Not so good news

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  • #84170
    hercules
    Moderator

    Nancy, I do not have a stent currently, In previous posts I noticed certain foods and alcohol make my resected liver produce what I call a “burst of bile” where I can see evidence of over production of bile, I believe a steady flow of bile keeps the duct clear. It is when I eat nothing but salad and tuna fish and fruit etc. that trouble starts. A careful presence of alcohol and animal fat seems to keep my bile duct clear til now. This is my observation up to this point. Everyone is different and we are all just chemical robots as my high school earth science teacher once said. The trick is listen to your body, you must learn to read the messages your body sends you. It seems contrary to logic I know, I do eat healthy,most the time, I drink a lot of cranberry juice, coffee, daily r outine to keep moving,find what agrees with you. Good luck…(required),,,,Pat

    #84169
    nancypkeen
    Participant

    Hi Hercules,

    Your story is quite unique as well. From the beginning all doctors thought Ron’s narrowing of the bile duct was due to scar tissue since the CT scan was crystal clear. Do you have a permanent stent? What sort of maintenance do you have to do to keep it from becoming clogged? I need to do some research on this. We have an appointment next week with our gastro doctor to get his opinion.

    Thanks for sharing your story…

    Nancy

    #84168
    lainy
    Participant

    Hi Nancy. No it was always at the same place and that happened 3 X. He had Distal CC which is where the bile duct connects to the pancreas and ampulla vater and it never even got in to the pancreas. Its the strangest Cancer I have ever heard of, kind of like it has a mind of it’s own. That was before this website and of course we did not know what questions to ask so it was always a little vague. It never spread to any lymph nodes and in fact did not get to the liver until the end. Weird!

    #84167
    nancypkeen
    Participant
    Lainy wrote:
    Dear Nancy, I am so sorry to read what you both are going through. I can only tell you about my Teddy who had a Whipple surgery where they got clear margins and his returned to the same place 3 years later and they did radiation to shrink it followed by Cyber Knife. It then returned to the same place 2 years after the C.K. I have never heard that after 7 years, one is safe. We do have a few members at 10 years and I know one who is at 15 years. At least they have a plan for Ron so you dust yourselves off and get up the strength you had before and you will beat this again. Please keep us posted and I am wishing you more than the best! You never know how strong you are until “strong” is the only choice you have!

    Hi Lainy,

    Thanks for your response. Did Teddy’s cancer show up anywhere else when it returned to the original site?

    Nancy

    #84166
    nancypkeen
    Participant
    marions wrote:
    Nancy…..you can count on our thoughts and prayer to come Ron’s way. I am stunned to hear of the current developments seven years out from diagnoses, but hopeful that it can be conquered.
    I am wondering, dear Nancy, had you consulted with an interventional radiologist as well?
    Hugs,
    Marion

    Hi Marion,
    Yes, we met with an interventional radiologist at Sloan Kettering. She is the one that inserted the permanent stent. Ironically, she was the one most surprised by the return after seven years. After the biopsy, she spent a long time with me convinced we had nothing to worry about. Pathology report came back the next day with a very few cancerous cells and we were all very surprised.

    Thanks for your thoughts and prayers…
    Nancy

    #84165
    hercules
    Moderator

    Nancy, my name is Pat and my case has many similarities to Ron’s , I am eight years past complete resection, I also had a bilary restriction issue at the area where the bile ducts were rejoined. It was a year ago so it was about the same time.The doctors all talked about it and my surgeon who did the job seemed confident this was just scar tissue and to stent it. I was not jaunticed when I went for a MRI of the bile duct, I had a week of light tan colored stools and mild pain in liver area when I eat fat or drink a beer. I knew right away when things weren’t right. One evening I had a few beers, it was hot out and I try not to drink too much usually but the next day things seemed fine and my stools where normal dark brown again and very quickly my symptoms disappeared ….? Talk about crazy but true. And my symptoms have not returned. I talk with my Gastrointestinal doc and my theory is bile is very acidic, it can also act as drain cleaner on scar tissue. My gastro doctor laughs about this absurd possibility, and does not dispute it. A very lean diet with no alcohol seems the right and healthy thing to do for a resection patient. I love a prime rib dinner occasionally and my doctor says “If you can do a whole prime rib dinner without an issue you are doing well.” So there it is.I use cannabis daily as well.I also have been diagnosed with Primary schlerosing cholangitis, which is a scarring condition of the bile duct. I am not a doctor, and my doctors have nothing to base a next move on either. I live each day as it comes and I am on easy street compared to most. My guardian angels are very effective, and I believe there is a spiritual twist to all of this and I try to demonstrate my appreciation to god every day.May god bless you both, and I hope you have an amazing turn for the better as I have, Pat

