New Member-March diagnosis-August surgery

Bobs1wife

I have been reading advice on the site for some time, and decided I needed to quit being a "Peeping Linda", as William would put it and be an active participant! My husband, Bob, age 56 at diagnosis of esophageal cancer March 31, 2010. Originally diagnosed at stage 2-3 due to the fact that they couldn't get the ultrasound completed as the scope would not fit down the esophagus due to the obstruction. Original staging at T2N1M0. Followed by Cancer and Leukemia Society Clinical Trial of Cisplatin and Irinotecan, then radiation. Our pre surgery treatment was done in Omaha, NE at Nebraska Cancer Center-Methodist Hospital. We did get a second opinion on treatment at Mayo Clinic. We decided to have surgery at Mayo because of there experience. Surgery followed on August 16th. Mayo Clinic, Rochester, MN. Dr. Dennis Wigle performed an Ivor Lewis, minimally invasive, with robotic assist. The pre surgery tumor was then staged at 3, and post treatment at yT2. Esophagus removed, part of stomach, and remaining made into the new esophagus. 37 lymph nodes removed, 16 clear nodes in the esophagus area, 10 clear abdominal, and 1 with scattered malignant cells with extensive treatment evident. Surgery went well, about 8-9 hours. Started approximately 9am and out of recovery around 9:30pm. No intensive care, or resperator, and into regular room. Tubes are everywhere, but more come out every day. Walking went well. I cannot say enough good things about the Dr's, nursing stff, and care at Mayo Clinic. They were simply wonderful. Drain tubes for the lung were the hardest and most painful, but they were out by day 3. Recovery went well. Surgery on Monday, and released to go home on Friday, what they call day 4, as surgery day didn't count. The first 2 weeks were simply healing and resting. Then came a little more activity. Dr Wigle did not allow any food, or drink, for 4 weeks following sugery. Only your own saliva is allowed. Feeding by j-tube, which my husband did not like at first, and as they had told him, it would become a friend. It did, and kept him will nourished and very hydtated on Promote. We had previously been on Nutren 2.0 before surgery, but the Promote was definately better for after. Nutren was for the calories during chemo-radiation, and Promote for for the protein for healing. Liquid diet for 2 days, and then followed by most anything he felt like eating. I must say 5 1/2 weeks out the eating is going so well. He is able to eat virtually anything and does not have any major dumping issues. Once in a while, and it is usually with not having a full feeling and eating a little too much. I felt I needed to post as having a very recent surgery at Mayo Clinic in Rochester. I believe they do the most esophageal cancer surgeries of all the Mayo Clinics. I believe Dr Wigle is the only Dr to do the robotic assist. Bob had 7 small incisions, 2 being chest drain tube holes. All of these healed well. The feeding tube has been challenging as it has always been painful. We will not get it out until out follow up on October 15, which was delayed a bit, because we felt like a trip to the mountains was warranted, so delayed our follow up just a bit as he was doing well and no real issues. Ok'd to travel and also to fly and be at high mountain altitude. All in all it has had some really tough times, but as scared as we are sometimes it is reasurring to know that even with a tough diagnosis that treatment and surgeries can go well. I am by no means saying it was a breeze for any of this, but want to offer hope to some who are where we started last March. Today Bob is still recovering, gaining strength, learning to stop eating sooner than he thinks he should, oh, and regaining some of the hoarse voice he experienced from trauma of surgery. Only real pain remains in the right chest area where the lung was deflated and very much of the robotic work was completed from. I am not totally sure if the information was correct, but we were told Dr. Wigle is the only one trained on robotic procedure. In the hospital we saw Dr Wigle, and his team, at least once every day, his MD assistant usually twice a day, and the PA once or twice a day. Nurses could not have been more qualified, or attentive. And this hospital "sparkles" with cleanliness! We don't know of follow up plan yet, but will be addressing that soon. I have no problem saying that we put everything in God's loving hands from the start. My husband had told me "If it happens I get more time with my family I am happy. If I don't, know I am with the Lord, and I am happy." Amen! Sorry if I have been a little long. I am doing the "abridged edition" of almost the past 6 months of our lives! I should have joined sooner and please know I have been helped by so many of your posts. Linda, Bob's wife, caregiver, and he intoduces me as his "girlfriend"! We had our 38th wedding anniversay in June!

