Devastated Dad, looking for help…

Discussion Board Forums Introductions! Devastated Dad, looking for help…

  • This topic has 10 replies, 7 voices, and was last updated 9 years ago by  jtoro.
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  • #40765
    jtoro
    Member

    Try contacting dr. Lenz at USC . He does work at USC norris on Mon and Thurs, but also has a clinic at USC county I believe 1 day a week. He is very experienced with cc. I have been seeing him since the end of May and I live in Orange County.

    #40764
    capodad
    Member

    Kentucky Jack, Thank you! I remember in the past seeing many stories about Suzanne Sommers battles with cancer, I am definitely going to get that book. Nutrition is one of my other concerns right now, not just the fact that she has to adjust to a low fat diet (she’s a stubborn woman) but I truly believe that diet is a key element of health and it is a fact that many foods have proven curative effects, I have also been reading some posts on this site to that effect. The surgery she had was done by a well known Doctor who USED to be the head of UCI’s Liver transplant program, and now has a hepto/bilary practice. sounds good but when I read what happened at UCI I realized that this guy had some issues from his past, but she was desperate to finally get the surgery, and when I met him (post op) I got the impression that he was a beaten man, I know he is capable of brilliance,I read all I could find on him, just don’t know that he has the will anymore to use his god given gift. May be I am thinking to much on all that, just wrestling with why? It’s probably likely that he was right and he did all he could. But after looking at all the alternatives I know that some of the top research and Doctors in this field are just a short 45 min drive from here down at Moore cancer center at UCSD. I have sent her files and talked to them and they would like her to come in for a consultation, I will have to pay out of pocket as the not good insurance she has will not cover outside of our county, but I think its critical to get more opinions, I have been told that their surgeon thinks outside of the box. While its likely that further surgery might not be possible right now, we have to find out her options, like most here chemo is a big hope to manage the tumor’s with hopes of more time….Its a long road Jack but every day offers new hope and an appreciation of the gift of life.

    #40763
    kentuckyjack
    Member

    CapoDad: I’m sorry for your predicament and glad to welcome you as a member of this cancer-fighting club. You’ve got a lot of good people pulling for you.

    I don’t have much to offer to answer your specific questions, but I have two bits of information to offer you:

    1. Most likely you have been told that surgery is the only hope to cure this cancer. Postings I have read on this board indicate that this may not, in fact be true. However, one thing that may have prolonged my life to this point is the fact that I sought a second opinion from a surgeon who operated on livers every day–a liver specialist. My first surgeon was a general surgeon who did not specialize in livers, and he was prepared to operate, but my second opinion specialist reviewed the material and conducted one more test, and then declined to do the surgery. Based on his recommendation, I’ve spent several months in chemotherapy (Oxalyplatin, Gemzar, Xeloda) watching my tumor shrink, and now I’m scheduled for radiation which has some chance of controlling my intrahepatic cholangiocarcinoma. I don’t know if my liver specialist should reconsider doing surgery now that the tumor has indeed shrunk–maybe I need to seek out a bolder liver specialist. But I DO know that if I ever have surgery, I want a surgeon who deals with this area every day.

    2. I am reading a new book written by a celebrity who lives near you–Suzanne Sommers. The title of the book is “Knockout!” Ms. Sommers has written extensively on health and nutrition as a second career. She’s survived breast cancer and some really bad disasters with medical care in your area. So her book details her interviews with doctors who are taking non-traditional approaches to curing cancer. Her book also details her interview with the head of an organization of which I am a member, the Life Extension Foundation. They conduct research and publish a monthly magazine which both promotes the nutritional supplements they produce and publishes articles on cutting-edge treatments for diseases such as cancer. Life Extension also offers a telephone hotline with naturopaths who specialize in cancer. Membership is $75, and talking with the cancer naturopath is free. If you ask, their naturopaths will recommend nutritional supplements which may increase your ex’s odds of survival. I’d recommend at least reading the book.

