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Update on Tom T3N1M0, MIE surgery at MSKCC in May 2011

ArchTB's picture
ArchTB
Posts: 157
Joined: Dec 2010

Hi everyone,

I have not been here for nearly two years, but I am so HAPPY to see a lot of old names but SAD to see new ones.

I thought I would stop by and post an update on my husband, Tom.

The story starts like any other - weight loss and anemia late 2010 --> check up November 2010 --> diagnosis December 2010

Tom (37 yo at the time of diagnosis) started his treatment at MSKCC with Dr. Ilson. He had chemoradiation. He got cisplatin and irinotecan once a week for 8 weeks with a break in a middle. Daily radiation was added after 4 chemo treatments and lasted for 28 days. After the treatment the tumor was gone, but we still decided to go with the surgery. Tom had a robotically assisted MIE at MSKCC in New York on May 17, 2011 performed by Dr. Rizk. The hospital, the doctors, and everyone else we really amazing!

The recovery was long. Tom was low on energy, tiered, in pain after each meal. This pain is likely what caused him loss of appetite. This state became his new "normal'. Until a year after surgery, in May 2012, he ended up in the emergency with hernia. Since his esophogus was largely removed and the stomach was pushed up, inestines migrated through the incision to the chest and caused pain. He has been living with this hernia for the whole year! He had a MIE repare surgery and felt much better after that. Not quite 100% but in the 80ies.

Guess what? A year later, in May 2013, he is back at MSKCC doing a endoscopy test. After drinking a bucket of that stuff for the test, he called a nurse and said that he is in pain and it feels like hernia. The doctors said it was probably just gas and stress on the stomach and sent us back after the test. Same night we took a taxi to emergency room. And yes, he had another hernia. This time, Dr. Rizk did an invasive servery with a lot of cutting around the hole in the diaphragm where stomach is to create scar tissue to fill in the void and prevent anything passing through.

This time, it worked great! Tom finally realized what "noramal" is. He eats well, not huge portions of course, but good size, with appetite, and pretty much everything he wants. Even ice cream that he could not eat a year ago. Even cookies! Indian and thai food! There are a few things that he cannot digest, but he is not suffering from the loss - coffee, beer & wine, tomatoes in any form, and of course nothing super spicy that even healthy people cannot always eat.

It is May 2014 now, and Tom is back from and emergency unit... But this time the issue was minor - looks like he started developing a blood clod, but it was caught early and he is only taking some pills.

The most important thing - 3.5 years after diagnosis and nearly 3 years after surgery, Tom has no evidence of desease. He is feeling great. He is skinny, but cool skinny, not scary/sick skinny. He quit his job just before the diagnosis. Open his one-person architectural practice during the treatment, end of 2013 he went official and rented an office, as of now he is running his own firm with employees (plus our dachshund in charge of office security and food supply). We are hiking, travelling, going out with friends, and living happy lives. [FINGERS CROSSED]

Tom just asked what I am doing, and I said I am posting an update about him. He said "Oh, just tell them I am fine. No, tell them I am awesome". Here you have it. I read somewhere that there has been more progress done in medical field between 2008 and 2014 than in 50 years before that."

Stay strong, stay negative (if you know what I mean).

Olya

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

It is great to hear from you Olya, and great to hear that Tom is doing well. Like most of us; there were some bumps in the road, but the important thing is NED.

It seems that intestinal herniation after surgery is rather common unfortunately. That kind of makes those of us who have had surgery a bit wary of eating very much at one time even after we are well past surgery. I am coming up on five years and it makes me wonder if I should ask my doctor for a upper abdominal xray annually just to insure things are still were they should be.

In any case, it is great to hear that Tom is doing well, and you are both back to doing the things you enjoy.

Many there be many more!!!

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 - Four Year Survivor

ArchTB's picture
ArchTB
Posts: 157
Joined: Dec 2010

Thanks, Paul. Good to hear from you too. Definitely do not disregard periodic check ups, not just CAT, but blood tests and x-rays. Let there be fewer bumps on the road and more happy stories.

Olya

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Thanks so much for your positive and newsy post it is so lovely to hear good news and I'm sure everyone will get an enormous boost from Tom's success.

Rob is two years and three months post op and doing really well. Skinny too of course, but getting better all the  time.

