Topic: New Member Post

My husband was diagnosed in July. He is 67. Our primary physican sent us to UC in San Francisco. We saw Dr. Roberts, a transplant specialist at UCSF. After reviewing the CT scan done at our local hospital he thought he could operate. He hospitalized John that day. The first thing that needed to be done was to get his bilirubin count down so that they could operate. The next day they performed an ERCP trying to place a drain but were unsuccessful. The following day they did a laparoscopy to place the drain and do a needle biopsy and an ultrasound. The results showed that if wasn’t a primary liver cancer but originated in the bile duct, cholangiocarcinoma, and spread to his liver and two lymph nodes next to the liver. At this point Dr. Roberts said he couldn’t do the surgery.  However another doctor on the team, Dr. Corvera, said he thought it was a possibility. He ordered a PET scan that showed that the cancer had not spread past those two lymph nodes and that John was otherwise very healthy with no other disease.  In order to do the surgery they had to get his bilirubin count down to 5 or below. Dr. Corvera wanted the interventional radiologist to place an additional drain. The IR team was against placing another drain stating that it was “too risky”.  They sent John home on the July 30th with the hope that he could get his bilirubin down and gain back some of the weight he had lost in the hospital. They gave John an appointment to see Dr. Corvera two weeks from discharge and asked him to obtain a blood draw locally in one week and faxed the results to his clinic.
On August 4th he developed a fever and after being seen by the Emergency Room Doctor locally was sent by ambulance back to UCSF Parnassus. He stayed for three days getting antibiotics by IV. We did not see Dr. Corvera during this time, only the chief surgical resident whom we had been seeing regularly during his previous stay.
On August 15 we saw Dr. Corvera in his clinic and he was not very positive about the surgery but was willing to go ahead if John wanted. Since John’s bilirubin count was still high he said they would need to place 2-3 additional drains. In addition he would probably need a feeding tube to help him gain weight and get his nutrition levels up for the surgery.  When I reminded him that the IR doctors thought placing more drains was risky, he said “he could talk them into it”.  He would have to take out two-thirds of John’s liver, as well as reconstruct his bile ducts. The surgery was extensive and involved risks during and after.
John opted out of the surgical intervention, even though that is the only real cure. He decided to have a metal stent placed internally so he could get rid of the external drain. We were told that the placement of a mental stent precludes the option of surgery, but it was never explained why this was.
I wasn't happy with the way information was given at UCSF. I had to figure out the diagnosis of cholangiacarcinoma when they told me the biopsy showed Adenocarcinoma and I Googled it and that's when I first read about cholangiacarcinoma.
Although the stent relieved him of his symptoms, his appetite is poor, he has lost lots of weight even though I am giving him high protein shakes with all kinds of supplements. He is taking Essiac - a herbal supplement and different vitamins etc. His energy level is low as well. We are seeing a local oncologist who advises not to do anything as long as John is feeling okay and to wait until symptoms return to maybe do radiation to help shrink the tumor. Although my husband is aware of his condition, he is trying to stay optimistic and doesn't really want to discuss his cancer.
I am disappointed that this website has not updated their website under "alternative care" and "palliative care". I have been checking regularly for a few months but it keeps posting "coming soon". I gues I just need advice and guidance.
I am sorry my story is so long. It is hard to condense such a ordeal. For those of you who have stayed with me so far - thanks for listening.

Re: New Member Post

Dear Sue, I am so very sorry for what you and your husband have been going through. I cannot imagine trying to sort things out in an already confusing situation let alone having different opinions from the same place where you hope for everyone to be on the same page. Just know that you, yourself are doing all the right things. My only thought is, perhaps there is another Hospital not too far that treats CC and you could find an ONC there to read all the LABS and test results and offer a 3rd opinion. It is good to have your husband's attitude but a lot of us find that it does ease things up to talk about it. Yes, it's hard at first but after that it seems to even be cathartic. Not sure what you mean about our  "Alternative and Palliative Care" Category. Are you refering to the Home page Discussion Board? If so, that is where a lot of members have posted their experiences or asked questions.
Hang in here as weekends are a little slower but I know you will be getting more responses. Please keep us updated as we do care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by PCL1029 Sat, 24 Nov 2012 11:59:45)

