SURGERY RESEARCH for Brendon - Please post if you have had surgery to remove your esophagus - Please

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  • nancyann3
    nancyann3 Member Posts: 173 Member
    unknown said:

    This comment has been removed by the Moderator

    Our cancer journey....
    Hubby is just out of surgery, so probably not much help, but thought I would tell ours.

    Diagnosed 2/2010 stage T3N1M0
    Three seperate rounds of chemo and 28 rad treatments
    Surgery was cancelled early on due to blood clots and poor performance during chemo.

    We have not had what seems like the "normal" treatment prior to surgery, but we made it after a long year.

    Surgery was on feb.16th 2011 Ivor Lewis, but no broken ribs. So far incisions have healed well. No problems with voice. It reall has amazed me how fast he has healed after all the chemo and rad he had. His set backs so far are hydration and blood loss. He has always been hesitant with everything, so that has caused him some problems with eating and hydration. But seems to be doing better now. He has no problems swollowing right now. jtube is a life saver to get calories in.

    Out of 17 lymph nodes removed, 4 were positive, so we dont know what the plan will be next. Just working on recovery for now. Like I said we are so close out of surgery that I cant give you much info on that, but the best advice I can give on treatments is staying hydrated and get calories in. If you can go with the MIE thats great.

    Take care
    Nancy
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member

    Thanks Tina
    Even though I sometimes don't understand everything I read...I'm soooo much more knowledgeable about EC than I was on Feb 1st when Brendon was diagnosed. The more we all know, the better choices we can make for our loved ones. Thanks for your continued support and prayers!
    Susie

    Chewing Tobacco
    Hello Susie and Brendon
    Thanks for all of your recent updates. Sounds like you guys are really on the ball! I wanted to let you know of the tobacco company who makes the mint flavored tobacco. It is called, Oregon Mint Snuff Co. Plain and simple huh? You order it online. Comes in mint wintergreen and spearmint flavors. My husband chewed for over 30 years. This stuff works and it does not have the tobacco or nicotine. Hope this helps. Keep on keepin on! We are cheering you on. God bless and keep in touch.
    Tina in Va
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    skyhawk said:

    I was dx 4-15-08 at the age
    I was dx 4-15-08 at the age of 43. I was a firefighter at the time of dx and in great physical shape. At dx, I was T3N1M0. I decided to seek a 2nd opinion and travel to MD Anderson in Houston. I was prescribed 5 weeks of chemo along with 28 days of radiation before potential surgery. I done so good with chemo, I opted for 2 more weeks of it.

    I had a repeat CT/PET after 5 weeks with nothing showing. Now, he gave the choice of MIE, or IL. He told me the MIE was easier, but I can no doubt see more witht he IL and will take out more nodes with the IL, but it is your choice. I told him I was in shape, so the IL didn't scare me, so lets do it.

    8-12-08, we done the IL. I was out of surgery at 4:30 that afternoon, and at midnight, I was up walking. I done so well, I never was in ICU, etc. I got out of the hospital onthe 8th day. I have had no complications at all. My path was clear with 1 node of 44 showing scattered cells. He then showed me a study from MDA that post op chemo had no benefit other than to weaken your immune system either further, so I opted out of that. That is what the surgery is for, to take care of the few remaining cells if there are any. Now if there are floating cells, then they are floating cells. I was doing no more chemo after surgery after I read the study.

    On Nov 9, less than 3 months after IL, I was back full duty as a firefighter and 8 months after IL, I hiked 50 miles ont he Applachian Trail with a 35lb pack on my back. I now don't ever think about the surgery, because I look back and it seemed so simple to me. I now can eat a full 2 plates of food, 2 hamburgers, and do whatever I want to. NOW I KNOW EVERYONE DON'T ENJOY THESE RESULTS.

    I know that I am not out of the woods by any means, but I am enjoying life as before and seldom think about cancer anymore. I have decided if it shows its head again, I will deal with it then. I go back to MDA April 15 for scans and that is also my 3 yrs since dx. If my scans are good, then we will only scan yearly from here on.

    That is my story and I hope it helps you make decisions. Just remember, there are lots of complications with the IL, but I had a very experienced surgeon and had no complications at all.

    Thank You
    Hello skyhawk
    Just wanted to thank you for posting your wonderful success story. Praise the Lord! Best of continued success to you, and thank you for being a firefighter! God bless and peace be with you.
    Tina in Va
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    nancyann3 said:

    Our cancer journey....
    Hubby is just out of surgery, so probably not much help, but thought I would tell ours.

