Hi...newbie! My story!

sashya1982

Just joined the site. Dx on August 23, 2016, T1bn0m0. Bumped to Stage 3a after October 6, 2016 Trans-hiatal esophagectomy, with gastric pull up, as I had 3 cancerous lymph nodes. Developed pyloric stenosis following surgery. It is some better, but still may require another surgery. Hope not! Had four rounds of chemo (5FU), and 5 weeks of chemoradiation. (25 radiation treatments.) Finished on June 21st, 2017. Did not lose my hair! Trying to adjust to new "normal" eating. Chemo makes everything taste nasty, or not at all; I can eat very little food in one sitting. I was obese before surgery, and a Type 2 diabetic. Have lost 74 lbs.through all this, and my blood sugar A1c level has returned to normal. I no longer take any diabetes pills. My A-fib, and asthma are controlled, as is my sleep apnea. I used to be a major sweetaholic, but not anymore, and I never get hungry! Strange, how this works like a gastric bypass! I guess, in a way, getting cancer saved my life! Surgery was brutal! Not even a sip of water for 8 days, and I came home with a feeding tube for one month!  I could still stand to lose about 50 lbs., but there IS life after an esophagectomy, and I am beginning to enjoy it, again! Don't lose hope! 

 

 

5 weeks

Deathorglory

Hello Sashya

Hello Sashya,

It's great that you seem to have had such a good response to your treatment.  Hopefully you remain clear into the future.  I also appreciate that you have such a positive attitude.  The esophajectomy is, in substance, very similar to a gastric bypass.  For folks who were overweight, this can be a positive.  For others, who were at a good weight pre-surgery, it can be a problem.  

Please keep checking in/posting here, this site can always use more success stories

Best wishes,

Ed

Chicko7

Hello!

 

 

Hello Sashya,

So glad to hear that you are finished with treatment! Enjoy! You were diagnosed roughly the same time as my husband. He too just finished treatment. How do you feel? My husband is struggling. We are only 3 weeks post his last treatment so we are trying to give it some time. Do you have any side-effects, like dumping syndrome or nausea?

~Amie

paul61

Amie

Recovery from surgery and chemotherapy can take a long time. You do not mention if Dustin has lost a significant amount of weight, but it is typical for esophagectomy patients to lose as much as 25% or their body weight after surgery and chemotherapy. I would say it took me about two months until I started to feel that the side effects of chemotherapy subside. My primary side effects were nausea, fatigue, and diarrhea. I also had a difficult time drinking enough water to avoid dehydration.

I found that I needed to start a program of 7 small meals each day focusing on protein and avoiding items high in sugar content. I keep a bottle of water next to me all the time and sipped water all day long.

A couple of weeks after I completed my chemotherapy I started walking a slightly longer distance each day until I reached two miles each day. When you are dealing with fatigue, it sounds counter-intuitive to try to exercise, more but it does make you feel better.

I would say it took me almost a year after surgery before I felt that I was back to the physical capability level I was at prior to diagnosis.

We are all impatient to get back to our “normal” lives again, but as cancer survivors we need to adjust to a new normal. It does take time to recover, but recovery does occur.

Best Regards,

Paul Adams

McCormick, South Carolina 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Seven Year Survivor

lcstringer

Hi!

My husband has a similar story to some of the ones on this thread.  He was diagnosed July 1st, 2016.  He did 10 chemo treatments of 5FU and cistplatin, and 25 radiation treatments, then surgery on October 28th, 2016. After surgery he was staged as stage 3 due to the mass going deep into the esophageal wall and two positive lymph nodes, although they did get clear margins.   We started chemo back the Monday after thanksgiving and did 26 weekly treatments of cistplatin and 5fu.  June 19th, 2017 we had a clear scan and completed our chemo treatment.  Last Thursday we had our 3 month scan, and they called us for a PET scan due to 2 nodes "that are still of very small size" have grown since our last scan therefore unable to rule out possible disease. Our PET scan is tomorrow, we are very nervous.  -Lauren 

LorettaMarshall

Deathorglory said:

Sending Positive Thoughts

Hello Lauren,

This EC stuff can be very stubborn.  I've been there, where I've thought I was done with it and just needed to get myself back to something approaching normal.  Then it came back and I was worse off than when I started.  Even now, after having seemingly beaten off my recurrence, I have a nodule in a lung that has popped up recently and has me scared of upcoming tests and their results.  

I hope you guys get good news from the PET scan,

Ed

Lauren~U R N A hard place right now but don't give up!

Good morning Lauren

Just want you to know that we all understand your anxiety at having yet another PET scan.  Our lives and goals certainly change completely when cancer walks through the door--"uninvited" of course!  

Sometimes people choose to put a bit of history on their “about me” page, and that gives us a clue as to where they’ve been and where they are presently.  I, for one, am always curious to know who “they” are.  So when you choose to write again, if you wish, can you tell us a bit more?  For example, who are your surgeons, what was your husband’s original stage and what type of Esophagectomy did you have, how long your husband was in the hospital, etc. 

It’s really hard to have neo-adjuvant chemo, an esophagectomy, and then adjuvant chemo, and still discover that the cancer has not been “whipped!”  It’s difficult enough just readjusting to a new way of life (eating & sleeping), but to have to have additional post-op chemo is just plain AWFUL! 

Ed certainly identifies with your story completely and is always ready to share his experience with others who are having the same kind of struggle.  He hasn’t given up—so don’t the two of you either!

Thank you for sharing your story.  We cancer patients and cancer survivors bear each others' burdens because we truly care!    

Loretta (Wife of William (Billy) who is in his 15^th year of survival after his Stage III (T3N1M0) diagnosis.  Ivor Lewis Minimally Invasive Esophagectomy @ University of Pittsburgh Medical Center, by Dr. James D. Luketich, May 17, 2003.

Deathorglory

lcstringer said:

Hi!

My husband has a similar story to some of the ones on this thread.  He was diagnosed July 1st, 2016.  He did 10 chemo treatments of 5FU and cistplatin, and 25 radiation treatments, then surgery on October 28th, 2016. After surgery he was staged as stage 3 due to the mass going deep into the esophageal wall and two positive lymph nodes, although they did get clear margins.   We started chemo back the Monday after thanksgiving and did 26 weekly treatments of cistplatin and 5fu.  June 19th, 2017 we had a clear scan and completed our chemo treatment.  Last Thursday we had our 3 month scan, and they called us for a PET scan due to 2 nodes "that are still of very small size" have grown since our last scan therefore unable to rule out possible disease. Our PET scan is tomorrow, we are very nervous.  -Lauren 

Sending Positive Thoughts

Hello Lauren,

This EC stuff can be very stubborn.  I've been there, where I've thought I was done with it and just needed to get myself back to something approaching normal.  Then it came back and I was worse off than when I started.  Even now, after having seemingly beaten off my recurrence, I have a nodule in a lung that has popped up recently and has me scared of upcoming tests and their results.  

I hope you guys get good news from the PET scan,

Ed