Chemoembolization did not work- What the f%ck is this?

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kluong
kluong Member Posts: 23
in Colorectal Cancer #1
I read this board everyday but rarely post because I have two boys (age 8 and 8 mos)to keep me busy. However, I come here today because I am at the bottom as we say: Here is a short recap of our story:

Hubby dx in Nov 2009
Surgery in Dec 2009 to remove 9 inch of colon with colostomy
2010 spent half the time in hospital
July 2010 cancer mets to liver and bone

In Feb 2011, we were not a candidate for liver surgery because of multiple lesions. Therefore, we did chemoembolization. Today, we got the pet scan results. Not only did the lesions not disappear but it got bigger and there are more lesions now then prior to the treatment. Is this some sick joke?

Furthermore, since January of this year, we have been concentrating on treating the liver that the disease has progress to the bones. In fact, there is not a day that hubby is not in pain due to the tumor. We are currently in the hospital for chemo: Erbitux, Irinotecan, leuco, and 5 FU.

Sorry for the rants but this was the first place I thought of when we received this devasting news. There are some much knowledge and support here that I know someone has some wisdom that can help us through this time.

My family has stated that they want to be emotional detached from this whole experience. OK. Meanwhile, his family is too busy making money, or dealing with their own dramas that we would just get in the way of their lives. Therefore, it is just us and our boys. We are young (he is 41 and I am 37) but have accepted this disease into our lives. However, how many more heartache and setbacks can one person take?

Kim

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  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #2
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    Kim
    I am so sorry that the news has been this bad, and that your family is being so selfish.

    The American Cancer Society has programs that may assist you, including programs for caregivers.

    Here is the website to start the search:

    http://www.cancer.org/Treatment/SupportProgramsServices/

    The search function works by zip code, so hopefully there will be services in your area.
  • ngxbao
    ngxbao Member Posts: 4
    #3
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    Buckwirth said:

    Kim
    I am so sorry that the news has been this bad, and that your family is being so selfish.

    The American Cancer Society has programs that may assist you, including programs for caregivers.

    Here is the website to start the search:

    http://www.cancer.org/Treatment/SupportProgramsServices/

    The search function works by zip code, so hopefully there will be services in your area.

    Kim
    I am sorry that you have to go through such a hard time.

    This is my first post as well. However, I am not new to cancer. Was diagnosed 3 years ago at the age of 33 which makes me about your age. Life sometimes throws curve balls at us.

    You being the caregiver must be very stressful as well. Take care and I pray that some consolations come your way.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #4
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    Sorry
    I am sorry you + your husband are dealing with so much. I am really sorry your families aren't helping you. I hope you can get help from somewhere - friends, American Cancer Society etc.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #5
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    That's awful
    I'm so very, very sorry. You are having such a rough situation to deal with.

    *hugs*
    Gail
  • gerryo
    gerryo Member Posts: 50
    #6
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    I am also a caregiver for my
    I am also a caregiver for my husband. I do not post much on the board but after reading your post I must tell you it broke my heart. I wish I had the answers to make your life better, but I don't. If you would like maybe we could just be buddies and help one another. If you would like I will send you my email address and phone number. Like I said I don't have the answers, but talking may help both of us stay strong.

    Gerry
  • luvmylife
    luvmylife Member Posts: 76
    #7
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    gerryo said:

    I am also a caregiver for my
    I am also a caregiver for my husband. I do not post much on the board but after reading your post I must tell you it broke my heart. I wish I had the answers to make your life better, but I don't. If you would like maybe we could just be buddies and help one another. If you would like I will send you my email address and phone number. Like I said I don't have the answers, but talking may help both of us stay strong.

    Gerry

    We All Need Support
    I feel the same way. As a caregiver to my husband, Jimmy, I would like to be more in touch with the other caregivers on the board. Hopefully, we can hold each other up while we are fighting this dreadful battle.

