Off to Major Hospital for Surgical Consultation

linda1120
linda1120 Member Posts: 389
edited March 2014 in Esophageal Cancer #1
We have an appointment at Oregon Health and Science University Hospital in Portland, Oregon on Friday with a ec surgeon who specializes in mie. We are also seeing a physician who can do a aortic vulvoplasty which must be done before Jim can have surgery due to his aortic stenosis. Jim is still having IMRT radiation five days a week and has gone through one regimen of chemo (cisplatin & 5fu) and has one more on the 25th of this month. William was right when he told me this is a roller coaster ride! The radiation ends the beginning of November and then we will wait one month for a new Pet and CAT scan. If it has shrunk or destroyed the tumor they will go ahead with the surgery. We are anxious to get this second opinion. Our local surgeon wants to do an "open" surgery. William and others convinced me to reach out to a high volume cancer hospital for a second opinion. We are fortunate to have good friends who will drive us there and then we will take the AMTRAK home. I am looking forward to meeting these physicians who can help us.
On another note Jim is losing weight rapidly and due to celiac node involvement his radiation field interferes with inserting a "j" tube. I asked the oncologist about IV feeding and he is against it as he wants Jim's intestines to continue working because of the radiation to them. He also said there are other side effects they don't like. He "ordered" Jim to drink four ensures daily and to treat it like medicine. Jim is not able to get these down. I have tried baked potatoes and ensure based drinks and he just doesn't want much. I am going to make homemade chicken soup and give it a try. I have read that Sherri shreds the chicken. I know the chemo is changing his tastes of these foods, but am very concerned about weight loss and muscle loss. Any thoughts or suggestions would be welcomed.

Linda
Jim TXN1M0 diagnosed Sept 2010

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • sandy1943
    sandy1943 Member Posts: 824
    #3
    Hi, Have you tried the whey
    Hi, Have you tried the whey protein? Add this to juice , and it is delicious. I also grated a lot of my foods. Barbecue grated -chicken, beef or pork are all very good. I lost 98 pds. over a 1 1/2 yr. period. Have just made a turn around and gained 7 pds-Woo Hoo ! Unlike Jim I didn't lose any weight umtil after surgery. Glad you are getting another opinion about the surgery. I had the Ivor Lewis. I never knew there was mie until I joined this site. I did very well, but from what I've learned the mie would have been so much less invasive. All I can do now is encourage others to get that second opinion. Good Luck, Sandra
  • linda1120
    linda1120 Member Posts: 389
    #4
    unknown said:

    This comment has been removed by the Moderator

    j tube
    I don't understand it either, I think his life depends on getting this tube in. He
    fell this morning and the doctor said it was probably from dehydration. He tries so
    hard to get liquids down, but I see how difficult it is. I will give them a call and
    insist something be done. He is having IMRT radiation. Another person I have met said
    they couldn't have survived their throat cancer without the tube.

    Do you know how the celiac node involvement impacts his survival? The oncologist told
    me his cancer is still considered localized. I don't understand all of this.

    Thank you for responding.

    Linda
  • linda1120
    linda1120 Member Posts: 389
    #5
    sandy1943 said:

    Hi, Have you tried the whey
    Hi, Have you tried the whey protein? Add this to juice , and it is delicious. I also grated a lot of my foods. Barbecue grated -chicken, beef or pork are all very good. I lost 98 pds. over a 1 1/2 yr. period. Have just made a turn around and gained 7 pds-Woo Hoo ! Unlike Jim I didn't lose any weight umtil after surgery. Glad you are getting another opinion about the surgery. I had the Ivor Lewis. I never knew there was mie until I joined this site. I did very well, but from what I've learned the mie would have been so much less invasive. All I can do now is encourage others to get that second opinion. Good Luck, Sandra

    Whey & grating
    Thanks Sandra for the suggestions. Jim saw the nutritionist today and she gave him
    some samples of protein powder to mix in his juice. We did this today and he didn't
    mind it at all.

    I will start grating his meat and hopefully this will help. I am willing to do anything
    I can.

    Congratulations on your weight gain! 98 lbs is a lot of weight to lose! Jim and I had
    been on a weight loss plan before this happened and he dropped 30 lbs and I am wishing
    he had that weight on him now. Oh well, we were trying to be healthy and I did drop 38lbs
    and I feel better so now I can take better care of him. Linda
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #7
    linda1120 said:

    j tube
    I don't understand it either, I think his life depends on getting this tube in. He
    fell this morning and the doctor said it was probably from dehydration. He tries so
    hard to get liquids down, but I see how difficult it is. I will give them a call and
    insist something be done. He is having IMRT radiation. Another person I have met said
    they couldn't have survived their throat cancer without the tube.

