Swallowing Issues

I am not new to this site, just new to posting.  I've gained valuable info from this site while I was battling Stage IV bilateral tonsil cancer.  My treatment started March 17,08 and concluded May 9th.  I had 35 radiation treatments and weekly Taxol-Cisplaitan chemo.  Had a PET scan in June wiich came out clear. Prior to that, I had a Modified Radical Neck Dissection on the right side.  I want to thank everyone for the valuable information I gained from this site.

I am having swallowing issues and my ENT that did my dissection couldn't do anything for me.  Luckily, he is a graduate of the University of Chicago and got me in right away.  They did a swallow test and it was completely plugged.  They were able to stretch it yesterday and it was a success.  The ENT got a chest surgeon to go up through my PEG tube and shine a light at my esophagus so my ENT knew where to probe.  I will go in next week for another swallow test and exercises.  Today I'm able to take small sips of water. 

 I just want everyone to know that they are a fantastic team.  They treated me like a person and not like a number. I was treated with great passion and consideration.  I've heard that they are one of the best in the nation for head and neck cancers.  So if some of you are still having issues, if you can, give them a try.

I have maintained a positive attitude through all of this and my belief in God helped me win this battle. I have found out that you have to push yourself to get through this.  Believe me, I wanted to give up at times, but I just dug down deeper. So if your docs tell you nothing can be done, by all means find another one.  Cancer is not the end. 

 

On 8/5/2008 jimbo46 wrote:

I am not new to this site, just new to posting.  I've gained valuable info from this site while I was battling Stage IV bilateral tonsil cancer.  My treatment started March 17,08 and concluded May 9th.  I had 35 radiation treatments and weekly Taxol-Cisplaitan chemo.  Had a PET scan in June wiich came out clear. Prior to that, I had a Modified Radical Neck Dissection on the right side.  I want to thank everyone for the valuable information I gained from this site.

I am having swallowing issues and my ENT that did my dissection couldn't do anything for me.  Luckily, he is a graduate of the University of Chicago and got me in right away.  They did a swallow test and it was completely plugged.  They were able to stretch it yesterday and it was a success.  The ENT got a chest surgeon to go up through my PEG tube and shine a light at my esophagus so my ENT knew where to probe.  I will go in next week for another swallow test and exercises.  Today I'm able to take small sips of water. 

 I just want everyone to know that they are a fantastic team.  They treated me like a person and not like a number. I was treated with great passion and consideration.  I've heard that they are one of the best in the nation for head and neck cancers.  So if some of you are still having issues, if you can, give them a try.

I have maintained a positive attitude through all of this and my belief in God helped me win this battle. I have found out that you have to push yourself to get through this.  Believe me, I wanted to give up at times, but I just dug down deeper. So if your docs tell you nothing can be done, by all means find another one.  Cancer is not the end. 

Hi

Welcome to the end of the tunnel.  I had three swallowing studies and apparently my problem was due to muscles that control the flap over my esophagus being severely affected by radiation.  The flap didn't cover the esophagus quickly enough so I would choke.  I had vita stim treatments along with exercises and within 6 weeks I was eating.  I live in a suburb of Chicago and it is always nice to know that we have yet another good facility to be treated. 

Diana 

Thanks Diana,

 It's good to know that I'll be eating soon.  What's cool about the whole thing is that I'm from Northwest Indiana and don't have to get on the Ryan!

;)

 

On 8/5/2008 jimbo46 wrote:

Thanks Diana,

 It's good to know that I'll be eating soon.  What's cool about the whole thing is that I'm from Northwest Indiana and don't have to get on the Ryan!

;)

Avoid the Ryan at all costs.  Luckily I'm out west of of the Stevenson.  I have found that I now have a new normal as far as food goes though.  Steak is a food of the past - but I can live with that.  I buy the slices of ham (not the deli kind but the type you buy at Easter) and that works better than any meat.  It's trial and error but so much better than watching everyone eat.  Good luck with the swallowing. 

Diana

 

Good to hear that youre working through your problems. I had the swallow study done,too, and was given some simple exercises to do. Everything seems to be working ok, but I still occasionally have problems, the old throat just aint what she used to be. I had Stage IV tonsil cancer, left side with lymph node involvement, 7 weeks of IMRT and cisplatin. I was lucky in that the docs waved off on the surgery. It's good to hear that you are happy with your docs, there are too many horror stories about assembly line doctors. I was lucky too, I have nothing but good to say about the care I have been getting at Regions Cancer Center and Healthpartners Specialty Clinic, both in St. Paul, MN.

Best wishes,

Mike

Mike-didn't know you were in MN. I live in Princeton, about 1 hr north of Mpls/StP. I Dr'd thru the HHH Cancer Center in Coon Rapids, having rad at Mercy Rad. I was able to do my chemo right here in town, thru the Fairview system. Both my parents are also Dr'ing thru the same (we share oncologists!) We've all been so happy with everything connected to these Dr's/clinics/hospitals. We were also told by the Mayo we are getting the best care available here-which is good to know. Gayle

My husband recently had his right tonsil removed and diagnosed with cancer from the tonsil that spread to his lymph nodes. The cancer was in the tonsil and some on the outside which required removing some of the muscle tissue from the inside of his throat. He just finished his chemo and radiation combo treatment plan (7 weeks). He has had his PEG tube in for 3 weeks and will continue for at least another 2 months at least. I am concerned with the very thing you just experienced. My husband has not swallowed anything for the past 3 weeks or longer. He has severe - veyr severe mucus and extreme anxiety about choking to death. My husband has lost his voice almost totally. It is like he is scared to do anything with his throat at all. What were you symptoms to know of your problem. What can you tell me that we should be looking out for over these next few weeks or any help at all. Thank you so much

