update - needing better news

Limey
Limey Member Posts: 446 Member
edited March 2014 in Colorectal Cancer #1
Hi all, It has been al long time since my last update. We have been busy playing hard and enjoying life as a family. For spring break this year, the boys, Earl and me went to Ixtapa Mexico for the week. The weather was picture perfect and we had a great time. Caleb (my son) and I went parasailing. What a total rush that was. I doubt I will do it again, but at least I did it.

While down there, we all went swimming with the dolphins. What a great experience that was. They certainly are a gentle giant of a mammal. We were able to swim amongst them, kiss and hug them and then the dolphins used their noses and shot us into the air. That was really quite a treat. I would recommend this to anyone as a must do experience.

Recently, we just got back from Orlando for a short 3 day trip to Disney. The boys had a great time and they totally pooped dad out. It was worth every tired minute though and I am so thankful for the time and memories. We have a packed summer with the kids in baseball, a summer vacation in June and allot of time planned at the lake.

Oh yea the Cancer. That crappy word that just wont seem to go away YET. Scans did not show what we had hoped. The tumor is spreading again and not responding to yet another type of chemo. At present, we are out of chemo option and have only one other drug to try, Erbitux. I am told it is effective in about 20% of people and usually works for a short period of time, 4-6 months. From there we are praying for some new trials to come soon.

Without any new drugs, my doctors are saying that a normal person would have in the range of 6 months to a year. But lucky me, I am not normal. Like I need him to tell me that….. I can’t even believe that I am typing that a timeline so short is here, it seems so unreal. Of course I/We will fight like there is no tomorrow and I totally plan to continue to defy the odds. I am only one day from a cure. Lets all pray that day is tomorrow.

I think of you all often, I miss you: my friends at work, my CC friends, and of course, my family. You know the old saying: it takes a village to raise a child. Well each of you have represented part of a village for me. It is comforting to have such a support system. Also, I can not say enough about my partner Earl. He has allowed me the freedom to spend this past year focusing on my health and our family. It has been such a blessing being able to spend so much time with our kids. Earl, you are such a good friend to me and I know right about now you can use some support too. Sometimes I think it is harder on Earl than on myself.

I love you all and really really thank you for your prayers and support.

Comments

  • butterfly23
    butterfly23 Member Posts: 256
    #2
    I will pray for you!!! Keep up your POSITIVE attitude!!! Nice to hear you had a great vacation
    GOD BLESS
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #3
    It sounds like you've had some wonderful times recently and are anticipating a summer with some more family memory-making times. That's so wonderful. On the flip side, I hate that you are looking at such a short time. Hopefully your "abnormality" will allow you more time than the doctors will believe. Keep hoping and praying.

    *hugs*

    Gail
  • kristasplace
    kristasplace Member Posts: 957 Member
    #4
    I love to hear that you're enjoying your life! I can tell from your post that you do NOT believe your doctors. Even if the Erbitux doesn't work, there are many other ways to go. I've heard about an elixir that is known to shrink tumors. I will find out more about that, and post it on here as soon as possible. We can't doubt that there are ancient secrets out there that modern medicine and modern doctors poo-poo at. Just because modern medicine doesn't use them doesn't mean they don't work. I always said that i would do it the modern way until that way proved not to work, then i would go alternative. Take a look at this website; www.chopracenter.com

    Please keep us posted!
    Many hugs,
    Krista
  • rmap59
    rmap59 Member Posts: 266
    #5
    I am so glad you got to spend some quality time with your family. Earl sounds great and I know what you mean by it being hard on him too. I have been on both sides and I think being the caregiver/partner through this is harder. I agree with krista that if conventional medicines quit working look to the alternatives such as chinese medicines/herbs. I take tumeric, a root used in Thailand, has been studied to have tumor reducing qualities, cant hurt. Anyway good luck to you and thanks for all your replies, help on this board. Keep the Faith.
    Prayers to you, Robin
  • apache4
    apache4 Member Posts: 272 Member
    #6
    I can relate exactly. I will be starting the Erbitux with Avastin and Iri..sp? as soon as I get back from this trip to Ca. that I am on. I wasn't told those numbers...I am abnormal too as I have tolerated the chemos so far well. My last option is supposed to be Xeolada...I don't know. Anyway, we can just hope and see what happens. I am not ready to give up...I know you aren't either. I'll be thinking of you.
    Linda
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    #7
    Keep up hope. Just the other day researcher may have found a cure for type 2 diabetics. It was a mistake apparently, They weren't looking in that direction. You see they were doing a study on morbidly obese people who had the surgery to reduce their weight. They discovered a link in the section of small intestine that attached to the stomach. Apparently, when that section is removed the type 2 diabetes disappeared. In other words all the research on the pancreas may have been misdirected and this may lead to a cure. My brother is type 2. My point is some researcher somewhere trying to may a better lima bean may find that elusive protein that unlocks cancers ability to fool the body in not destroying tumors. So you are right maybe it happens tomorrow or the next.
  • pamness
    pamness Member Posts: 524 Member
    #8
    I just read your post. Can't anything brillant, but don't give up hope. New things are happening all the time. All my prayers,
    Pam
  • jenhopesprays
    jenhopesprays Member Posts: 128 Member
    #9
    Hi Limey -

    Big, big hugs to you. So glad you are enjoying your family. I thought this might be useful.