    Diagnosed 2/2010 stage T3N1M0
    Three seperate rounds of chemo and 28 rad treatments
    Surgery was cancelled early on due to blood clots and poor performance during chemo.

    We have not had what seems like the "normal" treatment prior to surgery, but we made it after a long year.

    Surgery was on feb.16th 2011 Ivor Lewis, but no broken ribs. So far incisions have healed well. No problems with voice. It reall has amazed me how fast he has healed after all the chemo and rad he had. His set backs so far are hydration and blood loss. He has always been hesitant with everything, so that has caused him some problems with eating and hydration. But seems to be doing better now. He has no problems swollowing right now. jtube is a life saver to get calories in.

    Out of 17 lymph nodes removed, 4 were positive, so we dont know what the plan will be next. Just working on recovery for now. Like I said we are so close out of surgery that I cant give you much info on that, but the best advice I can give on treatments is staying hydrated and get calories in. If you can go with the MIE thats great.

    Take care
    Nancy

    Congrats
    Hello Nancy
    So glad to read your recent update and reply. Praise the Lord and may he continue to bless you and your husband with his recovery. Take it slow and easy. Slow and easy wins the race my friend. Glad to hear he has the jtube and is doing fairly well with the recovery. Praying for you both. Update when you can. You have done and are doing a great job Nancy. Hugs to you both!
    Tina in Va
  • jpturn4
    jpturn4 Member Posts: 19
    Update on decision?
    Hi Susie

    THANK YOU so much for posting this question on the format you used, I have also been pro-active in my research for my husband but LOVE the way you managed to ask the right question prompting such a great post with so many positive replies.

    Paul is T3N3 and it's hard on one hand to read all these great inspiring replies, when they are ALL lower numbers, but at 44 fit and strong, we have to take comfort so many great reports. However if anyone is aware of an inspiring story with simular staging, I cannot even express how great it would be to hear from them.

    We have also been in touch with Mr Luketich and are waiting for Paul to finish his 4 cycles of chemo before what next......to be honest, I think we are at the point where it's a no brainer for us. IF Paul can have the MIE we will go to Pittsburgh and utilize the endless offers of support from friends to help with the kids while we go. When it is literally life or death, a small matter of 4 kids etc just can't stand in the way.

    Please let us know what you decide, where you go and how it goes.....thinking of you both.

    Julie
  • Three-Holes approch
    Hi Susie,

    Hope your husband is doing excellent.

    1. What stage your cancer (or your loved ones) was in? Stage III, T3N1M0 @ GE junction (squamous carcinoma)
    2. What treatment you had prior or after surgery? Neoadjuvant Chemo. Consisting on Oxaliplatin (Three rounds)& 5FU 24/7 X 5 Weeks. Radiation 5 weeks (M thr F). Had surgery on 07-28-11 at UCLA California. All clear per Path. Then, have 3 rounds of Oxaliplatin, Leucovorin, and 5FU.
    3. What surgery you had? Three Holes approach. One incision on my neck, one on my tummy, and one on my back right rib.
    4. What complications did you endure with your surgery? During surgery,complications was that esophagus got attached to my airway,so there was an air leakage. Blame radiation. My surgery lasted for 8 hours. I am so small, so surgeon placed my stomach on my left neck. He removed my clavicle. After surgery,my colon was sleeping still,so my colon become so swollen on day 5. Spent on the hospital for 12 days.
    5. Whether or not they removed your entire esophagus? Yes with 1/3 my stomach.
    6. And how long has it been since you had your surgery? 8 months
    Hoping you for the best!

    Yovana
  • wifeforlife
    wifeforlife Member Posts: 189

    Three-Holes approch
    Hi Susie,

    Hope your husband is doing excellent.

    1. What stage your cancer (or your loved ones) was in? Stage III, T3N1M0 @ GE junction (squamous carcinoma)
    2. What treatment you had prior or after surgery? Neoadjuvant Chemo. Consisting on Oxaliplatin (Three rounds)& 5FU 24/7 X 5 Weeks. Radiation 5 weeks (M thr F). Had surgery on 07-28-11 at UCLA California. All clear per Path. Then, have 3 rounds of Oxaliplatin, Leucovorin, and 5FU.
    3. What surgery you had? Three Holes approach. One incision on my neck, one on my tummy, and one on my back right rib.
    4. What complications did you endure with your surgery? During surgery,complications was that esophagus got attached to my airway,so there was an air leakage. Blame radiation. My surgery lasted for 8 hours. I am so small, so surgeon placed my stomach on my left neck. He removed my clavicle. After surgery,my colon was sleeping still,so my colon become so swollen on day 5. Spent on the hospital for 12 days.
    5. Whether or not they removed your entire esophagus? Yes with 1/3 my stomach.
    6. And how long has it been since you had your surgery? 8 months
    Hoping you for the best!

