Hi, new here...

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faye082
faye082 Member Posts: 14
edited March 2014 in Esophageal Cancer #1
Hi everyone,

My name is Faye and my Dad was recently diagnosed with stage 3 esophageal cancer. He had been having some trouble with swallowing certain foods and then about 2 weeks ago he was taken to the hospital after throwing up some blood and passing out. They told us it was most likely an ulcer and did an endoscopy, finding a tumor in his lower esophagus which they told us was called adenocarcinoma. They staged him at T3,N1,M0. He was almost immediately started on radiation and a 4 day chemo drip which consisted of Cisplatin and 5Fu which he finished a week ago tomorrow. they say he will do 5 1/2 to 6 weeks of radiation and 1 more round of chemo in 4 weeks and then 8 to 10 weeks of rest before surgery. So far he has had 8 radiation treatments and has been feeling pretty nauseated from the chemo. I love my dad SO much and we are a close family.I'm 28, my mom is 60, and my dad is 61, has been in great health until now, doesn't drink or smoke, and is the kindest, smartest, most loving person you will ever meet. I am so glad to find this message board and I would love to be able to hear any advice from anyone. We are trusting in GOD but we are new at all this and it is scary.

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  • Unknown
    Unknown
    #2
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    This comment has been removed by the Moderator
  • faye082
    faye082 Member Posts: 14
    #3
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    unknown said:

    This comment has been removed by the Moderator

    Thank You William
    Hi William,
    Thanks so much for your response. It is so encouraging to hear your story. We live in Salem,Oregon and my dad is being treated at Salem hospital. They do have a cancer center there but I'm not sure how many esophageal cancer patients they treat there since I understand it is a more rare cancer. His insurance is through Kaiser Permanente and they have a surgeon they want us to use. We met with him last week and he said that he could do the surgery "partly minimally invasive" but that he would still need to make another incision on the upper side torso area (by the ribs I think?) in order to remove the lymph nodes. I am confused by this as I have done some research and read about the more invasive "Ivor Lewis" procedure and also about the MIE procedure, but I don't really understand what he means by saying he can do part of it laparoscopically (not sure if i'm spelling this right?) but not the other part. He made it seem like Dad wouldn't be a candidate for a complete MIE because he has 1 node involved, but after hearing your story I wonder if he's mistaken? We are seeing him again on Friday because he wants to assess Dad's weight and see if he should get a feeding tube now to prevent weight loss before surgery. Dad is going to ask him if it would be Ok to seek a 2nd opinion from a surgeon in Portland at Oregon Health & Sciences University who does a lot of the MIE surgeries and has been highly recommended (Dr. Kevin Billingsley). Dad's oncologist told him that the surgeon he has now would have to be willing to refer him to Dr. Billingsley in order for their insurance to allow it. We are definitely going to pursue it though and hopefully we will be able to. Dr. Luketich sounds great...I wonder if he has trained any surgeons in our area? Thanks again so much and I will keep you posted!
  • MOE58
    MOE58 Member Posts: 589 Member
    #4
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    IVOR LEWIS SURGERY
    Hi Faye, and welcome. I just read your post and another one has come on board. I just wanted to let you know that my husband Jeff had the IVOR LEWIS SURGERY back in July of 09, he was stage 2 and only 45 years old. He had chemo before surgery, and we didn't even go for a second opinion, cause we knew he was in good hands.

    Jeff did great through the surgery it is a difficult surgery and I would still recommend it, especially if people are not able to have the MIE surgery. Its okay and if you want to know more I will be glad to share.

    My name is Lori but go by MOE on here. Please do not hesitate to ask I walked it all

    Lori
  • faye082
    faye082 Member Posts: 14
    #5
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    MOE58 said:

    IVOR LEWIS SURGERY
    Hi Faye, and welcome. I just read your post and another one has come on board. I just wanted to let you know that my husband Jeff had the IVOR LEWIS SURGERY back in July of 09, he was stage 2 and only 45 years old. He had chemo before surgery, and we didn't even go for a second opinion, cause we knew he was in good hands.

    Jeff did great through the surgery it is a difficult surgery and I would still recommend it, especially if people are not able to have the MIE surgery. Its okay and if you want to know more I will be glad to share.