    Do you know how the celiac node involvement impacts his survival? The oncologist told
    me his cancer is still considered localized. I don't understand all of this.

    Thank you for responding.

    Linda

    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #8
    Thinking of You
    Hello Linda and Jim
    After reading your most recent post, I wanted to let you know I am thinking of you today and hoping you get a world of information and help from your consultation appointment. You are doing the right thing. You are on the right track. I was glad to read that Jim is able to drink the protein in the juice. Drink these juice drinks like they are medicine! Best of luck to both of you. Keep in touch.
    Tina
  • linda1120
    linda1120 Member Posts: 389
    #9
    unknown said:

    This comment has been removed by the Moderator

    We are at dr office as I am
    We are at dr office as I am reading this. Will address all of the questions.

    Sounds lime we still need to go to irvine.
    Linda
  • linda1120
    linda1120 Member Posts: 389
    #10
    unknown said:

    This comment has been removed by the Moderator

    OSHU Team of Surgeons for Esophageal Cancer
    We have returned from Oregon Science & Health University Medical Center. What an amazing place. Everything went smoothly and as I previously wrote, I was able to connect on my Itouch Ipod while waiting to see the surgeon and saw William's message. We were able to ask all of the questions you all proposed, Sherri included. First let me start by saying the surgeon personally knows Dr. Luketich and his fellow Dr. Nygyen. As I was trying to pronounce his name, Dr. Dolan said his name phonetically correct! He and his team at OSHU do 90% of their surgeries laproscopically. He uses the MIE method and said Jim is definitely a candidate for it. He and his team, including a thoracic surgeon were very distressed to see that a Endoscopic ultrasound was not done to stage the cancer in the beginning. Our oncologist and the local surgeon told us it wasn't necessary and the staging would be done at the time of Ivor-Lewis surgery. I questioned this twice! Dr. Dolan explained to me it is much better to do this at the beginning for many reasons and explained them all. William, and Sherri, all of your knowledge helped me to understand and ask helpful questions. The first concern for this team is to get Jim's aortic valve opened and they can take care of this. During the same trip they will do the endoscopic ultrasound and get some biopsies from the lymph nodes and stage the cancer at this point. Their nurse is co-ordinating with our oncologists here in Coeur d'Alene and Jim and I will be making one trip to Oregon for these two procedures and then after radiation we will be going there for surgery. He also said there is no reason why Jim cannot have a "j" tube and they can put that in as well. It sounds like we are at the right place and they are a high volume hospital. He is doing genetic tumor research on esophageal cancers. They spent over three hours with us and answered the many questions Jim and I had.

    There is more, but I think that will answer the points made with Sherri and William's posts. Thank you all for all of the questions and concern regarding our previous care. This website has been a God send for Jim and I and will save him much pain and suffering by having the MIE with a team of surgeons that are qualified and have a excellent record.

    Linda
  • sal314
    sal314 Member Posts: 599 Member
    #11
    linda1120 said:

    OSHU Team of Surgeons for Esophageal Cancer
    We have returned from Oregon Science & Health University Medical Center. What an amazing place. Everything went smoothly and as I previously wrote, I was able to connect on my Itouch Ipod while waiting to see the surgeon and saw William's message. We were able to ask all of the questions you all proposed, Sherri included. First let me start by saying the surgeon personally knows Dr. Luketich and his fellow Dr. Nygyen. As I was trying to pronounce his name, Dr. Dolan said his name phonetically correct! He and his team at OSHU do 90% of their surgeries laproscopically. He uses the MIE method and said Jim is definitely a candidate for it. He and his team, including a thoracic surgeon were very distressed to see that a Endoscopic ultrasound was not done to stage the cancer in the beginning. Our oncologist and the local surgeon told us it wasn't necessary and the staging would be done at the time of Ivor-Lewis surgery. I questioned this twice! Dr. Dolan explained to me it is much better to do this at the beginning for many reasons and explained them all. William, and Sherri, all of your knowledge helped me to understand and ask helpful questions. The first concern for this team is to get Jim's aortic valve opened and they can take care of this. During the same trip they will do the endoscopic ultrasound and get some biopsies from the lymph nodes and stage the cancer at this point. Their nurse is co-ordinating with our oncologists here in Coeur d'Alene and Jim and I will be making one trip to Oregon for these two procedures and then after radiation we will be going there for surgery. He also said there is no reason why Jim cannot have a "j" tube and they can put that in as well. It sounds like we are at the right place and they are a high volume hospital. He is doing genetic tumor research on esophageal cancers. They spent over three hours with us and answered the many questions Jim and I had.

    There is more, but I think that will answer the points made with Sherri and William's posts. Thank you all for all of the questions and concern regarding our previous care. This website has been a God send for Jim and I and will save him much pain and suffering by having the MIE with a team of surgeons that are qualified and have a excellent record.

