Need Support - Last stage of disease

samson41
samson41 Member Posts: 6
edited March 2014 in Colorectal Cancer #1
I'm looking for a support group for my husband, who is in his last stage of colon cancer. There are no more treatments for him. We live in the State of Illinois (Waukegan) and would love to chat we people who are going through the same situation as he is. As a caregiver, I need support as well. Please help. Thank you

Comments

  • Unknown
    Unknown
    #2
    I am so sorry to hear this news. Words never seem adequate and I can only imagine your fear and frustration with this awful disease. As it is, I am caregiver to my husband who was diagnosed August 2003 at stage III and every day holds some unexpected twist or turn, be it good or bad, that most definitely takes its toll.

    I wish I could lend you more support but I most sincerely wish you both the courage and the strength to keep fighting. Have you tried second opinions...even thirds? Is there maybe a clinical trial that your husband would qualify for? Many times doctors follow statistics and forget the individuality of the patients that they are treating and unfortunately, throw in the towel much sooner than necessary. While few and far inbetween, your husband wouldn't be the first to rally back quite nicely from a "no more treatments" available to still getting more years of quality life. Hang in there and keep on trying. As long as there is life, there is hope.

    Hugs,
    Monika
  • samson41
    samson41 Member Posts: 6
    #3
    unknown said:

    I am so sorry to hear this news. Words never seem adequate and I can only imagine your fear and frustration with this awful disease. As it is, I am caregiver to my husband who was diagnosed August 2003 at stage III and every day holds some unexpected twist or turn, be it good or bad, that most definitely takes its toll.

    I wish I could lend you more support but I most sincerely wish you both the courage and the strength to keep fighting. Have you tried second opinions...even thirds? Is there maybe a clinical trial that your husband would qualify for? Many times doctors follow statistics and forget the individuality of the patients that they are treating and unfortunately, throw in the towel much sooner than necessary. While few and far inbetween, your husband wouldn't be the first to rally back quite nicely from a "no more treatments" available to still getting more years of quality life. Hang in there and keep on trying. As long as there is life, there is hope.

    Hugs,
    Monika

    Monika,

    Thank you so much for replying back. It's so true that doctor forget the individuality of the patients that they are treating. In our case, that's what happened to my husband. There's a new drug that has been approved by FDA called Avastin. This drug is for patients with advanced metastized cancer. I asked our doctors about the new drug and they refuse to allow him to use it. They believe that the drug will cause my husband to bleed. Again, they really don't know that.

    My husband will be 43 years next week and It's very difficult for me to accept this. It's just not right that doctors forget the individuality of the patient. I'm going to continue to fight for my husband. I trully hope that there is a doctor out there that will listen.

    Thanks for listening

    Lynette
  • schoolgirl
    schoolgirl Member Posts: 29
    #4
    I am a caregiver for my husband, Hunt. Stage 4 colon cancer. The doctor has also told me final stage. He was on 5-FU and LV with camptosar and was clear for 45 days, it returned very aggressive and now he has finished 6 treatments of approx. 55 hours of continuous chemo of 5-FU, LV and oxpl. (sp?)
    He has been scanned and we go Friday for the results. She told us that they may consider 2 new drugs, erbutux (sp) and avastin. If they are not going to help you by trying another drug, GO to someone else, look for clinic trials. I know is easy said, but difficult to do. It just breaks my heart to hear these stories and to know that I can loose my husband to this terrible diease. But keep fighting, think positive. I have been told by several people who the doctor said for them toget your life together make arrangements, and they are still surviving, the doctor is not GOD. This is a good support group. Stay with us and keep us posted. Yvonne
  • andreae
    andreae Member Posts: 236
    #5
    I am very sorry to hear of your struggle. Cancer is awful. I watched my father die from leukemia in 97 at 52 years old and I was diagnosed in 03 at 20. I'm going to keep you and your husband in my thoughts and prayers.