    My name is Lori but go by MOE on here. Please do not hesitate to ask I walked it all

    Lori

    Hi Moe!
    Thanks So much it is so good to hear that he did great through the surgery. I am so happy to be able to talk with someone who has been through it and to have some support. I know I will have many many more questions in the days and weeks and months to come but it is nice to know I'm not alone :) and congratulations to you and Jeff for making it through and being so strong! It helps to have some role models to look to.
    Thanks again

    faye
  • johnskat
    johnskat Member Posts: 4
    #6
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    Esophageal Cancer
    Hi Faye,
    I'm so sorry to read about your father. My 65 year old father also was recently diagnosed with T3N1M0 esophageal cancer. We also live in Salem, Oregon and my dad is in his fourth week of treatment. The care we have received in Salem has been good - mostly because my father's oncologist is open and a great listener in hearing my thoughts and questions after reading nearly every study published on esophageal cancer in the past 10 years. My father started on 5FU and Cisplatin for the first three weeks (Cisplatin once a week and a continuous 5FU drip) but we recently changed agents to Paclitaxel as his repeat PET showed his SUVs weren't decreasing as much as we would like. He will have his surgery in Portland.
    This is a terrible disease but there are survivors! If your father would like to correspond with someone locally who is also walking in his shoes, please let me know.
    Best wishes,
    Kathryn
  • Joy210
    Joy210 Member Posts: 2
    #7
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    Your Dad
    Just read your story about your dad, and had to write and comment. Your story is SO similar to my. My husband went thru exactly what your dad went thru. But I'm writing you to tell you there IS hope! After going thru all that treatment, my husband had that major surgery done June 2008. I was so frighten for him, but he was such a trooper (now 63), and he never complained about anything! NO pain! Eating still is an issue for him, but he is not on the feeding tube (that only lasted for 2 mos.)and is maintaining his weight of 165lbs. He had his surgery done at Duke, and continues to go back every 3-4 mos. for check ups. They are thrilled with how well he has done!!! He was back working (real estate) 6 mos. after his surgery, and continues to do whatever he wants! Last weekend, he went camping with our 7yr.old grandson, and had a ball!
    So, Faye please try to keep your faith! I know you love your father very much, and will always worry about him. But, hopefully he will do as well as my husband Jim did. I pray he will!
    Best wishes to your dad, and please keep all of us posted. Anxious to hear!
    Let me know if I can be of any help to you! Joy
  • K_ann1015
    K_ann1015 Member Posts: 500
    #8
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    Joy210 said:

    Your Dad
    Just read your story about your dad, and had to write and comment. Your story is SO similar to my. My husband went thru exactly what your dad went thru. But I'm writing you to tell you there IS hope! After going thru all that treatment, my husband had that major surgery done June 2008. I was so frighten for him, but he was such a trooper (now 63), and he never complained about anything! NO pain! Eating still is an issue for him, but he is not on the feeding tube (that only lasted for 2 mos.)and is maintaining his weight of 165lbs. He had his surgery done at Duke, and continues to go back every 3-4 mos. for check ups. They are thrilled with how well he has done!!! He was back working (real estate) 6 mos. after his surgery, and continues to do whatever he wants! Last weekend, he went camping with our 7yr.old grandson, and had a ball!
    So, Faye please try to keep your faith! I know you love your father very much, and will always worry about him. But, hopefully he will do as well as my husband Jim did. I pray he will!
    Best wishes to your dad, and please keep all of us posted. Anxious to hear!
    Let me know if I can be of any help to you! Joy

    Hi Joy, my dad also went to
    Hi Joy, my dad also went to DUKE--had surgery 12/09 and now is doing clean up chemo---having trouble gaining weight--he is a small guy anyway, but is downright skinny now. All in all he is doing well. Who were your surgeons, oncologists & such. My dad's Dr's seemed to be young---but they like them and are very happy. thanks for posting this because even though my dad is doing pretty well---one can't help but worry... Does you dad live near DUKE? My parents have to drive 3 1/2 hours one way for all those appointments.
    I pray for continued health and good check ups for your husband!
    Kim
  • Unknown
    Unknown
    #9
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    faye082 said:

    Thank You William
    Hi William,
    Thanks so much for your response. It is so encouraging to hear your story. We live in Salem,Oregon and my dad is being treated at Salem hospital. They do have a cancer center there but I'm not sure how many esophageal cancer patients they treat there since I understand it is a more rare cancer. His insurance is through Kaiser Permanente and they have a surgeon they want us to use. We met with him last week and he said that he could do the surgery "partly minimally invasive" but that he would still need to make another incision on the upper side torso area (by the ribs I think?) in order to remove the lymph nodes. I am confused by this as I have done some research and read about the more invasive "Ivor Lewis" procedure and also about the MIE procedure, but I don't really understand what he means by saying he can do part of it laparoscopically (not sure if i'm spelling this right?) but not the other part. He made it seem like Dad wouldn't be a candidate for a complete MIE because he has 1 node involved, but after hearing your story I wonder if he's mistaken? We are seeing him again on Friday because he wants to assess Dad's weight and see if he should get a feeding tube now to prevent weight loss before surgery. Dad is going to ask him if it would be Ok to seek a 2nd opinion from a surgeon in Portland at Oregon Health & Sciences University who does a lot of the MIE surgeries and has been highly recommended (Dr. Kevin Billingsley). Dad's oncologist told him that the surgeon he has now would have to be willing to refer him to Dr. Billingsley in order for their insurance to allow it. We are definitely going to pursue it though and hopefully we will be able to. Dr. Luketich sounds great...I wonder if he has trained any surgeons in our area? Thanks again so much and I will keep you posted!

