Shingles & Cholangiocarcinoma

Cazgirl…..with the newest interest in research for this cancer, I expect valuable testing to evolve as well. Not sure whether this will include a specific blood test or whether other diagnostics will be used.
We know that Serum levels of carcinoembryonic antigen (CEA) and CA19-9 are often elevated however; by themselves they are not sensitive or specific enough as a general screening tool. Presently, they are useful in conjunction with other methods such as MRI, CT, etc. and aid in the diagnoses for this disease and appear to have more value as guideline for chemotherapy treatments. Generally, CA 19-9 is tested at onset and then continuously followed throughout. This is what I know, but others may want to chime and share thoughts with us as well.
Hugs,
Marion

Hi Marion –

At diagnosis in December 2013, I was told it was unresectable due to lymph node involvement. We sought opinions from two other facilities, and those surgeons concurred. As you recalled, I started Gem/Cis for 3 mos with poor results.

In April I had radiation to the tumor outside the liver. The tumor showed shrinkage afterwards. They also started me on Xeloda (3,000 mg a day), which I have been on ever since.

In May, I was referred to an interventional radiologist and had three chemo embolizations to the liver (each one month apart), and I have one more to go in September. My response to the embolizations has been very good with significant tumor death in the liver. However, my latest PET scan still shows “active” lymph nodes outside the liver.

So, the next step will be more systemic chemo to keep the lymph nodes in check. My oncologist isn’t sure which drug though — he says there no clear cut option. This is very frustrating.

I am now told if I can keep the cancer growth stable, there is a small chance they may consider a surgery in the future (they have yet to put a metal stent in, which I think is a good sign). I am so very hopeful.

I don’t know how others handle years of treatment! I am tired!

I have learned that there are currently no blood tests or other tests that can reliably detect bile duct cancers early enough to be useful as screening tests. Without these tests, most bile duct cancers are found only when the cancer has grown enough to cause symptoms and that is usually because the bile duct is blocked and the excess bilirubin in the blood reaches the skin and causes itching. In my husband’s case jaundice was not apparent at the time of the severe itching.

On another note, dear Olympic, I wonder whether you have made a decision in regards to treatment of your disease? I recall you mentioning a non-response to Gem/Cis; has something else been offered to you? Also, have you consulted with an interventional radiologist for possible intervention? I assume that surgery had been ruled out.
Hugs,
Marion

Hi Cazgirl and Olympic,

The itching that goes along with CC that so many patients have and do experience is down to the bile ducts getting blocked. The ducts get blocked and the bile can not flow through them so it backs up and goes back into the bloodstream hence the itching all over and the jaundice as well for some. My dad had this and the itching drove him nuts to say the least!

I don’t know about shingles, CC and itching, not read of that but here is a search of shingle posts on the site –

http://www.cholangiocarcinoma.org/punbb/search.php?search_id=1620186933

I haven’t read of a connection of shingle and CC either, but who knows, it may exist and is just not proven yet. Itching can be a symptom of many things indeed and unfortuantely with CC many of the symptoms do not show up until the disease is very far advanced indeed. This happened with my dad and his first symptoms were the itching with the jaundice in the eyes and skin etc. Please try not to look back and think about the what if’s, could or should have’s but I know that we all have these.

My best to you both,

Gavin

Hi – I wonder if I ignored potential early signs – although not shingles, per se.

About a year and a half prior to diagnosis, I started experience intense itching all over that lasted about 4 weeks and drove me nuts. At first I actually thought it was about a bed bug infestation, until a pest control guy confirmed I was completely wrong, especially since my husband had no symptoms. Coincidentally, we moved out of state around the time the itching went away – so I chalked it up to some type of regional allergy.

About a year later, the itching returned but both my dermatologist and ob/gyn told me it was probably post-partum hormone related as I had given birth about six weeks prior.

Four months later, the itching returned but with jaundice. At that time, I was diagnosed at stage IV and unresectable.

I have a lot of would’ve/could’ve/should’ve regrets, but that doesn’t help much these days. My husband is a physician and he didn’t put the clues together either.