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is this the end?

midnte0708
midnte0708 Member Posts: 166
edited March 2014 in Colorectal Cancer #1
My dad (66) has been on chemo for 3.5 years non stop since being diagnosed with stage 4 colon cancer with inoperable many many mets to liver.

Great results with FOLFIRI + Avastin for 3 years...liver tumors stable entire time with some shrinkage but recently developed new lung mets(very small) in Oct 08.

So then doctor switched to FOLFOX (no avastin) for the last 6 months. Last week scan has showed tumors in liver growing, doc sent him home and told him there are no more chemos to try and gave him pill form of F5U and told him he had 8-12 weeks to live.
Also, said maybe the pill F5U would trick the cancer "you never know" he said.

I am currently trying to get him a second opinion at Roswell but wonder how the liver tumors could have grown so fast (he gets ct scans every 3 months).
I am not a doctor but I wonder if a liver abscess could show as a tumor growing??? maybe I am wishful thinking and surely the doctor would have covered every base before telling him to get his affairs in order.

any thoughts will be appreciated. I'm still in shock, denial, etc.... The doctor did give him 1 year to live in November 2005 so he has already beat that by a lot but I still can't believe this unfolded so suddenly when he has been stable so long.
Did anyone ever have good luck with taking pill F5U only?? this seems to me like a longshot



Thanks
Sue
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Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942
    Praying for your family
    Sue, this is all new to me so I have no answers, but I'm going to pray for your father and family right now.

    God keep you safe,
    Diane
  • msccolon
    msccolon Member Posts: 1,917
    be strong
    I am so sorry to hear your father is having such a hard time with this beast. I would say DEFINITELY get a second opinion; third and 4th if you have to! Go to a large cancer center that sees your father's disease many times a day! This is assuming your father WANTS to continue the fight! Your medical oncologist sees chemotherapy as the only option and it definitely isn't. Your father is lucky to have you advocating for him, Sue. When we are so sick it is sometimes too hard for us to do what's necessary; that's when our loved ones become so important. They can pick up the stick and continue the relay.
    mary
  • midnte0708
    midnte0708 Member Posts: 166

    Praying for your family
    Sue, this is all new to me so I have no answers, but I'm going to pray for your father and family right now.

    God keep you safe,
    Diane

    Thank you
    Diane,

    Thanks so much for your prayer.

    Sue
  • midnte0708
    midnte0708 Member Posts: 166
    msccolon said:

    be strong
    I am so sorry to hear your father is having such a hard time with this beast. I would say DEFINITELY get a second opinion; third and 4th if you have to! Go to a large cancer center that sees your father's disease many times a day! This is assuming your father WANTS to continue the fight! Your medical oncologist sees chemotherapy as the only option and it definitely isn't. Your father is lucky to have you advocating for him, Sue. When we are so sick it is sometimes too hard for us to do what's necessary; that's when our loved ones become so important. They can pick up the stick and continue the relay.
    mary

    Thank you
    Mary,
    Thanks for your words of encouragement. I am trying to stay strong. It's hard because I live 1000 miles away but I'm making arrangements to fly up with my 4 year old son on wednesday. I can only hope that the 2nd opinion appointment can be made quickly. I'm just afraid they may say it's too late in his weakened condition to do anything...but I'm trying to be positive.

    Sue
  • kimby
    kimby Member Posts: 797
    Prayers
    Sue,

    Your father can get a second opinion quickly. You need an NCI Comprehensive Canzer Center - here is the link: http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html but you will need to copy and paste. When I called for a second opinion (I self referred) I was in within days. Keep calling and bugging if you need to. Schedule with more than one facility now if possible. If your father wants to continue, get as many opinions as you can as quickly as you can.

    I was diagnosed stage 4 August 2007 and have had folfox, folfori and erbitux and currently on: mitomycin,avastin and xeloda. Xeloda is the pill form of 5fu and it does, often times, react differently within the body than 5fu. Is your father in liver failure? Why do they think he will decline so quickly? My liver is still not operable (surgeon was talking months for me) but I did just complete 5wks of liver radiation which I expect will extend my life considerably and will probably have various forms of ablation,embolization,more surgeries, hai pump....the list goes on. There may be other options for your father, but he needs a TEAM: medical onc, surgical onc and radiation onc. No more chemo doesn't mean no more hope. There are dozens of treatments that may be available but you need to find them!

