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My story/Would love to her from you

Helaine62
Posts: 3
Joined: Aug 2009

I finished my 33 treatments June 13th and I still do not have my taste buds back and still have the dry mouth. I was told by my surgeon and ocologist that it could be quite a while. I hate my g tube and I want it out. What I can eat Is; Cream of wheat hot cereal w/sugar, milk shakes made with whole milk, carnation instant breakfast, yogart, ice and strawberries or bananas. Blend it up and it tastes good. I also eat ice cream cups, vanilla pudding, apple sauce and tomato soup. My husband has been making all kinds of food for me to try and all I do is gag and cry, I cannot eat it. I do not know about the rest of you but I have lost a lot of weight and I am tall. This bothers me more than anything. I still do not have my strength back and I do not sleep through the night. The Doctor's say that I am rushing everything.....The days are long especially since I am used to go, go, going all the time. I just want to eat and gain weight and get my strength back to the way it is. Already have had two monthly check-ups:one with my surgeon and one with my ocologist. My surgeon put the tube down the nose and said everything looks good. Oh by the way. I had a golf ball size lump pop out on my neck and than it disappeared. They found it with one squamous cell in it. They put me through the ringer with all the tests and found that I have no origin. Only 5% of people have no origin. It took the doctors months to fiqure out what they were going to do with me....finally it was radiation. That part of the journey is over, now the recovering part. Would lov to hear from anyone. I love reading what everyone has written and some of it is helpful. Take care everyone. PS: I love cantalope also.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

H62,

I too had a 'lump' in my neck.....surgery to remove...found squamous cells....did a radical neck. Woke up with big scar. They said 'unknown primary (yikes!).

Healed just in time for chemo and radiation. Lost 40 pounds..lived on boost for about a month. No solid food. Didn't need a tube. Lost taste and most saliva.

That was 5 years ago. Today I can eat anything. Taste buds fine. Salive aobut 25%...but dont' need to carry a bottle of water. Just need to have a sip with eat bite of dry food.

My biggest issue was a stricture at the top of my esophagus casued by the radiation. I couldn't swallow anthing thicker than soup. Food would 'hang up'. Frustrating. I have had 2 esophagus 'stretches'....really helped. Now I can eat. Still need to chew 'like my mother taught me'.

Don't get too impatient. It takes time. Are you able to swallow OK? I also am diligent on tooth care. I hope that you are using Biotene toothpaste and mouthwash. It works for me. Mouth spray is good too.

Try pounding the Boost or Ensure. One way to get calories and vitamins (but a little pricey!!).

Cancer is a tough opponent, but we can beat it. You too will get the '5 year' thumbs-up. Lots of people are rooting for you.

George

Tanager75
Posts: 87
Joined: Aug 2009

I just finished my radiation and chemo end of August. Tonsil cancer that was also in 2 lymph nodes. Food tastes terrible. I keep hoping that I will find something that tastes good. My wife and I were talking that I may just have to hold my nose and pound the Ensure. The PEG tube won't come out till I have been eating enough calories to support myself for 2 weeks. I hate the tube but have been able to maintain my current weight. This is my 4th PEG tube since I stared in July. One was to tight, one popped and a temp put in, and now this one which seems to holding up. As much as I hate it and all the prblems with it I have to say that I'm glad I have had it. I have lost 40 pounds and no guess how much without the tube. I keep reading what people like to eat and will continue to try some of these foods too. I will read the udates on this string to hear what everyone has to say to you about your situation as it applies to me too. God willing I will be eating one of these days.
mark

RedE2NJoy's picture
RedE2NJoy
Posts: 20
Joined: Aug 2009

can totally relate to your nutrition issues and would like to make a suggestion...
I basically lived on Carnation Instant Breakfast VHC (important to remember VHC--Very High Calorie) for three months. A one cup, pre-mixed serving is 560 calories and full of many nutrients. I drank the vanilla, but it is available in chocolate and either can be blended with fruit, etc as desired or palitable.
I lost almost 30 pounds in the months following surgery, but with the use of Carnation Instant Breakfast VHC, I did not have to have a feeding tube--but it can be used with a tube.
I finished radiation and chemo June 5 and am now on my third week of soft foods. My taste buds are beginning to work a bit, but I am dealing with very restricted mouth opening (so have to rely on very small bites) and radiation burns on my tongue which feel like I am pouring acid on my tongue with most foods. Thank goodnes for oncology mouthwash and it's numbing abilities.
Hope this is of some help and God bless.
John

