please read if you have had radiation treatments

lisa333
lisa333 Member Posts: 12
edited March 2014 in Esophageal Cancer #1
Hello,
My father received 10 radiation treatments ending 4/23/10
We were told yesterday that the radiation treatments will have burned away his taste buds and he will not have any ability to taste flavor even if he heals enough to be able to swallow and handle food by the mouth.We are waiting to find out the date of this swallow test. Could you please contact us if you have had radiation and tell us is this true? Are you still able to enjoy food by the smell and eating sensation?and how long did it take for you to be able to swallow or suck on a lozenge?
I have heard that it is better to start of with liquid that is a little thicker then water, Have you found this to work better?
We have been in the hospital since 4/ 29/10 .
Up until this very day he has been sick and greatly dehydrated with chronic nausea and diarrhea. We have him started on Peptamen AF by nestle on the pump at 20 ml per hr with multiple anti nausea and he is stabilizing.
My father would greatly be encouraged if he could know from those of you what you have been able to achieve, or if he has lost all taste options it would be better to at least know from your own actual experiences.
Thank you for your responses and help
Lisa

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    Welcome
    Hi Lisa and welcome to our family. I have not, nor know anyone who has experienced this side effect from radiation treatment. I have heard of this though. I know that you will recieve many responses to your post. Best of luck to you and your dad. Keep in touch.
    Tina
  • lisa333
    lisa333 Member Posts: 12
    #4
    unknown said:

    This comment has been removed by the Moderator

    Taste buds !
    Dear Sherri,

    Hi, how are you doing?

    There was a 4.5 cm tumor at the base of the esophagus.

    This is REALLY good news,It broke his heart when we got the information yesterday of all taste loss. How long was it before Jim started putting any thing in his mouth, and what did he start with?

    Lisa
  • lisa333
    lisa333 Member Posts: 12
    #5
    Tina Blondek said:

    Welcome
    Hi Lisa and welcome to our family. I have not, nor know anyone who has experienced this side effect from radiation treatment. I have heard of this though. I know that you will recieve many responses to your post. Best of luck to you and your dad. Keep in touch.
    Tina

    thank you for kind words
    Hi Tina,

    I am all ready feeling hope from these 2 responses and know that the others who read this will have helpful information.
    This is a great lifeline for all who read and post here.

    Lisa
  • cjmac49
    cjmac49 Member Posts: 100
    #6
    lisa333 said:

    thank you for kind words
    Hi Tina,

    I am all ready feeling hope from these 2 responses and know that the others who read this will have helpful information.
    This is a great lifeline for all who read and post here.

    Lisa

    Taste buds
    Lisa,

    I had 30 radiation treatments - 5 day/week for 6 weeks. Still have my taste buds 21 months later. My food preferences have changed a bit and I no longer like some things and others that I didn't like before are better now. I don't know why.

    Jim
  • lisa333
    lisa333 Member Posts: 12
    #7
    cjmac49 said:

    Taste buds
    Lisa,

    I had 30 radiation treatments - 5 day/week for 6 weeks. Still have my taste buds 21 months later. My food preferences have changed a bit and I no longer like some things and others that I didn't like before are better now. I don't know why.

    Jim

    How to start the process?
    Hi Jim,

    I'm happy to hear from you!

    How long did you have to wait before they tested you and gave the OK to start putting anything in your mouth?

    What did you start with that was the easiest for you to use without nausea?
    Did you suck on anything like a hard ginger candy I saw online first to get things started?
    My dad is testing I can not wait to give him this news and read these posts.

    Lisa
  • Unknown
    Unknown
    #8
    This comment has been removed by the Moderator
  • cjmac49
    cjmac49 Member Posts: 100
    #9
    lisa333 said:

    How to start the process?
    Hi Jim,

    I'm happy to hear from you!

    How long did you have to wait before they tested you and gave the OK to start putting anything in your mouth?

    What did you start with that was the easiest for you to use without nausea?
    Did you suck on anything like a hard ginger candy I saw online first to get things started?
    My dad is testing I can not wait to give him this news and read these posts.

    Lisa

    My start.
    Lisa,
    I had a minimally invasive esophagectomy in Aug 08. I was in the hospital for 9 days. I was tested for leaks - barium swallow test - on the 5th day and passed. I was allowed sips of water on the 6th day and clear liquids on the 7th. I insisted on eating something solid before I went home. First solid meal was on the 8th day - a thin (very thin) 1/2 egg salad sandwich on white bread, no crusts. BEST sandwich I ever ate. I am able to eat most foods without problems. I have to restrict my single meal intake to about 1 cup to 1 1/2 cups of food total. I also have to eat very slowly and chew everything forever. I am somewhat lactose intolerant and do have issues with dumping to various degrees. I only had nausea a few times and it was never that bad. I have been, and continue to be, very fortunate.

    My tastes have changed but are still there. Everyone is different and every recovery is uniquie. Once I got the go ahead to eat I began experimenting - not without problems - but it was worth it.

    Good luck to you and your dad. I hope his recovery is easy.

    Jim
  • Myrtle9
    Myrtle9 Member Posts: 9
    #10
    Hope this helps
    Hi Lisa

    My prayers and best wishes to you and your family. My husband had surgery for a 6 cm. tumor at the junction of the esophagus and stomach about a yr. and one half ago, and underwent radiation and chemotherapy afterward. He experienced no eating difficulty because of the radiation and strangely, the only thing that he has completely lost his taste for his milk chocolate! Dark chocolate sets well however. He had a jtube after surgery and needed it a little longer than he was first told and with a pump, they were able to change the amts. of fluid as he could handle. We also decreased the amts. and slowed it down as he started eating better because he's start to get too full and almost nauseous. He doesn't take just plain water anymore either since he doesn't care for the consistency of it. All his food is at room temperature and even his lactose free milk is put in the microwave.

    Take care,
    Bonnie
  • unclaw2002
    unclaw2002 Member Posts: 599
    #11
    Hi,
    The radiation didn't
    Hi,

    The radiation didn't effect my dad's taste buds --- but the chemo has. The chemo stops rapidly growing cell and your taste buds are rapidly growing cells so the chemo kills off your taste buds. The radiation make it painful to swallow sometimes depending on the patient. My dad is still in the midst of the treatment so can't say how long before it comes back.

    Cindy
  • Unknown
    Unknown
    #12
    This comment has been removed by the Moderator
  • lisa333
    lisa333 Member Posts: 12
    #13
    unknown said:

    This comment has been removed by the Moderator

    can you suggest any quality hospital in the Detroit area ,?
    Dear William,

    I am at the hospital and wrote a long email message detailing what has been happening, and it went away because the hospital web wireless connection drops after a time frame.
    I don't know if it it stored somewhere here on this website undelivered, or if I have to rewrite it,I am out of time now.
    We need your help if there are any suggestions for a quality hospital in the Detroit area, I am investigating them now.
    I will email again later today.

    Thank you for following us with your care!

    Lisa

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