Topic: Hello

Hello my name is Chris.  My father in law was diagnosed with cholangiocarcinoma(mets to the abd) in August of 2005.  After a 19 month rollercoaster ride, he is now dealing with septic shock-with an initial WBC of 43(the highest I have ever personally heard of).  Through the grace of God, he is responding to antibiotic therapy and hopefully will once again return home to further fight his battle and experience a better quality of life.  Cancer is not new to Dan.  This is his fourth primary cancer.  He has been told before that his days were numbered.  Each time he overcame the odds, resulting in a stronger man-maybe not physically but spiritually.  He has a passion for life like no other.  Even on his darkest days, he awakes wondering how he can be of service to others, unconcerned about his own physical wellbeing.  I have yet to meet a better rolemodel.  This man has taught me things that my own father was incapable of teaching-and for this I am ever so grateful.
     I chose not share each heartache and milestone in this post, but our family has experienced enough to write pages and pages. I will be happy to share what we have dealt with to anyone that has questions or comments.  We have been to numerous different doctors, dealt with different types of medication/treatments, mets, stents, chemo, radiation, TPN, anemia, ulcers, infections, edema, low albumin levels, drains, fluid in the lungs, cardiac abnormalities, internal bleeding, organ failure, etc.  If I can be of any help to anyone out there feel free to contact me via email or this site.

Good luck to all,

Chris

Re: Hello

Hi Chris,
My Dad was just diagnosed with this type of cancer.  I know nothing about this type of cancer or really any type of cancer for that matter.  How do I know how sick he is.  The doctos say he is probably a stage 3.  It is in both his lobes or nodes of his liver.  He has a stent now but they say he needs a metal one soon.  He was hospitalized with jaundice and really high cholestrol.  I think it was something like 350 and they didn't know what was wrong with him.  He says he is "sluggish".  He doesn't want to compalin so I don't really know how he feels.  I am really scared and feel like I am going to lose him soon.  We met with an ongologist yesterday and he wants to start radiation.  I don't even know how or what that will mean.  Can you tell me where to start?  Anything you can offer would be great.  Thanks

Re: Hello

Dear Father's Daughter,

     You are already headed in the right direction!  There is large amount of information on this site to help you.  My Father-in-law passed away March 5th-the infections proved to be too much for him.  It could not have been more peaceful.  He had everyone with him that he wanted when he took his last breath.  Although it is a difficult time for all, we are truly blessed to have him as long as we did.  Now back to you and your Father.  Gain as much knowledge about this disease as possible.  As I viewed the various websites, it seemed the prognosis for people with CC is less than desirable.  Keep reminding yourself that no two cases are exactly the same.  There are many who go on to live a happy, lengthy, cancer-free life!  In hindsight, I feel we should have sought out a CC specialist in the beginning.  We did find one, an excellent one, but he was not in our insurance plan and at the time we thought our oncologist was doing everything she could.  His name is Dr. Lentz and he is based out of USC in Southern CA.  I do not know where you live, but I'm sure there must be a specialist somewhat near you. 
     Has anyone talked about surgery?  If the cancer hasn't spead(metastasized) to other areas they may be able to remove the damaged areas of his liver.  Chemo(therapy) and radiation are commonly used in cancer treatment.  Chemo involves a medication taken orally, intravenously, or both.  It kills(for lack of a better word) cancer cells.  Radiation involves aiming  "laser" beams at the tumor itself to reduce its size. 
     I am guessing that your Father had at least one of his bile ducts blocked by a tumor, which is why he was jaundiced and had the stent inserted to assist with draining the bile.  Plastics stents need to be replaced more often than metal ones.
     I have so much more to tell you but you are probably overwhelmed already.  Keep your spirits up and remember that each doctor you meet has his/her own opinion on treatment and recovery so do not be discouraged by negativity!  Keep posting, others with much more knowledge than I will respond and I will be happy to keep helping you with whatever you need.

Chris

Re: Hello

Thanks Chris for the information.  I am so sorry to hear about your loss, especially since it just happened.  You said he was a great role model and lived a good happy life and that he had peace in the end.  I bet my Dad and your Step Dad would have alot in common.  My Dad is a pretty good guy too.   That is my hope - peace in the end.  Although I can't even bear the thought right now.   My Dad and I are so close, I can't imagine him not being here. 
I just dropped him off back home after a consultation with the radiologist.  He has a intraheptic tumor in the helium of his liver.   We live in NV but he went to Northwestern to get surgury but was told he was not a candidate becuase it was in both lobes or nodes ( not sure which one)  and that there wouldn't be enough of his liver left to survive.  I am getting the impression that the cancer began in the entry way of his liver and shot through to the other side and now is like a candle burning at both ends.  The doctor here told him he has three options do nothing and maybe he will make it 6 months, have radiation and be sick for 5 weeks and maybe make it a few more months or chemo and radiaition which will make him sick for 3 - 4 months and maybe he would make it a year.  My Dad feels that the risk may not be worth the reward.  Meaning that why be so sick for so long when he is not going to beat it anyway or even gain that much more time.  He is thinking that if he isn't really sick yet maybe he should do nothing.  The doctors in Chicago told him to have radiation.  Can you tell me about radiation.  I have read so much, it is overwhelming.  I read he would get sick from it but that there is medicine that would make him feel better.  The doctor here told him that he would be vomiting and nausiated for the duration but another doctor said that nobody gets that sick anymore.  I know everyone is different but how can anyone make a decision when there is not a definative idea of an outcome? 
I know you said it was a rollercoaster for your family.  I hope it is okay for me to ask you whcih type he had the intraheptic or extraheptic. I guess the one my Dad has is much worse than the extraheptic. 
You are right though, I am so overwehlmed by everything but mostly I am afraid because I don't know what is going on nor what to expect.  I know he needs to make a decision about treatment soon and I have not an idea what he should do.  Anything you can offer would be really helpful.  Thanks,

