New to the board! A question

DaddyzGirl
DaddyzGirl Member Posts: 1
edited March 2014 in Esophageal Cancer #1
Hi everybody.

I feel a kinship with all of you and I hate knowing that everyone on this board is fighting this same awful disease. I've been a "lurker" on this board since my dad's diagnosis in May of '09, and am now finally joining.

Background: My dad had persistent and unusual hearburn for a few months and when they decided to do a scope, they found the cancer. A CT scan showed mets to the liver. A liver biopsy confirmed this. They went to Mayo Clinic where he was basically told to get his affairs in order and prepare to die. I believe his is a Stage IVA EC. As an alternative, they went to CTCA because of their willingness to try anything and everything and their positive attitude. They have loved CTCA and my father has done a number of chemo regimens (including Taxotere and I cannot recall the others). With each med, the cancer markers would decrease for a month or two, then start climbing again. As of his last appointment, his oncologist told him that they'd run out of options. So now he is on an oral chemo med (xeloda -sp?) basically to see if it helps any, but it sounds like it's mainly to give him as much time as possible.

Dad is a fighter and has bravely endured side effects that, to the outside eye, seemed worse than death itself. He would like to continue the fight, but with what? With who? Do any of you have any suggestions? Do any of you know any research trials that have been found to be effective? For the moment, dad is feeling great (now that he's been off of intravenous chemo for 2 weeks). His main complaint is that his back is a bit sore near where his kidney is. My dad is 60 and is extremely fit and active with no other known health issues. In fact, he's the kind of guy who has always lived a clean lifestyle and almost never gets as much as a cold. I'm sure many of you can relate!

Thanks for your help and suggestions!

Comments

  • unclaw2002
    unclaw2002 Member Posts: 599
    #2
    Hi, I am also a daughter ---
    Hi, I am also a daughter --- I am sure you know there are many of us on this site. I really don't know what to say, perhaps some others on this site who have battled Stage IV can chime in. It is a difficult thing to hear the doctors say they can't do anything else, especially when the patient doesn't want to give up. Did they give him any pallative options that could extend his life if a cure isn't an option - with some quality of life that I am sure your dad would want.

    Please don't hesistate to ask many here have walked in your shoes and are there to help.

    God bless you,
    Cindy
  • unclaw2002
    unclaw2002 Member Posts: 599
    #3
    Hi, I am also a daughter ---
    Hi, I am also a daughter --- I am sure you know there are many of us on this site. I really don't know what to say, perhaps some others on this site who have battled Stage IV can chime in. It is a difficult thing to hear the doctors say they can't do anything else, especially when the patient doesn't want to give up. Did they give him any pallative options that could extend his life if a cure isn't an option - with some quality of life that I am sure your dad would want.

    Please don't hesistate to ask many here have walked in your shoes and are there to help.

    God bless you,
    Cindy
  • unclaw2002
    unclaw2002 Member Posts: 599
    #4
    Hi, I am also a daughter ---
    Hi, I am also a daughter --- I am sure you know there are many of us on this site. I really don't know what to say, perhaps some others on this site who have battled Stage IV can chime in. It is a difficult thing to hear the doctors say they can't do anything else, especially when the patient doesn't want to give up. Did they give him any pallative options that could extend his life if a cure isn't an option - with some quality of life that I am sure your dad would want.

    Please don't hesistate to ask many here have walked in your shoes and are there to help.