sandy1943

Hello Linda., so glad you
Hello Linda., so glad you have joined us. Congradulations to Bob for doing as well as he has. It's so good to hear success stories. I had surgery in May 2008. I also have done well. I still have problems of when to stop eating. I never feel hunger and I have a problem of not feeling full until I've eaten too much. The consequences of this isn't very comfortable. Even without hunger, I enjoy eating very much.I still need to learn control. Please keep us posted on Bobs progress.
God bless you both,
Sandra

Unknown

This comment has been removed by the Moderator

GerryS

sounds familiar..........
I too had Ivor Lewis at Mayo, MN. My surgeon was Dr Deschamps. My diagnosis was Feb 2010 and surgery in March 2010. Followed by chemo. I too am still getting used to my "new" stomach. I have always been a big eater so tend to want to eat too much. Usually followed by discomfort. I lost 62# post surgery, had it to lose. My six month scan was clean.
I will put you on my prayer list. Best of luck and God Bless.
GerryS age 58, married 36 yrs, 6 grandkids

Bobs1wife

GerryS said:

sounds familiar..........
I too had Ivor Lewis at Mayo, MN. My surgeon was Dr Deschamps. My diagnosis was Feb 2010 and surgery in March 2010. Followed by chemo. I too am still getting used to my "new" stomach. I have always been a big eater so tend to want to eat too much. Usually followed by discomfort. I lost 62# post surgery, had it to lose. My six month scan was clean.
I will put you on my prayer list. Best of luck and God Bless.
GerryS age 58, married 36 yrs, 6 grandkids

Mayo treatment and surgery
GerryS, Thank you for the encouraging words and prayers. It seems my husband doesn't really feel hungry either, and just can't tell when to quit eating. He lost 40 lbs during chemoradiation, and another 10 after surgery. Our oncologist is Omaha had mentioned Dr Deschamps, but when we got there we got an appointment time given to us to meet with Dr Wigle. I believe they must all be very, very good surgeons. He is probably at a more ideal weight now. His nickname used to be "Big Bob", affectionately, of course! I am also expecting we will be offered post surgery chemo. Would you mind telling me what chemo regimen was used in your case and how it went? A clean scan for you-how awesome! We also have grandchildren. 3 as of today, and a new baby girl due in October. We are getting very excited for her arrival. Linda

GerryS

Bobs1wife said:

Mayo treatment and surgery
GerryS, Thank you for the encouraging words and prayers. It seems my husband doesn't really feel hungry either, and just can't tell when to quit eating. He lost 40 lbs during chemoradiation, and another 10 after surgery. Our oncologist is Omaha had mentioned Dr Deschamps, but when we got there we got an appointment time given to us to meet with Dr Wigle. I believe they must all be very, very good surgeons. He is probably at a more ideal weight now. His nickname used to be "Big Bob", affectionately, of course! I am also expecting we will be offered post surgery chemo. Would you mind telling me what chemo regimen was used in your case and how it went? A clean scan for you-how awesome! We also have grandchildren. 3 as of today, and a new baby girl due in October. We are getting very excited for her arrival. Linda

post surgery chemo
I had 3 scheduled chemo treatments. Cisplatin and 5FU. Cisplatin on first day then a pump attached for 5 days with 5FU. I ended up having only 2 rounds as kidney function was declining and was very dehydrated. Chemo was tough on me. Was glad when it was over.

Were you at St Mary's. Did you meet Dr Price and Bill? They have an excellent staff and we were very happy with our care. I spent 8 days post surgery but about 3-4 months recovery at home. Our daughter was treated at Mayo in 1985 and we were very satisfied then. We are lucky to be only 2 hours from Rochester, NE IA, so we are fortunate. Hope all goes well with "Big Bob", tell him he has friend pulling for him that went thru the same.
Gerry

cindyhils

surgery in mayo also
I too had my surgery in the mayo clinic in rochester mn. I was diagnosed August"09, i had surgery in december of '09. I had THE surgery and did have one big complication but the drs were all super and the nusing staff was the best. I would highly recomend this place to everyone. I believe they saved my life. I had an artory wrapped around my new stomach which was very uncommon. this happened day 4 after my THE surgery. I had a second surgery and they fixed the problem. I went back to work march 1st, 8 weeks after getting home from the hospital. i am a preschool teacher. I have never needed dialation and can eat whatever i like, just in small amounts. I have my next cat scan monday , so the start of scanxiety is on.