    Jan
  • kluong
    kluong Member Posts: 23
    #8
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    gerryo said:

    I am also a caregiver for my
    I am also a caregiver for my husband. I do not post much on the board but after reading your post I must tell you it broke my heart. I wish I had the answers to make your life better, but I don't. If you would like maybe we could just be buddies and help one another. If you would like I will send you my email address and phone number. Like I said I don't have the answers, but talking may help both of us stay strong.

    Gerry

    Thank you so much
    To Gerry, MaryAnn, Buck, and everyone that posted. Your response overwhelmed me. You know I will be ok but it is my children that is the real victim here.

    I have not reached out to anyone since his dx 2009 because I just don't think anyone that does not have cancer or a caregiver can really add value to what we are going through. In fact, it has been my experience that some people (family) can make it worse because they don't understand the magnitude of this disease.

    You always have so much hope when a new treatment start and then it dashes away. I guess what god gives god can take.

    Again, thanks for your support. Please email me and I will email back.

    Kim
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #9
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    Kim
    Kim,
    I am so sorry your young family is having such a hard time battling this disease. Doing it alone must be very hard. Please do come here for support. We are here for you. My heart hurts for you. Please see if someone at the hospital or American Cancer Society can offer you some support.
    Saying a prayer for your family.

    Aloha,
    Kathleen
  • luvmylife
    luvmylife Member Posts: 76
    #10
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    kluong said:

    Thank you so much
    To Gerry, MaryAnn, Buck, and everyone that posted. Your response overwhelmed me. You know I will be ok but it is my children that is the real victim here.

    I have not reached out to anyone since his dx 2009 because I just don't think anyone that does not have cancer or a caregiver can really add value to what we are going through. In fact, it has been my experience that some people (family) can make it worse because they don't understand the magnitude of this disease.

    You always have so much hope when a new treatment start and then it dashes away. I guess what god gives god can take.

    Again, thanks for your support. Please email me and I will email back.

    Kim

    Kim,
    Only those that are
    Kim,
    Only those that are going through this themselves know how hard it is. You're right, it is very hard on our children. It is so hard to know what to tell them and what to hold back, and stay brave and smile on the outside while your heart is breaking on the inside. I have three boys (25,22,and 17) who are very close to their dad. The older two don't talk about it too much and I thought my youngest was handling it pretty well until I got a call from the school last week and they suggested I take him to a conselor. He is now on zoloft for depression. This is such a hard time for him, he graduates in June and got accepted to RIT but because Jimmy's not working we can't afford to send him right now. So everything seems to be going wrong for the poor kid, but I know in my heart things will improve for him. I just can't imagine going through something like this at 17 yrs old.

    I have lost close friends to this disease and although I was supportive to their family, I had no idea the magnitude of their struggle until now. I didn't take life for granted, in fact, I thanked God every day for what I had (and still do). I am glad I have my faith, it has given me strength but it is good to talk to people who are going through similar circumstances.

    You and your family are in my prayers, (If God took us to it, He'll get us through it!)

    Jan
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #11
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    Kim
    Kim,

    I am so sorry that you and your husband and your children are dealing with this. I have young children, as well, and they are really my only concern through all of this. I would advise, you, however, to reconsider allowing others into your lives to help you in this experience. Before I was diagnosed I knew a mom at the school my children went to. She had children of similar age but we never got to know one another or became friendly in any way. A bit after I was diagnosed, I confided in her what I was facing. Since then we have become very close friends, spending much of our free time together with our younger children. I know that if I pass away before my two girls are older that my friend will help look after them and be a mom-figure to them. If you had told me a three years ago how close she would become to me and what a help she would be to me, I never would have believed it. Maybe there are some people you know only a little bit that would step forward with empathy and concern and help you so that you can better help your husband.

    Additionally, have you researched an HAI pump as a treatment option for decreasing liver mets?

    All the best to you,
    Amy

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