I never expected to be here.

Discussion Board Forums Introductions! I never expected to be here.

Viewing 15 posts - 1 through 15 (of 17 total)
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  • #25969
    dnicetry
    Member

    Hello again. Thank everyone for your posts to this thread. I wish each and everyone the very best under what are very stressful times. I will be posting on the general discussion board as my saga continues

    #25968
    swarty1
    Member

    Hi Tess, I’ve just had my 9th chemo treatment last Monday [gemzar] don’t know if that’s my last one or not. But I sure don’t like the idea of having that needle and all in my arm for the entire time I have radiation, from what I’m told will be 5 days a week for 3 weeks. I also have CHF [congestive heart failure] for which I have a pacemaker for, so they have to be careful there as that’s just above where the tumor is located. Those drains I had in my abdomin were to get rid of the bile that was leaking into my abdomin because the plastic stent they placed in my left bile duct collapsed, that’s when they put in 2 metal stents. One doctor told my son that at first they drained approx. 1000ml the day I was admitted to Mayo [3rd time} then when they dried up or should I say quit draining for a few days I went to Mayo and had them removed. All the best to your dad…Larry

    #25967
    tess
    Member

    Hi Larry, your story sounds very simular to my Dad’s. He has had the biliary catheter in since Nov., instead of a stent, to divert the bile. It is through this same tube that they will administer the radiation- in his case, via brachytherapy radiation, directly into the tumor. They are expected to discuss more specs on that next week, he’s been on gemzar since Nov.

    Best to you!

    -Tess

    #25966
    swarty1
    Member

    Hello everyone, It’s Larry from Wisconsin again. Dnicetry, I read your post and I had about the same symptoms in May, abdominal pain or stomach pain and that was about it, altho my urine was very dark also. I finally saw my heart doctor the first of July and he thought is was acid or stress causing it [the abdominal pain], He gave me a prescription and said if that doesn’t work see him in 2 weeks. I went back to see him on the 21st of July and my blood pressure was 70/56 he slammed me right in the hospital for 2 days for tests. Was released and the next week I really had abdominal pain, my son took me to the urgent care and they checked me over [all kinds of tests again]. That was at Stoughton Hospital and they put me in an ambulance and went to St. Marys Hospital in Madison for 3 days. More tests and an ERCP, that’s when they discovered the bile duct cancer. as Paul Harvey would say the rest of the story is in the introduction section on this site. I was also wondering about radiation. When a person gets radiation treatments does he/she have to have a kind of feeder needle placed in their arm so a nurse can give them injections, kind of like when they put the needle in your arm or hand when you have chemo treatments and then leave it there while you are going through radiation treatments? I really don’t like the idea of that because of what I went through for 6 to 8 weeks with my bile duct drains in my abdomin, 3 of them, so very difficult when showering and just doing normal things during the day. Ok, the best of everything to you all and may God Bless.

    #25965
    marions
    Moderator

    Hi Jim…Your story sounds familiar to most. This cancer creeps up on us without any warning and/or symptoms. You did not share with us where you are being treated and if you have had the opportunity to consult with other physicians in re: to second or possibly third opinions. I am so happy for you to be feeling as well as you describe and I am looking forward to hearing about your latest CT results. And, as Jeff has mentioned the

    #25964
    jeffg
    Member

    Jim ,Sorry you are fighting this battle. I would recommend start with using the custom google search at the top of this page. This custom search is for this site dealing with what you are asking about. Others will also volunteer as they read your post. I wish you the best and don’t hesitate to ask any questions if something is unclear, we are here to asist. 2nd and 3rd opinions can usually bring about a different approach. Some surgeons are willing to do more than others,

    Bless Ya,
    Jeff G.

    #25963
    jimgall
    Member

    I was recently diagnosed w/ cc back in late Nov,,, just during the holidays. Although I had been feeling fatigued, starting to experience night sweats, appetite loss… the diagnosis came as a complete shock ! I kept inquiring w/ my doctor about other possible explanations: pneumonia, viral infection, etc… just coincidentally had applied for a life insurance policy & the required blood test came back w/ alarming results. Then came the Ultrasound, CT / Pet-scan, biopsy, which ultimately confirmed cc. NO, not me, not at this time in my life ! I started w/ a round of Gemzar (very tolerable ) & am now currently going thru radiation ( Tomotherapy ) treatments. Tomorrow’s my last treatment & then it’s another CT scan to examine if there’s been any shrinkage. Initially, surgery was ruled out due to size, placement of the tumor ( almost completely covers right lobe & small extension toward the left ). In the event that surgery is still ruled out, would like to hear about other’s experiences w/ alternative treatments: Chemomemolization, Hepatic Perfusion Chemo, radioembolization. Also, has anyone explored the treatment that was profiled last week on ABC news: http://abcnews.go.com/Health/CuttingEdge/story?id=6803208&page=1

    You’ll be hearing from me again.

