rick-kamp
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Hey Kathy,
Thanks for the feedback. Do you have metallic stent(s) as well? How did they declog you? Was it just a dilation or did they put new stents in? Also – did they tell you why your stent was clogged? Was it tumor ingrowth or sludge, or anything to do with cancer advancement?
Sorry for all the questions, I’m just very anxious to see what is found and to get this overwith. I was fit in to Mayo next week to have an ERCP and a consult done, so I’m glad that decision is overwith and that they got me in so quickly – just 2 business days considering the long weekend!
Rick
Heather,
I am so sorry to hear about the loss of your sister. It resonates with me that she was young because I am only 32 myself and have a 3 year old daughter and a 7 month old son. I understand your frustration as I am considered terminal as well.
You and your family will be in my prayers that you will feel God’s hand lifting you up in this desperate time.
Rick
Jennifer,
I agree with the others – this is simply horrible that they can’t get around to helping your Dad and kicked him out of his room. Talk about inefficiencies in health care – If they would have fixed him up as an outpatient last week he would be recovering now and insurance wouldn’t have had to pay for all of the hospital time in the first place!
Rick
Thank you Kris and Pam for the replys. I am probably just a worry wort when it comes to the this. The symptoms have gone away for the last day or 2 and I’m thinking it might be more allergy related but I’ll still bring it up with my ONC. I have a scan scheduled for this coming Thursday anyway and that should clear it up.
Unfortunately though, I am now noticing a little bit of yellowing in my eyes and skin. It is very faint but I’m fairly sure it is the begining of jaundice as my urine has become darker as well. So frustrating. I’m not sure if it is a result of the cholangitis infection or if it is tumor or stent related. I know that the bilirubin levles can go up with a cholangitis infection so I’m hoping that is what is causing this and not tumor advancement. I will be incredibly anxious to get my scan done next week and get the results from it.
Has anyone else experienced jaundice that was related to a cholangitis infection?
Rick
I grew up listening to Ernie’s broadcasts of the Tiger’s baseball games. I literally heard him talk on the radio for hundreds, if not thousands of hours. He was a good man and well respected here in Michigan. Hopefully he will bring some more awareness to this cancer, much like Payton did.
Rick
Kris,
Sorry to hear about the frustrations! Wouldn’t you think they would do something to get you a “fit in” for the CT scan since they dropped the ball on you? Maybe a repeat call to the scheduler with some extra empahsis would help?
I’m sorry you have to deal with this. Hang in there. I’m still praying that the treatment will be effective and worth the time away from home.
Rick
Dianne,
I strongly recommend that you lookup and contact our member RAYE. He went through the international program with Mayo Clinic and I know he had a bump or 2 in the road, but it was well worth his hassle to consult there.
I believe that you need to work out some sort of payment arrangements with your insurance carrier and get approval but after that I don’t think you have any out of pocket costs. Mayo Clinic, like any other hospital, needs to secure payment for their services and since you are international they have different policies. Hopefully you can work this out. It might be worth the 2nd opinion.
Rick
Marion,
Thank you for this post. Your observations are very good and your point regarding Pancreatic Cancer is well taken. Although my time and energy are very well divided between work, family, and recovery from chemo – if there is something more I can do to advance the cause I would like to try.
I am considering asking for memorial contributions to medical research at my funeral someday (hopefully later rather than sooner!), either to PSC or cholangiocarcinoma. I know that is one small way to contribute. I also believe that this foundation is a great start and people are finding their way here for help in finding treatment. If enough knowledgeable people are available to help provide direction here, that is a good step in the right direction as well. I am particullarly passionate about helping others who might be able to use liver transplantation as a treatment option, and those that progress to cancer as a result of PSC.
So – I can understand the lack of advancement in treatment for cholangiocarcinoma and the lack of research – but I do understand the reasons why. Thank you for pointing them out.
Rick
Lisa,
So glad you had a good time. I want to see those pics – sending out a friend request now.
