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  • #63868
    jathy1125
    Participant

    Joanna-Welcome and sorry you had to find us. I am a CC survivor, 3 years and 2 months cancer free. I have an amazing story to share, I keep it posted on my FB page (Catherine Sims Dunnagan). I had my miracle happen at Barnes-Jewish Hospital in St. Louis MO. by Dr. William Chapman. I am a live because of God, 2 strangers and Dr. William Chapman. I was diagnosed July 30,2008 and was given 6-8 months to live and my only HOPE was a transplant.
    Joanna, I was blessed because I was diagnosed by one of the best who knew my only HOPE was Dr. Chapman and didn’t have to go through all the bad doctor and illerate doctor nonsense.
    Please call (618-567-3247) or email if I can help. I am living proof there is HOPE!!
    Lots of prayers-Cathy

    #63867
    lainy
    Participant

    Dear Joanna, welcome to our remarkable family but sorry you had to join us. I just returned from a short trip but wanted to welcome you. I also want to wish you best of luck on the fourth and pray for God to work through the surgeons hands. Your attitude is already the best so I can only repeat ….be strong! We will all be cheering on the 4th.

    #63866
    formydad
    Member

    Great post Joanna! I appreciate your story. My father was diagnosed in May. He is currently in a clinical trial at U of M. As of last scan cancer has reacted to chemo! YAY! We are in the process of getting other “plans” in place. We’re not giving up and will fight this disease with all of our might. I shared your story with my siblings. Thank you again for your positive and touching story. Praying for you!

    :-))
    Suzy

    #63865
    Eli
    Participant

    Hi Joanna,

    Like others, I want to welcome you to the site. Sorry that you had to find us. I think you have a great attitude and that’s a big part of the battle.

    My wife is about your age – she is the one with CC. She fell sick in April 2011, just a few days after turning 44. She is 45 now. Our daughter is 13.

    My wife had her big surgery (Whipple) in July 2011. She did 2 months of chemo-radiation after surgery, followed by 4 months of chemo. From my caregiver’s point of view, the recovery from the surgery wasn’t the hardest part of the journey. Radiation and chemo were more challenging in many respects. My wife seems to be in agreement – I asked!

    As Marion said, we do have members who remain in remission for years after a resection. Bob seems to be our champion. He was 15 years cancer free as of December 2011. Here’s the link to his 15 years anniversary post:

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7423

    Joanna, I wish you best of luck with the surgery and a speedy recovery.

    – Eli

    #63864
    marions
    Moderator

    Joanna….yes, there are people without recurring disease, post resection, and several had visited our site – few stay on. But for those actively involved our Gary, Sue, Betsy, come to mind. There are others also who have moved on with their lives and away from this discussion board. There is no magic wand – no one can foresee the future – therefore, I want to stay positive and believe that everyone has a shot at a cure.
    Hugs,
    Marion

    #63863
    joteach
    Member

    LeeAnn I will definitely call you to hear your story. Thanks so much!

    Mark, I had the opposite experience in April. When I awoke and looked at the clock, I realized less than 2 hours had passed and knew they couldn’t do the surgery. I’m hoping the 2nd time is the charm! Thanks for the info. on the procedure. My pre-op isn’t until Thursday, but I pretty much knew it would be a huge incision. I’m fine with that…my bikini days were over in the 80s! The surgeon kept stressing that the recovery would be hard but that he wasn’t trying to scare me. I had to tell him that once you are told you aren’t going to live to see your kids grow up, nothing else can really scare you, now can it? I am so glad it worked out for you.
    It is so hard to read about how often this cancer reoccurs. Is there anybody out there that remains cancer-free after a resection? I hope so. I know that this isn’t really the end, that I will have to keep having chemo for awhile after and frequent CAT scans, but I love to dream that someday it won’t have to be in the back of my mind all day, every day.
    I do know that I am one of the lucky ones, so that is what I hold onto.!

    Joanna

    #63862
    mparsons
    Participant

    Hi again Joanna:

    Don’t worry about the long posts. This is a great place to share your experiences, and it helps those of us reading as well.

    Yes, we do it for our loved ones. I am 52 with three stepsons in the house. My initial sadness was that I might no longer have the privilege and joy of loving and supporting my family. Quickly, that became my motivation to fight.

    Regarding the surgery, yes you will have a big new zipper. The size will depend somewhat on what they will be doing. It may go from just below your sternum and follow the the curve of the right side your rib cage around to your side. It may also travel a bit along the bottom of your left rib cage, but just a bit, making a sort of lopsided chevron pattern.

    Your recovery will depend on the length and complexity of the surgery. My first one was very complicated and took 12 hours. Recovery from that took a considerable amount of time. I spent 3 days in ICU, 8 days total in the hospital, and about a month recovering at home (taking short walks and so forth). The second was about 6 hours. I spent only 18 hours in ICU, about 6 days total in the hospital, and was up and about and back to my routine MUCH more quickly.

    Even with the challenges, this is indeed something to look forward to! Surgery provides the best opportunity for a good outcome. I remember waking up in ICU after the first surgery, and when my eyes could finally focus I looked up at the clock. It said 12:00….but was it noon or midnight? If it was noon, it meant they couldn’t complete the surgery. If it was midnight, it meant they did what they had hoped. I couldn’t really move or look around, but after a few minutes from behind me I heard a nurse say, “We’ll be with you all night.” I was overjoyed!

