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  • #97978
    bglass
    Moderator

    Hi Sangram,

    I am so sorry to hear the sad news of your father’s passing.  Please accept my condolences and wishes that you and your family find peace and comfort in this difficult time.

    Your loving care and support throughout his illness I am certain brought joy to him despite his illness.  Thank you for sharing your father’s story with our community and please keep in touch.

    Regards, Mary

    #97977
    sangram
    Participant

    He passed away at 12:28pm local time, after complications following paracentesis procedure at home. He suffered a heart attack on Friday morning and kept slipping in and out of coma. He breathed his last today, closing a long sad chapter in his life.

    Now we look forward to the future. Our family of three is down to two, and counting.

    Good Night.

     

    #97817
    bglass
    Moderator

    Hi Sangram,

    Thank you for your note.  When a patient or caregiver posts an update, this is so helpful for others reading this board.  With a rare cancer, it can be hard to find information, so every post on this board is highly appreciated.

    Your father has been fortunate to have good care from the family through diet, exercise and rest.  The dietary improvements, from what you describe, seem to have benefited his quality of life.   I hope the news from the test results is optimistic.  If not, please be sure to ask your father’s doctors to give you advice on the care he should be having and how to keep him comfortable.

    It is a hard experience when a beloved family struggles with serious illness.  Please take care of yourself and know the thoughts of our community are with you.

    Regards, Mary

    #97816
    sangram
    Participant

    Hi again,

    Thought I’d post an update on our story.

    In the initial weeks after diagnosis we decided against any form of aggressive treatment for my father. We decided instead to control his diet to limit the amount of drugs he was taking before diagnosis, restricting medicine use to only those needed to treat infections. Since we had to eliminate blood sugar and blood pressure medication, we eliminated sugars from the diet (except that obtained from fruit) and limited the consumption of sodium. The diet was focused on protein and vitamins/minerals, with minimal starches. This meant a switch from a rice-based diet to quinoa, lots of fresh fruit and vegetables, and a generous dose of oats, nuts, seeds and some selected superfoods.

    Correction to the diet resulted in reduction of blood sugar and blood pressures to normal range (120-140 glucose and 140/80 average BP), something we hadn’t seen in 20 years. We were dealing with a couple of local infections due to the stent placement (which was critical as his bilirubin levels were life-threatening), and a urinary infection due to the hospital stay and catheter placement. These took about six weeks to resolve and the UTI is not yet fully resolved.

    We were advised against resection due to advanced age and multiple complications – the anesthesia risk was very high. Our doctors also told us about the poor chemo response of his tumor, and the chemo shock may also have been quite bad for him. As a result we continued to care for him with a controlled diet, a bit of exercise (that he was able to do) and bed rest. So has been our story till he contracted a serious GI infection at home (post a single dose of CBD oil), and a subsequent hospital stay and post-discharge scans have revealed that there is a possibility of metastasis in the liver and some secondary growth in the intrahepatic duct.

    We are sending out for AFP+CA19.9 results tomorrow to confirm these diagnoses. We always knew this was going to happen at some point because we were not trying to really attack the disease. Since he is bedridden and cannot function without a carer, his will to live has been sapping away for a few months now. He outlived the doctor’s prediction by two months, but it seems we’re now in the final few weeks of his ordeal.

    I really don’t know why I’m writing this. May be just wanted someone else to know.

    #97260
    sangram
    Participant

    Thanks Mary for the warm welcome!

    I did speak to two oncologists overnight and early this morning, with five decades of collective experience. Both of them were in agreement viz. regardless of the state/stage of the cancer, we would have to treat the jaundice first without which no meaningful discussion could even begin. If that required the placement of a stent then that had to be done anyway – or the patient would not survive the levels of jaundice we were seeing.

    So we went ahead with the stenting procedure this am, and Dad recovered well, conscious, lucid and crabby within an hour of exiting the OT/OR – it was wonderful to see him back! He ordered me to not visit him tomorrow morning and get us both some rest instead. The results for the tissue biopsy should be available by Monday morning and we can then plan our lives, breaking news to him is what I’ll have to worry about next. The GI surgeon who conducted the stenting procedure has apparently seen many similar cases in similar age groups, and opined that this kind of cancer is tough to treat but we could still try.  He scraped off a bit of tissue for the biopsy but left the overall mass in place.

    The relatively good news is that the mass was not perihiliar but located inside the CBD, which is probably why the duct was significantly dilated at the pancreas end. Once we have an initial report on size, location and nature of the tumor we will book appointments with a cancer center and explore treatment options. I suppose further investigation will be required for exact location, as the MRCP was a bit misleading.