    Yovana

    Susie
    Susie,
    I am related to someone that Brendon works with. I saw them last night and they told me of his condition, they spoke with me because I have some experience. My husband had/has stage 4 base of tongue/tonsil cancer. the surgery is different, but the chemo, radiation, feeding tubes etc are all the same.... I have sent you a friend request so we can speak privately if you wish. I would be happy to help in any way I can.
    Take car,
    Wifeforlife
  • Susie_Brendon
    Susie_Brendon Member Posts: 128
    jpturn4 said:

    Update on decision?
    Hi Susie

    THANK YOU so much for posting this question on the format you used, I have also been pro-active in my research for my husband but LOVE the way you managed to ask the right question prompting such a great post with so many positive replies.

    Paul is T3N3 and it's hard on one hand to read all these great inspiring replies, when they are ALL lower numbers, but at 44 fit and strong, we have to take comfort so many great reports. However if anyone is aware of an inspiring story with simular staging, I cannot even express how great it would be to hear from them.

    We have also been in touch with Mr Luketich and are waiting for Paul to finish his 4 cycles of chemo before what next......to be honest, I think we are at the point where it's a no brainer for us. IF Paul can have the MIE we will go to Pittsburgh and utilize the endless offers of support from friends to help with the kids while we go. When it is literally life or death, a small matter of 4 kids etc just can't stand in the way.

    Please let us know what you decide, where you go and how it goes.....thinking of you both.

    Julie

    Hello Julie!
    Do NOT get discouraged!!! Paul, like Brendon, is young, strong, and healthy!! WE WILL GET THROUGH THIS!!! We have three girls so we know what it's like to struggle the children around...what's worse for us is that the girls and I still are living 3 hours away from Brendon (long story short - need to keep my job here for FMLA and dual insurance)...so we also are juggling the distance...so if we can do it...SO CAN YOU!!!!

    We are in the final decision making matters of what surgery will be the best for Brendon. We sent off a few final questions today...you are right...it's a huge decision. I will be sure to let everyone know what choice Brendon finally makes.

    I will say extra prayers for Paul, you, and your children. Just remember that any statistics you read are probably out of date...so don't let them scare you. Medicine and technology are improving daily.

    Hugs to you,
    Susie
  • Susie_Brendon
    Susie_Brendon Member Posts: 128

    Three-Holes approch
    Hi Susie,

    Hope your husband is doing excellent.

    1. What stage your cancer (or your loved ones) was in? Stage III, T3N1M0 @ GE junction (squamous carcinoma)
    2. What treatment you had prior or after surgery? Neoadjuvant Chemo. Consisting on Oxaliplatin (Three rounds)& 5FU 24/7 X 5 Weeks. Radiation 5 weeks (M thr F). Had surgery on 07-28-11 at UCLA California. All clear per Path. Then, have 3 rounds of Oxaliplatin, Leucovorin, and 5FU.
    3. What surgery you had? Three Holes approach. One incision on my neck, one on my tummy, and one on my back right rib.
    4. What complications did you endure with your surgery? During surgery,complications was that esophagus got attached to my airway,so there was an air leakage. Blame radiation. My surgery lasted for 8 hours. I am so small, so surgeon placed my stomach on my left neck. He removed my clavicle. After surgery,my colon was sleeping still,so my colon become so swollen on day 5. Spent on the hospital for 12 days.
    5. Whether or not they removed your entire esophagus? Yes with 1/3 my stomach.
    6. And how long has it been since you had your surgery? 8 months
    Hoping you for the best!

    Yovana

    your surgery
    Yovana,
    How are you feeling 8 months later?? Sounds like you had a few more roadblocks than you would have liked after surgery, so I hope this message finds you feeling better and stronger.

    Thank you so much for your reply...the more information we have on the various surgery's the better decision we will be able to make.

    Keep us posted on your update!!!

    Susie
  • your surgery
    Yovana,
    How are you feeling 8 months later?? Sounds like you had a few more roadblocks than you would have liked after surgery, so I hope this message finds you feeling better and stronger.

    Thank you so much for your reply...the more information we have on the various surgery's the better decision we will be able to make.

    Keep us posted on your update!!!

    Susie

    Excellent
    I am working full time since January. I can eat everything including spicy food, but small amount. I eat like 4 or 5 meals a day. My weight is stable. After surgery I only lost 4 pounds and I got it back in a month 2 months later. I am not 114 pounds. I am 5.1'

    Thank you!

    Hope your husband a quick recovery!

    Yovana