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Erin –
I’ve had paracentesis done a bunch of times and it’s not bad at all – I know it sounds awful and I hate needles. The relief it provides from the inability to breath and overall general uncomfortable pressure has always been an easy choice for me. My weight is increasing yet again and I won’t hesitate to have it drained. Just info from someone in the trenches.
Hi Trish – If your able to get the blood tests done, make sure they include the direct bilirubin as well as the total bilirubin (not sure why some labs skip it, silly). If the itching is caused by some impeded bile flow, the ratio of the total/direct will usually increase before most other things become more obvious. Kinda like a little canary in the mine shaft deal. You don’t need to be jaundice to have enough bile back flow and bile acid in the blood to cause some itching issues.
Thank you for the link.
I had seen that before but hoped that there was a sort of “pardon system” for PSC patients who had ICC but were showing no signs of recurrence. Certainly the chances of recurrences are very high and it’s understandable that there is a reluctance to risk the LT.
A quick update and seemly no progress.
The second round of needle biopsies were negative again but they said things looked unusual. They want to wait for 3 more weeks and do another MRI/MRCP in February which makes it 3 months since the previous MRI. Meanwhile my liver enzymes have been slowly increasing (now up to: alt=37,ast=44) and the alp remains elevated around 180 or so. The WBC count is still high at 10 and my serum calcium level has slowly risen to 10.7, slightly above the normal high (I’ve read that CC can cause hypercalcemia ??).
Now I have the Univ of Mich Hospital involved as well for the second opinion and should hear back from them soon. They’ve taken my case to their tumor board for any additional input.
Waiting hardly seems like the thing to do but there seem to be no other choice. Multiple doctors have concluded that the MRI results indicate ICC but they remain reluctant to commit to surgery or any other course of action.
Hi Paul –
Sorry to see you here but there are great people on board this site that can hopefully help you out.
I just joined myself, ICC, and amazingly, I live in Shelby Twp as well. Not sure what the odds of that are but “welcome neighbor” even if it’s under these unfortunate circumstances.
I just had a meeting this morning with the surgeons at Univ of Mich Hospital to talk about options. Currently I’m being treated at Beaumont – Royal Oak. They both seem to be very good treatment centers and Beaumont took care of my kidney cancer in the past.
What a wonderful site this is, thankyou!
I’ll be going in again for the biopsy so I hope this new set of doctors will give it the best chance of a proper sampling. We’ll see.
Seems quite a number of others have had different forms of cancer in the past. Myself included, renal cell carcinoma, and missing some plumbing because of it. Is there any strange correlation with this or just bad luck?
