my dad advice please ** updated**

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chrissiebass
chrissiebass Member Posts: 56
edited April 2011 in Esophageal Cancer #1
my dad was diagnosed 2 weeks ago with stage 4. He is given months to a yr at the most. This is so devestating to our family, if anyone can give me any advice on what to expect or anyone beat this ugly thing at a stage 4?? He is past the options of surgery and radiation, but they started him on chemo this a.m. at 10:00 in LaCrosse Wi. He did go to Rochester for a 2nd opinion, but was told the same results. Sorry if this sounds so jumbled right now, I am still in shock.

thanks for anyone's help, I appreciate it!

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  • DanaMB3
    DanaMB3 Member Posts: 98
    #2
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    Sorry to hear your dad's diagnosis
    I found this site this past December myself when my dad was diagnosed. Coincidentally, we are heading to Rochester on Sunday with my dad. (We live in Chicago). It is shocking news. While it doesn't make it easier, it is comforting to hear from others dealing with the same disease. I have not been around here long enough to give any valid advice, but you will hear from others who will have lots of wonderful information to share. From what I have seen, there are many who go past the "average" life expectancy, even with stage 4.
    Your family is in my thoughts.
  • ecourtney
    ecourtney Member Posts: 39
    #3
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    Your Dad
    Hi Chrissie
    I agree this is devastating news which nothing can prepare you for. My brother has stage 4 and has been told much the same as your dad we are further along our journey though and since you asked what to expect you might find our experiences useful. You can see these on my posting just below you on this page and his history is also on my members page.This is not text book solutions but rather experiences which might help you to consider what choices there might be . Perhaps of greater value to you is the contacts who you will see very kindy responded to me.I'm sure you will quickly find they will be offering their support.
    If after reading my postings I can answer any questions I would be happy to do so.
    Stay positive!
    Kind regards
    Ecourtney
    Scotland UK
  • ecourtney
    ecourtney Member Posts: 39
    #4
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    Your Dad
    Hi Chrissie
    I agree this is devastating news which nothing can prepare you for. My brother has stage 4 and has been told much the same as your dad we are further along our journey though and since you asked what to expect you might find our experiences useful. You can see these on my posting just below you on this page and his history is also on my members page.This is not text book solutions but rather experiences which might help you to consider what choices there might be . Perhaps of greater value to you is the contacts who you will see very kindy responded to me.I'm sure you will quickly find they will be offering their support.
    If after reading my postings I can answer any questions I would be happy to do so.
    Stay positive!
    Kind regards
    Ecourtney
    Scotland UK
  • Unknown
    Unknown
    #5
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    This comment has been removed by the Moderator
  • sal314
    sal314 Member Posts: 599 Member
    #6
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    Hi Chrissie
    So sorry to hear about your dad's diagnosis. You have every reason sound and be "jumbled" after such news. I remember feeling the same way when our family found out about my father's diagnosis.

    My father was diagnosed with stage 4 last March. The 13th to be exact. They (doctors) gave him about a year. He passed away on Feb. 16th. So...just shy of a year. Though it was a grim prognosis, my dad was determined to live out the rest of his days like any other. He did go through chemo and radiation to help slow down the growth of the cancer. He had several complications here and there, but continued to work and play golf and travel all of last summer and fall. He really did live a "normal" life up until mid Jan. He started to get weaker and then his liver started failing. Things went down very quickly after that.

    Given the terrible things you've probably read or will read, just know not everyone has a horrific decline. My father never had any trouble eating or swallowing. My dad had about 3 bad days towards the end, but was not in pain. Everyone's journey is different.

    I wish I could be more encouraging, but the truth is...his disease is not curable at this stage. So...my advice?... make every moment count when you're with him. Spend as much time as you can with him and make a conscious effort for yourself not to have any unsaid words or undone deeds. Simply put...NO REGRETS!

    Feel free to PM anytime if you want to talk. I know the journey will be hard, but it will also be filled with blessings along the way. Sometimes it's just hard to see them.