    Best, Mark

    #63861
    leeann
    Participant

    Hey Joanna,
    I would love to share my experience with you. Call me if you can #773 517 2810

    #63860
    marions
    Moderator

    Joanna….thanks much. Your side effects are not much different from those already reported by others except of course the facial issue. You sound good.
    And, dear Joanna, don’t worry about the length of the posting – you have much to say and we have much interest in reading it.
    Hugs,
    Marion

    #63859
    joteach
    Member

    Oh, and as far as the side effects from the 3 drugs, well the panitumamab causes a horrible, acne-like rash on my face and chest because the skin there has the same kind of protein as the tumor, I think. Something like that, anyway. I am on antibiotics and an antibiotic cream but still look like some of the 8th graders I teach. The Oxilaplatin causes an extreme sensitivity to cold…have to wear gloves just to take something out of the fridge and forget even going into the freezer. I hate it because I can’t drink anything cold and room-temperature water just doesn’t do it for me. Gemzar has made my hair thin…but other than that I haven’t had anything bad. Tired, but functional!

    #63858
    joteach
    Member

    Thanks for the replies. I am sorry to see so many going through this, too. LeeAnn I am so sorry yours came back. But as you said, we will fight this for our little ones. You will be in my thoughts and prayers. Can I ask, how was the surgery and recovery? Did they make an L-shaped incision? The surgeon kept stressing it would be a large incision and the recovery would be taxing. But honestly, I am looking forward to it!!

    When I first started my fight, a co-worker shared her story with me. 25 years ago she had breast cancer that spread to her liver and her prognosis was poor. She had young kids at the time and decided there was no way she was going anywhere. She believes strongly in the mind-body connections and feels she helped cure herself with positive thinking, visualization, meditation, and prayer. I have been working hard at each of those and I think it does help. I visualize my tumor shrinking every night, and visualize my white blood cells being made like popcorn! They have actually called me their “rock star of blood counts” because mine have never gone down. Who knows if it is from the visualization or not, but it couldn’t hurt and makes me feel better…at least makes me feel like I can control something! She also bought me some books and CDs by Bernie Siegel…former surgeon who is now a strong believer in the power of the mind to cure. I listen to the CDs while having chemo. I also switched to a high Omega-3 diet that another cancer patient had told me about. When I ran it by the nutritionist at Mass General she was in favor of most of it. I have given up dairy, red meat except for grass-fed beef (high in omega-3, low in omega-6), no sugar (well, okay, sometimes sugar…I can’t help it!) and lots of greens and fish. Again, who knows if it has helped but something did.

    Marions, I think that is the same study I am in, but I wasn’t aware Rochester was a part of it. In order to qualify, my tumor had to have KRAS Wild-type protein, which about 60% do. It can’t have any mutations. There were a lot of other criteria…couldn’t have spread to any nodes or anywhere else, couldn’t have more than 2 tumors, etc. I just am so thankful I am a wild-type! Lol

    Well, sorry my first two posts have been so long…it is just great to communicate with people who know what I am going through. My husband is great and tries to get it, but how can he?

    I will be more brief in the future, I promise!

    Joanna

    #63857
    mparsons
    Participant

    Hi Joanna,

    Welcome, and thank you for this uplifting post.

    Many of us fighting this cancer have the learned the importance of multiple opinions, and your story helps to affirm that for us once again. Like you, I am here to continue the fight because a second opinion gave me a chance for a resection…two actually. We found an aggressive surgeon with the skills to back it up.

    Later, before I started adjuvant therapy, I actually started an email thread where my team (my oncologist, two radiation oncologists, my hepatologist, and my surgeon) discussed…and sometimes argued…about the best course of action. There were multiple opinions, and eventually some consensus. Still, I had to make a final decision about a course of action, but now had much more information to make that decision.

    So you are doing this just right. Congratulations on the new surgery date, and I will pray for a good outcome and more good news!

    All the best, Mark

    #63856
    maria
    Participant

    Joanna, this sounds really good! You’re going to make this.
    I found out the same way you did, felt a hard mass in my abdomen. 10 cm tumor but also 10 small ones spread all over, therefore no surgery.
    This was april-2010. I was 43 then.
    Since that I’ve had 37 rounds of chemo, gemOx, Gemzar+Xeloda and GemCis. I also did 6 chemoembolizations.
    I still work and live a normal life. Ran marathon now this june, andtwo halfmarathons these past two years. So I can’t say i’m a bit sick really.
    The treatments are harsh but I have no signs of cancer (if you don’t look at the scans).
    I’m SURE that everything is possible, but it is a war where you have to be smart, smarter then cancer.
    I have since dx done everything in my power to support my body in this war, so it won’t leave space to tumors, and to tolerate the treatments. Mentally, physically, spiritually, food, herbs, in every way possible.
    Hugs!
    Maria

    #63855
    lulu07
    Participant

    Joanna….What a great post….I’m also a firm believer in multiple opinions, as it was a second opinion which made me a candidiate for surgery after being told I was not and would never be…I’ve been in that dark place too and much prefer being in the light….lets stay there! Prayers that your surgery is a total success and a speedy recovery for you!
    Nancy

    #63854
    nancy246
    Participant

    Welcome Joanna! What a wonderful post! I will send positive thoughts, pray and whatever else I can do on September 4th! You are right, we always have to live with hope and enjoy each and every day. Take care. Nancy

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