Newly Diagnosed and Trying to Get Bilirubin Down – Help?
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Thanks for that Elizabeth. And if Peter does get to have the PDT remember all about the side effects of skin and eyes to light sensitivity, I really can not stress enough the importance of that and covering up against the sun for a few months! But I am sure all of that will be explained to you both in detail before the treatment starts. Keep us updated on everything Elizabeth.
My best to you both,
Gavin
Elizabeth –
I know the feeling. I wish I had found this site in the very beginning. We just kind of lucked along with everyone. It was crazy really because we went less than three weeks from diagnosis to his resection. I barely had time to think let alone do anything but basic research. I know it wouldn’t have changed anything but still too crazy.
The only doc we had an issue with up there was one GI doc who came in the first time be husband dealt with his sepsis and basically told us what we were going to do. When we asked questions and wanted to know the why’s about doing an ERCP and a stent he got really pissed and stomped out of the room. In hindsight we were absolutely right to do what we did.
Other than that I love the staff at Virginia Mason. I spent a total of 45 nights there with either my husband or our youngest son (thyroid cancer) in 2013 and April of this year. They were so good to me along with my husband.
Good luck and keeping my fingers crossed for you both.KrisV
@Gavin – Thanks for the kind message. Here’s the link to the trial we’re considering. We’ve just contacted Peter’s doctors to see if we can get PDT in a non-study setting. If not though, we’re going to finish the application process.
https://clinicaltrials.gov/ct2/show/NCT01755013?term=PDT+cholangiocarcinoma&rank=2
@kvolland – Thank for the welcome and for the recommendations – it’s so much better walking into a system with specific names and recs.Elizabeth –
Sorry to jump in late but I have had a busy few days. However welcome to the family.Second opinion, especially on surgery is a definite. My husband was told by the first surgeon and GI doc that he was inoperable. We traveled to Seattle and went to see the people there. I would suggest:
Surgeon – Dr Flavio Rocha – he is a hepatobiliary surgeon and he is wonderful. I think a less surgeon would have closed him up and said no way…..as it was Dr Rocha spent 14 hours in surgery and got clean margins on the second try. He was always receptive to any questions or concerns we had. Also he trained at Memorial Sloan Kettering with one of their top surgeons.
Then I would suggest for oncology Dr Vincent Piccozzi – the man is wonderful and he is so compassionate. He was always on the phone with us and every treatment he stuck his head in and said at least Hi. When my husband got so sick from one chemo he was always calling to check on us. They are also tied in with Seattle Cancer Care Alliance which expands all the treatment options.
There were others including Dr Yao who was the radiation oncologist and Dr Baliga the infections disease doc and Dr Larson who was our GI doc.
Wonderful people and so compassionate. Unfortunately my husband’s came back rather abruptly and he has just a few days after it was confirmed but they bought us two more years.
As for the bilirubin…..lots of fluids as this will help keep things flushing through Peter’s system. Eating a well balanced diet which sounds like you already are. Maybe getting stents changed or even an external drain may help….Mark’s got to 15 or 16 at one time and they did an external drain which brought it down to 7 until after surgery.
Hope this helps and if you have questions please feel free to email me.KrisV
Hi Elizabeth,
Glad to hear that my posts on PDT helped fill in the blanks and hope that the webinar did as well! Is this the study that you applied for at Weill?
https://clinicaltrials.gov/ct2/show/NCT01524146
Brought that up here just in case it is useful for anyone else reading this post. Please let us know how everything goes and hope that Peter is able to get on the trial if that is what he wants to do.
My best to you and Peter,
Gavin
@ Lainy, yes, I agree that humor is the best rx
In answer to your question, our ONC isn’t saying anything about the high bilirubin other than that it’s too high for gemcitabine, and his gastroenterologist said he didn’t know why it’s high either. I think we’re hopefully going to return to Mayo or go to MD soon and be able to be told more by someone who sees more people with CC.Also, am glad to hear that your colostomy went well (and that you’re staying so positive about it!), but in case you have any remaining symptoms, I wanted to pass along that Peter says 100% (rigid) adherence the SCD diet really helped his UC.
@DukeNukem: Ack! Thank you for the warning about insurance and genotyping!
@Iowagirl: Thanks for the thoughts on second and third opinions. Yes, I think we will be going to at least one – like you said, to get a sense of security on things.
@Gavin: Thank you for the welcome and all your posts! Ha – I’d actually read most of them in the weeks before introducing myself by searching things like “PDT”, but this filled in the blanks. Also, the webinar was really helpful – we are applying to a PDT trial at Weill, and are thinking about applying to OPUS too… but we’ve done enough reading on PDT that we definitely want it. That is, in OPUS, we’re worried about being in the control group.Hi Elizabeth,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about Peter, but glad that you have joined us all as you are in the best place for support and will get loads of each from everyone here. Thanks as well for sharing what is going on with you both.
Have you looked at the side effects part of the site as you will find lots of info there about dealing with various side effects of this cancer. My dad also struggled with the fatigue for a long time and he napped a lot during the day.
My dad also did PDT as his treatment here in Scotland back in 2008 and I wrote a bit about that at the time here on the site. Should you wish to search for my posts to read about that then you can. Just search under list – Gavin – all posts – and the posts about my dads treatment are on pages 320, 321 and 322, 323 and 324 I think. I’d put a link to them here but that doesn’t seem to be working these days and we all have to search ourselves now!