    God bless you,
    Cindy
  • Unknown
    Unknown
    #5
    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    Your Dad
    Hi Daddyzgirl,
    I too am a daddy's girl. I recently lost my dad who passed away on 3/9/10. He put up a good fight right up to the end. He beat esophageal cancer with radiation and xeloda chemo. He did great for one year. In December 09, he got mets to his liver. He went down hill from there. We tried the xeloda again, this time it did not work as well. It works differently for each person. It is a plus that your dad is a fighter and in great shape.
    I say, "Go For It"! You will never know if you do not try. Best of luck to all of you. I will be thinking and praying for you. And....welcome to our csn family!
    Tina
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #7
    don't give up
    DaddyzGirl,
    One year ago (tomorrow) my husband was dx with stage iv EC. Not a surgical candidate and radiation was not an option. Chemo was our only weapon. If we chose to do nothing, the dr gave him 2 - 3 months. We chose to fight......started chemo right away. Dr said he was giving him the kitchen sink. Cicplatin, Taxotere and then 120 continuous hours of 5-FU. The dr wanted him to have 6 rounds. Charlie was admitted to the hospital for each round. It was not easy, but Charlie got through the first 2 rounds. That was last April and May. In May they did another PET scan to see how how things were going and he was in remission. Dr decided to do 2 more rounds of chemo. That was in June and July. In Aug we started oral chemo....Xeloda. He takes 1500mg twice a day. On for 2 weeks, off for 1 week. In Oct the dr dr started him on Herceptin...his tumor was HER-2 positive. Had another PET in Sept....things were the same..good. In Jan he had another PET.....this was even better than the last one. God is good! So here we sit, one year later and we are looking at things very differently. We know this can come back at any time.....but we have been given this time and we continue to take it one day at a time. Is Charlie back to his old self?? No....neither one of us will every be the same. Cancer does that to you. The meds make him extremely tired.....but he can deal with that. At times it is very frustrating....but all we have to do is think back to one year ago and we realize how blessed we are. So don't give up....do your research....we are also blessed to have a dr that agreed from the start to try anything, as long as Charlie was willing, to help us get more time......this is where the quantity vs quality comes in. If Charlie wasn't having some quality of life, I don't think the dr would be as agressive. We are also so lucky that Charlie responded as well as he has. Not everyone does. We read too often on this site of those that don't respond at all.
    I wish you luck.....and I will pray for you and your family. Keep us posted.
    Jane
  • Pghmomma
    Pghmomma Member Posts: 141
    #8
    JaneE2366 said:

    don't give up
    DaddyzGirl,
    One year ago (tomorrow) my husband was dx with stage iv EC. Not a surgical candidate and radiation was not an option. Chemo was our only weapon. If we chose to do nothing, the dr gave him 2 - 3 months. We chose to fight......started chemo right away. Dr said he was giving him the kitchen sink. Cicplatin, Taxotere and then 120 continuous hours of 5-FU. The dr wanted him to have 6 rounds. Charlie was admitted to the hospital for each round. It was not easy, but Charlie got through the first 2 rounds. That was last April and May. In May they did another PET scan to see how how things were going and he was in remission. Dr decided to do 2 more rounds of chemo. That was in June and July. In Aug we started oral chemo....Xeloda. He takes 1500mg twice a day. On for 2 weeks, off for 1 week. In Oct the dr dr started him on Herceptin...his tumor was HER-2 positive. Had another PET in Sept....things were the same..good. In Jan he had another PET.....this was even better than the last one. God is good! So here we sit, one year later and we are looking at things very differently. We know this can come back at any time.....but we have been given this time and we continue to take it one day at a time. Is Charlie back to his old self?? No....neither one of us will every be the same. Cancer does that to you. The meds make him extremely tired.....but he can deal with that. At times it is very frustrating....but all we have to do is think back to one year ago and we realize how blessed we are. So don't give up....do your research....we are also blessed to have a dr that agreed from the start to try anything, as long as Charlie was willing, to help us get more time......this is where the quantity vs quality comes in. If Charlie wasn't having some quality of life, I don't think the dr would be as agressive. We are also so lucky that Charlie responded as well as he has. Not everyone does. We read too often on this site of those that don't respond at all.
    I wish you luck.....and I will pray for you and your family. Keep us posted.
    Jane

    Hope!
    Hello,
    I am also a daddy's girl. I can relate to alot of the stuff you written. My dad is the same way, but he was staged at a 3. He is a fighter too. That is a great thing. We had 3 treatments so far, a ct scan coming up. It was tough for him thou. He is also on the xeloda 2 pills twice daily. He does well with them.

    Dont give up hope and I will keep you and your dad in my prayers.

    God bless
    Tina
  • Ellie_E
    Ellie_E Member Posts: 50
    #9
    Also Stage IVb
    Hi, my husband Jim, also has Stage IVb EC with mets to the liver and numerous lymph nodes in neck, chest, and stomach. He is getting palliative treatment with the emphasis on quality of life. When the dr. told us there is no cure, we were devastated and thought that was it. But yesterday he passed the 6 month mark and he is feeling good and just went back to work last week. He was first on EOX (epirubicin, oxalyplatin, and xeloda). His tumor markers went down dramatically. After the third treatment, the markers started going up again. He is now on cisplatin and irenotecan. This disease is such a roller coaster! Palliative treatment can prolong life for how long we don't know, but if it gives us one more day together, he feels it is worth it. Our prayers are with you and your family. May God give you all the strength that you need. We always remember what the dr. said that first day to us. She said "Don't give up. I see miracles every day."

    Ellie

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