    Linda

    So Glad to Hear Such Good News!!
    Sounds like you are defiantely in the right place!! So happy for you and Jim. I'll continue to lift you up in prayer as you continue in your journey!

    Blessings,

    Sally
  • sandy1943
    sandy1943 Member Posts: 824
    #12
    linda1120 said:

    OSHU Team of Surgeons for Esophageal Cancer
    We have returned from Oregon Science & Health University Medical Center. What an amazing place. Everything went smoothly and as I previously wrote, I was able to connect on my Itouch Ipod while waiting to see the surgeon and saw William's message. We were able to ask all of the questions you all proposed, Sherri included. First let me start by saying the surgeon personally knows Dr. Luketich and his fellow Dr. Nygyen. As I was trying to pronounce his name, Dr. Dolan said his name phonetically correct! He and his team at OSHU do 90% of their surgeries laproscopically. He uses the MIE method and said Jim is definitely a candidate for it. He and his team, including a thoracic surgeon were very distressed to see that a Endoscopic ultrasound was not done to stage the cancer in the beginning. Our oncologist and the local surgeon told us it wasn't necessary and the staging would be done at the time of Ivor-Lewis surgery. I questioned this twice! Dr. Dolan explained to me it is much better to do this at the beginning for many reasons and explained them all. William, and Sherri, all of your knowledge helped me to understand and ask helpful questions. The first concern for this team is to get Jim's aortic valve opened and they can take care of this. During the same trip they will do the endoscopic ultrasound and get some biopsies from the lymph nodes and stage the cancer at this point. Their nurse is co-ordinating with our oncologists here in Coeur d'Alene and Jim and I will be making one trip to Oregon for these two procedures and then after radiation we will be going there for surgery. He also said there is no reason why Jim cannot have a "j" tube and they can put that in as well. It sounds like we are at the right place and they are a high volume hospital. He is doing genetic tumor research on esophageal cancers. They spent over three hours with us and answered the many questions Jim and I had.

    There is more, but I think that will answer the points made with Sherri and William's posts. Thank you all for all of the questions and concern regarding our previous care. This website has been a God send for Jim and I and will save him much pain and suffering by having the MIE with a team of surgeons that are qualified and have a excellent record.

    Linda

    Hi, Glad to hear you are
    Hi, Glad to hear you are with Drs you have confidence in. Sounds like he is in good hands, that is going to get the ball rolling.
    Praying for you both
    Sandra
  • sandy1943
    sandy1943 Member Posts: 824
    #13
    linda1120 said:

    OSHU Team of Surgeons for Esophageal Cancer
    We have returned from Oregon Science & Health University Medical Center. What an amazing place. Everything went smoothly and as I previously wrote, I was able to connect on my Itouch Ipod while waiting to see the surgeon and saw William's message. We were able to ask all of the questions you all proposed, Sherri included. First let me start by saying the surgeon personally knows Dr. Luketich and his fellow Dr. Nygyen. As I was trying to pronounce his name, Dr. Dolan said his name phonetically correct! He and his team at OSHU do 90% of their surgeries laproscopically. He uses the MIE method and said Jim is definitely a candidate for it. He and his team, including a thoracic surgeon were very distressed to see that a Endoscopic ultrasound was not done to stage the cancer in the beginning. Our oncologist and the local surgeon told us it wasn't necessary and the staging would be done at the time of Ivor-Lewis surgery. I questioned this twice! Dr. Dolan explained to me it is much better to do this at the beginning for many reasons and explained them all. William, and Sherri, all of your knowledge helped me to understand and ask helpful questions. The first concern for this team is to get Jim's aortic valve opened and they can take care of this. During the same trip they will do the endoscopic ultrasound and get some biopsies from the lymph nodes and stage the cancer at this point. Their nurse is co-ordinating with our oncologists here in Coeur d'Alene and Jim and I will be making one trip to Oregon for these two procedures and then after radiation we will be going there for surgery. He also said there is no reason why Jim cannot have a "j" tube and they can put that in as well. It sounds like we are at the right place and they are a high volume hospital. He is doing genetic tumor research on esophageal cancers. They spent over three hours with us and answered the many questions Jim and I had.

    There is more, but I think that will answer the points made with Sherri and William's posts. Thank you all for all of the questions and concern regarding our previous care. This website has been a God send for Jim and I and will save him much pain and suffering by having the MIE with a team of surgeons that are qualified and have a excellent record.

    Linda

    Hi, Glad to hear you are
    Hi, Glad to hear you are with Drs you have confidence in. Sounds like he is in good hands, that is going to get the ball rolling.
    Praying for you both
    Sandra

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