We just met with a doctor yesterday and this one came up. It is suspended right now, but he had said they were showing some promise with it. Hopefully they figure out the issues and reopen it.

My husband had PVE, although not through the jugular. The procedure required an overnight stay in the hospital and some discomfort, but very tolerable.

Best wider to you and your husband.

After consulting with the surgeon again, he suggested moving forward with the cyber knife. My husband is having the fiducial markers placed as I type this. It took a while (too long in my opinion) to get all the approvals in place, but at least now the process has started. The oncologist also started him on capcitabine. So far, he's been tolerating it well.

Let's hope this thing works.

We heard back from the cedars team and they offered ablation as an option to treat my husband's small tumors that showed up on his 6month post resection surgery.

The other option that was offered by our local group is cyber knife.

I don't know which is better/more effective. I'm kind of lost as to how to make a decision on this. Any input is appreciated.

My husband had his resection surgery in April 2014 and follow up chemo that he completed in September. Unfortunately, his October scan showed two small spots. After discussing with the surgeon and the oncologist, he had another followup scan and the spots had doubled in size in four weeks. We were referred to a radiologist at the Cancer Center at Riverside Community Hospital that does cyberknife. We saw him this morning and the authorization process has started.

I've also sent his followup  scan to the surgeon who will review it with a radiologist at cedars sinai.

We'll see where this goes. I hate cancer.

Do most people do chemo again after cyberknife?

My husband had his resection surgery in April of this year and following his surgery he could only tolerate a tablespoon or two of food at a time. He couldn't stand to look at a plate of food so I just put a tablespoon or so on it. After about a month, he could eat a little more at a time. By a few months out he was eating about half what he did presurgery. He still doesn't eat as much as he did before, but he it careful to eat mostly healthy food and as much protein as possible.  He mixes protein powder with hot chocolate to help increase his protein intake.

He still doesn't have as much energy as he did before, but it has increased over time. It just takes time to heal from such a major surgery.

We found that stool softeners and coconut water (mix it with some juice if you don't like coconut) help keep him regular while he was on pain meds following the surgery and while he has been on chemo. He usually has two small containers of it a day.

Good luck with your mom. It's tough watching them go through this and you feel like you can't make it better for them.


(18 replies, posted in General Discussion)

Yes, Nasra just responded to my email and she is going to send the billing info to give quest.


(18 replies, posted in General Discussion)

I received the kit for my husband. I tried having our clinic do the draw but they won't deal with the shipping portion, even though it is pre paid, pre labeled for FedEx. I then went to quest diagnostics but they won't do it without billing information.  I explained that it would be patient paid and they said no, it has to be set up for billing the mayo or insurance.

Any suggestions?

Congratulations!  Great news.


(9 replies, posted in Good News / What's Working)

Thanks all!  He went out Sunday and just paddled around but today he caught a wave. I haven't seen him that happy since this all started last July. It's amazing how just one wave made him feel normal again. It really was the best prescription the doctor could give him.


(16 replies, posted in Good News / What's Working)

Wonderful news Porter!  Congratulations. I think it is time to celebrate and do something nice and pamper yourself.


(9 replies, posted in Good News / What's Working)

My husband had his resection surgery on 4/21/14 and we had another follow up with the surgeon yesterday.  The surgeon said the scans looked good and he should get back in the ocean to surf. The doctor says, "what's good for the mind is good for the liver".  He will take it slowly (I hope). We will follow up with him in a few months.

We see the oncologist in 1.5 weeks to finalize the chemo plan, but it looks like it will be three months of gem/cis with scans every three months.

His swelling is still being  controlled with diuretics.  His only outstanding "side effect" from the surgery is thought to be a hernia in his groin that  may be the result of all the fluid he was retaining. (He looked like he was 12 months pregnant at his worst).  He will have to have that dealt with once chemo is over.

I'm so happy for good scans and that he is feeling better with each day that passes.

My husband was on gem/cis for seven months prior to his resection.  He took zofran the day of the infusion and for two days after to help form getting nauseous. He didn't have nausea except maybe once or twice and it was very mild. He started with the two on/ one off schedule but that changed to every other week due to low neutrophils (a portion of your white blood cells). We learned that we needed to be flexible because each round was different. Some times he felt good, others he could barely get out of bed. Some times he had to have his infusion postponed due to low counts. We just had to roll with it and realize we couldn't control everything (very frustrating).

Hydration is important -make sure he drinks a lot. The worst side effect he had was constipation. We found that drinking coconut water the day before infusions and for the next five or so days, along with two stool softeners at each meal worked the best.

Good luck with it. At least you know there is an end in sight.

Take care.


(24 replies, posted in Members' Cafe)

marions wrote:

Julie….to answer your question re: previous blood and tissue samples at Mayo, here is some preliminary information.
Samples cannot be used unless a prior consent form has been filled out.   
In the meantime, for those wanting to participate in the study and have appointments set up or are ready to schedule an appointment with a Mayo physician please, follow these steps: 
Nasra will get in touch with you.
As soon as we receive IRP approval, the Cholangiocarcinoma Foundation will provide you with explicit instructions.

