Didn’t go as well as we hoped/Very high ALKP
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Hi Andie,
My dad is not too bad, struggling a bit with the side effects as he comes to the end of his chemotherapy – six cycles of Xeloda. He is on the Bilcap trial. He has a scan to see what is happening on 4th August, so it’s all fingers crossed.
Your dad will be tired out, lying in a hospital is so tiring and the less you do, the less you are able to do. I’m so hoping that he’ll be able to start the chemo soon with his bilirubin levels down.
Thanks Katja,
I don’t really want to go but Dad is insisting so I have compromised and said I will come home Thursday night if he has the cholangiogram and gets the results next week. If it’s the week after my husband is scheduled to have his wisdom teeth out on the Friday so I will be inbetween 2 hospitals 2 hours drive away from each other!
Dad seems a little breathless today, I’m not sure if jaundice causes this or whether it’s because it was his first day out in 2 weeks yesterday and the travelling and hospital appointments tired him out.
He is drinking lots. Fingers crossed it’s just another blip in this rollercoaster ride and the results next week will be ok.
How is your Dad getting on? Was he on a clinical trial?
Best wishes
x
Hi Andie,
Hoping forr your dad to get some respite, remember to keep him drinking loads and loads of water.I hope you can go on your little holiday and try to enjoy it, have some fun stories to tell your dad when you get back. Just before my dad’s surgery we cancelled a break, in hind sight I think he felt guilty that we didn’t go, and it would have been a pick me up for him to have heard that we had a nice time
x
Hi Rick,
Thanks again for your answers. Dad has a metal stent but they put an external drain on when they put his stent in. They capped it off a few days after his stent was put in and around this time he got a very bad bacterial infection. Whilst Dad had this they put the drain back on and gave him IV antibiotics. After 3 days they did a cholangiogram and the dye was going around the ducts ok so they capped the drain off again and let Dad out of hospital. The plan was to have to drain took out completely yesterday but because his bile level had only come down 16 in 10 days they didn’t take it out as he now has to go for another Cholangiogram.
He is really down at the moment because he is no futher forward than when he was diagnosed in April and is desperate for chemo to start. Damn those bilirubin levels!!
Andie,
If your Dad is just getting over an infection then that could certainly be the cause of the elevation in ALK PHOS. Looks like his other liver functions are good, so not even close to liver failure! Bilirubin takes time to come down after a stenting procedure. It sounds like he has an external drain – have you thought about an internal stent at all? These do a great job of drainage and there is no bag to contend with.
I would ask for some followup bloodwork in a few days to see if that Alk Phos comes down because it could be a signal that the infection is still looming. Your Dad should stay on the lookout for other signs as well such as fever, chills, pain. But it could just be that it takes awhile for this enzyeme to return to previous levels after the infection.
Rick
Thank you so much Rick, my mind seems to be overdrive lately! I’m hoping then that his bile ducts are still inflammed after all that they have been through with the stenting and bacterial infection he has had the past 2 weeks, he finished his antibiotics Wednesday. The worry is that ALKP have risen but I wonder if this could be because they have capped his drain off and the bile ducts are having to do more of the work? My husband has told me to try and stay positive because even though it hasn’t fallen alot the bilirubin as still come down. It’s the waiting and not knowing which is the hardest. His AST was 39 and his WBC was 9.7, and ALB 25.
Best wishes to you Rick and also Kris.
Alk Phosphatase is an enzeyme that is let off by the bones and by the liver. It is elevated in liver conditions when the bile ducts are inflammed. My own levels seems to fluctuate quite a bit and also get high when I have an infection coming or already onset (called Cholangitis). That would be the biggest concern and is easily treated with antibiotics. So, your Dads’ physicans should be keeping an eye on that as well as the other Liver Function Test (AST, ALT, AlK PHOS, Bilirubin).
The Alk Phos level by itself does not mean that he is in liver failure. It is the other levels such as the AST and ALT which are more meaningful for liver damage and function.
Best of look to your and your Dad.
Rick
I dont know what it means Andie, but hang in there someone might know and pop in soon. Sending hugs.
Kris
Dad went back to have his blood checked and his bilirubin as only fell by 16. It is now 294. He has to go back to have the dye put round his bile ducts to see what is happening, so more waiting. I am supposed to be going away Monday and Dad still wants me to go, so I have said I will come back a day early so I can be with him when he gets his results on the Friday.
All his other blood levels are going in the right direction, his WBC and HB were back to normal but his ALKP has gone sky high. It is now 1289, the doctor didn’t mention this reading but I compared it to when he came out and it has gone up from 895. Does this mean his Liver is failing?
I feel emotionally drained and the look on Dads face when he was told he’d got to go back in made my heart break. I tried to be positive and said well at least the bilirubin hadn’t gone up and all other results were ok, but deep down inside I think something is going wrong. He desperately needs to start chemo and I can’t see this happening.
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