There was also a webinar done here on the site a few weeks ago about PDT and the OPUS trial if you are interested and that can be viewed here –
Please keep coming back here Elizabeth, we are here for you.
My best to you and Peter,
Gavin
Elizabeth, Thank you for sharing the info about Peter’s history , CC and treatment. And….unfortunately, there are problems to share too. I don’t have experience with bilirubin being high, so that isn’t something I can help you with. However, I would definitely either go back to Mayo Rochester or MD Anderson….or for that matter….get a 2nd opinion from both, if you are able to do that. Neither will be offended with you going elsewhere for another opinion. Both may end up agreeing with each other, but that may give you some sense of security. But, don’t rule out going to yet even a third place for an opinion. Maybe some of the others on here will give you their personal favorites. I , personally, went to Mayo Rochester because it is only 3 hours from us….and my case was very clear cut, and because of the status of my intrahepatic CC cancer, they offered a resection the next day. Yours is a different situation.
Julie T.
You might want to do some research on Virginia Mason (Seattle) (University of Washington Medical Center?) simply because they are closer. But Mayo and MDA are definitely top-shelf, no doubt about it.
One suggestion before you order genomic testing – make sure you KNOW if it is in-network or how much it will cost you based on your insurance coverage. My onc said she thought it was free. Guess again. Billed at $5000 but “only” paid $1000 because it was out-of-network. But, it’s the only game in town if you are looking for that level of info. I used FoundationOne but I think there are more out there.
Duke
Elizabeth, both Mayo and MDA are the tops so a lot of patients just go to the one that is closest to them. What does your ONC say about the high Bilie?
Interesting about the Colitis as I also had that. Really suffered the last 5 years and 5 weeks ago had a total Colostomy. I am 75 and sailed right through it. Wish I had done it sooner but the only bag I wanted to wear could be bought at Macy’s! Now I have my pouch who I named Orville as he is always making a popping noise that cracks me up.
Humor is the best RX even when one is down and out!
I think, and I am not a pro, but if Peter is being treated in Alaska they have not seen much of CC and I would def. go back to Mayo or if you want MDA is a good choice too. Please keep us informed. Wed. are always kind of quiet but I am sure you will be hearing from more family soon.Dear Lainy,
Thank you for the warm welcome and for all your previous posts – I’ve read a good number of them in the past few weeks
Also, thanks for the suggestion to ask his doctor about replacing the stents. We’d heard they needed to be replaced at three months rather than six weeks to three months, so that’s good new info.
Unfortunately Peter can’t have Carnation Instant Breakfast because he’s on the Specific Carbohydrate Diet to control his Ulcerative Colitis. But, we have been making yogurt breakfast smoothies with lots of fruits and veggies, so it sounds like we’re sort of on the same wavelength here
Peter is being treated at Alaska regional, but his diagnosis was at Mayo (Rochester). We’re thinking of going back there to see if we can’t get his bilirubin down and/or to get some other treatments, but we’re also thinking of going to MD Anderson. There are no major cancer centers up here, so we have to travel for any sort of complicated treatment anyway. Do you (or anyone?) have any thoughts on Mayo vs. MD Anderson? Peter had a really good experience at Mayo, but we’ve heard MD treats more cholangio patients and are wondering if their radiotherapy division is maybe a little bit more aggressive.
All the best,
ElizabethDear Elizabeth, welcome to the best place to be for CC support although we are sorry you had to find us. Peter could be tired from the Chemo and it sounds as though perhaps the stents could be clogged. I would ask his ONC. Are the stents plastic or metal? Plastic stents need to be changed like every 6 weeks to 3 months or they can clog and cause infections. How about trying a nutrition drink in the morning. Teddy loved the Carnation Instant Breakfast, the vanilla and then I would blend in a banana. Eating good is great but the chemo still attacks other things and Peter may need that extra boost of nutrients. Where is he being treated? And never forget about 2nd and 3rd opinions! Please keep us updated as we truly care.
Hi All,
My name is Elizabeth, and my partner Peter was diagnosed with cholangiocarcinoma in early April. I’ve been reading these boards for a while now and am really thankful for them.
I’m not sure exactly where to start. Peter is 29, and I’m 28. This wasn’t entirely unexpected – he’s known that he has PSC (a risk factor for this) since he was 22 or so.
His tumor is advanced, between 5 and 7cm. Transplantation/resection aren’t options. The tumor is hilar (extra hepatic) and there are a few lesions on his liver. It doesn’t seem to have metastasized anywhere else. He’s just started his first round of FOLFOX. He has four internal stents and one percutaneous drain.
Our largest problems right now are that he’s fatigued and that his bilirubin is high – it tends to hover around 17. Among other things the high bilirubin means he can’t use gemcitabine and that he’s ineligible for many clinical trials. Have any of you had any success with getting yours or that of a loved one’s down?
He’d also really appreciate any suggestions for how to become less fatigued – he’s eating healthy (he follows the SCD diet to control his ulcerative colitis) and has good sleeping habits, but he’s just so tired.
Finally, if anyone has any suggestions for clinical trials or treatments – or just general advice – we’d love to hear them. As of now, we’re planning on seeing how the FOLFOX goes, but are also planning on doing genotyping to see if he has any mutations that mean certain types of chemo would work better than others. We’re also looking into different types of radiotherapy, different types of ablations, and PDT.
All the best to you and yours,
Elizabeth
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