Hi Katie,
My thoughts go out to you. I am so happy for you that your family was all together and celebrating his legacy.  We had our first holiday party without my dad who passed away Memorial Day Weekend.  While it was sad not to have dad there, we all shared so many stories and good laughs. I am sure your dad is so proud of you and your family:-)

Dear Hollie,
I am so sorry to learn of Sophie's passing.  She is in a better place but I know how hard it is not to have your "go to" person.  Saying a special prayer for your family right now.  God Bless.

I am so sad to say that my dad past away early this morning.  He fought such a valiant battle all the way to the end.  My sweet brother was with him; he held him in his arms as he took his last breath.  I am so grateful to the beautiful people I have met through this website.  I followed your stories,  I sought your guidance, I took comfort in your replies to my posts, I searched and found answers and even more comfort. I don't have faces or personal contacts, yet I feel such a strong bond with so many of you.  My dad's battle has ended, yet I still keep hope that we will find answers and strength from all who who have come here .  I send my love to all of you!

Thank you, Marion.

Well, there is no trial for my dad.  Unfortuantely, Dr. Bokar said that he does not meet the phyiscal criteria.  He very compassionately and honestly laid the truth out for us.  He said that dad has been on a mission to fight the cancer over the last year and it's now time for him to change his mission to one of quality of life. He has had all the standard treatments, has had three surgeries and there is nothing more they can do.  I had brought my computer with me to type so I could make sure I captured all the detail of the trial, I had used this wonderful site to prepare questions and he is not a candidate.  And, the ironic part is, something happened to the document when I shut down my computer and I have nothing. . .I can't even remember the trial drug to share with all of you who have been such a wonderful source of comfort over the past year. 

I know we will all be fine and life will go on, but right now, alone in a sleeping house, I just can't stop crying. I cannot say that any of this surprised me or anyone in my family.  We've all seen him get progressively worse. He is so yellow and he is on oxygen.  The blessed thing is that he still has his appetite and he is in no pain.  God bless all of you and thank you for always being here. We can only pray that some of the burden of having to keep fighting has been lifted from my dad's shoulders and he can focus on enjoying what time he has left.  He did tell me on a recent visit that he loved opera and that when he was stationed in Germany he used to go to the opera (it was actually cheaper than going to see a movie).  If anyone knows of a good opera CD I could purchase, please let me know.

Over the past couple of weeks my dad seems to really have gone down hill.  He is very badly jaundiced and he is just so tired. He seems to have all the symptoms associated with liver failure, but then again others have said all he needs is a stent.  In any case, we are headed to University Hospital's Ireland Cancer Center tomorrow to meet with Dr. Joseph Bokar about my dad's possible pariticipation in a Phase II clinical trial.  The title of the trial is Adjuvant Therapy for Patients withPrimary Uveal Melanoma with Genetic Imbalance.  The applicable disease sites are Melanoma, skin.  This seems very odd to me but from what my mom told me they have found that this treatment has had some positive results with liver cancer patients. Once I get more information, Iwill post again. Just wanted to throw this out there in case anyone had heard of it and cared to comment. Not sure if my dad will even be a candidate at this point, but maybe the information will help someone else.

Thank you for the quick responses. My dad has an appointment today to find out more about the stent. I know he is worried that it will more than likely require a hospital stay -- he had surgery a year ago to remove his gall bladder, bile duct and part of his liver; he had radiation and xeloda following his recovery.  He had to have surgery again this January for a gatric by-pass. The surgeon said there was a lot of damage from the radiation and there was so much scar tissue he had to do the bypass on the opposite side of his stomach.  Dad had tried the Gemzar and Cisplatin but he couldn't handle it. There is phase 2 trial at University Hospitals in Cleveland which would require him to drive an hour downtown.  He would like my dad to consider that. My parents live in Geneva. My dad has trouble driving that far-- he can't go that long without a bathroom.

I will continue to search this site for information.  It really is awonderful place for support and information.

Hi Kris,
It's been a while since I've been here, I am so glad to see that you are heading out for a holiday -- I hear Greece is beautiful -- A beautiful place for a beautiful woman.  I hope you have an amazing time:-)

It has been a while since I posted.  My dad has been battling this disease since February 09. I don't see him as often as I should-- he was here for my daughter's first communion a couple of weeks ago and seemed to be doing really well. Last week I went to his oncology appointment with him and he had to be wheeled in because he was too weak to walk.  He had blood tests to see if he could go back on xeloda.  The tests game back and he is too jaundiced.  He is now using his oxygen during the day and my mom says he sleeps too much. We were over there today and I spent a few hours just talking to him.  He sent a lot of time sharing memories -- I heard stories I never heard before.  After we got home, I ran out to get some fabric soften and lunch snacks and just sat in the Drug Mart parking lot sobbing.  I know so many people have struggled through this.  My emotions just got the best of me. My mother has been so strong through all of this but it's starting to take it's toll on her. The latest news is that my dad will need a stent, but I don't know if he can handle it.  He doesn't want to go back to the hospital.  He has been in and out of there thiswhole year. The last time was a couple of weeks ago for a blood clot.  How do you know when it's time for hospice?  Could the jaundice be causing him to be so weak or is it the natural progression of the disease? I think that seeing my dad today made me realize that the disease is progressing. I keep holding out hope that he will rebound and we will have a little more time. Will the doctors tell us when it's time for hospice or is this something we should ask for?  My parents do have a nurse that comes twice a week. Maybe that is better for his spirits than to tell him we are getting hospice. He says he isn't ready to "lay down and die."  He wants to "go out fighting."  Any advice, insight?