    YMMV

    Kimby
  • midnte0708
    midnte0708 Member Posts: 166
    kimby said:

    Prayers
    Sue,

    Your father can get a second opinion quickly. You need an NCI Comprehensive Canzer Center - here is the link: http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html but you will need to copy and paste. When I called for a second opinion (I self referred) I was in within days. Keep calling and bugging if you need to. Schedule with more than one facility now if possible. If your father wants to continue, get as many opinions as you can as quickly as you can.

    I was diagnosed stage 4 August 2007 and have had folfox, folfori and erbitux and currently on: mitomycin,avastin and xeloda. Xeloda is the pill form of 5fu and it does, often times, react differently within the body than 5fu. Is your father in liver failure? Why do they think he will decline so quickly? My liver is still not operable (surgeon was talking months for me) but I did just complete 5wks of liver radiation which I expect will extend my life considerably and will probably have various forms of ablation,embolization,more surgeries, hai pump....the list goes on. There may be other options for your father, but he needs a TEAM: medical onc, surgical onc and radiation onc. No more chemo doesn't mean no more hope. There are dozens of treatments that may be available but you need to find them!

    YMMV

    Kimby

    Thank you.
    Hi Kimby,

    I don't believe he was told he was in liver failure but my mother and brother comment about the coloring of his skin and he is tired all the time. Plus when the doctor gave him 8-12 weeks I probably assume that it's beginning. He just came off a cycle of FOLFOX and I know that is wiping him out but he is more weak and exhausted than usual according to him.
    I just got off the phone and he wants to fight,,,he wants procedures..appointments etc....My new mission tomorrow is MORE APPOINTMENTS! Up until a few weeks ago he has been able to work 6 days a week full time, live a semi normal life and still gets his chemo every other week for the last 3.5 years. Even his doctor has been shocked.

    Wow, you have been through alot and have such a great attitude! I wish you the best, you sound like a real fighter!

    Thanks sooooo much for your ideas and inspiration!

    Sue
  • kimby
    kimby Member Posts: 797

    Thank you.
    Hi Kimby,

    I don't believe he was told he was in liver failure but my mother and brother comment about the coloring of his skin and he is tired all the time. Plus when the doctor gave him 8-12 weeks I probably assume that it's beginning. He just came off a cycle of FOLFOX and I know that is wiping him out but he is more weak and exhausted than usual according to him.
    I just got off the phone and he wants to fight,,,he wants procedures..appointments etc....My new mission tomorrow is MORE APPOINTMENTS! Up until a few weeks ago he has been able to work 6 days a week full time, live a semi normal life and still gets his chemo every other week for the last 3.5 years. Even his doctor has been shocked.

    Wow, you have been through alot and have such a great attitude! I wish you the best, you sound like a real fighter!

    Thanks sooooo much for your ideas and inspiration!

    Sue

    updates
    Sue,

    Please keep us up to date with your father's progress. He is so very lucky to have you on the team. Let us know if there is anything else and what we can do to help.

    Kimby
  • tootsie1
    tootsie1 Member Posts: 5,036
    Tough times
    I don't have any good answers for you, but I do want you to know that you and your dad have my prayers.

    *hugs*
    Gail
  • aluckylady
    aluckylady Member Posts: 16
    tootsie1 said:

    Tough times
    I don't have any good answers for you, but I do want you to know that you and your dad have my prayers.

    *hugs*
    Gail

    Sue,
    Wishing you and your

    Sue,
    Wishing you and your son a safe journey as you travel to be with your father.
    May you find other positive opinions and alternatives to what he has been given.
    You are a good daughter. I will be praying for you. Stay strong!!!!!
  • kmygil
    kmygil Member Posts: 876
    Prayers
    Hi Sue,

    If your father wants to continue fighting, get as many second opinions as possible, preferably at a major cancer center. You are a wonderful daughter to him. Praying for all of you...