    Hope this helps. God Bless you all.

    #40762
    capodad
    Member

    Thank you all for your replies,
    Kate I am not sure about the staging, or even the type of tumor as we have had little info from the doctor I have only talked to one in the last 2 months, and that was after the surgery for about 3 minutes !!
    But from ALL the medical reports I have in my possession I think it is considered a Klatskins tumor, it is I believe from the Gall Bladder and cyst duct back up to the hilum at the porta hepatis, and I believe at least one lymph node and the portal vein are also involved, The surgeon said that the Gall Bladder was all but gone, shrunk to the size of a grape and that the tumor had spread beyond the bile duct to the outside of the wall and that there was some involvement of the blood supply, I asked why he didn’t take out all or what he could and his reply was “Why, it wouldn’t have changed anything”. Looking at the Pathology report from after surgery, they did a liver biopsy and the fatty tissue was positive for carcinoma and the “spots” on the liver are benign Quote “Benign Liver and Metastatic Carcinoma of Fat”. I have started looking at the reports on resection of Klatskins tumors and the USC has a good article on it. Basicaly it depends on the involvement of the portal vein and hepatic artery and which side , obviously I am not a doctor so will have to wait to see the Oncologist on Wed (who has limited CCA experiance) and hopefully get more imaging tests done. Appreciate any and all advice on (A) good Oncologist in Orange County California, (B) What are the best tests for imaging at this point, PET scan or? What chemo does most insurance cover (especially local county, indigent insurance) (C) Does the type of surgery she had Roux en Y (not done laproscopicaly) have an impact on the cancer growth ?
    I will keep searching here and elsewhere for the answers. It feels like, as bad as its been the fight has just begun. It’s comforting to know your not alone , Thanks, Gary
    Also Andrea I have many fond memories of Dudley Zoo and Castle. Good luck with your Dad, Some people in this country might think National Health is a bad idea, ( I don’t, I have good insurance here) I would give my left arm to have Donna be there and be eligable. My Aunt who lives in Litchfield has been battling cancer for 2 years and speaks very highly of the healthcare she is receiving. I was there last year and went through Dudley,still miss England. Gaz

    #40761
    s-st-germain
    Member

    Gary,
    My wife Nancy was diagnosed with CC stage IV with mets to the lungs on April 1st 2010 at Scripps Encinitas. Nancy is 49 and we have 2 kids, a 21 year old daughter and a 24 year old son. We live in San Marcos, CA. I searched the internet just like you and talked to my sister in law (a doctor) and we found Dr. Lenz at USC (a county hospital) for a second opinion. Dr. Lenz refered us to Dr. Genyk at USC to see if surgery was an option, unfortunately it is not. However, Dr. Lenz has seen many patients with CC and has an excellent reputation and he highly recommends Dr. Genyk.

    Steve & Nancy St.Germain
    (49) (49)

    #40760
    katja
    Member

    Hi Gary
    This is exactly the kind of situation where I’m so glad for the NHS. I can’t even imagine how you all must have felt when the surgery was cancelled – it’s Donna’s chance for a cure! I’m so sorry for you.

    Just two points I got from your story – the surgeon said it had spread ‘beyond the bile duct wall’? That doesn’t stop surgery – did he have to stop because of the portal vein involvement? A second opinion from someone who has seen more than ‘a few’ is vital. If he did a Roux-en-y then I suspect it’s a Klatskins tumour, not heard of them as often for distal tumours.

    The other thing is you say you think she’s at stage IIIb or IV? Is there evidence that it has metastized elsewhere? i.e distant mets like lungs? Because if this is the case then it probably would preclude surgery. I believe it’s really important that Donna can start some chemo soon (GemCis being standard), in the hope it can shrink or stabilise the tumour.

