doingfine's Message Board Messages

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Everyone is so different, I hesitate to write, but I also had infection.  I had a home health nurse come in every other day to pull out the dressings and place new one in until it eventually healed up.  I was also on antibiotics.  Regarding the nausea.  I was terribly nauseated for weeks and weeks.  I learned that following this surgery many people become lactose intolerant.  That is what it was.  I stopped ALL milk, no puddings, no custard, etc.  I even used chicken broth to mash my potatoes.  It worked and although still experiencing some nausea, life was tolerable.  It took me a good 8 months before I was what I called "good" and off the feeding tube. Took 2+ years to get over the lactose intolerance.  

My surgery was May 25,2004 and I was able to have 2 people in for Thanksgiving Dinner that year, but that was the first I could do anything.  After that it was smoother sailing.  I was still sick on cake, etc. in April 2015, but by November 2015 we took a 7,000 mile trip across the country through 22 states.  Life does get good again, but the healing process is slow.  Have him checked out and if they don't find anything, just know he will make slow progress and will be better by Thanksgiving.  Oh, be prepared for dry heaves, tons of mucous, lots of tickle in the throat.  I had my hubby get me gummy flavored life savers so I could get something to stop the cough without using lemon drops that I could suck down my throat while coughing.  Keep on this site also.  You will get lots of tips on how to handle some of the after effects. 

Best wishes.

RE: Jejunostomy tube troubles!!!

by doingfine - July 14 at 11:41 PM

I had a lot of J tube troubles also.  My surgeon sutured it right into my skin and that kept it in place really nice, but the suture around the tube began to pull too tight and nothing would move through the tube.  We thought it just needed cleaning, but no. It was just too tightly tied.  So after a couple of months with it like that, the surgeon took it out and reinserted another and then I had to use a real sticky backed thing to fasten it to my skin.  It worked, and I was happy to have it because that is what kept my weight up.  I don't remember the name of the sticky adhesive.  Only problem is, yes......it leaked a little bit around the opening.  It was a daily project to keep the mix from seeping out.  I used Q tips and let the water wash over it in the shower each day.  I think I changed the patch to hold the tube every 3 days.

Oh, yes......mine did slip in and out.  I was very careful to make sure it stayed in.  Actually having it sutured in worked the best if the suture had not gotten too tight around the tubing.

Just a reminder that this will eventually be just a bad memory.  Try to use a good diet filled with protein and little sugar.  Sugary foods always made me sick.  Cake, ice cream, puddings were all bad for me.  Chili worked real well and lots of protein rich soups.  

Best wishes.

RE: Life after an Esophagectomy

by doingfine - June 27 at 8:35 PM


So nice to see your post.  Doesn't seem possible your first baby is now 5.  Glad you are doing well and pray you will see your grandchildren born also.  Live Long, Love Life, Laugh Lots!  I am now 11+ years post surgery.  Lost my husband to lung cancer last November so all the yard work, etc. is done by me.  Must be I am really strong.  For all of you EC sufferers out there.  Hang in there....as Aoife said...It does get better.

I am also sorry to learn about your dad's difficult time after surgery.  Everyone is different, but I was a very slow healer and I had those symptoms.  Hiccups, nausea, vomiting, dumping, mucous, coughing and dry heaves.  At one month, this is still very soon.  It took me 8 months to get to a point of feeling good.  I am now 11 year survivor headed for 70 in July.  Hang in there.  It should get much better in another month and then better in another month after that.

I am also 11 years past surgery and treatment.  I have a great appetite and have gained lots of weight.  Some foods still bother me, but I know what to eat and how much.  YES,  I actually get hungry and enjoy it.  Give it one more year and you will not believe the difference.

I had irinotecan/cisplatin chemo concurrently with radiation.  It is very rough.  Perhaps the doctor does not think your husband will survive having them both at once.  The targeted chemo is the latest.  My doctor is very encouraged with these new treatments. http://www.cancercenter.com/  These hospitals do use the new techniques. 

RE: Chemo or No

by doingfine - May 04 at 8:10 PM

I had the McKewon surgery 11 years ago.  I had chemo and radiation before surgery and was Stage 2B.  My tumor was totally inside the wall of the esophagus and had not spread anywhere else.  I don't know where you live, but second opinions are great.  A good doctor will not be upset by your second opinion either and then you will have real peace of mind. http://www.cancercenter.com/  These folks give second opinions.  A friend of mine went to Phila CTCA and was really happy she did.  Best wishes.

RE: Diet

by doingfine - March 23 at 3:31 PM

Hi  Amie,

I am an 11 year survivor.  I had chemo, radiation and surgery.  It was all worth it.  Tough first year, but after the last 10 of feeling very good and enjoying life, I would do it all over again.  Yes, being very strong is important.  I was in very good physical shape and had been working out at a gym 3 days a week.   I was 58.  My prayers go out for your hubby and your family, but with Stage 2, his chances are excellent.  Very excellent.  Keep encouraged.  If they suggest feeding tube while he is in treatment, be sure to go with it.  It is temporary nourishment until he is cancer free.  Yes, I was toldI am totally cancer freeand that diagnosis came 5 years after the surgery, however, I knew I was cancer free before that.   He will be cancer free also.  Best wishes.

RE: Nexium and side effects

by doingfine - February 04 at 8:46 PM

I could not take Nexium.  I don't recall pain, but I had terrible stomach issues.  There are lots of other meds so talk to your doctor.  Prilosec works well for me and I use the generic brand called Omeprazole.  Best wishes.

RE: Dazed and Confused....My Story

by doingfine - January 15 at 2:25 PM

I am on Prilosec and I watch what I eat.  Acid reflux is still a problem sometimes but I try to avoid foods that make it worse. Everyone is different.  Peanut butter is a real offender for me and I have to be careful which brand of coffee I drink.  Other than that, I eat well.

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About doingfine

Esophageal Cancer

My EC battle began in 2004. Still going in 2015.

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