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Wyatt,
Very sorry to hear you lost your dad so soon. There never seems to be enough time. Allow yourself the time to grieve this significant loss. The love you shared will always be with you.Shelley
My husband had what they dx as reflux for years and treated with tecta. January- May 2016 appatite decreased and gradual increase in feeling of fullness and by june bis weight loss. Lab work showed elevated liver enzymes, followed by ultasound and ct that lead to ICC dx. I agree the disease likely was years but significant symptoms did not happen until late stage unfortunately.
So sorry to hear this sad news. I had read some of your dads posts and checked his twitter where he was always advocating for better care for cancer patients. My husbands has the same disease here in NS and our thoughts are with your family.
Shelley and Rick
Hi CHIguy2016,
Welcome from another maritimer and glad you found this great site. So happy to hear of your positive experience with your healthcare. It sounds like you got dx, stent, surgery, and now chemo in short order which is awesome. What was your dx? Did they get a biopsy? Intrahepatic? Hilar? Did they stage your cancer? Who performed your surgery? Did you see a gastroenterologist in Halifax for stent or on PEI? Sorry for all the ???
My 58 year old husband was dx June, 2016 and has been having stents replaced every 3 months sense then in Halifax. Not currently operable. No positive biopsy yet. Also irish genes…county wexford so who knows about the genetic predisposition but certainly bad luck.
Thanks for sharing you positive experience and hope to keep hearing from you.
ShelleyHi, my experience with my husband is when the stents are placed effectively his feeling of fullness lessens /disappears and he feels more like himself in a couple of days. Never hesitate to say things dont seem right or are not working…they may be able to do better.
Shelley
Hi Wyatt, welcome to this wonderful rich site that my husband and i unfortunately were blessed to find this past summer following cc dx. Just wanted to share with you that my husbands first stent was not far enough into the liver to open the bile duct strictures hence his jaundice worsened. Following an MRI they were able to see exactly where the strictures were (intrahepatic-left and right hepatic ducts) and place stents more accurately in these locations…his yellow drained before our eyes and what a relief he had within hours. it might help to get another opinion on jaundice relief. All the best.
Shelley
Hi Allison,
Sorry you and your family had to find this site but you have come to the greatest place for resources and support. If you look back at my posts you will see our story started in June, 2016. My husband has had an ultrasound, many CT scans, MRI, 3 ERCPs, and lots of bloodwork. He continues to have no tissue dx….this is difficult to get on some patients with small intrahepatic strictures we understand ( there have been attempts with results being inconclusive or benign tissue). Stents placed up into hepatic left and right ducts have provided great symptom relief for now and no other treatment has started as of yet. While we were initially told this was inoperable we have consulted further and are awaiting this opinion.
Read as much as you can about cholangiocarcinoma as that will help you ask great questions and advocate for the tx and care you decide upon.
We continue to be surprised at the # from NS here…are our rates higher or we just seek out these great resources more often. Reading the questions and responses, the newest research posts, and the site info here have really helped us. All the best and hope to hear some good news for your family.Hi Katherine and Billy,
Welcome to this great supportive group. My husband was just recently diagnosed and finds it hard to read many posts here as well so I do much of the reading and share and show him posts that are relevant to where he is at so as not to far ahead with potential negetives. As for the travel it is often me who wants to “get out of town” …its not that he would not want to but not now with the way he is feeling or with the fear of fever and having to go to hospital elsewhere etc. It has meant shorter jaunts so he can sleep in his own bed (sleep has become #1). Wishing you wellness through your chemo and a nice long weekend somewhere.My husband has had stents since june with 2 replacements. What you describe with indigestion, fullness, and feeling better when not eating is bang on when there is an obstruction of the bile duct. If stents are working well this goes away almost completely and my husband has benefitted from this thank goodness. If after stent placement you dont have relief within a few days let your gastroenterologist/physician know. All the best and hope you get relief soon.
Thanks Scott for sharing your local experience.
Update:
The spyglass biopsy came back stating tissue is benign. Gastroenterologist seeing it during procedure thought it looked like a cholangio. CT showed little change from a few months ago. Have a consult with Princess Margaret Toronto surgeon in just over a week to talk about surgical possibilities (surgery not an option in our tertiary care center). 2 new #10 french stents in place and feeling ok.
Wondering about accuracy of spyglass…we kind of expected either inconclusive or positive but not a statement that the tissue was benign normal bile duct tissue. Experience out there?
Continue to benefit from the experiential expertise of this group. Happy weekend everyone.Yes it is sad to see there are others with cc in NS but nice to have this forum to share. We started our journey in June, 2016. I think i read you were sending your test results off to Mayo clinic…how has that gone? You mentioned a tumor board…what is this? What Drs are you working with? Have you been treated in Halifax only?