    Kirsten
  • midnte0708
    midnte0708 Member Posts: 166
    tootsie1 said:

    Tough times
    I don't have any good answers for you, but I do want you to know that you and your dad have my prayers.

    *hugs*
    Gail

    Thanks so much Gail!

    Thanks so much Gail!
  • midnte0708
    midnte0708 Member Posts: 166

    Sue,
    Wishing you and your

    Sue,
    Wishing you and your son a safe journey as you travel to be with your father.
    May you find other positive opinions and alternatives to what he has been given.
    You are a good daughter. I will be praying for you. Stay strong!!!!!

    Thank you
    Thanks, I wish you the best also on your treatment tomorrow. Avastin did wonders for my father. I'll be praying for great results for you!
    Sue
  • midnte0708
    midnte0708 Member Posts: 166
    kmygil said:

    Prayers
    Hi Sue,

    If your father wants to continue fighting, get as many second opinions as possible, preferably at a major cancer center. You are a wonderful daughter to him. Praying for all of you...

    Kirsten

    Thank you
    Thank you Kirsten, I appreciate your prayers!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    Prayers
    My prayers are with you, your dad and family. Stay positive for him.

    Kim
  • PhillieG
    PhillieG Member Posts: 4,866
    Cetuximab (Erbitux)
    I'm sorry to hear of you Dad's situation. He did prove them wrong once, why not again. I've had good luck with the Erbitux for the past 3+ years that has helped with dealing with lung mets. I would CERTAINLY get that second opinion. I also happen to feel that it is not a good thing when doctors basically put an expiration date on us. They don't know. They were wrong the first time too. I (personally) think it's reckless on their part.
    I have not had experience with 5FU in pill form, only as a IV and it's worked well.
    I wish your Dad and you the very best Sue.
    -phil
  • midnte0708
    midnte0708 Member Posts: 166

    Prayers
    My prayers are with you, your dad and family. Stay positive for him.

    Kim

    Thanks!
    I will try, it's not easy. Thank you.
    Sue
  • vinny3
    vinny3 Member Posts: 928
    Dad
    Sue,

    Definitely get another opinion, at a major cancer center. Where do you live? It is not likely that he has a liver abcess unless he is having symptoms such as a fever too. The color change is probably due to jaundice from the liver not functioning fully. Keep being persistent. There is no guideline for the doctor to determine how long someone will live. Your dad could outlive the doctor.

    ****
  • midnte0708
    midnte0708 Member Posts: 166
    PhillieG said:

    Cetuximab (Erbitux)
    I'm sorry to hear of you Dad's situation. He did prove them wrong once, why not again. I've had good luck with the Erbitux for the past 3+ years that has helped with dealing with lung mets. I would CERTAINLY get that second opinion. I also happen to feel that it is not a good thing when doctors basically put an expiration date on us. They don't know. They were wrong the first time too. I (personally) think it's reckless on their part.
    I have not had experience with 5FU in pill form, only as a IV and it's worked well.
    I wish your Dad and you the very best Sue.
    -phil

    Thanks Phil
    I really don't know why my father was not put on another chemo to try (he has only been on two different regimes), unless it was because he is so weak now, but that could be cumulative chemo, he has a urinary track infection, and maybe a touch of a virus all at once. I'm hoping he bounces back enough to get to a 2nd opinion appointment. Right now he is not eating and sleeping all day.
    Roswell Cancer Institute has all 3 volumes of his medical history, I hope they call me soon for an appointment!
    I agree with the expiration date, I don't know why they do that it is certainly enough to make you want to give up.
    I'm glad you are doing well with the Erbitux,
    Thanks for your good wishes!
    Sue
  • midnte0708
    midnte0708 Member Posts: 166
    vinny3 said:

    Dad
    Sue,

    Definitely get another opinion, at a major cancer center. Where do you live? It is not likely that he has a liver abcess unless he is having symptoms such as a fever too. The color change is probably due to jaundice from the liver not functioning fully. Keep being persistent. There is no guideline for the doctor to determine how long someone will live. Your dad could outlive the doctor.

