1

(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.

Congratulations!

7

(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

(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.

11

(14 replies, posted in General Discussion)

I'll be thinking of you Lainey and know you will get through this.

12

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

Congratulations and good luck with radiation. It is so wonderful to hear that she was able to have surgery. There is hope.

13

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

My husband has never had any symptoms either but his biopsy definitely confirmed  intrahepatic cholangiocarcinoma. I definitely recommend getting a second or third opinion even if it to just confirm that you are taking the right action at your current facility.

I'm sorry that I don't know anyone at the two facilities you mentioned to recommend.

Good luck and congratulations on being stable.

14

(21 replies, posted in Members' Cafe)

Congratulations Kris!  I appreciate your viewpoint of caregiver and medical professional.

Best of luck Porter!  I'm keeping you in my thoughts.

When we met with Dr. Colquhoun at Cedars Sinai for my husband, he said when my husband would have a resection, he would have a trisegmentectomy and leave segments 2 & 3 and take the gallbladder as well. Sounds like yours will be the same. Good luck. I will keep you in my thoughts.

17

(7 replies, posted in Clinical Trials)

Congratulations and thank you for helping find a a cure for this horrible cancer.

18

(6 replies, posted in General Discussion)

So happy for you guys that this is the end of chemo!  That deserves a celebration.

At our November 2013 appointment at UCI we were told to do two more months of chemo and then rescan to see if resection would be an option. In the meantime we self referred ourselves to Dr. Selby at USC since our insurance doesn't contract with them. I'll deal with the bill when it comes and it was very much worth seeing him.  He was very informative and helpful. His opinion is that the resection surgery should be done now. He said His case would be a "delicate" surgery because of the tumor's size and proximity to major veins, but that it can be done and if not done, the tumor can spread and it would be too late to have surgery as an option. Insurance is still a roadblock to have the surgery done at USC but Dr. Selby recommended Dr. Colquhoun at Cedars Sinai in Los Angeles. Our insurance contracts with them and we met with Dr. Colquhoun at the end of December.

That appointment went well and he didn't necessarily disagree with the two opinions we had so far but wanted to have his case reviewed by their multidisciplinary team and thought that he should have the portal vein embolization procedure done by their interventional radiologist prior to the resection to make sure he will have enough liver afterwards to survive.  He is scheduled to have that done on Tuesday so wish us luck that goes well and his left lobe grows. He is continuing chemo in the meantime and that is getting harder for him. I hope this all goes well and he will have a resection as soon as possible.

It seems to be a normal thing, both the drop in counts and the feeling down thing. My husband's counts were too low during his second and third cycle. The first time the onc postponed it one week and the counts were back up when we went back the next week. The second time it happened, the onc said to skip it (it was the second treatment in a cycle) and resume at the fourth cycle (tomorrow). We are anxious to see those results tomorrow morning.

I don't know if there is anything to do to help the down feeling. I think it is completely normal but it still sucks.

I try and make sure he keeps eating healthy and he washes his hands all the time and wears a medical mask when he goes out and is around people.

Take care and I hope your numbers get better.

21

(11 replies, posted in General Discussion)

I have to ask for them specifically. The scans came on a separate cd. At our clinic I had to check the box that said X-rays and indicate what days the scans were done. The cd also included software to view the scans so I think they are burned separately from the othe medical records.

We met with Dr. Imagawa this morning.  He confirmed that chemo has been doing its job and has shrunk the tumor about 20-25% (it was 6 cm and it is now 4.7 cm).  He is very pleased with the result and how my husband has tolerated chemo.

He said surgery still isn't possible at this point.  The tumor is still too close to some major veins (the inferior vena cava and left hepatic vein) that are vital for successful resection.  He wants him to do two more months of chemo to try and shrink it more and hopefully get it further away from those veins and then have another scan.  If it shrinks more, we will be closer to surgery.

We will also pursue a second opinion of course.

So glad the tumor is shrinking and hopefully February will bring surgery.  I'd like that to be my valentine's gift:)

Thanks for all the good wishes and please keep them coming!

Thanks for the replies. Yes, I've kept a notebook since the beginning and write down notes for every test, scan, dr appt, chemo treatment, symptoms, etc. It has been helpful keeping everything straight. I also use it to write down questions that come to either of us so they are ready for the next time we see the doctor. I recommend it for all caregivers.

Thanks Lainy and Percy for your replies. Dr. Imagawa is a liver specialist (http://www.faculty.uci.edu//profile.cfm?faculty_id=4828) and treats cc.

Also, Is there a place in this website that defines some of the acronyms?  Specifically, I'm looking for what RFA, IRE, IMRT, and SBRT are.

We meet with the surgical oncologist at UC Irvine (Dr. Imagawa) on Monday. We are anxious about it and I was hoping to get some input on what to ask him.

Some background, my husband was diagnosed in early September 2013 with stage 1 intrahepatic cc. The tumor was 6cm and too large/close to a vein to do surgery. He started chemo (gem/cis) and completed 2 1/2 cycles (his counts were too low to complete the round his week).  He had a ct scan this week that we will review with the doctor on Monday.

We are hoping the tumor has shrunk enough to do surgery.  If it is, my questions for the doctor are : when can it be done?  Does he continue chemo up until the surgery date? What exactly will be done in the surgery? Are additional tests needed before surgery? How long will he be on the hospital and recovery? What treatments will be done following surgery (additional chemo?)?  How often will he have follow up scans?

If surgery isn't an option, my questions are: what options are there?  Will having another procedure done rule out the possibility of a future resection?  Can you refer us to USC for a second opinion even though our insurance doesn't contract with them?  Can you refer us to UCLA for a second opinion?

Does anyone have any suggestions on what else we should ask the doctor?  Neither of us has dealt with cancer or any surgeries before so I feel like we are going in blind except for what I've learned on this site.

Thanks!