    The people on this site are AMAZING. There is much love and encouragement to be found here. Not to mention a boatload of information about EC. That being said, there is also gut wrenching truth and honesty. People will not sugar coat things or tell you things just because you want to hear them. I so appreciate that about this site!

    Blessings,
    Sally
  • Prismpunk
    Prismpunk Member Posts: 25
    #7
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    sal314 said:

    Hi Chrissie
    So sorry to hear about your dad's diagnosis. You have every reason sound and be "jumbled" after such news. I remember feeling the same way when our family found out about my father's diagnosis.

    My father was diagnosed with stage 4 last March. The 13th to be exact. They (doctors) gave him about a year. He passed away on Feb. 16th. So...just shy of a year. Though it was a grim prognosis, my dad was determined to live out the rest of his days like any other. He did go through chemo and radiation to help slow down the growth of the cancer. He had several complications here and there, but continued to work and play golf and travel all of last summer and fall. He really did live a "normal" life up until mid Jan. He started to get weaker and then his liver started failing. Things went down very quickly after that.

    Given the terrible things you've probably read or will read, just know not everyone has a horrific decline. My father never had any trouble eating or swallowing. My dad had about 3 bad days towards the end, but was not in pain. Everyone's journey is different.

    I wish I could be more encouraging, but the truth is...his disease is not curable at this stage. So...my advice?... make every moment count when you're with him. Spend as much time as you can with him and make a conscious effort for yourself not to have any unsaid words or undone deeds. Simply put...NO REGRETS!

    Feel free to PM anytime if you want to talk. I know the journey will be hard, but it will also be filled with blessings along the way. Sometimes it's just hard to see them.

    The people on this site are AMAZING. There is much love and encouragement to be found here. Not to mention a boatload of information about EC. That being said, there is also gut wrenching truth and honesty. People will not sugar coat things or tell you things just because you want to hear them. I so appreciate that about this site!

    Blessings,
    Sally

    My Dad lived 8 months as a
    My Dad lived 8 months as a Stage 4. Not to sound too harsh, but you should be realistic. The prospects are grim with Stage 4 Esophageal Cancer patients.
  • cher76
    cher76 Member Posts: 292
    #8
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    Stage IV as well
    Chrissie,
    My husband aged 54, was diagnosed with EC stage VI in early October 2010. At the time he weighed 260 lbs and seemed to be in good health except for having some symptoms he thought was an ulcer developing.The cancer was found throughout his esophagus, in lymph nodes and with mets to the bones. He has been receiving treatment at MD Anderson Houston as well as in our hometown. As he told someone yesterday, the doctor here at home is treating him, while the one at MDA is treating the cancer. He is not a candidate for surgery nor radiation, and has been on 2 different rounds of chemo as well as a clinical trial ( where we believe he received the placebo). He is fighting this hard and presently holding his own, however he is down to 150 lbs. I wish I had found this sight sooner as I may have asked the doctor more questions than we did at the time he was diagnosed. Just like you we were in shell shock and knew nothing about this disease. We never insisted on a Jtube when the doctor at MDA said we didn't need one yet, thus the tremendous weight loss. We are working on addressing that now. We have had good days and bad and have learned how important it is to manage his hydration as well as his pain. He feels when he keeps active and gets out and about that he feels better overall. Today he worked in the yard planting shrubs! I have seen how this disease has not only affected my husband physically but the stress of it all has taken a toll on our whole family as well. It especially breaks my heart for our children and grandchildren. Keep strong but take care of yourself as well. Learn everything you can, ask questions, and be an advocate for your dad. If you would like to email me to "compare notes" please feel free to do so. I will keep you and your family in my prayers.
    Cheryl
  • chrissiebass
    chrissiebass Member Posts: 56
    #9
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    cher76 said:

    Stage IV as well
    Chrissie,
    My husband aged 54, was diagnosed with EC stage VI in early October 2010. At the time he weighed 260 lbs and seemed to be in good health except for having some symptoms he thought was an ulcer developing.The cancer was found throughout his esophagus, in lymph nodes and with mets to the bones. He has been receiving treatment at MD Anderson Houston as well as in our hometown. As he told someone yesterday, the doctor here at home is treating him, while the one at MDA is treating the cancer. He is not a candidate for surgery nor radiation, and has been on 2 different rounds of chemo as well as a clinical trial ( where we believe he received the placebo). He is fighting this hard and presently holding his own, however he is down to 150 lbs. I wish I had found this sight sooner as I may have asked the doctor more questions than we did at the time he was diagnosed. Just like you we were in shell shock and knew nothing about this disease. We never insisted on a Jtube when the doctor at MDA said we didn't need one yet, thus the tremendous weight loss. We are working on addressing that now. We have had good days and bad and have learned how important it is to manage his hydration as well as his pain. He feels when he keeps active and gets out and about that he feels better overall. Today he worked in the yard planting shrubs! I have seen how this disease has not only affected my husband physically but the stress of it all has taken a toll on our whole family as well. It especially breaks my heart for our children and grandchildren. Keep strong but take care of yourself as well. Learn everything you can, ask questions, and be an advocate for your dad. If you would like to email me to "compare notes" please feel free to do so. I will keep you and your family in my prayers.
    Cheryl

    thank you
    thanks to all for your kind words.I do not remember what Chemo he is on, do not have it with me, but will get the name. Yesterday he went in to have a port put in under his right shoulder and then had his first round of chemo. He will have chemo every 2 weeks. There are currently NO clinical trials around here for him. The cancer started at the bottom of his esophagous and the top of his stomache. I do know it is also affecting his liver and lymph nodes. I am getting a copy of the Dr.'s notes and my mom's notes from yesterday (I am keeping a file) He is having problems eating, he is usually just eating soup or Fish, then drinking lots of supplimental drinks. As of now he has not lost any weight, and his blood count has remained good. I am taking any good news I can. He just celebrated his 66th birthday on April 5th. Again, thanks for all of you to respond to me, it is nice to have others who can understand what I am feeling and be there for support, so glad I found this site. I have been doing a lot of research, and all I can say is it makes me physically sick some of the things I read, but I know how important it is to be prepared to help my dad on this increadibly hard journey.

    UPDATE: his chemo meds are: Oxaliplatin-eloxatin, Leucovorin, 5-Flurouracil
  • Curts gal
    Curts gal Member Posts: 10
    #10
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    chrissiebass said:

    thank you
    thanks to all for your kind words.I do not remember what Chemo he is on, do not have it with me, but will get the name. Yesterday he went in to have a port put in under his right shoulder and then had his first round of chemo. He will have chemo every 2 weeks. There are currently NO clinical trials around here for him. The cancer started at the bottom of his esophagous and the top of his stomache. I do know it is also affecting his liver and lymph nodes. I am getting a copy of the Dr.'s notes and my mom's notes from yesterday (I am keeping a file) He is having problems eating, he is usually just eating soup or Fish, then drinking lots of supplimental drinks. As of now he has not lost any weight, and his blood count has remained good. I am taking any good news I can. He just celebrated his 66th birthday on April 5th. Again, thanks for all of you to respond to me, it is nice to have others who can understand what I am feeling and be there for support, so glad I found this site. I have been doing a lot of research, and all I can say is it makes me physically sick some of the things I read, but I know how important it is to be prepared to help my dad on this increadibly hard journey.

    UPDATE: his chemo meds are: Oxaliplatin-eloxatin, Leucovorin, 5-Flurouracil

    More Info
    My husband has stage 3 EC and into the top of his stomach and lymph nodes. We had a stint put in because his tumor had cut off any supply to his stomach. He has gone from 250 lbs to 185. He has much pain and has lost his hair. He was diagnosed mid March and has had only one round of chemo and as I am speaking to you we are in the hospital. His blood count went down to 500, had a fever of 101. He has had two blood transfusions and now his blood count is up to 750 and looks very well. I am hoping to go home maybe sat. Keep your Dad's spirit up and take care of all his wants and needs. I found this to help. Tell your Momma to find an outlet such as gardening etc... that helps as well. As a cargiver we forget about ourselves.

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