    #84164
    marions
    Moderator

    Nancy…..you can count on our thoughts and prayer to come Ron’s way. I am stunned to hear of the current developments seven years out from diagnoses, but hopeful that it can be conquered.
    I am wondering, dear Nancy, had you consulted with an interventional radiologist as well?
    Hugs,
    Marion

    #84163
    lainy
    Participant

    Dear Nancy, I am so sorry to read what you both are going through. I can only tell you about my Teddy who had a Whipple surgery where they got clear margins and his returned to the same place 3 years later and they did radiation to shrink it followed by Cyber Knife. It then returned to the same place 2 years after the C.K. I have never heard that after 7 years, one is safe. We do have a few members at 10 years and I know one who is at 15 years. At least they have a plan for Ron so you dust yourselves off and get up the strength you had before and you will beat this again. Please keep us posted and I am wishing you more than the best! You never know how strong you are until “strong” is the only choice you have!

    #84162
    nancypkeen
    Participant

    Hi All,

    The last month has been quite a roller coaster. Two trips to Sloan Kettering and one local hospital stay in between because of high fevers due to infection. A drainage tube was inserted and apparently all of the bile ducts were not flowing properly because the drainage tube was slightly off. The plan of action was to get the bile flowing and they would insert a balloon into the bile duct to correct the area that was narrowed.

    All doctors in Richmond and New York were certain that the cancer had not returned and the partial blockage was due to scar tissue because NOTHING showed on two CT scans and two biopsies showed nothing. Not to mention we were told this cancer does not return after seven years. Well I guess the third biopsy was the kicker because it showed a very few cancerous cells at the narrowing of the bile duct where the original resection occurred. There is no mass or tumor but the cells appear to be “angry”. The cancer cells are localized. The drainage tube was removed and a permanent stent was inserted in place of the balloon. The fifty million dollar question now is how do we treat this. All doctors agree this is a “medical mystery and “medical marvel”. We have been told when this cancer returns it always shows up somewhere else as a mass or tumor and usually within three years.

    Our oncologist in New York was quite positive and said with it being localized and such a very small amount of microscopic cancer cells, chemo and radiation could possibly eradicate this. Our Virginia doctor was not as optimistic saying we have absolutely nothing to compare this with so we do not know how it will respond to treatment. Not even sure it is a recurrence or a new cancer. Both oncologist have made several conference calls to other major cancer hospitals and it continues to be a mystery. Ron is not a candidate for a second resection because he had a complete one seven years ago.

    Ron is scheduled to start chemo on September 24 and his medicine will be:
    Gemcitabine 1000 mg/m2 IV days 1 and 8
    Cisplatin 25mg/m2 IV days 1 and 8
    Duration: 21 days x 4 cycles

    We will be returning to New York following his treatment to discuss radiation.

    Certainly not the path we were expecting to travel seven years out but would appreciate any thoughts on the above. Please keep Ron in your positive thoughts and prayers. The people on this website are always in my prayers.

    Nancy

    #84161
    dukenukem
    Member

    I believe lisacraine has had more than one resection. There may be others.

    What a bizarre disease this is when we hope for it to “only” an infection.

    Pat –

    There’s a Sticky under “Good News” that collects milestones. Some have reported even longer survivals than yours. They may be able to provide their plans.

    Duke

    #84160
    hercules
    Moderator

    Nancy, I am sorry to hear of Rons latest setback. I have been waiting to hear how he did in New York, and you may not have a computer with you so when you read this I hope things are better. I am at eight years plus passed resection and they were doing blood scans once a year, just as with Ron. I just don’t believe once a year is enough, and today I went for a blood draw to at least check for skewed liver enzymes. My question is this… How does a long term survivor of this awful killer keep a vigilant watch for its return? There is no set process because it is rare to get, and even more rare to survive beyond 5 years. Is there anyone with a plan for this after 5 years of survivorship ? Nancy and Ron you are both in my prayers, Pat

    #84159
    gavin
    Moderator

    Nancy,

    Hoping that the stent insertion goes well for Ron at SK and hoping as well that the testing gives some good news as well. Keeping everything crossed for you both here also. Loads of positive thoughts coming your way as well from me over here. Please let us know how things go as well.

    Hugs,

    Gavin

    #84158
    darla
    Participant

    Nancy,

    Sorry to hear about Ron and what you two are going through. Lot of positive thoughts and prayers heading your way.

    Hugs,
    Darla

    #84157
    nancypkeen
    Participant

    Sent Ron’s test results to Sloan Kettering this week and he is being admitted on Sunday for stent insertion and further testing. We head out on a train from Virginia to New York early Sunday morning.

    Please keep Ron in your prayers and positive thoughts.

    Nancy

    #84156
    mbachini
    Moderator

    Nancy,
    I am sorry to hear the news of your husband. I am glad you will be contacting his surgeon, hoping that it is contained and resectable again if needed! Please keep us informed of the results and plans for treatment…..praying it is just an infection!
    Melinda

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