    ****

    Thanks
    My Dad is in Rochester. I believe the only major cancer in the vicinity is Roswell in Buffalo. I will try to be persistent! I called his oncologist office today and they told me to call back on Thurs morning to talk to the onc he has been seeing since 1993 (first discovery of colon cancer with no mets). I don't expect him to talk much due to HIPA but maybe he could recommend something.

    Sue
  • dianetavegia
    dianetavegia Member Posts: 1,942

    Thanks
    My Dad is in Rochester. I believe the only major cancer in the vicinity is Roswell in Buffalo. I will try to be persistent! I called his oncologist office today and they told me to call back on Thurs morning to talk to the onc he has been seeing since 1993 (first discovery of colon cancer with no mets). I don't expect him to talk much due to HIPA but maybe he could recommend something.

    Sue

    Confused, Sue
    Did your Dad have colon cancer in 1993 Stage 1 and then again in 2005 at Stage IV? He certainly has been a survivor so far! Almost 16 years!!

    Were there no scans on a regular basis all those years? No chemo in 1993?

    I think you're a wonderful daughter to be working so hard on finding another option for your Dad. He's a very lucky man to have you!

    As one hand reaches toward your Dad in prayer, another reaches up....

    Diane
  • vinny3
    vinny3 Member Posts: 928

    Thanks
    My Dad is in Rochester. I believe the only major cancer in the vicinity is Roswell in Buffalo. I will try to be persistent! I called his oncologist office today and they told me to call back on Thurs morning to talk to the onc he has been seeing since 1993 (first discovery of colon cancer with no mets). I don't expect him to talk much due to HIPA but maybe he could recommend something.

    Sue

    HIPPA
    Just to let you know your dad can give the doctor a release to discuss his case with you. Your dad have to put it in writing and then fax it to the doctor.

    ****
  • midnte0708
    midnte0708 Member Posts: 166

    Confused, Sue
    Did your Dad have colon cancer in 1993 Stage 1 and then again in 2005 at Stage IV? He certainly has been a survivor so far! Almost 16 years!!

    Were there no scans on a regular basis all those years? No chemo in 1993?

    I think you're a wonderful daughter to be working so hard on finding another option for your Dad. He's a very lucky man to have you!

    As one hand reaches toward your Dad in prayer, another reaches up....

    Diane

    Thank you Diane
    Yes, he had I believe stage I or maybe stage II back in 1993 (found huge tumor in colon and surgery to remove). There was follow up chemo, back then only F5U+ leucavorin. Then he got another tumor in colon in 1996, more surgery and F5U. Then 6 months check, 6 months, etc, etc....I believe he got very lax about it in the early 2000's. He was busy with work and hated to take time off work for a check probably.
    Then in 2005 after feeling weak and tired for a while I encouraged him to get checked and 40% of both liver lobes had tumors. Doc gave him a year to live on November 10, 2005. He worked full time the whole time barely missing work and would go in a half a day on saturday because he felt bad he took time off every other monday to get his chemo. Then went back to work with his chemo bag hanging off him.
    I wish I had done more sooner, reminding him of appointments or making 2nd opinions....etc...

    I'm hoping for a miracle.

    Sue
  • midnte0708
    midnte0708 Member Posts: 166
    vinny3 said:

    HIPPA
    Just to let you know your dad can give the doctor a release to discuss his case with you. Your dad have to put it in writing and then fax it to the doctor.

    ****

    Thanks ****
    I may have him do that, is there a special form? He also has a doc appoint with regular oncologist April 3rd so I hope to go with him also.

    Sue
  • vinny3
    vinny3 Member Posts: 928

    Thanks ****
    I may have him do that, is there a special form? He also has a doc appoint with regular oncologist April 3rd so I hope to go with him also.

    Sue

    Form
    Some offices have a form but he could just write that he gives permission for Dr. X to discuss his medical condition with you and add his signature.

    ****
  • dianetavegia
    dianetavegia Member Posts: 1,942

    Thank you Diane
    Yes, he had I believe stage I or maybe stage II back in 1993 (found huge tumor in colon and surgery to remove). There was follow up chemo, back then only F5U+ leucavorin. Then he got another tumor in colon in 1996, more surgery and F5U. Then 6 months check, 6 months, etc, etc....I believe he got very lax about it in the early 2000's. He was busy with work and hated to take time off work for a check probably.
    Then in 2005 after feeling weak and tired for a while I encouraged him to get checked and 40% of both liver lobes had tumors. Doc gave him a year to live on November 10, 2005. He worked full time the whole time barely missing work and would go in a half a day on saturday because he felt bad he took time off every other monday to get his chemo. Then went back to work with his chemo bag hanging off him.
    I wish I had done more sooner, reminding him of appointments or making 2nd opinions....etc...

