Introduction / Welcome

Hello everyone.

My name is Laurie and I’m new to this forum.  I will give you a quick up-date on my journey so far with Cholangiocarcinoma.

I was diagnosed with Perihilar Cholangiocarcinoma in October, 2020.  I had no symptoms whatsoever, but bloodwork done in August showed high liver enzymes.   Between August and October I had an MRCP and 2 ERCP and the second ERCP showed positive for cholangiocarcinoma.

I had my surgery on October 21st at USC Keck by Dr. Kulkarni. (I was happy to see he was on the CCA Foundations list of surgeons.)
He originally thought he might be doing a left tri-seg, but once inside he felt my anatomy of my right posterior lobe was a bit small.
He ended up doing a central resection…This was also based on the pathology during the surgery which indicated negative margins on all ducts.

After surgery the staging with the more in-depth pathology showed my staging to be T2aN0M0.  (Size of tumor was approximately 1.4 cm)
But also the more in-depth pathology unfortunately showed positive margin on the left, and small single focus on radial margin on right posterior.   The doctor decided to go back in and remove the existing disease on the left.
I underwent a second resection on October 30th for a left lateral lobectomy.   I now only have my posterior right lobe and bile duct…but it seems to be regenerating nicely.  My liver enzymes were monitored daily in the hospital and were good, and they are continually going down.
I was in the hospital for a total of 19 days and went home on November 8th.
My at-home recovery is also going well.  It has been 2 months post-surgery, and I am feeling fairly normal. The muscles-scar tissue around the incision are starting to bother me more, but I guess this is all part of the healing process.

The gross disease has been removed, but with the real possibility of microscopic  cells remaining from the “single focus on the right radial margin” I will move to the next protocol of chemo and then radiation.   (I believe even with clean margins there would have been a protocol of chemo as a precaution, but now with the positive radial margin, the protocol will be both chemo radiation.)
This is the protocol suggested:
4 months chemo and then 6 weeks radiation:  Intravenous called GEMZAR in combination with the pill XELODA for 4 months, (2 weeks on and 1 week off) — Followed  by a 6-week treatment of radiation along with the pill XELODA.
I started treatment on December 14, but my neutrophil white blood cell count dropped to 700 so the second infusion was postponed. I continued taking the oral Xeloda chemo, and then had a week off.  This week I had my second infusion with a lower dosage, and hopefully my WBC will not drop again.    I have had very little side effects from the chemo other than the WBC count, and being a little tired.

There will also be molecular profiling /genomic testing of the tumor removed, but for some reason this has been delayed and I have not had my results yet… I keep asking.

It has definitely been a scary journey, but I remain positive and determined to kick this disease.  Even though such a large amount of my liver needed to be removed, I think I was diagnosed relatively early.   I’d love to hear any feedback from anyone who is on this same journey.

I wish everyone all the best in fighting CCA and staying positive for a much brighter 2021.

Best wishes,

Laurie

• This reply was modified 3 years, 3 months ago by Odie.

Hi Michaela,

It is nice to hear from you.  I hope your mother continues to feel better and recovers from her infection.

For patients whose cancer is confined to the liver and bile ducts, some patients do see the tumors retreat enough due to chemotherapy that surgery becomes possible.  This is not a widespread result, but if your mother’s doctor says it is a possibility, then there is reason to hope for this outcome.  Most of our patients in this position also get a surgical opinion from someone experienced with complex liver surgeries who may be able to give a more accurate picture than an oncologist.

If a recently diagnosed patient is told surgery is not possible, there is still reason for hope.  Many patients see their cancer stabilized and brought under control with chemotherapy or other treatments.  A typical outcome is that a patient will move from one treatment to another — when one loses effectiveness, another is tried.  Often our patients are treated through clinical trials.  Many patients maintain a decent quality of life even during treatment.  The science is evolving and new treatments are in development.  There are many reasons to stay hopeful and positive even with a difficult cancer diagnosis.

There have been several patients whose stories are posted on this board over the years who were able to have surgery after chemo.  One I recall is Kathy, the spouse of a board member who posts as “vtkb.”  Another is Lisa, the spouse of a board member posting as “mlayton.” I will look for others, and add them to this post.

Take care, regards, Mary

Hello Kristen,

Thank you very much for your support. The last blood test showed that her CRP level and white blood cell count are high. They did additional blood tests and said that this is probably due to urinary tract infection. She is now on antibiotics and they will check the blood tests again for inflammation on Monday. If all goes well, they will start chemotherapy.

Our visits did not take very long unfortunately. It is a university hospital and they are trying to serve many patients. We asked around for alternatives and despite the time issue, this hospital still seems like the best option.

We asked what the treatment plan was. The doctor said they will start chemotherapy after solving the inflammation problem. Then, if the chemotherapy can shrink the tumors they will try surgery. I don’t know how optimistic that is. The largest tumor is about 8 centimeters and there are many small ones scattered on the liver (according to the PET scan report). There is also one small area under her right scapula which suggests bone metastasis.

I didn’t want to ask how probable that scenario is (being able to get a surgery after chemotherapy) because my mom seemed really hopeful there so I decided to focus on that and hope that it happens even if it is not very likely.

Our next visit is on Monday and I will ask what drugs they are planning on using (if it is Gem/Cis or something else) and if that is the best option.

Currently I am trying to get more information on nutrition, psychological support, possible disease progressions. I read and get lot of helpful information on the forum as well as on Cholangiocarcinoma Foundations’ website. Thanks again to all of you for this.