Re: New Member Post

Hi,
Every patient is different in the decision making for the treating this disease.
CAM ( complimentary and alternative) treatment is another way some of us who wants to go this route. I personally believe it will help the overall picture of relieving symptoms and strengthen up the overall health status to a limited extend. For example, ginger for nausea,gingsing for breathing and energy,milk thistle for cleansing the liver and Essiac tea as you mentioned for the need you are believing in. Alternative care like acupuncture may help if the practitioner is Very experienced but the quality of treatment is different  among them and even different degree  for the patient each time by the same practitioner (ie: the placement of the needle,the depth of the needle,the duration of the treatment per each needle,the herbs the needle area used ,among others is through experience rather than just degree and knowledge of that practitioner. It is ,in my opinion, very difficult to find a good one here in the States or Europe than in China;but if you are lucky and can find one ,it will help to relieve pain and restore the overall energy field for the body. Yoga and meditation proven to help patient for the stress of cancer. But they cannot shrink the tumor,if lucky,it may prolong the time .
I agree, but not disappointed in providing CAM and other non traditional method for treating this cancer on this message board. I myself, a patient of this cancer for 44 months, besides taking the chemotherapy,still open to the ideas of  using complimentary medicine like Chinese herbal medicine; other smart caretakers I know using other products through their own research after they learn or read about the information from our web site as well as on others. And if you are interested in using CAM as the treatment of choice for this disease,this may not be the site you want solely to relied on.
I believe we do not put more emphasis on CAM simply because of their effectiveness and the uncertainty; and the lack of true and proven efficacy  of CAM from my point of view being trained in the western medicine culture.
http://www.cancer.net/all-about-cancer/ … e-medicine

With regard to palliative care, the need and degree of care  is different from patient to patient ; you can choose quality over quantity of life after careful research;you can choose pain medicines to escape the reality;you can choose the standard palliative care suggested by the doctors; you can do it at home or at the hospital or at hospice. Or simply do nothing .But as a caregiver myself also, sometimes the path and length of making such a decision will be provided by the condition of the disease progress rather than day to day planning for the patient. But if you read our members' experience on the discussion forum often, you will have the most useful and  up to date sense of taking care the patient in palliative care and I do believe that is the best forum about palliative care advise.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member Post

Sue...…. Hello, I wanted to join in and welcome you and answer a few questions.   
Metal stents are permanent. Both metal and plastic stents (often times) are embedded in the tumor however; nothing adheres to plastic whereas metal stents will have tumor in-growth or overgrowth.  Both will occlude (plug up) but metal (by far) outlasts plastic -metal approximately 1 year vs. plastic 30 days to 90 days. 
My hope is that John will feel significantly better once adequate drainage has been achieved. 

Sue, I am wondering: in regards to interventional radiology, have you considered obtaining a second opinion from Stanford? 

Also I would like to apologize for the not addressed “palliative care” thread on our site. Frankly, the entire cancer community is lacking clinically sound palliative care information.  This problem is being addressed by NCI, Nursing Society, ASCO and others.  We would like to offer clinically sound information and are looking to focus on this section within the next few months.  Ideally a nurse in a palliative setting would be able to help us out because; the numerous requests I have made to Hospice have not been answered as of yet.   
Hang in there, dear Sue.  This is a difficult disease to treat and due to the underlying issues of various stages of disease progression patient responses vary greatly.  I also wanted to ask:  does John have problems digesting food or is he nauseous? 
Hugs to you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New Member Post

Hi Sue,

I'm sorry I can't answer your questions. I would like to welcome you to this site and say that I am sorry your husband has been diagnosed with CC. He sure has been through a lot. My daughter has CC, but has not had to have stents or drains, thank heaven. I think it makes such a difference when you like the facility and doctors you see, We are very happy with both and trust her oncologist so much. I hope you can find somewhere that offers your husband excellent care and you feel comfortable that they are doing everything possible for him. God bless you both.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.