New to Forum but can't seem to get my messages posted. Any help?

Drivingdaisy

Lets see if this gets posted

MrsBD

It did. Welcome!
 

It did. Welcome!

 

Drivingdaisy

Thank you MrsBD. Let see how this goes

Hi, my name is Lisa, 58, diagnosed with T3 NOMO, SSC, Left tonsil mass, Jan of this year.  I am presently 2wks post treatment.  My treatment plan included 6 rounds of Taxol/Carboplatin 1 day a week and IMRT Radiation 5 days a wk for 7 wks.  I had to take a week off in the middle due to severe mouth/neck pain. I wish I would have seen your forum earlier in my diagnosis since you offer so much information and support.  Something I truly needed.  Now that I found you I would like to be able to join in and ask questions regarding what to expect next in this tough road to recovery.  Thank you.

Drivingdaisy

Ouch

Being new, I would like to meet and talk with all of you.  Going on week 3 and my mouth is still developing new sores and my throat seems worse than it was at the very end of treatment.  Also, heavier, non-stop mucus has developed full time, not part time as before.  Seems to be causing the burning but not sure.  All this is hampering my ability to progress further in adding new fluids to my diet. Now I am limited to water, tea, milk occasionally, broth, and weak cream of chicken soup. How do I get more nutrient /calories so I can get rid of my G-tube. Daily shakes go through the tube still since the mucus seems to interfere with swallowing.  Frustrated with lack of food ( I'm hungry !!!!) and constant pain. Suggestion ?

phrannie51

I didn't have any luck last night

Posting.....so lets see if this will post.

p

Barbaraek

Daisy..

It's not unusual to have heavy mucositis after treatment. It seems to last for a while and then slowly gets better. My husband found it helpful to sleep more upright in a recliner and to use a humidifier at night. Also the more liquids you can ingest the more it will thin the mucus. Over the counter mucinex works too and can go right in your tube.

As far as mouth pain and burning - L-glutamine powder dissolved in water can help. You can swish and swallow or swish and spit. There is also a product called GelClare which may be beneficial.

Boost your calories with the high calorie Boost, and by adding a tablespoon or two of olive oil to any warm broth/soup you can tolerate.

Pain may also be inhibiting your swallowing in addition to the mucus. Talk with your doctors about pain management. There are lots of different pain medications and it seems to be a very individual thing.

Wishing you better weeks ahead - at least you're all finished tx!

Barb K.

wmc

Heavy Mucus

Just to give you a head's up about mucus. Try your best to get as much water as you can as water will thin the mucus. All dairy products will increase the mucus, milk, ice cream, cheese, and milkshakes. If you drink a milkshake to help with weight drink a glass of water to counter it. 

Bill

Drivingdaisy

Thank you

Thank you for your suggestions.  Very helpful.  From reading the diferent posts I realize it will take much longer to heal than I anticipated . I should have pigged out for a week on all my favorite foods and drinks before treatment.  I have a feeling many things I enjoyed I won't be able to partake in, in the future.  Makes you really realize how much we take for granted.  

For those who are still drinking protein shakes at home and on the go, I did find a tasty, not chalky, Organic shake at Walgreens.  Brand name "Orgain" found next to the Boost and Insure.  Comes in Chocolate or Vanilla.  Found that if you take the Vanilla and stir in Strawberry syrup, yum desert.  Thinking of trying Carmel and Chocolate syrup down the road when I swallow better.  

wmc

What we take for granted, you have no Idea, and neither did I

I have bad lungs and the only option I had for my stage 3 SCC that was on top of my vocal cords was to remove my larynx and breath through  my neck. Fires I am fine with this. I never knew what all was involved with just swallowing. Everything is connected to the larynx or work with it. Found out that the vocal cords do so much more than let you talk. You can't hold your breath without them. They also are part of swallowing. Your esophagus has negative air pressure to help the food go down if you have a larynx. The upper sphincter muscle stays closed to keep everything down until you swallow and then it opens and lets the liquid or food go down, if you have a larynx.  Without the larynx, the sphincter muscle gets cut so they can separate the airway, and help you talk. However, it comes with a price, acid reflux. The tongue does so much with all speech and swallowing and even pushing the food down. 

Most do get a lot of the taste back in time. They always said that different areas of the tongue taste certain things. However all the taste buds are the same, and you even have taste receptors in the back of the throat. One here it the one I find the most interesting. Your lungs can smell and have odor receptors. So far every respiratory or pulmonary therapist never knew that.  Just take one day at a time, and for now, only today matters. You will do just fine.

Bill