Trying to keep hope

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  • February 17, 2009 at 2:35 am #25587
    swarty1
    Member

    Hello everyone, I just met with my oncologist today and she has set up an appt. with a radiologist on the 24th. Sounds like 5 days a week for about 6 weeks of radiation and chemo. How is it to have that port in you along with the pump and bag with the fluid? I’m kind of not wanting all of that but guess it goes with the territory. Is it tough to shower with that on you and also is it very cumbersome with that going about your daily routine? She [my oncologist] said that it doesn’t look like my cancer [bile duct] has spread at all, which is good news. I was wondering that if my 9 chemo treatments has hopefully slowed it down, why not just continue with the chemo and not go to radiation? I forgot to ask her that question but will ask the radiologist. Hope this finds you or your loved ones stable and fighting this dreaded disease as best you can. God Bless you all…Larry

    February 11, 2009 at 6:11 pm #25586
    swarty1
    Member

    Stephanie, The stents they put in will prevent the bile from leaking into her system, hopefully they put the metal stents in because the plastic ones only last for 4 to 6 weeks, my plastic one plugged up therefore really making me real sick, the metal ones I have in my bile ducts now seem to be working well, as I haven’t been jaunticed [eyes or skin] at all. My thoughts and prayers are with you and your mother…Larry

    February 11, 2009 at 5:28 am #25585
    marions
    Moderator

    Hello Angie….Welcome. I am sorry to hear about your sister and her continuous fight with this cancer. There is much information on the cholangicarcinoma.org website. Please, let us know if you need some help navigating it. Of course, please continue to ask specific question. There are many wonderful people on this board ready to pass on whatever they know and they are willing and ready to help you and guide you through this world of Cholangiocarcinoma/bile duct cancer. Place your pointer to the top green bar where it says: Search Forum and enter any word such as “clinical trials” radiation, chemotherapy, etc.
    Also, clinicaltrials.gov will lead you to current listings of clinical trials including, bile duct cancer.
    Please, stay in touch.
    Hugs
    Marion

    February 10, 2009 at 4:00 pm #25584
    angie
    Spectator

    please let me know about treatments,clinicals trials, where this foundation is located for cholangiocarcinoma. Anyone out there please.

    February 10, 2009 at 3:56 pm #25583
    angie
    Spectator

    Im sorry to here adout your mom. My sister was diagnosis 10/17/08 after two surgerys of bowl obtruction. she has the same as your mom she has under went her firts bout of chemo.Found ouy it didnt work,now on to her second bout of chemo. I dont like what i see on statistic & out come .To answer your question on asking God ask for him to bless your mother. Have you ever read the prayer of jabez? Good book

    January 22, 2009 at 5:07 pm #25582
    rob-mullen
    Member

    Stephanie;

    After reading the posts to your original thread, it’s easy to see that all responders are concerned for you and your Mother! As am I…..

    One particular item caught my attention in that your Mother has recently had stints to reduce “blockage” and is in pain. One particular treatment of consideration that’s worth discussing with your Mother’s physicians is the usage of PDT (Photo Dynamic Therapy).

    I don’t have the link handy at the moment, but if you browse my introduction from yesterday you will find a link of PDT, to which our family recently learned about in usage with stints to not only stop the progression of CC but control the pain as well.

    It is a procedure I recently discussed with our doctors and all are in agreement we will utilize when my fathers no longer able to tolerate the Gemzar he’s receiving or the cancer regains momentum.

    I am truly sorry to learn about your Mother’s situation and recall others similiar to hers where the cancer returned and/or spread from unknown sites.

    I also agree it’s important to maintain an aggressive approach as well, with all considerations towards your Mother and what her wishes are going forward.

    The concept of “Faith” is important too…..and will pray for you and your Mother, as I do of others.

    I can certainly appreciate your efforts in doing what you can for your Mother, just remember to not forget about yourself when you can get a break…..I know the feeling and feel guilty even if I am briefly away from our situation, but you will need your own space and time to continue being “strong” for her and your family.

    Please feel free to contact me if you need someone to talk with or simply “listen”…..

    Rob

    January 17, 2009 at 6:24 am #25581
    tiapatty
    Member

    Stephanie,

    I meant to weigh in on the God thing as well. You said you almost feel guilty asking for help from God and I am also not the most religious person but I was thinking maybe God looks kindly on those who don’t bother him about the little stuff. I mean, look around, God is kinda busy right now. Since cc is pretty big stuff, I think it’s ok to ask for some help and I’ll start pestering him (or her), too.

