anniechandler
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If I may, I’d like to send this discussion thread out to Oncology Nurse and Patient Advocate, KarenD, regarding this theory and study. I would like to hear your opinion regarding this association. Also, if you have some idea of how long ICC may have been present before diagnosis; specifically if passing occurred within 12 weeks from diagnosis/clinical symptoms.
Thanks ahead, KarenD:)
Here is a relatively recent retrospective study (I just found) by the reputable NCI in Bethesda, Maryland. This lends credence to my theory of linkage between gallstones and/or cholecystectomy with development of biliary tree cancer or cholangiocarcinoma (even after months or years).
http://aje.oxfordjournals.org/content/179/6/731.full
I guess that bloodtest is used to look for a different kind of cancer….a type of bone marrow cancer that causes pain and weakness in the legs….similar to neuropathy. A nurse hospice friend of mine says, it would not have caught the bile duct CA any sooner.
Curious in the test, in that it was ordered by a neurologist for idiopathic burning leg pain, earlier this year in Feb. We were turned off by this particular doctor, so we went to pain management instead; where MRI of low back was ordered (unremarkable). Never did do the blood test, so curious if that one would have uncovered CC earlier in the year (thus, earlier stage, more treatment options, etc.) . It just bothers me so that this cancer was detected so late in the game. Dad was already so weak by the time it was revealed via CT/MRI. He only got one gem infusion in September…after that, bloodclots, severe ascites, vomiting bile, shutdown of digestive tract, etc.
I am told this serum immunofixation blood test specifically helps reveal Multiple Myeloma, but I read it can help pick up other cancers.Dear Lainy,
Thanks for writing and your advice. We did not go Hospice route for the end-of-life, but opted to stay in-patient at local cancer center to treat any complications that developed (for example, lots of ascites draining after the first paracentesis, NG tube to drain copious amounts of bile due to paralytic ileus that arose, etc.). Dad also had a very painful decub ulcer on his butt by then. Even every 2-3 hour repositioning/boosting of his body in bed by nursing staff, was very painful for him. Taking him home for home care would not have been feasible. Social work/discharge planning from Day 1 of in-patient, brought up choices of nursing home, hospice, or home care, but my family and I thought it best to keep treating symptoms at the cancer center. My Dad respected life and wanted to live and I know he wanted to treat what could be treated. We could not bring ourselves to sign DNR until last two days of his life; so heartbreaking and stressful.
I can only hope all the decisions we made as HC proxys for Dad, did not cause him anymore suffering, distress; this makes me feel distraught.
Annie
Hi all…
Dad passed away mid-month, in-patient in the cancer center. He had an NG tube due to paralytic ileus since beginning of the month, as well as ascites drain. Three days before death, we allowed PIC. line for TPN, as he had not been eating for a while. I was with him day and night, for the last four days of his life there. Three days before passing, he breathily told me he could not breathe (last words I ever heard him utter). CT scan showed bilateral lung clots. We allowed treatment with heparin, and if GI bleeding were to occur, blood products (we signed DNR). His breathing started to change two days later. We were not prepared or warned of the multi-hour, fast-paced breathing rattle of the last day. Horrified, I cried much of the day, as it was devastating to witness. One nurse asked why I was crying…..(really?….too long on the job, maybe?). Dad was receiving methadone and hydromorphone prn. Only three hours before death, did they give scopolamine patch and lorazepam. With hindsight, I wonder why not morphine, as I hear that is given frequently at the end. I am tormented that my Dad may have suffered conscious pain and suffering, especially since the detection of lung blood clots, and could not longer express. I wish they had offered to transfer to ICU (with more nursing attention), but not sure if due to signing DNR, that option was out. I also worry that maybe Hospice would have created a more peaceful death, but we refused thinking, cancer center could prolong life more with symptomatic management (e.g., CT scanning when blood clot(s) suspected).
I am not coping well at all, with how my father’s CC was discovered advanced, subsequently his health went down so fast (discovery of CC in late July). I also feel that primary care missed opportunities to monitor this man’s organs, as he attended geriatric/internal med office visits every three months.
Heartbroken and tormented…
AnnieThank you for your advice and reply. I wondering….as Dad is inpatient at cancer center, did Teddy have a DNR in place? We are having family difficulty with this decision.
