is this the end?

2»

Comments

  • vinny3
    vinny3 Member Posts: 928 Member
    #22
    midnte0708 said:

    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
    #23
    dianetavegia said:

    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
    #24
    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 Member
    #25
    midnte0708 said:

    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 Member
    #26
    midnte0708 said:

    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
    #27
    dianetavegia said:

    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 Member
    #28
    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
    #29
    midnte0708 said:

    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
    #30
    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
    #31
    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.
  • msccolon
    msccolon Member Posts: 1,917 Member
    #32
    totally off topic
    Every time I see this thread topic I think of the Jesus Christ Superstar "... the end. This is my blood you drink, this is my body you eat..."
    mary
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #33
    Erbitux and Irinotecan
    Hi Sue: I don't think you mentioned whether your dad had tried Erbitux and Irinotecan. If one is KRAS Wild Type (which the hospital can check for you), Erbitux can work synergistically with Irinotecan (even though your dad is already refractory to it) and I have seen some pretty amazing results. And I would definitely get a second opinion. My prayers are with you and your dad. Monica
  • snommintj
    snommintj Member Posts: 601
    #34
    Monicaemilia said:

    Erbitux and Irinotecan
    Hi Sue: I don't think you mentioned whether your dad had tried Erbitux and Irinotecan. If one is KRAS Wild Type (which the hospital can check for you), Erbitux can work synergistically with Irinotecan (even though your dad is already refractory to it) and I have seen some pretty amazing results. And I would definitely get a second opinion. My prayers are with you and your dad. Monica

    Try Wake Forest
    When I seemed to run out of options I sent all of my info to wake forest university, I forget the name of who I sent it to but if you call they will tell you who to send it to. According to the first few Drs I spoke with my situation was pretty bleak, noone gave me a chance little less a plan of action. I overnighted the information to WFU hospital. Within 48 hrs, half a dozen Drs had called and informed me of possible treatment options. I took that info to Drs in my area until I found Drs that were up to date with the most current treatments. Get those tumors ablated, cyberknifed, resected, therosphered, or what ever else is available.

    To help strengthen the liver, try milk thistle, juice 6-8 fresh lemons(everyday), and resveratrol(500+mg per day,get at walgreens). This combo along with daily 400mg vit-d boosted my liver into overdrive. I had as little as 25% of my liver at one time, I credit the above for helping me through.
  • hoagiemom
    hoagiemom Member Posts: 87 Member
    #35
    snommintj said:

    Try Wake Forest
    When I seemed to run out of options I sent all of my info to wake forest university, I forget the name of who I sent it to but if you call they will tell you who to send it to. According to the first few Drs I spoke with my situation was pretty bleak, noone gave me a chance little less a plan of action. I overnighted the information to WFU hospital. Within 48 hrs, half a dozen Drs had called and informed me of possible treatment options. I took that info to Drs in my area until I found Drs that were up to date with the most current treatments. Get those tumors ablated, cyberknifed, resected, therosphered, or what ever else is available.

    To help strengthen the liver, try milk thistle, juice 6-8 fresh lemons(everyday), and resveratrol(500+mg per day,get at walgreens). This combo along with daily 400mg vit-d boosted my liver into overdrive. I had as little as 25% of my liver at one time, I credit the above for helping me through.

    Roswell
    Hi Sue, I'm sending you my prayers for your father. I go to Roswell and love it there. Who is his Dr? I'm stage III so I don't know too much about the regime he is on but I just wanted to let you know that Roswell has been wonderful for me and I hope they can help you. Keeping you in my prayers.Michelle
  • midnte0708
    midnte0708 Member Posts: 166
    #36
    hoagiemom said:

    Roswell
    Hi Sue, I'm sending you my prayers for your father. I go to Roswell and love it there. Who is his Dr? I'm stage III so I don't know too much about the regime he is on but I just wanted to let you know that Roswell has been wonderful for me and I hope they can help you. Keeping you in my prayers.Michelle

    Thanks,
    Hi MIchelle,

    My Dad's appointment is with Dr Marwan Fakih. Not sure if you are familiar with him . He has been highly recommended to us.
    I'm glad you are happy with their care.
    Sue
  • midnte0708
    midnte0708 Member Posts: 166
    #37
    snommintj said:

    Try Wake Forest
    When I seemed to run out of options I sent all of my info to wake forest university, I forget the name of who I sent it to but if you call they will tell you who to send it to. According to the first few Drs I spoke with my situation was pretty bleak, noone gave me a chance little less a plan of action. I overnighted the information to WFU hospital. Within 48 hrs, half a dozen Drs had called and informed me of possible treatment options. I took that info to Drs in my area until I found Drs that were up to date with the most current treatments. Get those tumors ablated, cyberknifed, resected, therosphered, or what ever else is available.

    To help strengthen the liver, try milk thistle, juice 6-8 fresh lemons(everyday), and resveratrol(500+mg per day,get at walgreens). This combo along with daily 400mg vit-d boosted my liver into overdrive. I had as little as 25% of my liver at one time, I credit the above for helping me through.

    Thanks
    I will try this and see if I can get my dad to take it. Thanks, I was just wondering if there was anything I could give him to help his liver function better. I hope it is not too late for him. I can't believe you got such fast action from WFU. It seems like I've been jumping through hoops for the past week and still playing the waiting game.

    Sue
  • choihe
    choihe Member Posts: 9
    #38
    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

    Stop Chemo at 8th (9th)???
    My husband is currently going through 8th Chemo (8th out of 12). I’m really concerned if his body can manage to complete 4 more treatments. He looks really weak today. He can't eat anything at all. My son is saying that he should stop Chemo, but I’m not sure what is a right thing for my husband to do at this point.

    He wants to still go on treatment as far as he can, but I wonder, I should advise him stop Chemo if his health deteriorates further. What possible outcome would be if he does not complete all the recommended 12 treatments (may be stop at 9th or 10th)?

    I would like your inputs and advices.

    Amy
  • midnte0708
    midnte0708 Member Posts: 166
    #39
    choihe said:

    Stop Chemo at 8th (9th)???
    My husband is currently going through 8th Chemo (8th out of 12). I’m really concerned if his body can manage to complete 4 more treatments. He looks really weak today. He can't eat anything at all. My son is saying that he should stop Chemo, but I’m not sure what is a right thing for my husband to do at this point.

    He wants to still go on treatment as far as he can, but I wonder, I should advise him stop Chemo if his health deteriorates further. What possible outcome would be if he does not complete all the recommended 12 treatments (may be stop at 9th or 10th)?

    I would like your inputs and advices.

    Amy

    Amy
    Amy,

    There were days my father couldn't get out of bed and did not eat often. I don't know what kind of chemo your husband is on but it really takes a lot out you. My father was also able to work full time with chemo, he had bad and good days of course.
    Considering stopping chemo is a discussion that needs to be made with doctors.

    Also, if you start a new topic and post more specific details about your husbands condition you are likely to find lots of input and more advice than you can imagine.

    They may not see your message here in this tread.

    Sue

Discussion Boards