katrina846

Omaha connection
Just scanning through the most recent posts and saw a few EC patients from Omaha. My Dad was diagonosed age 77 T3NOMO back in Nov 08. Had chemo/rad at Creighton and saw Dr. Thome as his Oncologist. Had Ivor Lewis at Creighton in May 09 by Dr. Jason Foster. So happy with his care! Latest scans last month show all clear. He is happy, great attitude, eats all he wants, maintains his weight at 176 and walks my black lab, Gus on a daily basis, rain or shine! The irony of it all is that he has survived (and thrived) with all of his treatment, only to have Parkinsons diagnosed with both he and my Mom...YIKES! Oh well, they live close by and are doing pretty darn well. They see all of their aging siblings dealing with their own trials and tribulations of aging and realize that they don't have it too bad!
All my best to all of you EC warriors and their caregivers!
Katrina

Amanda_5

GerryS said:

post surgery chemo
I had 3 scheduled chemo treatments. Cisplatin and 5FU. Cisplatin on first day then a pump attached for 5 days with 5FU. I ended up having only 2 rounds as kidney function was declining and was very dehydrated. Chemo was tough on me. Was glad when it was over.

Were you at St Mary's. Did you meet Dr Price and Bill? They have an excellent staff and we were very happy with our care. I spent 8 days post surgery but about 3-4 months recovery at home. Our daughter was treated at Mayo in 1985 and we were very satisfied then. We are lucky to be only 2 hours from Rochester, NE IA, so we are fortunate. Hope all goes well with "Big Bob", tell him he has friend pulling for him that went thru the same.
Gerry

Thanks for sharing
Dad was admitted to the Hospital yesterday he was in acute kidney failure from the same chemo treatment. They are planning his surgery for 6-8 weeks after chemo and radiation. It has been very hard on him! He will have his 2nd round of chemo in two weeks!

Bobs1wife

Amanda_5 said:

Thanks for sharing
Dad was admitted to the Hospital yesterday he was in acute kidney failure from the same chemo treatment. They are planning his surgery for 6-8 weeks after chemo and radiation. It has been very hard on him! He will have his 2nd round of chemo in two weeks!

Dad's in hospital
I'm so sorry your dad is in the hospital and for his serious side effect. I know we had some really tough times during chemo and we'll pray that your dad will get great care and start to get better soon. One step at a time and hopefully he will get back on track for his surgery. My husband had to have a lot of hydration, and even extra hydration on the days he wasn't planning on spending a day in the chemo lab. But it helped a lot. I know it is very hard on the kidneys. He actually had fluids before treatment, after treatment, and on some days in between. It is hard on him, and on you. What great support and love you show for him!

Bobs1wife

cindyhils said:

surgery in mayo also
I too had my surgery in the mayo clinic in rochester mn. I was diagnosed August"09, i had surgery in december of '09. I had THE surgery and did have one big complication but the drs were all super and the nusing staff was the best. I would highly recomend this place to everyone. I believe they saved my life. I had an artory wrapped around my new stomach which was very uncommon. this happened day 4 after my THE surgery. I had a second surgery and they fixed the problem. I went back to work march 1st, 8 weeks after getting home from the hospital. i am a preschool teacher. I have never needed dialation and can eat whatever i like, just in small amounts. I have my next cat scan monday , so the start of scanxiety is on.

Mayo surgery
It's wonderful to hear from you and about your surgery. I can not even imagine having the first surgery and 4 days later you are back in for another one. Your recovery sounds amazing. And a preschool teacher - what energy you needed to return! Preschoolers never seem to tire out. And you were back so soon! We were concerned about eating also. Did your doctor at Mayo not let you have anything to eat or drink for 4 LONG WEEKS? It was all my husband wanted to do for the last two weeks before he was allowed to eat He was making a list of the top 5 things he was dreaming about having first. Then, a few days before the big day to start eating he got anxiety about eating again!!! Go figure! It went well and he sounds a lot like you. Eating anything he wants, in smaller than usual quantities, except he doesn't feel hungry and can't tell when he is full. I'll be thinking of you having your scan on Monday and pray for a great result! Linda

Bobs1wife

katrina846 said:

