Unfortunately, another introduction.

Hi Jonathan,

I just wanted to share that my mother had the y-90 treatment in Feb 2014.  After it’s done, they still may say the tumor is still “there”, but hopefully the radiation will do the trick and what is there is no longer active.  For my mother, although the Y-90 shrunk her tumor significantly, we had the procedure done a second time in Nov 2014.  The thought was to attack it again while it was down.  And, the second time around, she took xeloda before and after to help with the effectiveness.  After those 2 y-90 treatments, we had 3 years of treatment-free living.  I hope the Y-90 gives you as much or more success.

Best wishes,

catherine

Hi Jonathan,

Merry Christmas to you and your family!

I hope the news was good from your scan and bloodwork.

I was wondering why you are left to wait so long for test results.  Is there a patient portal where you can log in to see results?  For blood tests, sometimes I even call the duty nurse and ask, if it seems to be taking a long time.  Partly this is because a few times they’ve gotten lost so if there is a delay, I worry about that, but also it makes me crazy to wait more than a few days to know how the tests came out.

Take care, regards, Mary

Hi Jonathan,

Welcome to the site although I so wish that you did not have to be here. Thanks for sharing what has and is happening right now and I am sorry that you are having to go through all of this. If we can help at all then we will so please feel free to post away as much as you want and ask questions. And if we have answers to your questions then we will help as best as we can.

Not much I can add to what the others have said but I just wanted to welcome you here. Yes you are right in that so much of what is on the web in general is full of doom and gloom, but there is also so much garbage out there regarding this and most cancers. My advice to you regarding the web is to ignore so much of it and if you are looking for info etc then please use reputable sites. And of course the support that you will get on here from those who know what you are going through and dealing with is second to none!

Looking forward to hearing more from you and my best wishes to you and your family,

Gavin

Dear Jonathan.

I am sorry to find you here but this is one of the best places for you to be considering the circumstance.

My 58-year old husband was diagnosed with cholangio in March of 2017.  Two doctors told us four months, eight with chemo, which often doesn’t work on this type of cancer; the third doctor told me “one very hard year.”  Not too encouraging.  Surgery was attempted but failed.

I’ve have many low moments but reading the personal stories here has helped me immensely to deal with this terrible diagnosis.  I’ve read many accounts aloud to my husband, others I’ve told him about while walking our dogs.  The doctors we’ve dealt with are wrong:   there IS hope, there are survivors of this.  We’ve searched and found better, more hopeful doctors.

Initially, the klatskin tumor was almost 12 cm, with “satellites” (doctor’s word). Fortunately, there was no spread, one possible lymph node involved but nothing else.  We were lucky, very lucky as we found out.

Husband did a couple rounds of gem/cis, hated it and switched to an oral chemo for several weeks.  January 1st, he decided he’d had enough – the neuropathy in his hands and feet had become intolerable.  By February, the tumor had shrunk to 3.5 cm and wasn’t large enough for proton therapy, which we were all set to do.

So here we are, November of 2018, husband just had a PET/CT scan plus another scan (MRI, I believe) – tumor is now 2.5 cm and areas that lit up along the biliary duct are now cancer free.  The questionable lymph nodes are clear.  The scan was marked “improved” over the June scan which was marked “improved” over the January scan.  Our wonderful doctor at the Disney Cancer Center in Burbank (Dr. Jacobs) told us to do nothing- no chemo, no radiation, no clinical trials.  He thinks we may be able to go for a cure – or if not, treat the cholagio as a chronic condition.

We accept that.

We try to keep life as normal as possible, husband retired, we visit family, are fixing up our home and going on a family trip to Hawaii in a few weeks.  My husband says he feels great and looks completely normal again.  We are making long-term plans going forward.

So, with that said, hang in there.  Cholangio doesn’t have to be a death sentence as many people here have attested.  Treatment options are better and there is a lot you can do with diet and lifestyle.  WE certainly believe the changes we’ve made have contributed to my husband’s prognosis and progress.

Bon

Jonathan,

I would also like to welcome you to our discussion board family, although I’m so sorry that you have reason to be here.

I agree with Mary’s points- it is good that you are being seen by a medical center with expertise in CC, and also good that you started treatment promptly.

CC is a frightening diagnosis and general information found on the intetnet can be so discouraging.  It is important to understand that much if that information includes results for patients treated by community hospitals with little experience with this disease.  The major centers are utilizing the latest research and treatment modalities,, and are having some success.

My husband was in his mid 50’s when he was diagnosed with Perihilar CC, and his prognosis was very poor. At the time, we also had young (early-mid teens) children, and we refused to give in to this disease and go the palliative route, as advised by our initial doctors.  We got 2nd and 3rd opinions, and found a hightly skilled surgeon that was willing to resect.  Now, three years later, he is cancer free.  There are more and more non surgical treatments that have emerged in the last few years that are allowing patients to effectively treat, or at least manage, their CC.  My advice would be to try to stay positive and work with your doctors to consider best options for your particular presentation and  take each treatment as it comes knowing if it doesn’t work for you, there are second and third lines of treatment and new discoveries all the time.

All the best to you and your wonderful family.

debbie