    I really hope that you can get some answers and treatment consistency soon,

    Best wishes
    Kate

    #40759
    andie
    Member

    Hi Gary,

    I’m not far from Brum! Upper Gornal near Dudley. Dad is being treated at the QE Hospital, Birmingham and so far they have been lovely (he was transferred here when our local hospital couldn’t do anything else for him) He will have chemo at the local hospital which is in Dudley as it is nearer and they will do the same chemo combination that the QE would do. All scans, stents etc will be done at the QE though as they specialise in the Liver where Russells Hall is just a general hospital.

    I will be keeping you and Donna in my thoughts, and remember any questions, just ask, someone is always here to help.

    Andrea

    #40758
    capodad
    Member

    Thank you, Lainy and Andrea, wow that was quick, you have both lifted my spirits on this Sunday morning, I awoke early (again) and may be this was a good thing this time as I am at a point where the support this site offers is much needed. I will keep you all up to date on Donna’s progress and look forward to a better informed “round 2”. Thanks again and Andrea I am also a Brit, been here a long time, but still go back a lot I’m originally a “Brum” but most of my family is down Bournemouth way. I hope the NHS is doing OK by you. Gary

    #40757
    andie
    Member

    Hi Gary,

    Whilst I’m sorry you have had to find this site, may I welcome you to our wonderful CC family. I am unable to answer your questions as I live in the UK but I’m sure someone will be on here to answer your question very soon.

    My Dad was diagnosed with inoperable CC in April after being Jaundiced since February. Like your ex-wife my Dads is Extrahepatic. To date he has had 2 lots of stents fitted, the second one just before his Chemo was about to start, therefore delaying his treatment. We are hoping this will finally start in the next few weeks.

    You and your ex-wife have certainly had a rollercoaster ride the last few months but she has the right attitude and I believe this helps. My Dad is positive and determined to fight this. He was originally told he had a few months to live and no treatment was available, since then we have been told he can have the chemo Gem/Cis but this has been delayed due to Dads stent blocking and the jaundice returning. He had a rough time in hospital as he got an infection and for a few days like your wife he seemed to go down hill a bit, but he has now picked up and is regaining his weight and going out again. Your ex has had a big op so it is understandable that she will feel weak etc, especially if she is doing too much.

    Keep positive, take one day at a time and remember that there are people on this site that know what you are going through and will be here for you and your family. Also when I joined I read the Good news/what’s working section of the forum, after reading so much scary stuff on the internet I found this helped to hear the good news and positive comments

    Best wishes

    Andrea

    #40756
    lainy
    Member

    Dear Gary, welcome to our wonderful family and a big “whew!” to you. I definately would want you in my corner for anything. You have really been through the wringer. The only thing I could add at this point is that you have done everything right and that second opinions are very valuable. I know you will be getting some advise from our Board on who to see in your area and I believe that MD Anderson in Houston and Mayo in Rochester MN will give a phone/e-mail consultation. Everyone is different and everyone has different reactions to their treatments.
    And, no, I don’t find your relationship with your ex strange as my daughter has the same thing. It is the best for the kids.
    Get yourself some rest too and I do believe you are on the right path. Please keep us posted, we care.
    P.S. I know you are extremely anxious right now but once a game plan is in place I promise all will calm down.