anthony g
Posts: 8
Joined: Jul 2009

First of all,,good luck and be paitent,,One year ago i had my tonsols (origin) and a lump removed from my throat. Squemius cell carsonomia. (spelling is horrible i apologise) After 7 weeks of radiation n chemo i lost my taste buds n all saliva glands. Im happy to say today im cancer free , but it was a long road...not so long as i sit back and reflect now. It took me about 3 to 4 months before i started tasting food again,,,some things more than others and my saliva i would say is about 60 percent back. Bioteen toothpast nad mouthwash worked for me. I drink boost and a power drink called Juven. Juven is a power drink that helps in healing and weight gain. You can only get it at a drug store and most have to order it, but i found that it helped the most in weight gain. I did lose about 30 lbs. and i was only 140 when i started. I opted for no tube and that prolonged my ability to gain/ maintain weight. Im now back to 120 but still under where I want to be, again be paitient,,,i know easy for me to say because i too wanted to feel and look better right away. Take satisfaction in the fact that slowely some tastes will come back, as well as saliva. I found that sugar is one of the last to come back and spicy the first...i pour on the salt/ pepper..lemon/pepper spices .. applesause,,jello,, and pasta were one of the first things i had that seemed to work for me.
hope some of this helps in any small way,,,good luck

ZooDavid
Posts: 12
Joined: Oct 2008

Hey I agree with you on the time going slow.I had radiation, 35 treatments in may 08, and have been slowly recovering.The pain in my tounge was my biggest problem.Now a year later I just kicked my pain meds "Habit" because if you take fentenal patch for a while addiction is there.And you cant just stop! a person needs to be weened off this stuff.But take my word, if you end up with an addiction, do not let the doctor talk you into using methadone to help you get off other pain meds.Sorry I dont know "if" this is a problem you face but I wanted to mention.So now one year later, they decided not to do radiation and hemo at the same time now a surgeon wants to remove the lump in my neck.But asa far as "Killing Time" at least I managed to read about 75 -100 books this last year.I also am a musician so I've spent, as much as I could with the pain- passing out and starving!, alot of time playing my guitar and teaching myself French.It's good for the brain to learn a new language! Anyway its good to see people beyond me, and behind, so I feel, and you should too, see some end in sight in this ordeal that is Cancer.By the way I personally am disgusted with the american cancer society and all the events and money raised "For the Cure" and we the people are stuck, ussually out of work during this ordeal, with alot of money owed after all the cash made off of us from the insurance co.'s.
What "We" need is what the Shriners have at the facilities they run i.e.Free care for patients of Cancer! I dont know how you feel about that but Good Luck!

casusco
Posts: 3
Joined: Sep 2009

I tried the patch but got very sick and threw up which was just awful for my tongue. I had 7 week of daily radiation & weekly chemo for my tongue cancer. Just finished up 4 weeks ago. I feel better - some days - it's wierd. I'm still only eating soft stuff. And my tongue still hurts - sometimes a lot. Did you ever get white bumps all over your tongue post treatment?

casusco
Posts: 3
Joined: Sep 2009

I also still have my peg tube in, but I am planning to get it out in the next 2 weeks regardless of what Dr thinks!! I never wanted to have it put in to begin with. But, I must admit that the weeks immediately following when I finished radiation (I had 7 weeks of radition with weekly chemo also) were the most awful. I didn't use the tube until that 7th week. I was just too weak and down 20 lbs and the Dr told me to use the tube or go in the hospital! So, I began using the jevity 5-6 times a day. It's been 4 weeks since finishing my treatment and I'm eating only soft stuff. I'm very frustrated and depressed. I think I just want my old life back and am realizing that will never be. Nothing tastes good at all. I have to admit taste has improved slightly but not that much. I noticed whiteish bumps on my tongue 2 days ago, so I called the dr yesterday and he gave me diflucan. I am not sure what they are??? Anyone else have them post-radiation treatment?

train-nut
Posts: 101
Joined: Jun 2008

The reduction of saliva production can alter the chemistry of your mouth. This can allow bacteria to grow that normally can't. The white bumps are probably thrush; diflucan is often utilized to get rid of it. Very common for us head and neck guys. Best of health to you. Rich

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