Never swallow again???

mamaree

Hello, I live in a small Texas town just lucky enough to have an Oncology Clinic and a teaching hospital. I was diagnoised with stage 4 base of the tongue cancer with lymphnode envolvement, last Sept, 2009. I underwent cemo and radiation treatments. I wore a cemo pump 5 days a week and had radiation treatments 5 days a week except hollidays from October 2009 until Feb. 2010. A feeding tube was inserted before I started treatment because the DR. said I would get to point that I could not swallow. I continued to eat until I was well into the treatment and got a yeast infection in my mouth and throat. It was difficult to get rid of and was too painful. Soon after that I could not even swallow water at all. The Dr told me to use Boost food suppliment from the grocery store. I used a juicer and made lots of raw vegetable juices, yogert, tofu and soy milk shakes. I used cancer fighting foods and took suppliments through the tube. I was still loseing weight. My treatment ended and I had to wait a month to have a cat scan to see if the cancer was gone or not, and I continued to lose weight. It would take me all day to make my juice, because I was so tired I couldn't stand up long enough. I was vasilateing between constipation and diarea I had no one to help me. Finally my Dr suggested a nurseing service because I was losing too much weight. The nurseing service got me started on Jevity and i began to gain. I stabilized at 130 which is ok. But after 8 months I still cannot swallow. My throat Dr. says I may never be able to, because I have a huge hole or ulser where the cancer was and there is nothing he can do about it. I cannot accept this. I practice chewing and swallowing, but have a hard time moving food around in my mouth and have to use my fingers. I cannot spit, and have to dig the food from my mouth with my fingers. I cannot swish water around in my mouth and have a time washing it out. But I will keep trying because there is no quality to life this way. I am cancer free, and am grateful for that but the idea of tube feeding for the rest of my life is unthinkable. Has anyone else had any experience with this and have any suggestions. The Doctors here just ignore my questions and say there is nothing they can do.

Hondo

Small Town Victim
Mamaree

I too suffer from small town doctors who did not do all there homework. After my second treatment for NPC I could not open my Jaw more then ½ inch and it is still that way 5 years later. I complained to my Oncla and ENT but all they could say was they did not anticipate I would have survived this long so they did not offer treatment to keep the Jaw open.

I suggest you going to MD Anderson or someone like them and get a second opinion from professional doctors. I am now going there and getting a lot better results in my health. I have also found a doc there willing to help me with my Jaw problems, but just found out the insurance will not pay for the treatment I need. Just another little road block we all live with.

Take care and welcome to our Family here on CSN

fisrpotpe

Hondo said:

Small Town Victim
Mamaree

I too suffer from small town doctors who did not do all there homework. After my second treatment for NPC I could not open my Jaw more then ½ inch and it is still that way 5 years later. I complained to my Oncla and ENT but all they could say was they did not anticipate I would have survived this long so they did not offer treatment to keep the Jaw open.

I suggest you going to MD Anderson or someone like them and get a second opinion from professional doctors. I am now going there and getting a lot better results in my health. I have also found a doc there willing to help me with my Jaw problems, but just found out the insurance will not pay for the treatment I need. Just another little road block we all live with.

Take care and welcome to our Family here on CSN

Agree
I agree with Hondo, go check out MD Anderson. I have heard nothing but outstanding results. The doctor you have now needs to learn to do anything and everything.

I have a friend who was having the same problem with his swallowing and feeding tube. He had no money or insurance. What he did was say I am going to continue to fight and work at trying to swallow. He did and now is able to swallow but not like normal and continues to work at it.

Don't give up, never give up and find a doctor who is willing to work with you.

Welcome to CSN, there is a huge body of knowledge and support here.

John

Pam M

Hello
I, too, was diagnosed last year with Stage four base of tongue with lymph node involvement. Luckily, I have been able to have my PEG removed, and can eat more than enough to maintain my weight. I'm sorry to hear you are unable (at this point) to take in your nutrition via mouth. Glad to hear you are not giving up. Did you have surgery? Was your primary tumor huge? My primary was at a 2, and I had no surgery to remove tumors. Here's hoping you can make some progresss.

Have your doctors said anything about you visiting a speech therapist? My doc sent me to one for exercises to do to help me keep my swallowing abilities, and if I had experienced difficulties after treatment, he'd have sent me back to the therapist.

