and has become a big factor in limiting his options now because of the debiliting effect of the stent on his health. Also, you may want to check Susan posts under Lyle's my Prince. Her husband also had a stent, it wrapped around the tumor and into his esophagous and caused really severe complications. I am not trying to scare you ---- thats not true - I am trying to scare you so you can get your dad to get a j-tube and stop playing around with the stent. One really difficult thing, amoung the many of EC, is that because it involves the one organ part that gets nurishment into your body that ensuring that you can get proper nutrition during chemo and radiation doesn't just involve getting around the nausau and lack of appetite from the chemo but the actual physical inability to eat or drink.

    Good luck --- I know first hand how hard it is to watch people make mistake after mistake and have to stand by and know you will have to pick up the pieces. It isn't easy and you are right for someone like me that likes order and control and has lots of control professionally this whole experience has been one of growth for me in learning how to let go.

    Best,
    Cindy

    Stents
    Just thought I would put my experience with the stent in. Everyone is different, so whats good for one may not be for another. My hubby is on his second stent. The first one caused him a lot of pain and scratchy throat. It was hard to get him to eat. When it started to move, I believe it caused a lot of irritation in the esophagus. His stent moved up, where most move down. In July they replaced the stent. We were very worried about getting another and almost refused it, but the doc said it was important because he couldn't even swollow his own saliva. This stent has been completely different. No pain, no scratchy throat. It is a different kind of stent. Metal instead of plastic. They also placed a J tube at the same time. We know the problems a stent can cause, but if one works it is great because it gives the survivor the ability to eat and keeps life somewhat normal for them. But the j tube is there for any problems he may have with the stent or during treatments. I am a big fan of the j tube, it gives the caregiver piece of mind, but the stent gives the survivor the ablility to keep some normal living.

    Maybe it might just take a different kind of stent for your dad. But I wouldn't rule out a Tube either.


    Nancy
  • rlasalle
    rlasalle Member Posts: 3
    Dear Deb in NE
    I am 47 years old with Stage 4 Esophageal Cancer. I am also a RN and the President & CEO of a Hospice and Pallaiitve Caree organization in NC. Although I presently do not have difficulty swallowing, I just had a PEG tube placed today, since I needed to go under for a smart port for upcoming chemo. I did the tube for mega veggie juicing. I just learned about maple syrup and baking soda. You slowly cook 3 to 1 maple syrup to baking soda for 4 minutes (DO NOT BURN) once it cools down a little, you take a tablespoon two times a day for 3 days, then once a day. I am aware of this helping people swallow again who had difficulty, including myself. I know sugar uiis bad, but the maple syrup is suppose to act as a trojan horse to get the sodium bicarbonate into the cancer cells making them alkaline and kiiling them. I have a you tube video on this. Just go on you tube and search "Ron LaSalle cancer" or go to RonsVictory.com and see my video link 0on the left tab. Also, please feel free to call me or have your dad call me anytime at 828-443-7902. I will be glad to talk with him about the benefits of a feeding tube. As for me, I did the feeding tube to help build up my immune system by consuming many veggie juices that I would not be able to tolerate well by mouth. Diet is extremely important.
  • emg09
    emg09 Member Posts: 228
    rlasalle said:

    Dear Deb in NE
    I am 47 years old with Stage 4 Esophageal Cancer. I am also a RN and the President & CEO of a Hospice and Pallaiitve Caree organization in NC. Although I presently do not have difficulty swallowing, I just had a PEG tube placed today, since I needed to go under for a smart port for upcoming chemo. I did the tube for mega veggie juicing. I just learned about maple syrup and baking soda. You slowly cook 3 to 1 maple syrup to baking soda for 4 minutes (DO NOT BURN) once it cools down a little, you take a tablespoon two times a day for 3 days, then once a day. I am aware of this helping people swallow again who had difficulty, including myself. I know sugar uiis bad, but the maple syrup is suppose to act as a trojan horse to get the sodium bicarbonate into the cancer cells making them alkaline and kiiling them. I have a you tube video on this. Just go on you tube and search "Ron LaSalle cancer" or go to RonsVictory.com and see my video link 0on the left tab. Also, please feel free to call me or have your dad call me anytime at 828-443-7902. I will be glad to talk with him about the benefits of a feeding tube. As for me, I did the feeding tube to help build up my immune system by consuming many veggie juices that I would not be able to tolerate well by mouth. Diet is extremely important.

    stent
    Hi,

    As for the stent. I have to say get it out. My dad had 1 and everything turned out worse. He suffered terribly with chest pain and hiccups. It finally migrated to his stomach and was stuck in the walls of the stomach. He was also having bleeding. It was a horrible experience for him. Thank God they were able to remove it. He also refused the feeding tube, had the G tube put in, which was also a mistake. The J tube would have been the best option. His Dr. insisted on the G tube. Anyway, push him to at least have the J tube. It will be a life saver for him. Have that stent removed before it migrates and causes more problems. My dad lost his battle, this is such a horrible cancer. I wish you the very best in the horrible roller coaster ride. This is a wonderful site to be on. I don't come on very often, it's still hard to read and reminds me too much of my dad's struggle. Take care!!