This link is no longer active. Is the project still looking for participants or is it missing from the website update?  My husband is interested in participating.

My husband had his surgery six weeks ago yesterday. They ended up taking more liver than they expected since the tumor grew since his previous scan. It was a good thing he had the portal vein embolization procedure done so that they could take more liver. It was a long surgery but he did well. He was in the hospital for seven nights and then came home. He had a rough time with fluids in his belly and legs, and had to be tapped two separate times and was placed on diuretics and a low/no sodium diet to keep that in check. He was hospitalized overnight at three weeks out due to the fluids and difficulty breathing. They did an MRI to make sure everything with the surgery was working okay and it was. At six weeks, he is doing better and starting to do more every day. He's lost over thirty pounds since his surgery. We are working on getting him to eat more (especially protein) and walking more. It's a good thing he was in excellent shape prior to all of this.

The pathology report indicated two satellite tumors  in addition to the one tumor we knew about (making him stage t2b). We see his oncologist again next week and will discuss chemo plans. She said she wants him to do chemo but the specifics aren't known at this time. It seems like the gem/cis he was on previously didn't do too much to kill off his tumor so I'm wondering what the best cocktail will be. The did say they got negative margins and no lymph nodes were involved.   We are just focusing on recovery at this point and will deal with chemo when it comes.

Thanks for all the positive thoughts and prayers.


(9 replies, posted in Good News / What's Working)

Such happy news. Congratulations to you both.

My husband is being seen by Dr. Colquhoun at cedars sinai in Los Angeles. We also got opinions with Dr. Selby at USC and Dr. Imagawa at UC Irvine. All are knowledgeable about cc.

Such great news!  She'll be in my thoughts.

Thank you all for the well wishes and positive thoughts.  His surgery is scheduled for 4/21/14.  I'm sure it will be here before we know it.  So thankful he has this opportunity.

Good news!  My husband was diagnosed in September 2013 with cc. He has been doing chemo (gem/cis) since then and had a portal vein embolization procedure done in January 2014. His last scan showed that the PVE worked and his left liver lobe has enlarged enough that they will more forward with liver resection. It is getting scheduled and should be in late April. He will have his surgery done by Dr. Colquhoun at Cedars Sinai in Los Angeles.

We are nervous but elated.  Thank you for all the support. I'm on here every day, even though I don't post often.



(8 replies, posted in General Discussion)

My husband also felt bad about getting a second opinion and I pushed for it. After we got the second and third opinion he felt more knowledgeable about his disease and thanked me for pushing the issue. Doctors are used to patients getting second opinions, especially in situations like cancer. Don't hesitate.


(8 replies, posted in General Discussion)

I definitely recommend a second or third opinion. We had to work through our insurance (HMO) to see where they contract with and then who our physicians group contracts with because apparently they can further reduce your options. The best bet is to talk to your doctor (we worked with our oncologist to get referrals to different surgeons) and they can work with your insurance and put in the referrals. I was told that in California HMOs limit you to in-state. Not sure if that is completely true or not though.

We also self referred ourselves to one doctor and will have to pay for that consultation out of pocket since they don't contract with our insurance/physicians group.

We saw Dr. Imagawa at UC Ivine, Dr. Selby at USC, and Dr. Colquhoun at Cedars Sinai in Los Angeles. All three had differing opinions as to the plan. My husband's tumor also was too large and close to major veins to do surgery initially and Dr. I recommended chemo to shrink it. We did that for two months and then rescanned. At the next appointment, same story. That's when we went for the second and third opinion.

Dr. Selby said to do surgery now. We couldn't get the insurance thing worked out and he recommended Dr. C. We met with Dr. C and discussed the other two opinions and he recommended a portal vein embolization procedure and continue chemo to prepare him hopefully for a trisegmentectomy.  One thing that helped us visualize it was having the doctor explain the scan images and show us where the tumor was and also explain how the resection surgery is done. The doctor showed us what segments they would take out of my husband. He had the PVE procedure done in January and we are waiting for a rescanthis month to see if surgery will be an option.

So long story short, it seems each doctor has different approaches and opinions. It's definitely worth seeing others to ether confirm the path you are on now or see if there are other options.   Also, it seems that each case is different because of the location of the tumors and proximity to the portal vein and Inferior Vena Cava, but there are cases that shrinking the tumor will lead ultimately to resection.  Porter on this board is a recent example of shrinking her tumor and then having a resection (and I'm hoping my husband will be one too!)

Good luck and take care.

How doesn't one find a genetic counselor?  Would our oncologist or surgeon refer us or is that something we would search out ourselves and self refer?

Thanks for that. I had no idea and I shop there a lot. I'll make sure to go that route in the future!  Every little bit helps.