My sister in law was recently diagnosed with terminal metastatic cc with turmour in the intrahepatic artery.  The last 6 weeks have been a whirlwind and I am seeking advice from people who understand the symptoms to enable the family to better support her. I am in the UK.

She has just completed #2 Chemo (Gem/Cispl) and appears to be doing Ok so far.  I would welcome advice/info from anybody who combined strict diet/ hemp oil with chemo treatment.  I believe both science and alternative medicine have a role to play.

She had a drain last week for ascites and I wonder how often this is likely to occur?  I have so many questions but don't want to ramble.  I'm grateful this site exists - thank you all.

Tyler

Anyway, we just spent a week in Rochester,MN at Mayo. What an amazing place. Unfortunately, he is not a liver transplant candidate. Our course of treatment is going to be Therasphere and then chemo. We will be going back to Mayo for this treatment. Does anyone have experience with this?  He has already had his mapping angiogram.

Another question I have is that although we haven't started treatment, he is extremely tired and sleeps a lot. I expect this after treatment but is this also just a sign of this hateful disease?  We have three kids and this just isn't their daddy. .

Ok, thanks...nice to "meet" all of you
C

   My father was diagnosed on February 1st of this year. He initially presented with acute jaundice and itching. After diagnosis, he chose not to pursue any treatments, but he did receive a plastic stent via ECRP, in March. That alleviated the itching and jaundice. Two-three weeks ago he started presenting with jaundice again, but this time no itching. I told him he needs to get his stent replaced, but he is not interested. I spoke with his doctor, and they said they could call in antibiotics if we wanted, but he would need to go in for a blood test first. He does not care to do that either. His jaundice is worse this time than last, but again, no itching.
    The fatigue has really gotten to him this time. It is sad to watch, and feel helpless. He says he is not ready to let hospice come in either, and has asked us to respect his decisions. While trying to do that, it is hard not knowing what we need to look out for, or do to make things easier. Overall, Dad is staying in good spirits, although yesterday he was noticably more withdrawn. Any advice, good or bad, is welcome. Hoping he lets hospice in soon, that will take some of the burden off of us, not knowing how to help. Thank you in advance.....you all have already helped tremendously!

As I'm typing this I can't stop crying. I been crying everyday ever since my dad was diagnosed with extrahepatic CC which was in  mid March 2013.

Around January/Feb of 2013 we noticed he was losing some weight and he was not sleeping , just few minutes here and there. He went to see his PCP a few times and was just told it was all related to diabetes , had some labs done and was given sleep medication which did not work at all. Following his glucose/sugar readings where going higher and higher 300's. He was always just laying on his bed , started to look depressed and very pale. I kept on telling him we should go to hospital which he refused to , March 12  went to see his PCP for same issue of not sleeping  and actually saw a different dr since he was not available.
The Dr looked at him and immediately noticed how pale his skin was yellowish and by then my had some yellowish color in the eyes . She told my dad that labs done a week ago where very bad . Biliruben was high and  she sent him to the hospital to ultrasound done.  Hospital did US, CT scan and and ERCP with stent placement .Later that night was diagnosed with a mass.

Fast forward a week later dad went to see oncologist for first time  , told my dad he had CC but  is confident that it can be resected. Told him he will need major surgery to remove the tumor and also do a liver resection. The Whipple surgery is what is called.
Later in the visit  dad wasn't feeling well at all, Oncologist noticed my dad was very dizzy and couldn't keep his balance and admitted him to the hospital. Turn out my dad was bleeding from the inside  ( Maybe from ERCP, when they did brush biopsy )and was losing blood.  blood pressure was very low , sugars in the 600s!  He had a blood transfusion twice and was in Intensive care for 2 days , total 6 days in hospital. I thought I was going to lose him that weekend. I feel like I been living a nightmare.
After coming back home we met with oncologist in April and told my dad he needed to gain some weight and bring up his nutrition levels for surgery.  He was instructed a high protein diet and insulin shots. I was scared that if we wait too long for surgery this tumor might spread we had no choice since dad was weak and would not make it if he had surgery that time.
My dad slowly went back to his old self after the ercp he is now able to sleep , slept like a baby and his diabetes is better controlled , and went from 140 lbs to 155 lbs .
May 3 -  Dad went to see oncologist and has been cleared for surgery which is this Monday May 6 , 2013. The Dr said gave us a 60-80% that it can be taken out and the day of surgery they first need to see if it did not spread and if it did no surgery will be performed.
I am very scared , nervous, I love my dad so much ; he is only 59 yrs old , every time I see him I just breakdown inside, I never cried in front of him because I have to be strong for him but as soon as I come home I just break down, I wake up crying, as I drive to/from work I cry , sleep crying , I have become depressed because I can't handle this . It been a hard month and a half and I feel like I am being affected more by the news than my dad . He seems calm and happy and says that if God wants to take him, he is ready
The only person that has seen me at my worst is my Husband , he has been my rock and I just love him so much . My whole family is very worried , my mom is being strong for him too, they been married 30 years.
Please , PLEASE keep my dad in your prayers, I will keep everyone updated and sorry for the long post.

Letty

As with many others posting, this was an absolute shock as she is very healthy, active and very health conscious. She always goes to doctors for care and for maintenance procedures.

We live in Eastern US and are planning to get consult visits at a few cancer centers, including Sloan and U. of Penn. Trying to set those up now.

We are also going to pursue clinical trials if she is a candidate.

Right now our heads are spinning. But we are preparing for battle and have a great support group of friends and family.

I'm glad I found this sight.

Lturpin

I have been through 8 cycles (cycle = 2 weeks and one off) of gemzar-cisplatin which was complete at the end of February.  I am just finishing a 6 week holiday and start back with chemo tomorrow with Carboplatin replacing Cisplatin.  The Cisplatin side effects necessitate the change.  Neuropathy in the feet, legs, and fingers are the main problems.  These started to show in the 7th cycle and my feet are pretty numb at this point.  I am still walking to work and have generally been able to stay active although I had to stop some things that were too taxing.  I think staying in motion is a good thing and people who know me have a difficult time believing I have cancer and am in chemotherapy.

My progress with chemo has been "amazing" in the words of my oncologist, Dr. Mohamed Bazzi of Antietam Oncology in Hagerstown, MD.  I am also seeing Dr. David Cosgrove at Johns Hopkins for second opinions, who has supported the therapy plan developed by Dr. Bazzi.  The CA 19-9 marker has gone from 6709 to normal (less than 37) over the course.  The CT scans also show a lot of reduction to the point I can now see the Gall Bladder where initially that was just a big blob.

Dr. Bazzi arranged through one of the pharmaceutical companies for a DNA analysis but that was disappointing.  The main problem being that there are very few approved gene specific therapies.  It would be extremely lucky to hit one of those such as Her2, but not in my case.

The main issue right now is what to do next.  I have decided to keep up with chemo as long as it is effective and I can stand it.  Dr. Bazzi says that eventually the chemo will no longer do the job and we will have to find another therapy.  My hope is that something becomes available between now and then.