    #3895
    capodad
    Member

    Hello everybody, My name is Gary I am 53, about 2 months ago my ex-wife who’s 48 was diagnosed with bile duct cancer, first let me explain, all though Donna and I are not married we are still very close and have been together for 25 years, talk daily and see each other several times a week, we split about 10 years ago, but were fortunate to stay friends, we also have 2 children together. a daughter age 20 and a son age 18 (who lives with me). Three years ago I married a lady that I had been with for 4 years, and yes they get along great, even going shopping together, I feel a very lucky man to know two such great people.
    The reason I mention this is because I have become what I have found to be called “caregiver” to my ex. This has strained relationships with my wife, but we have talked and she is very supportive now of my efforts to help Donna. OK I know TMI !
    About June 1st Donna had been feeling ill for a couple of weeks and came down with jaundice, our daughter rushed her over to the ER where they did some tests and thought it might be Gall Stones, she was sent home and a few days later met with a GI who had her undergo more tests, CT, MRI and bloodwork. By now mid June there was a strong suspicion of cancer on her imaging results. On June 22 she underwent an Endoscopy/ultrasound where they placed in a stent and took a biopsy, the surgeon gave us the bad news, there’s no cure but he told us she was lucky as she was in the 5% of patients who were good candidates for resection surgery. He would refer her to the surgeon at UCI. He called and ten days later she met with him, and he scheduled her surgery for July 21st, Seemed a long time to wait to me when the typical prognosis may be a matter of months ?
    By this time I knew all about the disease and the poor prognosis, she didn’t want to know to much about the details so left it to me, I think I logged over 100 hours online in those 2 weeks. I didn’t like what I saw , but I saw some hope thru surgery and chemo and radiation.
    About a week before surgery the surgeons office called and canceled her surgery as her insurance wouldn’t cover it ? WHAT ? Turns out that her insurance provided by her employer had a $5,000 cap !!!!!!!!
    They referred us to Medi-Cal, Denied, Then MSI (local county indigent insurance) who politely scheduled an appointment for August 2nd to apply, all though the wait time for approval or denial was about 8-12 weeks! Things were getting desperate, I looked at all the options, take her to County Hospital,(none in our County!) I spent up to 12-18 hours a day online and decided that going to India might be our only resort, $7-$10k for the surgery versus $150k here.
    I sold my motorcycles and got together all the cash I could, barely enough. This was now our plan “B”. Some good people rallied and made noise….The director of MSI called one night and said don’t worry were going to push it thru. A week later she got the call and approval, but when she returned to UCI they told her that MSI wasn’t good enough and she needed to get on Medi-Cal ?????? we contacted MSI who referred her to another Doctor/hospital group…she didn’t like the new guy but was desperate at this point. They did the surgery on August 5th. I wasn’t allowed to meet or question the surgeon prior to surgery, which I was not happy about as by this time I knew too much and wanted too know a few things like was he going to be surgicaly aggressive or just look around and sew her up if was a tough one? There had been no more tests or scans of any kind since prior to mid June, almost 2 months ago. I had know idea of staging or type of tumor, I got very good at reading all of her medical records and determined that she had extrahepatic bile duct or klatkins tumor with possible portal vein and 1 possible lymph node ,the tumor was 2.3cm. I needed more answers, but she was in surgery and now she had a chance. Five hours later the surgeon came out and said sorry couldn’t remove anything as it had spread beyond the bile duct wall. He was able to do a Roux en y and advised finding a good Oncologist……..
    The incision was massive 18″ across her belly and a vertical 8″ incision up to her ribcage. NO Laproscopy here, as this hospital doesn’t have those facilities! She is now home recovering, and we have an appointment on Wednsday with an Oncologist who has seen a “few” patients of this type. I haven’t yet found another one locally who accept MSI. I have talked to some good people at the Mayo and down at Moore Cancer center at UCSD. I am going to try and get her a GOOD second opinion and see if we can get her into a clinical trial with hopes of a future surgery. She is tough and wants too fight, she was doing well the last week recovering from the surgery but in the last couple of days she seems “more ill” and I’m not sure if that’s the cancer or just overdoing it from the surgery. So that is our story up to now, if any one knows a good Oncologist in Orange County California , I would be very grateful. Also I just want to say thank you for this website and too the people who post here, all though I came across this site early on I never realized that there was a forum like this. Now I will be researching it in all my free? time.
    I hope that she still has some time I guess I’ll know more when we meet her Oncologist as I still don’t know what her stage is, I’m guessing IIIb or IV…based on what I think I know. I have never cried so much In my entire life I can’t imagine my kids growing up without her she is the rock of the family and I am so spent, but still determined and not giving up. Thank you for reading this, Gary

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