    I am a stage 4 survivor myself (rectal cancer with mets. to the lungs) and I will have to side with Monika and encourage you to see if anything else can be done. Forty-three is young and while the cancer is more aggressive, his body can also fight. My doctor was ready to postpone treatment when the mets. were found and he also told me that I was incurable. I changed to a doctor that put me on a clinical trial and I have been stable for 6 months. I don't want to think about where I would be had I listened to the first doctor and waited... I also like my new doctor cause not only does he believe in being aggressive, but he is also very concerned with my quality of life. Perhaps more consultations are in order. Of course, it's up to your husband. I have an eighteen year old friend who found out that it has gone to his brain (fifth recurrence) and he has decided to not pursue any more treatment. He has decided that he has led a good life and just wants to live out the next couple of months peacefully. Initially, it was tough for me to accept, but I realized it's his choice. One day, I may decide that enough is enough (although I'm still far away from that point) and I hope others will be at peace with my decision. However, so long as I am still ready to fight, I will find doctors ready and willing to fight with me.

    Caregiving is exhausting (I have watched my mother do it for my dad and me). Please take care of yourself. Let others help and get lots of rest.

    Thinking of you,
    Andrea I
  • spongebob
    spongebob Member Posts: 2,565 Member
    #6
    Lynette -

    Monika and Yvonne are right on about going to another doctor. In the imortal words of Winston Churchill; "Never, never, never give up." (interesting bit of trivia; that was the entirety of a commencement speech he gave at - I believe it was - Harvard).

    I personally despise the term "final stage". I like to think that the stage at which my cancer was caught, and treated and went into remission was the final stage. Meaning of course that it's gone. Hang in there and I urge you to seek trials and/or a doc who is willing to "Never give up."

    Keeping you both in my prayers.

    SpongeBob
  • jsabol
    jsabol Member Posts: 1,145 Member
    #7
    Lynette,
    My heart goes out to you and your husband. I lost my dad at age 85 to this disease, but he felt clear that it was just his time, after fighting for a year and a half. I was diagnosed this past Nov, and am in treatment now.
    Monika and others are so right about finding an MD who joins with you in this battle. Did you know that the American Cancer Society has a 24 hour support line? They may have additional info about resources in your area for both treatment and support. You are both in our prayers. Judy
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #8
    samson41 said:

    Monika,

    Thank you so much for replying back. It's so true that doctor forget the individuality of the patients that they are treating. In our case, that's what happened to my husband. There's a new drug that has been approved by FDA called Avastin. This drug is for patients with advanced metastized cancer. I asked our doctors about the new drug and they refuse to allow him to use it. They believe that the drug will cause my husband to bleed. Again, they really don't know that.

    My husband will be 43 years next week and It's very difficult for me to accept this. It's just not right that doctors forget the individuality of the patient. I'm going to continue to fight for my husband. I trully hope that there is a doctor out there that will listen.

    Thanks for listening

    Lynette

    samson,

    I am so sorry about your hubby.

    Have you checked out the Cancer Treatment Centers of America? (1.800.577.1255)

    I think there is one near Waukegan. (I am originally from Racine)

    There is also a Dr. Alwa in Kenosha (I think that is how you spell her name) that does cancer treatment. I doubt they will give up on you guys.

    www.drday.com
    www.hacres.com
    www.gardenoflifeusa.com

    Please don't give up please!

    peace, emily who knows your town!
  • samson41
    samson41 Member Posts: 6
    #9
    I want to thank all of you for encouraging me to fight. I'm so thankful to know that there are people who really cares. Your encouraging words mean so much to me. I thank God that I was able to find this network.

    With your suggestions, I immediately contacted our insurance company and start working with a nurse to see if we can get an referral to go the Cancer Center of America ( near Zion, IL)to get a second doctor's opinion. Please continue to pray for us that there will be a doctor whose willing to listen and help us fight this battle. It's not over until God says it's over.

    Lynette
  • samson41
    samson41 Member Posts: 6
    #10
    I want to thank all of you for encouraging me to fight. I'm so thankful to know that there are people who really care. Your encouraging words mean so much to me. I thank God that I was able to find this network.

    With your suggestions, I immediately contacted our insurance company and start working with a nurse to see if we can get an referral to go the Cancer Center of America ( near Zion, IL)to get another doctor's opinion. Please continue to pray that there will be a doctor who will listen to us and be willing to help us fight as well.

    Lynette

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