    We should have him back home by Wednesday at the outside depending on the LFT results after tomorrow. Then we look ahead to the next phase.

    Thanks for listening!

    #97259
    bglass
    Moderator

    Hi Sangram,

    Welcome to our community.  I hope moving your father to a cancer unit goes well.  This is news none of us wants to hear, so I understand your worries about explaining the diagnosis.

    In the U.S., one of the first pieces of advice after diagnosis is to find doctors having experience with this rare cancer, which usually means a major cancer center in an urban area.  Be sure to ask doctors you see if they have treated other cholangiocarcinoma patients.

    Your father is just at the beginning of this road, so it is premature to be worrying over prognosis comments.  Wait and see what the experts say and remember that a prognosis is like an average over many patients, so some will do better.

    There is a wealth of information here and on the Cholangiocarcinoma Foundation website.  If you use the search engine on the discussion board, you can find stories from other patients who have faced similar treatments or symptoms.

    Please keep us posted how your father is doing.

    Regards, Mary

     

    #97258
    sangram
    Participant

    Hello Kasia

    I am sorry to hear of your condition too, and hope and pray for your recovery.

     

    Hello positivity

    Thank you so much for that post, this is exactly my situation except that the ERCP has not yet been performed – and the BR count is quite high in my case. However I am happy to hear that the treatment is ongoing, and hope for the best for your mother.

    ————————————————

    Over the sleepless night, the view to withdraw him and refer him to an oncologist in a cancer research unit has crystallised and that is what we have decided to do, now the tough bit is to break the news and extricate him from the hospital with as little pain as possible. My father is a war veteran, but it’s been a while since he’s faced such bad news so I’m not sure how he will take it.

    Then we (hopefully) begin the slog of actual cancer treatment.

    Thanks for chiming in 🙂

    #97256
    positivity
    Participant

    When my mom was initially diagnosed with an ERCP and before the pathologist report, the GI doctor automatically inserted plastic stents, no questions asked.   The doctor made it seem that the stents were necessary right away to open the obstruction and her bilirubin level was only about 4.5 .   At the time I was unfamiliar with this rare condition and let the doctor make the decision, not that he asked for my advice, so it was part of the ERCP to get the biopsy sample and insert stents.  I heard the same talk from multiple doctors: rare cancer, no successful treatment, chemotherapy won’t work, surgery not possible, and I will end it here as the comments came rolling in one after another for the first few months.  It was a draining experience.  Once this experience was complete, we sought treatment options.  Check for other symptoms including the high bilirubin such as extreme itching and pain.  In this case the stents are needed right away to relieve symptoms.  This is something the doctor should discuss with you.

    #97255
    Kasia
    Participant

    I am sorry to hear about your father.  I am a Cholangiocarcinoma patient and had surgery in February and am currently on adjunct chemo.  My advise is to get him to a cancer research hospital as soon as possible and the advise of an oncologist who is familiar with his specific cancer.  It can make the difference between life and death as this is a rare cancer and requires an experienced oncologist and surgeon.  Good luck.

    #97254
    sangram
    Participant

    Hi

    I live in Calcutta, India – big hello to all of you!

    My 76-yr old dad looked very yellow last Friday. After scouting around a bit we admitted him to a general hospital (bilirubin was 16.8 on day of diagnosis, now at 22, six days later). MRCP scan showed a tumor in the joint between the two exit ducts.

    I have a choice between allowing the GI surgeon to put in a stent to allow the liver to drain – but possibly exciting the tumor, or to withdraw him from here and refer him to an oncologist in a cancer research center.

    What the GI is telling me without being medically specific, is that the tumor is essentially untreatable and the life expectancy is approximately six months. Dad will be furious as he asymptomatic besides for the yellow skin and was reasonably active even on the day of admission.

    I was hoping for some input on the risk-benefit evaluation of leaving the BR count high for a few more days while we get an oncologist’s view, versus putting in the stent immediately and in effect exciting the tumor but lowering the BR count right away. In any case only one of the two tubes can be opened up this way (there is some narrowing at the exit of the CBD) so the jaundice will not completely disappear.

    As is expected, the doctor may not have seen this kind of cancer before – it’s a very good hospital but not by any means one a cancer patient would go to. Obviously I’d have to furnish an AMA bond to this hospital in order to extract my father and also have to explain the situation to him (which is my bigger worry), but I’ll cross that bridge when I come to it.

    Thanks for any thoughts and advice you can provide.

    Have a great day,

    Sangram

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