    #25962
    marions
    Moderator

    Thanks Tess…I have received it.

    #25961
    tess
    Member

    Hello Marion, I have sent you an e-mail offsite with contact information for Barb, she posted once or twice a couple years back. We have corresponded over the last couple weeks, off the cc site, and she has quite a story. I just dropped her a note and encouraged her to consider coming back to the site and sharing more about her story- per this thread. We’ll try & secure more details!

    Best,
    Tess

    #25960
    marions
    Moderator

    Tess…..I am interested in the comments from the representative of the VA in re: to bile duct cancer. Do you recall whom you were speaking with? Any information you can share would be helpful to other members on this board.
    Thanks and good wishes coming your way,
    Marion

    #25959
    tess
    Member

    Hello Dnicetry and welcome. Great weather for snowshoeing, you’re right! Particularly with a nor’easter on the way this week! We are almost neighbors…. we’re about 1.5 hrs. down the road in the Binghamton area. My Dad was recently diagnosed with cc. Don’t believe them when they tell you this is rare. In the last couple weeks, per this board, I’ve heard from cc patients & family in the Binghamton & Rochester area, and my husband’s grandfather also had cc. & was also local.

    My little guy was born up in your neck of the woods 3 yrs. ago, at Highland Park! Dad is being treated down here in Sayre PA, at the Robert Packer-Guthrie, he has a good team. We’ve also heard good things of Roswell’s Dr. John Gibbs (surgery).

    That’s great that the Gemzar is agreeing with you so well. Dad has been on Gemzar since Nov. and he too hasn’t lost a strand of hair!

    There have been discussions on this site about possible links between cc & Agent Orange. It is my understanding that currently the VA doesn’t recognize it, but some continue to fight it. According to one gal I heard from this week, the VA does recognize ionizing radiation and bile duct cancer and they do compensate for it to the veterans exposed during a particular window of yrs.

    Keep up the high spirits & best wishes to you!

    -Tess

    #25958
    david-s
    Participant

    Dnicetry,
    If you go to “new member” David S you will read my story. I also have a few other postings so you can search for my name. I am on the same schedule as you are with Gemzer. I am a veteran also but not from Vietnam. 24 years in the Air Force. Hang in there my brother. Attitude IS everything. God has a plan for all of us. We just may not know what it is

    #25957
    heatherkp
    Member

    Dnicetry…almost a year ago, I wrote a similar topic as yours…never thought this would happen in a million years…a year later we are still fighting to win the battle my husband is fighting against this monster. I must say…when Lainy says this is the best little club ever…she is soooo right. It is a WONDERFUL place to come to for anything you might need. The people are amazing, wise and very, very supportive…the day my husband was diagnosed, my very best friend found this site for me…and I’ve been addicted ever since…wishing you all the blessings God has in store for you….welcome, welcome, welcome!

    #25956
    marions
    Moderator

    Dnicetry…I also would like to welcome you and appreciate your great sense of humor. The stories are always amazing as to how this cancer is detected. Certainly, it always comes as a surprise to us since I don’t know of many people who have ever heard of this cancer prior to the diagnoses. I was wondering about the other possible treatment suggested to you. Have you also consulted with a radiologist?
    Great to hear that you have plenty of opportunity of enjoying the winter. Snowshoeing is one of my favorite winter activities. I am so glad that you have found us.
    Best wishes,
    Marion

    #25955
    darla
    Participant

    Hi,

    I also admire your attitude & sense of humor. It is good to hear you have not had a problem with the chemo and also that you have the support of family & friends. Now you also have all of us.

    My husband was also in Nam in the 60’s. He passed away last September from interaheptic bile duct cancer. He was 62. Many had thought there was a relationship to Agent Orange, however, I have been told it may have been caused by liver flukes which are parasites in the waters of the Asian countries. If you search parasites liver flukes on the site there are several posts on this. You may want to check into this further.

    Welcome to our club such as it is and we will look forward to hearing more from you. The best of luck to you on your journey. Remember that there are a lot of wonderful people here willing and waiting to help & support you.

    Darla

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