Hello,

My mom (64y) has recently been diagnosed with cholangiocarcinoma, unresectable. Tomorrow will be our first meeting with her oncologist after the biopsy results. She will probably start receiving chemotherapy.

I am very sad and scared.  I am doing my best to support her and be strong for her. I’ve been reading your experiences and just wanted to thank you and say hi because it becomes a little bit less overwhelming when you see people having similar experiences with you.

Best,

Ayhan

Hi there. I’m new here, and newly diagnosed with stage 3 cholangiocarcinoma. I’m 54, married for 32 years, with two grown children, and three grandlittles.

My journey began on Aug 14; two days after I returned from my mom’s funeral. I had gone to my chiropractor that Fri for an adjustment and massage. Later that day I began having pain/pressure just below my breastbone, and it was difficult/painful to take in a full breath. My first thought was that the adjustment was a little off (I’ve had dislocated ribs in the past, and it kinda felt like that). I monitored my symptoms over the weekend, and was beginning to feel better by Mon, so I thought nothing more of it.

That next Fri, I had a follow-up adjustment/massage. Later that day, the breathing problem/pain returned. In the wee hours of Sun, Aug 23, I finally had my husband take me to the ER because it was becoming so uncomfortable and painful. They did a CT scan and immediately admitted me because there was a large mass on my liver.

I was in the hospital for 2.5 days, during which time they did an MRI, blood tests, and a liver biopsy. A week after going home, I received my diagnosis.

Previous to this, I had no other symptoms aside from occasional, mild stomach aches. I also don’t have any of the normal risk factors for cholangiocarcinoma except being 80 lbs overweight (well, about 50 lbs over as of today…). I do have an autoimmune disorder (Hashimoto’s) but that, as I understand things, doesn’t constitute a risk factor. In Feb this year, I started an elimination diet to manage the Hashimoto’s symptoms, and have lost 30 lbs since Feb. I don’t attribute the weight loss to the cholangio, as I’ve done this elimination diet previously and had the same results: 25 lb weight loss by eliminating gluten, sugar, soy, dairy, and junk.

Currently, none of the breathing problems have returned. All I’m experiencing is occasional abdominal pain, mild nausea, and pressure/pain in the area of my right kidney. I’m told this could have to do with the size of the tumor, putting pressure on the kidney.

I’ve been fortunate to live about 4 hours from MD Anderson, and will be receiving my treatment through them. My oncologist used to head the international cholangiocarcinoma research network and the medical advisory board to the cholangiocarcinoma foundation, so there’s that to be thankful for, too. 🙂

He wants me to begin chemo within the next 14 days. If insurance approves, I will be participating in a clinical study. If not, then standard chemo. He is also going to order further genetic testing to see if targeted therapy and/or immunotherapy are options.

Right now I’m on an emotional roller-coaster. I’m trying to remain optimistic that we can beat this. I’m overwhelmed with trying to learn and understand all of this new information. And yes, I’m a little scared…but when the fear kicks in, I do my best to focus my mind on other things.

I appreciate you approving me for this group, and I hope to make this part of my support network.

Hi Michaela,

Thank you for your note.

I asked if your mum is in Spain because the Cholangiocarcinoma Foundation held its annual conference a few weeks ago and some of the expert presenters were from Spain.  You can find videos of their presentations on the Foundation website.  It appears, as you mention, that there is good expertise on our rare cancer where you are located.

It was also good to hear your mum has discussed biomarker testing (also called molecular profiling) with her doctor.  Patients should ask about the testing if their doctors do not mention this option.  The Foundation has a nice video, also available in Spanish, about biomarker testing which can also be found on the website.  I will add the link at the bottom of this message for any readers who have not yet seen this important (and very watchable) video.  Because our cancer is so rare, our patients can really benefit if their cancer has a mutation for which there are specific treatments.  Sometimes the treatments are for other cancers that share the same mutation.

I am not a doctor so cannot give medical advice.  I can note that for some patients whose cancer has not spread and is only present in the liver and bile ducts, there may be additional treatments that can be considered.  Some patients are able to have “localized” therapies which deliver chemo or radiation directly to the tumors, as compared to a “systemic” treatment like traditional chemotherapy which treats the cancer throughout the whole body.  Your mum may wish to ask her doctor if there are any localized treatments that might be considered at some point for her.

Take care, regards, Mary

Here is the link to the video: https://cholangiocarcinoma.org/mutationsmatter/patients-portal/

Hi Michaela,

A warm welcome to our community.  I am sorry to hear of your mother’s diagnosis and that she is struggling with infections.  She is a person of great heart and courage, from what you have described, and certainly she very much values the support you give her.

This is a difficult cancer, but the good news is the science is evolving rapidly and there are many more treatment options than was the case a few years ago.  It is important to have doctors with experience with cholangiocarcinoma because this cancer is rare and complex, and it is also important to have biomarker testing (also called genomic or molecular profiling) because your mother’s cancer may involve a genomic mutation for which there is a new treatment or one available through clinical trials.  Infections are not uncommon for our patients and can be hard to bring under control – it sounds from what you describe that her infection is slowly resolving.  I hope your mother continues to feel better.

Is your mother being treated in Spain or Slovakia?  Has her cancer spread beyond the liver and bile ducts?

I hope our community can be a source of comfort and information for you and your mother.  Please look through the resources available for patients and caregivers on the Cholangiocarcinoma Foundation website and please send any questions our way.

Take care, regards, Mary