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doingfine's Message Board Messages

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RE: Nexium

by doingfine - April 15 at 11:10 AM

Get the second opinion and keep on the Nexium.  I had ulcer and refused the endoscopy.  Ulcer was found with barium swallow.  I went off the Nexium because I didn't know about Esophageal Cancer.  Within 2 years I could not get food down because the tumor was so large.   From what I know, the Nexium or Prilosec, etc. is very effective.  My EC came from acid reflux, no drinking or smoking.  I did eat a lot of hot wings.  I wish now that I had followed the acid reflux diet and stayed on the doctor's recommended regimen. 

RE: How Quickly Will Things Go?

by doingfine - April 15 at 11:05 AM

I was diagnosed in January of 2004.  Feb. 25th  I had the first surgery to put in a feeding tube and port.  I begain chemo/radiation in March of that year and the surgery followed on May 25th.   I was miserable until end of October that year.  In October the feeding tube came out and I felt like it was worth the fight.  In April of 2005 I still was experiencing dumping and vomiting quite a bit because I still wanted cake and ice cream and they didn't sit well.  By November 2005 we took a 7 week trip across the U. S. and I came home feeling great. You are in for several very discouraging and difficult months, but healing will come.  Stay connected here because you will have questions.  Best wishes to you and your hubby.

RE: Esophageal Cancer

by doingfine - April 15 at 10:57 AM

Congratulations.  I am a 10 year survivor.  2 years after my surgery my surgeon confessed that she didn't think I would make it off the operating table.  God had a different plan. I, also, had a 2 to 3 % chance of survival.  I am 68 and we are remodeling a home, carrying sheetrock, sanding, painting, carrying lumber, sawing.  It is amazing how the body heals.  Yes, I still have side-effects, but like you I watch what I eat, keep my bed elevated and do what I am supposed to.  I was Stage 2B.  I agree with you:  to all those still struggling.....hang in there.

I had hernia near navel site only deep inside about 3 years after my EC surgery.  When the surgeon got in there he found that I had a couple of hernias so he put mesh inside my abdomen.  I am assuming from the placement of the incisions that the mesh is the size of a pie plate.  I would have only been in the hospital overnight, but my intestines are very sensitive and I am prone to Ileus.  The way my thoracic surgeon who did my gastric pullup explained,  it is that my intestines shut down when touched.  My overnight turned into a four day hospital stay for the hernia.  I don't believe it would be a long stay for a normal person.  I have had more than one ileus. 

Anyhow, I am extremely active and do a lot of strenuous activity.  I had another hernia last year (pushing lawnmower), but that healed itself when I used a belly binder and didn't lift for the summer.  It healed well because this past 6 months we have been doing remodeling and I have been carrying sheetrock, lumber,  and doing all kinds of lifting and stretching. 

If your husband's hernia bothers him go to a good surgeon and have it fixed.  It takes the stress off to have things fixed up.   Best wishes.

RE: My husband has cancer

by doingfine - April 03 at 1:30 AM

I am also very sorry for what you are going through.  I have a friend with lupus and she has given up most meats.  She said she does better with a diet of mostly fruits and veggies.  Best wishes to you.  My hubby used to go out in the garage and cry while I was in treatment and surgery, etc.

I had chemo once a week and radiation daily for 6 weeks ( I think. I need to refer to my notes to be certain.)   It was 10 years ago.  Expect to have a difficult 6 to 8 months but then things get better.  You will need a good friend or relative to confide in and also give you respite.  My sister came in twice a week for a few hours  to give my husband a chance to get out for groceries and have a break.  

One bright spot you have is that the EC is not through the wall.  Mine was not through the wall.  Sounds like the regimen they have set him up with is like what I had.  My chemo was Cisplatin and Irinotecan, but I understand they have better drugs today.  I am so sorry about your daughter.  What a tragedy and heartache.  You need to go on for one another now so try to take care of yourself and keep positive.  Real rough several months, but you and he will get through it and then things look up.  God bless....you have many friends on this board.

Just joined?

by doingfine - April 02 at 4:23 PM

Hello to a new person who is joining later today.  Multiple problems since EC.  I told her how helpful you all are.

Barbara

Yes, I was terrified to use the new esophagus.  I am a 10 year survivor.  I also had what was left of my esophagus stretched to help.  For a while after surgery, perhaps the first several weeks, I used a thickener in all drinks because I tended to  choke on fluids.  It all straightened out after a bit.  I also had a paralyzed vocal cord that offended both my swallowing and it allowed me to lose air from my lungs which made the breathing worse.  Just keep encouraging her.  Oh,  have you tried Boost, etc.  They are awful and I could not use them.  Try custards and jello.  My doctor said to eat a lot of soup.  Best wishes. 