    I'm hoping for a miracle.

    Sue

    My doctor's office
    Sue, My doc had me put down a list of names they could discuss my treatment with so I listed our four kids, hubby (of course), my mother, etc. Have your Dad fax across a note tonight, if possible!

    I filled my list out when I first went to the office. You possibly could already be on a list.

    Praying for your Dad tonight. I think 16 years shows what a fighter he is and he may just win this battle too!

    God is STILL in the miracle business!
    Diane
  • midnte0708
    midnte0708 Member Posts: 166

    My doctor's office
    Sue, My doc had me put down a list of names they could discuss my treatment with so I listed our four kids, hubby (of course), my mother, etc. Have your Dad fax across a note tonight, if possible!

    I filled my list out when I first went to the office. You possibly could already be on a list.

    Praying for your Dad tonight. I think 16 years shows what a fighter he is and he may just win this battle too!

    God is STILL in the miracle business!
    Diane

    Thanks Diane
    I really appreciate your kind words and thoughts.
  • mindy10
    mindy10 Member Posts: 182
    vinny3 said:

    Form
    Some offices have a form but he could just write that he gives permission for Dr. X to discuss his medical condition with you and add his signature.

    ****

    Hi Sue, sending prayers your
    Hi Sue, sending prayers your dads way. He is an amazing man. I remember talking to you when both you and my dad where diagnosed at stage four and my dad passed away in 18 months and here is your dad 3 years later. He is a fighter. If you need to talk feel free to email me. Mindy
  • Moses
    Moses Member Posts: 4

    Thank you Diane
    Yes, he had I believe stage I or maybe stage II back in 1993 (found huge tumor in colon and surgery to remove). There was follow up chemo, back then only F5U+ leucavorin. Then he got another tumor in colon in 1996, more surgery and F5U. Then 6 months check, 6 months, etc, etc....I believe he got very lax about it in the early 2000's. He was busy with work and hated to take time off work for a check probably.
    Then in 2005 after feeling weak and tired for a while I encouraged him to get checked and 40% of both liver lobes had tumors. Doc gave him a year to live on November 10, 2005. He worked full time the whole time barely missing work and would go in a half a day on saturday because he felt bad he took time off every other monday to get his chemo. Then went back to work with his chemo bag hanging off him.
    I wish I had done more sooner, reminding him of appointments or making 2nd opinions....etc...

    I'm hoping for a miracle.

    Sue

    Praying for your Father,you and family
    I am very sorry to hear about your dad's situation. My father is in a situation almost like your dads except my dad has just began his fight once again with colon cancer(stage IV) several months back. I will be praying for you and your father and family. Any and all things are possible, so I will be praying for your miracle. The Lord does work in mysterious ways. Take care and keep hope alive.

    Roy
  • midnte0708
    midnte0708 Member Posts: 166
    mindy10 said:

    Hi Sue, sending prayers your
    Hi Sue, sending prayers your dads way. He is an amazing man. I remember talking to you when both you and my dad where diagnosed at stage four and my dad passed away in 18 months and here is your dad 3 years later. He is a fighter. If you need to talk feel free to email me. Mindy

    Hi Mindy, I sent you an
    Hi Mindy, I sent you an email. Nice to hear from you.
  • midnte0708
    midnte0708 Member Posts: 166
    Moses said:

    Praying for your Father,you and family
    I am very sorry to hear about your dad's situation. My father is in a situation almost like your dads except my dad has just began his fight once again with colon cancer(stage IV) several months back. I will be praying for you and your father and family. Any and all things are possible, so I will be praying for your miracle. The Lord does work in mysterious ways. Take care and keep hope alive.

    Roy

    Thanks
    Thanks Roy, I will send prayers your way as well.