    Patty

    January 16, 2009 at 9:54 pm #25580
    marions
    Moderator

    Steph….Glad your Mom had the stent. Hope the spasms have been controlled also. Your latest posting explains the use of the Nexava.I would love to know a bit more why the physician had choosen this particular therapy. Stay strong and don’t keep up the hope for your Mom to be feeling much better than she has so far.
    Hugs
    Marion

    January 16, 2009 at 5:59 pm #25579
    lainy
    Spectator

    Hi Steph. I was re-reading the posts here and I just want to say one thing…for you. It does not matter if you are religious or not. Its what in your heart that counts. God does not judge or keep score. He does not give a time table so ask him for strength and there is no time like the present to start believing.

    January 16, 2009 at 5:14 pm #25578
    stephylynn
    Member

    Thanks Marion.
    We had the doctor write down the name of her cancer, and she wrote down 2 things. Hepatobiliary adenocarcinoma and cholagiocarcinoma. Not sure what that means. If they are the same thing. I am going to call the doctor today and ask what the chemo was they at first wanted to give her. She went in for her stent and it is a 4 step process. All went as well as possible. She is in a lot of pain as she is having spasms, which is under control with pain medicine. Thanks.. Steph

    January 15, 2009 at 8:24 pm #25577
    marions
    Moderator

    Stpehanie…..I have a few questions. Has your Mom’s cancer been identified as bile/duct cancer? I took note of one comment made by a physician in re: to Nexavar. She mentioned that Nexavar only works with primary liver tumors and in your Mom’s case, the way you are describing it, I understand that we are talking about mestastses to the liver. 5-FU (for example) has been used, for many years, to treat cholangiocarcinoma. Within the last few years other agents have been added therefore, I am perplexed by the denial of the insuranance company.
    Please, stay in touch
    Hugs
    Marion

    January 15, 2009 at 11:52 am #25576
    darla
    Spectator

    Hi Stephanie,

    Welcome to the site. I am so glad you have found it. Everyone here is so helpful, supportive & comforting. You have found the best place to be as you travel this road you don’t want to be on. The people here are great and will be here for you when you need them for knowledge, support & comfort.

    You are right on track to spend as much time with your Mom as you can & to let her know that you are there for her.

    I will be thinking of you & your Mom & hoping for the best.

    Darla

    January 15, 2009 at 5:07 am #25575
    stephylynn
    Member

    Again, thank you to all that wrote. I knew there were great people around, but I never expected to here from you so soon. What I am realizing is that I know absolutely nothing about cancer. I have read other peoples posts and I have no clue what they are talking about. I do not know what kind of chemo they wanted to give to my mom, I just know that it was for colon cancer. And since she doesnt officially have colon cancer they wont do it. My mom is going in for her stent tom. and when I called her she didnt want to tell me because she said I need to be home with my kids. I know this is a mom thing because we always try to put others before ourself. I think this is my time to become the mom in charge and take care of her. I didnt think it would ever be this hard though. I am learning a lot from you guys, and I know I need to be the one to ask the hard questions. I am not a religious person and I almost feel guilty for asking for GODS help. But, I am, almost every waking moment. Thank you again. I dont know how much time I will be able to devote to talking on here. My mission now, knowing how bad this cancer is, is spending time with my mom. Having her, let me, help her.

    January 14, 2009 at 10:06 pm #25574
    hopeandgrace
    Member

    Hi Stephy,

    I am so sorry to hear of your mom’s diagnosis. It is so shocking and scary. I know what you are going through – my mom also has this disease. She was diagnosed in December 2007 and we were completely blindsided. She was 59 at diagnosis (a week from her 60th birthday) and in what we thought perfect health. Stay strong and search everyday for grace – it’s there. The people on this board are so wonderful. Stay connected and informed.

    Many blessings,
    Annie

    January 14, 2009 at 6:44 pm #25573
    stephylynn
    Member

    Thank you, everyone. The doctor said she is in stage 4 advanced. She is going in next week to have a stent put in because she is so sick right now. She can hardly eat anything without severe pain and then getting sick. She is currently getting more jaundiced. We are hoping that this will relieve these symptoms so she can concentrate on taking her pills and hopefully just dealing with those side effects. After reading more on this site, I feel better. Definately not ready to throw in the towel.

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