Omaha connection
Just scanning through the most recent posts and saw a few EC patients from Omaha. My Dad was diagonosed age 77 T3NOMO back in Nov 08. Had chemo/rad at Creighton and saw Dr. Thome as his Oncologist. Had Ivor Lewis at Creighton in May 09 by Dr. Jason Foster. So happy with his care! Latest scans last month show all clear. He is happy, great attitude, eats all he wants, maintains his weight at 176 and walks my black lab, Gus on a daily basis, rain or shine! The irony of it all is that he has survived (and thrived) with all of his treatment, only to have Parkinsons diagnosed with both he and my Mom...YIKES! Oh well, they live close by and are doing pretty darn well. They see all of their aging siblings dealing with their own trials and tribulations of aging and realize that they don't have it too bad!
All my best to all of you EC warriors and their caregivers!
Katrina

Omaha Connection, too
Your dad sounds amazing! I'm sure it has given you such joy to see him thriving after such a serious diagnosis and surgery. And clear scans-what a blessing. My very good friend just finished 37 years in nursing, all at Creighton, so I have heard they have some very good doctors. It is such a good thing to really like your doctors and feel they are treating you well and individually as a person. Hopefully the Parkinsons will also be kept at bay for a long time by your father's strong will and also your mother's. I'm sure they love having you close by and seeing your dad walk Gus every day must bring a smile to you! Thanks for the good wishes. Linda

Bobs1wife

unknown said:

This comment has been removed by the Moderator

Paragraphs!
William, So sorry. It started out as a short little entry and just kept going. Unintended, and when I saw it posted I was a bit overwhelmed myself! I think when I finally did post my fingers couldn't begin to type fast enough!

Here's the soccer paragraph! Love the game. Our son played from age 6, grade school, high school, and college. My husband coached for many of the younger years. Our son is still playing at age 31. He had the honor to play in the Panther's stadium, NC for a Division 1 national championship in college. Creighton University vs UCONN. Unfortunately Creighton lost, but what an experience. Enjoy your game, we miss it, and somehow at our son's age we aren't invited to watch much anymore!

Here's the serious paragraph! You have been there-done that, and know right where many of us are coming from even if we don't know ourselves. Shock-disbelief, and then you lead us right into reality and what you can do to help us learn, be informed, and take charge to find out answers as to what we can, or should be doing. If you don't know an answer you seem to research and find one. Anything to help those with EC, or their caregivers, and families. To see Loretta and your smiling faces here after so many years also encourages me so much. Thank you for all you do and for all those you care about. Linda

Bobs1wife

GerryS said:

post surgery chemo
I had 3 scheduled chemo treatments. Cisplatin and 5FU. Cisplatin on first day then a pump attached for 5 days with 5FU. I ended up having only 2 rounds as kidney function was declining and was very dehydrated. Chemo was tough on me. Was glad when it was over.

Were you at St Mary's. Did you meet Dr Price and Bill? They have an excellent staff and we were very happy with our care. I spent 8 days post surgery but about 3-4 months recovery at home. Our daughter was treated at Mayo in 1985 and we were very satisfied then. We are lucky to be only 2 hours from Rochester, NE IA, so we are fortunate. Hope all goes well with "Big Bob", tell him he has friend pulling for him that went thru the same.
Gerry

Mayo Doctors
Chemo was really tough, and we were glad when it was over, too. Although I think we may get another round post surgery. We will find out soon.

We were at St Mary's. We did not meet Dr Price and Bill. Dr Wigle has another doctor working with him who's name is Cory. We were always trying to call hime Dr _______. And I can't remember his last name, as he said to just call him Cory! Very nice, Cory was, and checked on us a lot. Maybe he was particularly liked because he was the one to take out the nasty chest drain tubes. And the PA was Lisa. Very nice and competent team with Dr Wigle also.

Since you are so close did you do the Chemo at Mayo? Rochester is actually a 6 hour drive for us, but we feel it is well worth it, and we feel fortunate to be able to go there on our insurance. Linda

GerryS

Bobs1wife said:

Omaha Connection, too
Your dad sounds amazing! I'm sure it has given you such joy to see him thriving after such a serious diagnosis and surgery. And clear scans-what a blessing. My very good friend just finished 37 years in nursing, all at Creighton, so I have heard they have some very good doctors. It is such a good thing to really like your doctors and feel they are treating you well and individually as a person. Hopefully the Parkinsons will also be kept at bay for a long time by your father's strong will and also your mother's. I'm sure they love having you close by and seeing your dad walk Gus every day must bring a smile to you! Thanks for the good wishes. Linda

chemo........
I had my chemo in Waterloo, Ia as was closer. I had trouble with dehydration so was there several times during chemo getting fluids.
Our doctor here communicated with Mayo on several occasions so we were very pleased with that.
Good luck to all and how about the MIDWEST connection!