    I had to post about a new clinical trial I just read about.....



    This is from the ACOR website from Kate Murphy:

    I've posted information about a new clinical trial for patients newly
    diagnosed with stage IV colorectal cancer. People whose cancer has recurred
    more than 6 months completing adjuvant chemotherapy are also eligible for
    the trial.

    It's unique in testing a new agent developed by Genentech called a hedgehog
    antagonist. Right now the name for the agent being tested is GDC-0449.

    http://www.fightcolorectalcancer.org/news/ (This is the weblog or blog
    page)

    Permalink: http://tinyurl.com/682vv2 (A permalink is the page where a
    single post is kept on a weblog. No matter when you want to find a post,
    it'll be there.)

    Hedgehog is a signaling pathway in the cell that leads to cell division and
    accumulation of new cells. Ordinarily hedgehog signals are important when
    embryos are developing, Hedgehog encourages the development of limbs and
    fingers and toes. However, it can also be turned on in cancer and let
    cancer cells grow out of control.


    There's a link to the centers where it is being conducted and contacts there
    on the blog post.

    Hedgehog gets its strange name from the initial work that was done with
    fruit flies. When hedgehog was blocked in the flies, they didn't develop
    normal legs and appeared curled up and spiky like a hedgehog, a relative of
    the porcupine.

    This is exciting research to me because it looks at an entirely different
    pathway in the cell with the hope of blocking its activity and keeping
    tumors from growing.

    Kate
  • Faith4Cure
    Faith4Cure Member Posts: 405 Member
    #10
    Hello Limey,
    So great to hear how you are enjoying life! You are making memories for your boys to look back on and for you and Earl to look back on as well. You have a wonderful attitude that will take you far. You are so right---there is a new drug just around the corner that will be the answer to your prayers.

    You are in my thoughts and prayers. Keep on living life to the fullest! Stay positive and keep believing!

    Faith
  • TY2HC
    TY2HC Member Posts: 46
    #11
    You are in my thoughts and prayers. Keep on living life on your terms. Stay strong.

    I wish you all the best!

    Chris
  • chynabear
    chynabear Member Posts: 481 Member
    #12
    TY2HC said:

    You are in my thoughts and prayers. Keep on living life on your terms. Stay strong.

    I wish you all the best!

    Chris

    Limey, if anyone can beat this beast with attitude and spirit alone, you can!

    I love hearing from you and pray with each message that you will be blessed with awesome news and NED.

    Good to hear you are continuing to have such a great time with your family. Looking forward to your summer stories.

    Tricia
  • dash4
    dash4 Member Posts: 303 Member
    #13
    Limey,
    I wanted to tell you how often your posts have given me strength and hope. I am a caregiver for my husband -Stage IV 10/04. My husband has been on erbitux and irinotecan since 10/05. It is beginning to not work so well now, but has given him years of quality time with us. We are currently looking into clinical trials in case we need to make that decision. If you have any questions about the erbitux I will be happy to share our experience. But, believe in the future...with your attitude I know there is hope! Keeping you and your family in my thoughts and prayers.
    Mary Kay
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #14
    I was wondering how you are doing. I am glad you are enjoyng life and making memories for your family. I am sending hugs and prayers.

    Maureen
  • betina61
    betina61 Member Posts: 642 Member
    #15
    Hi Limey, I have been thinking a lot about you, and was starting to worry, I'm glad that that we can know about you.I am happy to see how you have been enjoying your family and that you have that great attitude of not giving up,I want you to know that you are very special to me,and I will pray every single day for you, I admire your spirit so much you have helped so many people on this board, please keep coming and keep us posted, if someone could defeat this desease that person is you, have faith. Lots of hugs to you and your family.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #16
    please take a look at this:

    http://www.tinyurl.com/3dqbxg

    thanks!
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #17
    please take a look at this:

    http://www.tinyurl.com/3dqbxg

    thanks!
  • vchildbeloved
    vchildbeloved Member Posts: 133
    #18
    dash4 said:

    Limey,
    I wanted to tell you how often your posts have given me strength and hope. I am a caregiver for my husband -Stage IV 10/04. My husband has been on erbitux and irinotecan since 10/05. It is beginning to not work so well now, but has given him years of quality time with us. We are currently looking into clinical trials in case we need to make that decision. If you have any questions about the erbitux I will be happy to share our experience. But, believe in the future...with your attitude I know there is hope! Keeping you and your family in my thoughts and prayers.
    Mary Kay

    I'm new to the posting. I am about to start chemo treatment for stage III colon cancer. One of the trial drugs for me is erbitux. Could you share your experience with me.

    Thanks, Val

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