New diagnosis

Discussion Board Forums Introductions! New diagnosis

Viewing 15 posts - 1 through 15 (of 26 total)
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  • #36250
    darla
    Participant

    Dear Laurie,

    You are a strong lady. I am glad that the pain is under control. I respect and understand your decision to let go & let God. Thinking of you and hoping things go as you want and yes please do keep us updated as you can.

    Love & Hugs,
    Darla

    #36249
    lbellmurphy
    Participant

    Hi all,
    I do have a second opinion consultation next week so I will let you know what I find out. I think my story will be the same. I have decided against chemo and have begun hospice care which is incredibly kind. My family has made my spot in the breakfast nook filled with sunshine and the outdoors. I feel much like a princess.
    I am starting to feel more tired but the pain is in control. I have decided that God has perfect timing and I will let go and let God. I am trying to say all the things in my heart that I meant to always say.
    I will keep you updated. Laurie
    Spring in NY.
    The hospice is s ending their videographer over soon.

    #36248
    here4mom
    Member

    So sorry to hear about your diagnosis. I know you will have some tough decisions up ahead, and I would encourage you to look into alternative therapies even if you can’t do the traditional. At least to improve your quality of life. I really wish you the best. My mother is 53 going through this right now. It’s so crazy how it sneeks up on you and then offers a very grim view of the future. I hope for you that your future will be bright and you will have a miracle. There’s always room for hope.

    Hugs from St. Louis, MO. – Alisa.

    #36247
    marions
    Moderator

    Linda…we are all in this together. Everyone is special and each comment made is for the good of someone else; a full circle of love and caring, compassion and understanding, wisdom and sharing of knowledge while cheering all the way. This is us…the members of the Cholangiocarcinoma Foundation. This speaks for you as well, dear Linda.
    Best wishes,
    Marion

    #36246
    linda-z
    Participant

    Thanks Jennifer S for the very nice thoughts. I actually got the video idea (or at least leaving a message) from a very old movie called Time in a Bottle where, I believe, a young woman was very ill and left audio tapes for her child for different stages of his/her life, for when she couldn’t be there. I’m not to that point yet (not giving up on the fight), but know it could come to that.

    Thank you everyone again for all the encouragement that is given on this website. It really does mean so much to all of us, whether directed at us specifically, or we gain something from someone else.

    Thanks,

    Linda Z.

    #36245
    lainy
    Participant

    Hello Nancy, and so wonderful to hear you are doing so well! Just love waking up to great news because you are an inspiration to others as there is nothing better than hope! Please keep us posted on how you are getting along and we wish you to be always giving us good news!

    #36244
    lulu07
    Participant

    Hi Laurie

    I’m one of the fortunate ones who was able to have a liver resection with Dr. Myron Schwartz at Mt. Sianai actually it was more a hepatectomy where he removed the whole right lobe of my liver. I’am 8 weeks post surgery feeling fine and having adjuvant chemo with Bruckner Oncology at New York Downtown Hospital. Dr. Schwartz referred me to Bruckner. I was told by another very prestigious NY cancer center that my only course of action was chemotherapy. I introduced myself on this wonderful website and was e-mailed by my guardian angel Marc whos mother had just had surgery with Dr. Schwartz what hope that gave me it made me push forward and get that all important 2nd or 3rd opinion if necessary. I can not sing the praises of Dr.Schwartz and his associates loud enough. He is kind, compassionate and a brilliant surgeon. This is a terrible disease I’m 51 years young no symptoms just boom!! my whole world changed. Please come to this site frequently as there are just so many wonderful people sharing all important information. I will keep you in my thoughts and prayers. Nancy

    #36243
    lainy
    Participant

    Welcome, Drew. What a fine man you are. Your mom did a great job when she raised you. Hope she is doing OK. Thank-you for sharing your love of your mom with all of us.

    #36242
    harmony
    Member
    DREW1978 wrote:
    Mom,

    I love you BIG much and I think of you every minute of the day. You are so strong and I support you in whatever decision you choose. I may be thirty one Mom, but I still need you.

    God never gives you more than you can handle. Right???

    Get some sleep,eat good food, take a bubble bath, put some comfy’s on and watch a good movie. Funny that’s somthing you tell me all the time. I can still hear you singing to me, getting me up for school. You are my rose. Goodnight, sleeptight…

    Love,
    Your baby boy (okay 6’3 and 200 lbs does not constitute baby) but I love you.

    “To thine own self be true.”

    I hope that when I kick the crap out of my cancer and my son grows up from the little 4 year old that he is into our age (I’m 31 as well), he blesses me with the absolute love that you’ve shown your mom. Just thinking of how wonderfully loved your post must make her feel brings tears to my eyes. Good on ya, man.

    #36241
    drew1978
    Member

    Mom,

    I love you BIG much and I think of you every minute of the day. You are so strong and I support you in whatever decision you choose. I may be thirty one Mom, but I still need you.

    God never gives you more than you can handle. Right???

    Get some sleep,eat good food, take a bubble bath, put some comfy’s on and watch a good movie. Funny that’s somthing you tell me all the time. I can still hear you singing to me, getting me up for school. You are my rose. Goodnight, sleeptight…

    Love,
    Your baby boy (okay 6’3 and 200 lbs does not constitute baby) but I love you.

    “To thine own self be true.”

    #36240
    marions
    Moderator

    Char….Princess Margaret Hospital is quite familiar with Cholangiocarcinoma. Dr. Dawson one of the radiologists. Good luck and please, keep us posted.
    Best wishes,
    Marion

    #36239
    ashley
    Participant

    Hi Laurie,
    Sorry to hear your news on your diagnosis. I would also like to welcome you to the site where you will find helpful information.

    Has your cancer spread to the lymph nodes?? If not, microspheres is one option. Sloan Kettering MAY be doing it – not exactly sure but it would be worth it to look into. Dr. Kennedy at Wake Radiology in Cary, NC is a doctor well know for this treatment. If you call his office they should let you send your scans and he can tell you if you are a candidate without having to travel there first. My point is that I don’t like your doc throwing out those statistics – time for another opinion! Also – why is resection not an option?? Some docs will attempt to resect while others will not – another reason to look around. A few people on this board recently had resection through Dr. Myron Schwartz at Mt. Sinai – NY. If you do a search on both microspheres and Schwartz you should be able to find some more info.

    Best to you and your family – keep us posted.
    Ashley from CT

    #36238
    lainy
    Participant

    Char, I know we have some people from your area and I think your 1st Post may get lost tacked on to someone else,s. I would re post your first Post under Introductions and you may get more answers. I am glad you are reading up. Please keep us posted.

    #36237
    char
    Participant

    Thank you, I have been reading some of the messages on the site…all these people are so brave. We live in Ontario and she will be going to princess margaret hospital for the radiation. that will be in 3 weeks i guess she is very sick form the chemo.

    #36236
    lainy
    Participant

    Char, Welcome to our wonderful Family! I am so sorry to hear about your sister. I know there are some on our Site who have had this situation. If you go to the top of the page to our Search Engine you can type in any relevant word and get the posts that pertain the information you are looking for. I might also suggest reading up on CC as the more you know actually you will not feel as scared. May I ask where your sister is being treated. Does she have support (around her)? We don’t work in time frames or statistics because they just are not always correct. It is perfectly normal to feel hopeless but the more you educate yourself on it and the more you get involved in a helping manner the more the fight subsides. Please keep us posted, we care.

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