As Paul has said, there are bumps in the road, but everyone here needs to read some positive news and here are three of us.

God bless  everyone here, the new and the old. Stay strong and positive if you can.

Love, hugs and prayers,

Marci

Joel C's picture
Joel C
Posts: 172
Joined: Mar 2011

Hi Olya,

 

It’s great to hear you and Tom are doing well.  I also ended up with the same diaphragmatic hernia that Tom had.  It had gotten to the point that I could not eat without getting sick.  There was so much bowel in my chest that I was having difficulty breathing due to my lungs being compressed.  I had it repaired in October of 2013 with a minimally invasive surgery and so far so good.  I was told that a diaphragmatic hernia was not very common after an esophagectomy but I’ve heard of several people having this problem and think it may be more common than originally thought.  Tell Tom people were happy to hear he is doing “awesome” and we look forward to another good report in a year or two.

 

Joel

ArchTB's picture
ArchTB
Posts: 157
Joined: Dec 2010

Hi Joel,

 

Sound like this hernia thing is becoming more common. Unpleasant indeed, but nothing compared to cancer. I hope the surgery that you had to fix hernia resolved the problem, but do listen to your body carefully, and ask for periodic x-ray to make sure everything is fine.

Olya

ArchTB's picture
ArchTB
Posts: 157
Joined: Dec 2010

Thanks, Marci. I do wish everyone here more good news and happy stories. Hugs.

Olya

NikiMo's picture
NikiMo
Posts: 344
Joined: Jul 2011

Olya,

 

So glad to hear you and Tom are doing so well!  I don't check this board often, but today I thought...let me just check.  So glad I did, love hearing good news stories.  Jeff is doing well too.  Just had his 2 1/2 year scan, all clear.  He too has struggled with weight and discomfort when eatting.  He was just diagnosed with celiac disease, which means he is more restricted in his diet but the terrible bloated feeling has gone away.  He has more energy now as well, so for once getting a diagnosis has been positive for him.

We have just bought a new home that we are renovating in preparation for openning our house to foster children.  We are going to start buidling the family we dreamed of over three years ago.

 

Thanks for the update, keep on living the dream!

 

Niki

ArchTB's picture
ArchTB
Posts: 157
Joined: Dec 2010

Hi Niki!!!! So glad to hear Jeff is doing fine. Congrats on another clean test! It is so strange how human body reacts to stress of surgery. Tom's food preferences changed so much, and there is definitely some food he cannot eat anymore. Or does not want to because I was forcefeeding him :) Like bananas and avocados, and nuts. Such delicious stuff, but he said he cannot stand it anymore. Luckily I like cooking and keep on inventing new recipies to ensure he hits his kcal mark every day.

Give my best to Jeff, I am so happy for you both!

Olya

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

Hi Olya:

Like Niki, I don't check this site very often anymore but I'm so glad I did today!  It's so good to see that "old friends" are doing well.  I had my MIE in Sept. 2011 and I'm happy to say that I haven't had any major problems or setbacks.  There are some things I can't eat, but not many.  I lost 35 pounds after my surgery and I haven't gained any of it back, but I'm actually right where I should be at 165 lbs so that's not a problem.  Really the only problem I have is that I'm still the glutton I've always been and I often eat a little too much or too fast, which is very uncomfortable for an hour or so after eating.  But if that's the worst thing, then I'm doing pretty damn well.  Like someone said, it beats having cancer!  It might have been Paul Adams who posted, shortly after I joined, that the difference between OK and too much food is one mouthful, and Boy is that ever true for me.  But again, I ain't complaining, because that's something I can control, unlike the cancer.

I have another CT scan in September, and my doctors say that presuming I'm still NED we'll go to annual scans instead of every 6 months.  I trust my medical team completely, and if they're satisfied then I'm more than satisfied, and I look at the lengthening timeline as a milestone that I'm happy with.  It's hard to measure progress with cancer recovery, but I'll take this as progress...at least I will in September.

Here's to us all staying awesome!

 

FEC,

Bob

T1aN0M0

Dx 8/3/11

MIE 9/23/11

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

Love reading the success stories, keep them coming.   We continue to support all fighting this disease.

GerryS

4 years NED

Dx 2/10

IL 3/10

chemo

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