Swallowing

I had tonsil cancer. I had 42 radiation, and 3 chemo. I am now in remission, but i have a feeding tube and have not eaten in over a year. They tried streching my throat but it is still going down in my lungs. They are going to start doing shock therapy on my throat muscles. Does anyone know will this work,and how long it will take. I have gone from 129 to 91lbs.i cant stand not being able to eat.i take jevity.5 about 5-6 times aday. Is there another surgery they can do. Someone said i may never eat again--which i dont think i can handle. I get so hungry even with the jevity. Can someone help me on this.  Thank you,    jan

Oh, Jan, I so know what you're going through.

I had tonsil cancer, and finished radiation last May. Two subsequent PET scans have been negative, so at least we have beat the c- offensive word removed at least for now; I'll have to have follow up PET and CT scans for the next several years to be sure she's not gaining on us.

But not being able to eat is just the worst. I have a tube, too, and haven't eaten or drunk anything since last April. I have been doing swallow therapy 3x a day for the past six weeks, and my most recent barium swallow test on Tuesday showed the therapist a huge improvement in my swallowing muscle--but I cannot swallow without aspirating yet. My epiglotis--which I had thought was fried beyond any possibility of usefulness--has recovered some suppleness.So I have to continue with the swallow therapy for another eight weeks and then have another test.

I have been begging to try the Vital Stim, but my therapist says I am not ready for it so I have to rely on her professional judgement. But I have heard great things about this electric therapy.

It sounds like you are not getting sufficient calories. I went from 245 down to 205lbs, and have pretty much leveled off there. I have 1 1/2 cans of Nutren 1.5 with fiber at 8AM, noon, 4PM and 8PM. Thats when I crush  my meds and take them with the Nutren. Nutren is a bit thick for the tube, so I dilute it some.

If you want to write and share issues and commisserate try me at esripvw at a-oh-el dot com. If the administration of this web site detect us exchanging addresses, they block it.

Best of luck. Let's fight this, and then go to lunch some day.

Jan, I just noticed your message was from last September. I wish I had seen it sooner. How are you? I  hope you got my message. They took out the word I used to refer to cancer with (quote offensive word removed unquote)--think the word for a female dog.

Write me right away. My address is at the end of the other message.