 

On 8/9/2008 Virginia Sailfish wrote:

My husband recently had his right tonsil removed and diagnosed with cancer from the tonsil that spread to his lymph nodes. The cancer was in the tonsil and some on the outside which required removing some of the muscle tissue from the inside of his throat. He just finished his chemo and radiation combo treatment plan (7 weeks). He has had his PEG tube in for 3 weeks and will continue for at least another 2 months at least. I am concerned with the very thing you just experienced. My husband has not swallowed anything for the past 3 weeks or longer. He has severe - veyr severe mucus and extreme anxiety about choking to death. My husband has lost his voice almost totally. It is like he is scared to do anything with his throat at all. What were you symptoms to know of your problem. What can you tell me that we should be looking out for over these next few weeks or any help at all. Thank you so much

Hi Virginia

First, please tell your husband there are many of us that have been exactly where he is now - and we made it!   I had SCC of the left tonsil and had chemo/radiation treatments.  5 infusions of Cisplatin Chemo and 7 weeks 2x daily of TOMO radiation.  I am 9 months post treatment and the mucous and weak voice are a distant memory.  If at all possible, your husband should at least try to swallow some water if he can.  The longer he goes without swallowing anything the less plyable the muscles get that close the flap over the esophagus - which translates into longer time using the PEG tube. 

I guess the biggest surprise for me was I expected the effects from radiation to stop escalating the day radiation stopped.  I was surprised and scared when the effects continued to worsen over time.  You will hear anywhere from 4 to 8 weeks (mine was about 8 weeks) before everything starts leveling off.  When he has crossed the 8 weeks post treatment mark it is all down hill from there.  My husband travels with his job and there were many calls home that I could only get 5 or 6 words out and they were an effort.  The mucous continues to get worse over the wks up to 8 wks.  He will be spitting it out all day.  Just keep rinsing w/ salt and baking soda in water.  It helps clear out the mouth for a short period.  I couldn't sleep lying down and had to sleep in my recliner. 

If anyone had told me 7 - 8 months ago that I would make it through and be where I am - I would have seriously doubted them.  Last Friday, the naturopathic at CTCA where I was treated was using me as an example to another patient having a tough time of it.  If any complication could arise it did with me.  She was telling him how I was back that day and had just got the results from my CT scan and blood work - no sign of any cancer - I am now considered cancer free!!!! 

The going will get a little rougher before it gets better but the day your husband hears "You are cancer free" it will all be worth it.  As my radiation oncologist's nurse said Thur - "Now you know why we kicked your butt last year."  Remember, all of us that have been down this road are behind you now rooting you on toward the finish line (and there is a light at the end of the tunnel).  Any other questions, just let us know.  Someone will have an answer for you.

Diana

Diana 

Thank you so much for yor response. Is it also normal for the mucus to have blood in it? How do I make up the salt water/baking soda mixture? Is there a certain amount of each? I thank you again. This has been such a scary ordeal and continues to be scary because it does seem to be such a long ordeal with so many new "speed bumps" as we move forward. Thanks again Melissa

 

On 8/10/2008 Virginia Sailfish wrote:

Thank you so much for yor response. Is it also normal for the mucus to have blood in it? How do I make up the salt water/baking soda mixture? Is there a certain amount of each? I thank you again. This has been such a scary ordeal and continues to be scary because it does seem to be such a long ordeal with so many new "speed bumps" as we move forward. Thanks again Melissa

Hi Melissa

I would say it is not abnormal especially if the blood is a brighter red.  Sometimes just from clearing our throats enough to get the mucous out irritates the throat and can cause bleeding.  Fresh blood will be a brighter red whereas blood from some type of internal problem tends to be a much much darker red (almost reddish black).  As for the baking soda and salt, I used 1 teaspoon of each in a 8 oz glass of water.  I kept it right next to the sink so it was easy to mix up.  You can over use - I used to say it kind of scrapes the sides of the mouth and loosens it for a while.  Just remember, that the mucous will continue to get worse for a period of 4-8 weeks and this is NORMAL so don't worry about it.  It is all scary - and I know I have been down that road and was scared to death and didn't think I would ever get back to normal but I made it.  When I look back I realize that even though it was the pits when I went through it, actually I was very fortunate.  We have a cancer that is cureable when caught early and has a good prognosis.  Others who are diagnosed with GBM (brain cancer) or pancreatic cancer have even more of a fight on their hands.  I don't think you are ever quite the same after being diagnosed with cancer.  In some ways you appreciate life so much more. 

Eating will change also post treatment.  Everyone is difference but for me the girl who was raised by a father that didn't think a food was hot until steam came out your ears - who absolutely loved hot spicy foods - I can no longer tolerate them.  I took one bite of a Wendy's spicy chicken sandwich 2 weeks ago and started choking - that was always one of my favorites.  I also can't eat steak that easily so I give up trying.  It seems to expand in my throat and I choke easily on it.  Ham slice (like the kind you have at Easter - not a lunch meat) is the easiet meat to eat.  It holds moisture and doesn't expand.  Your husband will find trial and error when he gets back to eating.  Salted items tasted almost gritty to me once my taste buds started kicking in again.  Gravy with everything became the norm to help foods slide down. Macaroni and cheese (the powder cheese though as regular cheese you don't want to try in the beginning).  Breads are more difficult in the beginning.  Softened veggies are great - especially french cut style green beans.  I still today find water the most difficult thing to swallow as it is very easy to go the wrong direction.  I have to take a drink - hold my head still looking straight ahead  - and then swallow. 

As I said before, a team is much more effective than one player.  You have an entire team here rooting you and your  hubby on.

Diana