My voice was pretty much gone after surgery.  I could only speak with a high squeeky voice.  As I replied before, my surgeon told me this was apt to happen. The vocal cord got nicked during surgery.  My friend got a paralyzed vocal cord from his chemo and I have a good friend who just recently finished chemo and she also has a paralyzed cord. 

I also lost a lot of air through the injured area plus the fact that the stomach sits on top of the lungs after the gastric pull-up compounds the difficulty.  My ENT was wonderful and does the treatment frequently.  I began with the injection, but it did not work for long.  MY body absorbed the silicone and I was back with a squeeky voice within a couple of months.  For some people it stays, but not for me.  Anyhow, my friend and I both had the surgical implant within weeks of each other and it surely helped us both.

I was able to walk without being winded afterward.  As Dr. Kelly explained my situation, my right vocal cord was paralyzed in the closed position, but not completely closed.  This made the left cord stress to reach the middle.  By placing the silicone in the right side and keeping it in the closed position completely, the left side did not need to stress to close the airway.  It is wonderful not to lose the air.  My ENT was very consicientious and very knowledgeable.  He has helped lots of cancer patients and I am so glad my Thoracic surgeon set me up with the group as soon as my gastric pull-up was done.   The proper doctoring makes all the difference.     I am now 10 years past my surgery and I can tell you it was worth seeing the ENT, but get a good one.  There is no ENT in our area who is familiar with this situation so the ENT I saw was 80 miles away.

Oh, my ENT does all the voice testing and recording, etc.  No therapy would have helped me because of the damage.  Only a cancer or EC survivor can understand these problems and I certainly am glad there is a remedy for these side effects. Take care and Best Wishes to you. 

Sorry I have been away from the board for a bit.  When I said I lost my voice I meant I lost my normal sounding voice. I had a high pitched squeeky voice because one vocal chord was paralyzed.  The paralysis can come from the surgery if they go through the neck like mine or it can happen from radiation burns.  Not to worry!  The voice mends and the proceedure to fix the paralyzed vocal chord is very simple.  Not everyone has this happen either, just some of us.  Best wishes as you go forward.  I am now a 10 year survivor.  Keep positive.

RE: the surgery

by doingfine - December 28 at 11:58 PM

So sorry.  Yes, you are normal to be scared.  I was scared stiff and cried often just before surgery.  Then my surgeon told me that she would have me really doped up and pain would be bearable.    I had an epidural and day one was not bad at all in the ICU.  Lots and lots of tubes and wires, but I got great care and had no pain.  Day 2 was about the same and day 3 also.  I was up and walking with help.  Day 4 I went into regular room and my epidural fell out.  That was tough, but I was given a morphine drip and had some pretty unusual dreams.  Not scarey, but funny.  By then I was up walking a couple of times a day.  I was in hospital total of 2 full weeks.  During the first week I was fed through a pic line and had IV and my feeding tube.  Then they introduced food back into my diet.  All went pretty well.   I went off all pain killers about 4 weeks after surgery. 

Here is the honest part....it is a slow recovery and some days I felt like I would never get better again, but my doctors and nurses told me.......ALL of these post surgery problems will go away.  I had 3 incisions and also had some complications, but it was all manageable and I was glad that they could save my life.  I had put aside some things to do when I got home to occupy myself.  I did word puzzles, straightened dresser drawers, let my hubby wait on me, watched tv and counted our change just to keep my mind busy.  My best friend kept telling me, give it time....give it time.  My surgery was in May of 2004 and by the end of July I was eating pretty well.  Spaghetti and chili.  By end of October that year I was off feeding tube and enjoying life.  Oftentimes people are lactose intolerant right after surgery, so becareful of the milk products.  I used a ton of chicken noodle soup and poached egg on toast in the beginning.  Beef barley soup and soups made with water rather than milk will help.  Little by little you will feel better.  After surgery I found that much of my fear was over-reaction on my part because the doctors do know how to manage their patients.  Best wishes. 

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About doingfine

Survivor
Esophageal Cancer

I am 68 and have survived EC for 9-1/2 years. Retired, happy, great family and great life. God and wonderful doctors/nurses got me through to survival. I enjoy working on a web page and being Church Clerk. Photo L-R is of me, my surgeon, my hubby, my family doc, front is my oncologist. Sorry no photo of the radiologist. Oh, graduated from 2 year college in 2000. A very late bloomer. We have 2 children and 4 grandchildren.

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