gardengirl14

Hello and thank you Marion, Debbie Laing and Circlea5 for responding to me. It is so helpful to find community here when things are happening at such a frightening pace. I am sorry to have delayed responding..my caregiving role has amplified with our two children out of school now too.

In my haste to get some help from you I realize that I did omit some details. Lainy and Debbie asked about what had been done to try to get the bilirubin levels down. A surgeon was able to insert one stent via ERCP back in early June which has done some work to reduce bilirubin levels but not enough. The tissue/tumour is inside the bile duct and is blocking the flow. In mid June he was sent for insertion of a Percutaenous drain but that was not successful. The Interventional radiologist and hospital oncologist felt this was due to a spread of the disease up the biliary tree or perhaps a autoimmune disease that may have caused scarring. At any rate, they felt that there was no point in trying this route again or trying for another site.

We have been waiting anxiously for this one stent to work and have been trying to explore any options that might be possible without a healthy level of bilirubin. We thought that perhaps some of the immunotherapy treatments might be a possibility but some of the trials that we have explored are not open to someone who has the liver function levels my husband has. Yesterday, the radiation oncologist at our local cancer centre decided to try giving my husband a single dose of radiation to his bile duct in the hope that it would kill back some tissue growth and allow bile to flow to get his bilirubin levels down. He was not 100% certain that this would work but we decided to go for it in hopes that it might give him a chance at least to have some treatment. Has anyone every heard of this being done?

We have asked for 2nd and 3rd opinions re surgery and other treatments and these are in the works. His case is being brought to a tumour board in Ottawa and our oncologist is sending a note of referral to Princess Margaret in Toronto. I pray that he will have enough time to benefit from this. He is so much weaker than he was and has lost 35 pounds since April.

Circlea5…thank you for reaching out..even in your grief. I read your story and it resonated with me as the onset and our husband’s ages are so close..and like you I don’t understand how someone can be so sick and not feel it and then when it is identified they are unwell..to have so little time to do anything about it. I am so sorry you were not given the time to have the conversations you wanted and deserved to have….I hope in time you will get some answers to help soothe some of the pain you must be feeling.