Forum Replies Created
Dear Michelle –
It’s so frustrating, isn’t it? Please call and talk to the doctor and tell him your concerns. As you know, my Dad’s bili never came down enough even after two external drains were placed. I found that once we started being proactive (ie harrassing the doctors, we got a lot more feedback.
I do hope your Dad is feeling better.
Dear Margaret and Blair,
I am so very sorry to hear about Ron. He was very supportive to me on this board when I was posting about my Dad, who passed away on Oct 20. I am thinking of you and your family during this very difficult time.
I am so very sorry about your sister. You and your family are in my thoughts and prayers.
Thank you everyone. It’s amazing how life just moves on all around you.
The first day home was interesting. Dad suddenly decided he wanted to go to the bathroom in his own bathroom. Got the walker and my Mom took him and then he couldn’t get up and couldn’t breathe. It was a flurry of trying to hook up the oxygen tank and getting the wheelchair open. Needless to say, he didn’t try that again. He’s been in the bed most of the time – his urine output is practically nothing (meaning nothing for several days, then a little, etc.). He is still drinking and I heard that he ate a little bit this morning, which is surprising to me.
The hardest part is his anxiety, but they seem to have that under control as of yesterday. He is in and out of it, which is also hard. He’s not the Dad I remember – as you say in your post above. He wants no visitors except for me and my Mom.
I am stuck between wanting to hold on to him and wishing he would just go to sleep and pass peacefully.
The hospice nurse on Sat said she thought he had a week or less. I don’t know what to think. I do believe that it will be soon.
Thank you so much – this was the exact information I was looking for.
I do feel like it’s an important time for us to be together. His comfort is the most important thing right now, and I suppose Hospice is the best for that.
I’m sorry that you had to go through that as well, and such a short time ago. But I appreciate so much that you’ve shared your experience with me.
God bless you and your family-
Kris – I am crying my eyes out reading your post. You are such an amazing person. I’m not the one having to go through this horrible cancer, it’s my Dad, but you are the one comforting me.
I’m glad I’m not the only one who’s mad at the whole breast cancer thing – it’s the same example I give to people when I get so mad at this. There SHOULD be a cholangiocarcinoma month. There should be more research and more awareness. I’ve been on this board since my Dad got sick, but I haven’t spoken much about myself. I have worked in clinical research (clinical trials) for my entire career – 16 years. I work on studies to get new drugs approved by the FDA. I’ve worked on oncology studies and up to this point had never even heard of this cancer. Once my time frees up a bit, I want to help in any way I can with people suffering from this. If my background and experience can help in anyway I want to do it. It may not be in time to help my Dad, but maybe it will help someone else’s Dad or loved one.
God bless all of you and your families
Thank you everyone! My Dad came through the surgery very well last night! I left him in ICU at 8:00 last night and he was watching the Patriots game – it was unbelievable! They were sure he would still be on the ventilator, but he only needs his oxygen mask so far. He will be in ICU for several days while they watch his chest drain. I think his bilirubin is down to about 11 or so (from 27) so that’s a good sign. Surgeon thought we would have some results back today from the biopsies. His insulin has continually been high and his kidneys are still in tough shape, but we passed another hurdle and I’m going to breathe a sigh of relief for the day
Best to all –
Hi all –
Thanks for your replies. BethT – thanks for your information. Maybe this is what they are thinking for my Dad? I don’t want this to delay his chemo. So it looks like maybe it won’t. Lainy – he has had multiple MRIs, CT scans and 3 ERCPs. All brushings came back inconclusive. He also had a bronchoscopy as something is going on in his lungs – also inconclusive. So they don’t have a ’tissue’ diagnosis of CC, but all signs point to it. The oncologist originally told my Dad they could go in surgically to get a tissue sample (liver maybe?) but that the recovery would be 6-8 weeks and it would be high risk b/c his bilirubin is so high and he’s so sick. So my Dad opted to just start chemo which the onc agreed with. Now oncologist called back and said she wants him to speak with the surgeon. Why? I don’t know. For staging purposes? Just to look around? This is just so frustrating.
Hi everyone –
Dad received his cholangiocarcinoma diagnosis today at Dana Farber. He begins chemo on Friday. I wasn’t at his appt today, so I’m not sure of the exact regimen. I’ll be back on the other discussion boards with questions once I know more about the plan.
Hi all –
Thanks for your words of support! My Dad had a PET scan yesterday and we have an appt with his gastro tomorrow afternoon for results (hopefully!). He then has an appt at Dana-Farber in Boston on Monday. I’m glad at least that they’ve moved fairly quickly in getting him to an oncologist (although it’s never quick enough). I will update everyone once I know as I’m sure I will have tons of questions about treatment.
Hi Lainy –
Yes he’s had several MRIs, a CT scan and today he’s having another CT and ultrasound. I think it’s for his kidney, but??? His symptoms came on fairly quickly – jaundice, feeling full when eating, itching, weight loss. He doesn’t want me to come into the hospital today. He is “supposed” to get some results this afternoon. Another ERCP tomorrow and possibly a liver biopsy. I feel for everyone on this board who has to deal with this horrible thing. Thanks for your post!