    This comment has been removed by the Moderator
  • faye082
    faye082 Member Posts: 14
    #10
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    johnskat said:

    Esophageal Cancer
    Hi Faye,
    I'm so sorry to read about your father. My 65 year old father also was recently diagnosed with T3N1M0 esophageal cancer. We also live in Salem, Oregon and my dad is in his fourth week of treatment. The care we have received in Salem has been good - mostly because my father's oncologist is open and a great listener in hearing my thoughts and questions after reading nearly every study published on esophageal cancer in the past 10 years. My father started on 5FU and Cisplatin for the first three weeks (Cisplatin once a week and a continuous 5FU drip) but we recently changed agents to Paclitaxel as his repeat PET showed his SUVs weren't decreasing as much as we would like. He will have his surgery in Portland.
    This is a terrible disease but there are survivors! If your father would like to correspond with someone locally who is also walking in his shoes, please let me know.
    Best wishes,
    Kathryn

    Thank You Kathryn
    Thanks so much Kathryn, I can't believe we are both in Salem! I would love to know who your dad's oncologist is and also where/who will be performing his surgery. Please keep us updated on his progress and he will be in my prayers!!
  • faye082
    faye082 Member Posts: 14
    #11
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    Joy210 said:

    Your Dad
    Just read your story about your dad, and had to write and comment. Your story is SO similar to my. My husband went thru exactly what your dad went thru. But I'm writing you to tell you there IS hope! After going thru all that treatment, my husband had that major surgery done June 2008. I was so frighten for him, but he was such a trooper (now 63), and he never complained about anything! NO pain! Eating still is an issue for him, but he is not on the feeding tube (that only lasted for 2 mos.)and is maintaining his weight of 165lbs. He had his surgery done at Duke, and continues to go back every 3-4 mos. for check ups. They are thrilled with how well he has done!!! He was back working (real estate) 6 mos. after his surgery, and continues to do whatever he wants! Last weekend, he went camping with our 7yr.old grandson, and had a ball!
    So, Faye please try to keep your faith! I know you love your father very much, and will always worry about him. But, hopefully he will do as well as my husband Jim did. I pray he will!
    Best wishes to your dad, and please keep all of us posted. Anxious to hear!
    Let me know if I can be of any help to you! Joy

    Wow Joy! That is so encouraging :)
    Thanks so much for sharing your story about your husband Jim. Sounds like they have a lot of similarities. My dad is even in real estate too! I am so glad to hear that he was in no pain and also that he is able to maintain his weight. It is so encouraging to hear and to be reminded to keep to my faith. I hope and pray that things will go as well for him as they have for Jim! Thank you for the encouragement Joy! :)
  • faye082
    faye082 Member Posts: 14
    #12
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    unknown said:

    This comment has been removed by the Moderator

    Great information and thank you!!!
    William,
    Wow, thank you so very much for all this wonderful information! I can see you are right in saying that we will need to become "quick learners" as there is so much to read and study about. I will be calling today to find out if there are any thoracic surgeons in our area who have trained under Dr. Luketich and I will let you know what I find out! I am so thankful for you all on this site for the help and support and all of the information you have shared. Dad seems to be doing much better nausea wise but he will be doing his second round of chemo in a couple weeks. We are praying it goes smoothly and that the tumor is being destroyed with each radiation session and each drop of chemo. It's great to hear you had no trouble swallowing. The doctors keep telling my dad he will probably start having trouble with swallowing and need pain meds, but so far he says he doesn't have any pain or trouble with swallowing. Today will be his 10th radiation.
    Thanks again William, I am so thankful for you and all your help.
    faye
  • johnskat
    johnskat Member Posts: 4
    #13
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    faye082 said:

    Thank You Kathryn
    Thanks so much Kathryn, I can't believe we are both in Salem! I would love to know who your dad's oncologist is and also where/who will be performing his surgery. Please keep us updated on his progress and he will be in my prayers!!

    Esophageal Cancer
    Hi Faye,
    Sorry it took me some time to respond. My father's oncologist is Dr. Strother and his radiation oncologist is Dr. Gordon. They have both been wonderful. Dr. John Handy in Portland will be performing my father's surgery on June 9th.
    My father just had his last radiation treatment yesterday and now will have five weeks to regain his strength and hopefully gain some weight. Unfortunately, he had to have a J tube placed last week because it became excrutiating to swallow and he was losing too much weight.
    I hope your father is doing well and is in good spirits.
    Sincerely,
    Kathryn

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