Kimba1505

fisrpotpe said:

Agree
I agree with Hondo, go check out MD Anderson. I have heard nothing but outstanding results. The doctor you have now needs to learn to do anything and everything.

I have a friend who was having the same problem with his swallowing and feeding tube. He had no money or insurance. What he did was say I am going to continue to fight and work at trying to swallow. He did and now is able to swallow but not like normal and continues to work at it.

Don't give up, never give up and find a doctor who is willing to work with you.

Welcome to CSN, there is a huge body of knowledge and support here.

John

More support than knowledge.
Mamaree,
I am sorry that you have had to find this site and I am sorry to hear about your swallowing situation. I am the partner and caretaker of Mark, 3+ months post treatment from SCC tonsil Stage IV HPV+.
But since you are here...welcome and know that there are wonderful people here with vast experiences around the same matter: Head and Neck Cancer.
I agree with John and Hondo to seek some additional opinions. Mark and I live outside Philadelphia, and I truely believe having the choice of 3 NIH (National Institute of Health) cancer hospitals, and going to one of them, really not only saved Mark's life, but saved his quality of life. It was what he was most afraid of losing. I remember him telling his ENT surgeon, "I am not afraid of the treatment, I am not afraid to die, I am afraid to live without a quality of life." I feel all his doctors (surgeon, radiologist, and oncologist) have all made treatment choices for him to save his life and preserve the quality of it. At 3 months post he is doing amazingly well. I celebrate his doctors.
It is okay to see another doctor. I like that you keep trying...that never give up spirit will get you through. Find a doctor who knows a little, or a lot, more.
Best,
Kim

kimmygarland

Pam M said:

Hello
I, too, was diagnosed last year with Stage four base of tongue with lymph node involvement. Luckily, I have been able to have my PEG removed, and can eat more than enough to maintain my weight. I'm sorry to hear you are unable (at this point) to take in your nutrition via mouth. Glad to hear you are not giving up. Did you have surgery? Was your primary tumor huge? My primary was at a 2, and I had no surgery to remove tumors. Here's hoping you can make some progresss.

Have your doctors said anything about you visiting a speech therapist? My doc sent me to one for exercises to do to help me keep my swallowing abilities, and if I had experienced difficulties after treatment, he'd have sent me back to the therapist.

Husband Can't Swallow Either
My husband had radiation and chemo, cancer came back, he had big surgery to remove tumor and also had neck dissection. They had to put a flap in his throat and basically reconstruct it. He can only swallow very small sips at this time, but just started swallow therapy. Doc says there are no guarantees he will ever be able to swallow.

We are in Dallas and at University Texas Southwest Medical Center/Hospitals. I would suggest you try and make a trip there for a second opinion. They are excellent and we have been very happy with all our caregivers.

And we pray daily that my husband will get his swallowing ability back, but if he doesn't and the cancer stays AWAY, he says he can learn to live with the tube. He is taking in between 2500 - 3000 calories a day in formula and still losing a bit of weight but it seems to be stabilizing a little bit.

I hope you can find some help. You are not alone.

mamaree

Pam M said:

Hello
I, too, was diagnosed last year with Stage four base of tongue with lymph node involvement. Luckily, I have been able to have my PEG removed, and can eat more than enough to maintain my weight. I'm sorry to hear you are unable (at this point) to take in your nutrition via mouth. Glad to hear you are not giving up. Did you have surgery? Was your primary tumor huge? My primary was at a 2, and I had no surgery to remove tumors. Here's hoping you can make some progresss.

Have your doctors said anything about you visiting a speech therapist? My doc sent me to one for exercises to do to help me keep my swallowing abilities, and if I had experienced difficulties after treatment, he'd have sent me back to the therapist.

Tumor
My tumor was huge. It grew up into my mouth before they could get it under control. The Oncologist says it left a large hole, and my throat specialist calls it an ulcer and says nothing can be done about it. I think I will take everyone's advice and see another throat man. Seems to me an ulcer should heal and I could be doing more to help myself while it does.

Hondo

mamaree said:

Tumor
My tumor was huge. It grew up into my mouth before they could get it under control. The Oncologist says it left a large hole, and my throat specialist calls it an ulcer and says nothing can be done about it. I think I will take everyone's advice and see another throat man. Seems to me an ulcer should heal and I could be doing more to help myself while it does.

Tumor
I will be praying that you find the right doctor who will help you.

Take care