Update on my husband after failed ERCP – Devastating news
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Dear Phil,
I am saddened to read your post. I will pray for you and Gerry. I hope someone can offer you another kind of treatment. I will never give up hope that something might help. We are all here for you. I wish you all the best.
I wish I could do more to help.Love, -Pam
Phil,I am very sorry to hear you received such bad news.Can they put an external drain in if they can’t do ERCP? Also, my husband is on ursodiol which is a bile thinner, you could ask about this.We have a healthcare power of attorney set up for my husband and wills already done. You may want to talk to Gerry about what all he wants done to preserve his life and maybe even talk about a DNR ( do not resuscitate) order and also funeral arrangements. These things are not easy to talk about, but I feel better in knowing exactly what my husband wants.
Dear Phil,
I’m so sorry you have had to recieve this news. I know what it feels like as
your post brought it all back about my Dad. When he was first diagnosed in April 2010 he too was told to go home. The hospital couldn’t fit a stent via ERCP so he was transferred to another hospital and had one fitted via PTC. Chemo wasn’t an option either due to Dads bilirubin levels always being too high. We did get second opinions but the outcome was the same, it was inoperable. BUT Dad went on to have 3 stents fitted via PTC and although in the end he had an external drain bag, my Dad was never in any pain and as for the first doctors saying my Dad had 2 months, well he proved them wrong, he fought another 10 months. No one has an expiry date stamped on them, Doctors aren’t God and everyone handles this cc journey differently, this is what is so unpredictable about cc.We live in the UK. Dad did get his will sorted out on hearing this news, and also had to give up his job. We also got a second opinion to put our mind at rest that we had tried every option. Dad started taking hot water and fresh lemon juice every morning and night to help keep the bile thin. He also had tomatoe juice for the same reason. He had smaller meals more often rather than large meals, he drank lots and lots of water and squash to help flush the bile. He also had ensure drinks to help build him up.
You could look into trials or perhaps cyberknife?
Most importantly Phil, don’t give up, enjoy your time together, make memories, love each other, we are all here for you both. xx
Dear Phil
My heart goes out to you both. I have no words to express how much I feel for you or that will help with the disbelief and shock that you are feeling. But please know that I am sending you huge hugs.
Thinking of you and wishing you strength.
Elsie
(We’re from Sydney too)Dear Phil & Gerry,
I don’t have any answers for you but want you to know that my thought’s and prayers are with you both.
Love & Hugs,
DarlaPhil,
I’m sorry to hear this. I will be thinking and praying for you both. Are you able to get another opinion?
Best wishes-
Susie
Oh, Phil, I am so sorry to hear. You’re right, this cancer is awful. They are having new trials opening all the time. Did you check the trials and alternate therapy page?
I don’t have words for you other than I’m sorry for your news. I hope you find some answers that will help Gerry. My thoughts and prayers are with you.Kris
Crushing news about my husband. Yesterday the Oncologist mainly called us in to tell us that Gerry did not have long to live. He said that chemo could be given but in Gerry’s case it may not do him any good. Basically he said to go home and …. We were in complete disbelief, he said the MRI result was reported by an experienced MRI specialist and hence he supported it. We also met the Surgeon who mentioned to us earlier that he was not in total belief of the MRI scan and was doing his own investigation but that is being carried out very slowly (I hate this medical system). He now says that the Pet scan would be done only after him consulting with some of the radiologists to see whether it is worth doing a PET.
If that is ok and the tumour is localised then he may try to go in again and see if surgery is possible. Note Gerard did have Whipples in 2009 August. He will only be able to give us an answer by Thursday or Friday this week. If surgery is not possible then they will try and do the PTC as now Gerard is turning yellow, (note ERCP was unsuccessful) his ALT is 895, GGT 546 and Tumour Markers 2449. I was speechless when I came home, yes thanks to all of you I am stronger than I thought I would be. I cannot explain the internal turmoil. He also mentioned that Gerard can have weeks or a few months left. How about alternative therapies? Is there anything out there that we can try?
What sort of paperwork do I need to get ready, Will…… Please help. This cancer is awful. I have received more answers and assistance from this webiste rather than the doctors. Godbless you all
Phil
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