hello,advice?

jennhws
jennhws Member Posts: 8
edited March 2014 in Colorectal Cancer #1
i have been here for a few weeks just looking. i started out at cancer compass don't remember how i found you all but there is definitly alot more person to person relation here that's nice. i am 30 dx at 29,3 months after my 3rd child was born.9,5,and 10 months they're great! i had a football size tumor encircling my transverse colon did surgery 2/06.healed for six weeks and started chemo 4/06 as stage3 maybe4.from surgery 15 out of 17 lympnods were positive and at my 1st oncology visit it was in the lymps in my neck so he said tends to be more genetic and or hereditary and thinks tumors will start popping up every where making me a stage4. wish and hoped he was wrong but he wasn't it is now in liver and lungs plus it's signet ring which is very rare.so my question for yall is okay oxiloplatin,leucovorin,xeloda,and avastin combo did not work.irrinotican,erbitux,xeloda combo a no go as well so he kept that same combo i,e,x,and added back avastin.just thought i would clue you in now.he is going to re send my tumor to path to make sure we are not missing something.what do you think?this is what i think and maybe it's part wishful.if the tumor started on the inside of the colon and to be as big as it was doesn't it seem like i would of had total blokage which i didn't cause scope went through it.and another puzzling thing is that it went to lungs before liver not common or common? thanks and look forward to hearing from all of you. GOD bless.jennifer

Comments

  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #2
    Jennifer,

    Welcome. this is a great site. I am sending you a big hug. You are so young to have to deal with all this.

    If I were you, I would get a second opinion at a major cancer center. Maybe they will have some new ideas to help you.

    Maureen
  • spongebob
    spongebob Member Posts: 2,565 Member
    #3
    Hi, Jenn -

    First, welcome. Sorry you have to be here, but we're glad you are. You're right, we are a very person-to-person group here.

    My friend, Anne, from the Colondar (http://www.colondar.com) - I believe she is Ms. July 2006. Anyway, Anne has the signet ring, too. She was diagnosed stage 4, but is currently cancer free and doing quite well.

    As for your mets liver vs lungs - owing to the size and location of your tumor, I wonder if your mets are contact mets (caused by the cancer cells sloughing off onto the organs they came in contact with) as opposed to mets derived through the lymphatic system. Maybe that would explain it?

    Anyway, you should shoot Anne an e-mail; you can reach her through the colondar site (don't forget to go to 2006 - the 2007 stuff is what it defaults to now). If you have trouble, I can help you contact her.

    Keeping you in my thouhts and prayers.

    Keep you great attitude and know we're all here for you anytime.

    - SpongeBob
  • jana11
    jana11 Member Posts: 705
    #4
    Oh Jennifer, I am so sorry you had to join our group, but glad you found us.

    I was dx at 32 yrs old.... it sucks. I am now stage 4 and doing well. :)

    I agree - go to a major GI caner center. Where do you live? MD Anderson (Houston), Memorial Sloan Kettering (NY), Dana Farber (Boston) are the biggies, but there are more. The big centers see more of the rare stuff and may have some new trials or ideas.

    I don't know if you can get ahold of her, but Claudia (in 2006 colondar) has signet cell also, but she just moved to Rome and is hard to get ahold of now. She was diagnosed when her baby girl was LITTLE.

    There is support for you. Try to hang in there.

    As far as lung met vs. liver - it depends on the blood flow. Rectal cancer goes to lungs, most colon cancer goes to liver.... BUT - every body is different. Get yourself to a major center to get more information.

    Stay strong. jana
  • mindy10
    mindy10 Member Posts: 182 Member
    #5
    Hello, first of all I want to say im sorry for what you are going through. I pray everything works out for you. As for your question on is it unusual for colon to spread to lungs first I have to say no. My dad had stage 3 colon cancer and then 2 1/2 years later it came back in his abdomon and his lungs. Never went to his liver. The dr's did say it usually does go to the liver first and I beleive the majority of the people on this support group did have it in their liver first. I wish the best for you. Mindy
  • Cansurvivor
    Cansurvivor Member Posts: 1
    #6
    I have signet ring carcinoma. It originated in my appendix. I discovered it after going to the ER with serve abdominal pain (March 2002)
    My doctors started me with camptasar/luekevorin(sp)/5FU . . . nothing. Then I did oxciplatin/luekevornin/5FU and that worked. They had to quit because I developed a life-threating reaction from the chemo, but it has been almost three years since I've had a treatment and I am still in remission. What is your story?
    CanSurvivor
  • Heblease
    Heblease Member Posts: 1
    #7
    Cansurvivor said:

    I have signet ring carcinoma. It originated in my appendix. I discovered it after going to the ER with serve abdominal pain (March 2002)
    My doctors started me with camptasar/luekevorin(sp)/5FU . . . nothing. Then I did oxciplatin/luekevornin/5FU and that worked. They had to quit because I developed a life-threating reaction from the chemo, but it has been almost three years since I've had a treatment and I am still in remission. What is your story?
    CanSurvivor

    signet ring carcinoma
    Our son had surgery in July, 2008 where they removed a tumor that started in his appendix; they also removed the majority of his omentum. He developed an infection from the first surgery and they had to open him back up to clear out the infection on August 5th. Last Tuesday he went in to have the remaining tumors removed and perform the heated chemo treatment. When they got inside they found that the cancer had spread and glued his intestines together and covered them and his stomach, so they just closed him up. They are going to start Folfox this Tuesday. The doctors said the cancer found around his intestines is signet ring.

    Can you tell me how you were treated? I tried to find your history on Cancer.org but was not successful.

    heblease
  • valeriec
    valeriec Member Posts: 348 Member
    #8
    Hey You!
    Hi Jennifer, it's Val. I beleive I talked with you quite a bit on cancer compass. My mom, age 62, was diagnosed stage 4 in 2006. You were just about to be married I believe. Do I have the right Jennifer????? I sure hope so. I have wondered about you a lot. With the resending to the path maybe they will be able to come up with the right combo for you. That is what I will be praying for. Let me know if this is you, if not, you probably just think I'm some confused person!! Take care. Oh, I remember, I think you lived in Florida with your Grandmother or near her?
    God bless-
    Valerie

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