Re: Hello

Dear Father's Daughter,
   I'm sorry you are having to go through all of this. I don't know how old you are or what your situation is but I hope you and your Dad have more support. This is too much for you to handle on your own! You Dad is lucky to have you and I'm sure he appreciates all of the love and care you are giving him.
   As far as radiation I think my husband is one of the few on this site that I have read about that received it as a first treatment ahead of chemo but after an unsuccessful attempt at surgery.He had 5 weeks of IMRT radiation which is a very focused beam. It is much less destructive than the old type because they guide it with cat scans so they can get it as directly on the tumor as possible. He took Xeloda by mouth during that 5 week period. They then gave him a month to rest and he had brachytherapy. They inserted 2 catheters(drains) into each bile duct(from the outside), they then inserted wires with hi-dose radiation on them. They left those in place for a few minutes and did it three times. He had to be in the hospital fo that procedure. The brachytherapy was kind of tough because of the pain from the drains but he really had few side effects from the radiation or xeloda. All I can say now is that since his treatment they have not been able to see anything on any of his scans. They honestly think the cancer has died. I don't know whether this is a fluke or if it does happen with others but I would definetely tell your Dad to try. My husband has had this ( intrahepatic klatskinn tumor) for 9 months and he feels better than he has for years.You must eat a healthy diet and do all you can to promote liver health. There will be some damage caused by the radiation but as our physician said , scar tissue is better than cancer! You can read my other posts here. I list the foods, supplements etc. that my husband takes and more about his treatment. There is a ton of info here on this site. Just read as much as you can so you can ask the Docs informed questions. Feel free to call on any of us for help. There are great, knowledgeable people on this site. Best wishes!! Mary

Re: Hello

Dear Father's Daughter,

     Sorry it takes all day for me to reply, but I work nights and that is when I spend most of my time on the computer.  Wow! You sound just like my wife and I when we were told of the CC.  We felt like we could spend 24 hours a day gaining knowledge and it was exhausting.  Be careful not to drive yourself crazy by trying to absorb everything at once.  It is easy to forget about yourself during this time, but you need to take care of you as well as help your dad. 
     My father in law's cancer was near the junction of the two bile ducts, the tumor was borderline between intra and extra(that was my take on the doctor's explanation).  It sounds like marylloyd is more knowledgeable about the topic of radiation than I, but I will share what I do know.  For most people, I believe, quantity of radiation is not of much concern.  For my fil(father in law), it was of concern for this was his third primary cancer, and he had received radiation in the past(he  has had stomach cancer and lymphoma starting in the 90's, which shows he was with us for a long time even with these cancers).  We never experienced radiation causing nausea, only chemo which pretty much wiped him out for a couple of days after each treatment.  Whatever may cause him to be nauseous can be counteracted by medicine.
     As a family, we always had a positive outlook regarding CC, including my fil.  I think positive thinking has healing powers-the mind can convince the body about many different things(that sounds alot better in my head than it does on the screen but I hope you get the meaning).  My fil wanted to fight as long as there were still options to possibly get him better.  He was sick, fatigued and sometimes nauseous, but he felt good most of the time, until the final month or two.  When a doctor would tell us, "this is all we can do", we would consult with someone else and sure enough, there was something else they could do.  So don't take one doctor's opinion as gold, each doctor has there own way of doing things, and some are more up to date with new medicines, treatments and clinical trials.  The doctor that gave you a timeframe on your father's life is making a guess, maybe an educated one, but a guess nonetheless.  My fil's was a stage IV by the time we found out, it sounds like you got a better jump on it than we did.
    There are many 'natural' ways (that some people swear by) to help him through this and if he chooses not to seek medicinal treatment, he might want to try some of these(this I know very little about).  As marylloyd said, good nutrition cannot be streesed enough.  You want to be as healthy as possible in all aspects to better fight this. 

Hang in there,

Chris

Re: Hello

Hi Chris,

Things have been really chaotic lately...

The doctors are recommending a second opinion.  They have suggested he go to Ca.  They want to give a referral for a doctor but I don't know of any yet.  I know you said you liked Dr. Lentz but I can't find out anything on Dr. Lentz.  Do you have his first name?  Can you recommend any other good doctors out there? 

Thanks again for your help.

Re: Hello

Dear Father's daughter,

     I remember the chaos.  Yoy will learn to handle it!  I have Dr. Lenz's info(sorry I spelled it wrong the first time) and also another Dr at UCLA.

Dr. Heinz-Josef Lenz
1-323-865-3955
www.lenz@usc.edu

Dr. Ronald Busuttil (UCLA)
1-310-825-5318
1-310-825-6301

     Dr. Busuttil is a surgeon , but he has a very knowledgeable team working with him.  He doesn't have the same 'bedside manners' as Dr. Lenz but he has experience.

Hope this helps,

Chris

Re: Hello

Thanks Chris,

This will help very much.  I am going to give this information to my Dad and hopefully we can get in to see him next week.

Thanks again!