Rick
Dianne,
It is good that the stent is in place, but the bile duct can still narrow in other areas, stones could slow bile down, or sludge could build up. And the stent itself can cause some irritation and buildup of bacteria/clogging. It is not necessarily a bad thing or even something you can put your finger on, it just comes with the territory sometimes. I’m not sure how the antibiotics interfere with other meds, but Cipro would be the first line drug to treat cholangitis – 500mg 2X per day.
I’ve had 2 bouts with it and neither had any clinical significance for me such as tumor growth or stent clogging, etc – it just happened. In any case, you should call the Dr. and report the fever – even if it is getting better (if he took tylenol that would artificially lower it).
Best of luck!
Rick
cvertz,
I am sorry to hear about your fiancee. I also suffered from UC for many years and then PSC as well (Primary sclerosing cholangitis). Since your fiance has UC, it is quite possible that she also has PSC which can appear on imaging to look like cholangiocarcinoma. It also causes inflammation in the lymph nodes which can make them appear as cancerous but really be benign. It is important that her Dr’s know whether or not she has PSC in addition to her cancer. It can make a difference in the treatment choices that are offered and it may mean that the lymph nodes are not involved.
This is a stretch, but if the PSC explains away the multiple tumors (instead they are PSC disease related strictures) and the lymph nodes, then Kelly may be eligible for surgery. Also – if it is PSC related then I highly recommend going to Mayo Clinic in Rochester and seeing Dr. Gores. He is an expert in cholangiocarcinoma and knows PSC well. If things fall in line, there is a treatment option that involves liver transplantation that is highly curative. Please keep in mind that I am saying this is a stretch, but it IS something that you should definately have checked out. The UC/autoimmune disease strikes a cord with my own experiences and knowledge of these diseases. Go see Dr. Gores at Mayo Clinic – or at least send him your records for review.
All my best. I know this is a difficult time for you. I am young also (32) and have a wonderful wife and 2 very young kids. My greatest wish is to always be here with them and for them. Although I am the one with the cancer I think I can understand how you are feeling.
Rick
I am really doubting whether the Dr’s have enough evidence to diagnose this is a Klatskin tumor. Certainly the stricture seems suspect, but was there any biopsy or cytology done on it? Strictures can be benign (as your research mentions!) and I’m suprised that the Dr’s are convinced that this is cancer with the lack of other evidence. The elevation of tumor markers CA 19-9 can be elevated in ANY kind of blockage and the gallstone certainly could be the cause of this.
I think it would be prudent to have a confirmed biopsy and re-evalute CA 19-9 levels after the obstruction has cleared for a week before starting on a chemotherapy regiment. You would hate to let your grandma go through chemo if the Dr’s were wrong!!!
Best of luck to all of you.
Rick
Dianne,
Even a low grade fever along with the chills can be an indication of a cholangitis infection. It is worth a call to your Dr. The treatment for it is oral antibiotics and the sooner he gets started the better. If cholangitis gets a good head start it is much harder to battle down.
I am just finishing off a course of antibiotics for cholangitis right now – my 2nd infection in the last year. This is common!
Rick
I also suffer from PSC and UC and developed the CCA as a result of the prior. It is good news that the tumor is located where it is as opposed to being a Klatskin type tumor.
You have one good option that you should consider if the cancer has not spread: transplantation. It is not well known and it has great success rates for the people that make it through the protocol. Blood vessel invasion should not prevent the transplant surgery and I can’t see where some scarring would either. There is a section on this website that is now devoted to transplant and there are a few folks listed down there that you can contact for more information. I’m not sure what centers in Canada do this, but I know that one member ended up going to Mayo Clinic in the US to have his transplant done and I’m not sure if the health system covered that cost of if he ended up paying some out of pocket. His name is Raye and he could be a of a lot of help considering he is Canadian as well.
Good luck!
Rick
Kris,
Sorry to hear about this frustrating turn of events. I’d be fairly ticked off as well. But – good for you regarding sticking to your guns on the no needle biopsy part. Hopefully that CT Scan will be over and done before you know it and that radiation will be underway very soon. Maybe not in 2 weeks, but still SOON.
Keep on hanging in there!
Rick