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(30 replies, posted in Introductions!)

Hi Merilee,
I am so sorry to hear about your dad.  It is devastating news but you have come to the best place for support and advice.  There are wonderful people here and you will find a ton of information. 

Where is your rural hospital? My parents are out in Lake County.  My dad had surgery at UH downtown. He did his chemo at the Ireland Cancer Center in Mentor. 

You can use the search function on this site to find information on everything from chemo drugs to symptoms to recommended hospitals and doctors.

I am sure others will post with information as well. My dad initially had surgery to remove his gall bladder, bile duct and part of his liver.  He had chemo but the cancer is back in his liver. He is currently at TriPoint Hospital being treated for fluid retention which I have learned (from this site) is common. 

My heart goes out to you and your family.

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(6 replies, posted in General Discussion)

Thanks, Kate.  He did have an initial good responseto the lasix but he is not passing urine frequently enough and they are keeping him overnight again.  His protein levels are still really low.  Apparently he has had the biliary chirrhosis from the beginning -- when he had his first operation to remove his bile duct, gall bladder and part of his liver the surgeon said he had it and would have liked to have taken out that part of his liver but it would have killed him. So, I don't think that is anything new. He is really tired, has a very distant look in his eyes, sleeps alot and has a hard time moving.  I told my mom we have to find a doctor that will tell us what is going on.  very frustrating. . .

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(6 replies, posted in General Discussion)

My dad had surgery a couple of weeks ago -- he wasn't able to keep food down so he had a gastric bi-oass surgery.  I never did learn the name of it, but the end result was good.  No more heartburn and food is successfully passing through his system.  The next hurdle is terrible swelling.  He was hardly eating anything, very weak, and his legs, feet and belly were extremely bloated.  They admitted him yesterday and I was there while they did most of the tests (they did the CT scan this morning).  They finally started him on lasicks (don't know how to spell it) and that seemed to help reduce the swelling (he gained 40 lbs. since he left the hospital a little over a week ago).  All of his tests were "good" according to my mom.  When I probed a little more she said the tumor in his liver had grown a little and that his liver was cirrhotic.  He hardly drinks so we can't figure that out?  I have no idea if his protein levels have come up -- they said yesterday that we was very malnourished.  They still don't know what is causing the swelling?  Anyone else experience this? I have read that it's a sign the end is near.  Maybe I am reading too much into what I am reading?

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(71 replies, posted in General Discussion)

Snding prayers and love your way.  Kris is such an inspiration to so many.  Hugs to you both.

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(7 replies, posted in Thought for the Day)

Thank you, Kris!=)

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(13 replies, posted in Nutrition)

Hi everyone, I have good news to report.  My dad did very well in sugery. When I left the hospital a couple of hours ago, he was resting comfortably.
Apparently his stomach was about four times the normal size and had been pushed off to the side by all the scarring and radiation damage from his original surgery a year ago (he had his bile duct and gall bladder removed and his small intestine was reconnected at the liver).  The surgeon couldn't see the tumor but said the area was very packed in and he didn't want to disturb the tissue.  Now we wait for his digestive track to kick in.  They think he will be in the hospital for five days. Kris, I can't wait to share your feedbackwith my mom.  I think it helped her to hear about your experience. I recommended that she check out this site for support. I worry about her being the primary care giver.  We have a "spa date" on the calendar for Friday to celebrate our January and March birthdays. We'll see how the week progresses, and reschedule if necessary. I think she has definitely earned the right for some pampering.

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(13 replies, posted in Nutrition)

Thank you all, so much for sharing your experiences and for your prayers. Kris, it sounds like my dad is experiencing the same thing you did. We are waiting to hear when he will have his surgery (probably tomorrow).  I will share your story with my parents -- I am sure it will give them great encouragement:-)

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(13 replies, posted in Nutrition)

Just wondering if anyone has had any issues with heartburn and vomiting? My dad was hospitalized today because he has been throwing up for about two weeks now.  He also has very bad heart burn. They are going to do some tests on him to see if he has any blockages.  He has lost so much weight and is so weak.  One of his doctors said it was from radiation which he had back in March/April 2009.  Any advice or questions we should be asking would be appreicated.

My brother is an MD studying Chinese medicine.  He has given my dad some supplements to take, but I am worried about the interaction with his chemo (gemzar and cisplatin).  Here is what my mom has said about the herbs my brother is prescribing:

The herbs that Joey wants Dad to take are BCP Herbal Master 3 - on the bottle it says it is a unique herbal food supplement based on a famous Chinese formula in use for centuries.  It has been adapted by Dr. Nan Lu for American health needs and is used extensively in his practic.  Here's what's in it:

Asiatic dogwood, tree peony, Chinese yam, poria, cookes rrhmannia, honeysuckle, Lycium, Alisma, anemarthena, and pheliodendrom.

And American Wild Reishi, which just says it is a proprietary blend of American Wild Reishi.

Also American Wild Ginseng.  It says, on the bottle, that it is made from finest wild ginseng which naturally grows in the American northeast mountanous forests and is harvested at 10-35 years life.

So see if you can find out anything about these three herbal medicines.  Dad wants to start taking them tomorrow but he'll hold off until you research them to make sure it is all right to take with chemo.

My brother went to my dad's last treatment but never mentioned or asked about giving these herbs to my dad.  Anyone have advice?

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(15 replies, posted in Introductions!)

Lainy,
I hear you!!!  I have a couple of people on my staff that run to the urgent care, emergency room, doctor for every little thing.  It's enough to keep up with well visits, strepp throat, etc. for the kids.   I, too, have been putting off doctor's appts.  I am about six months over due for my annual female stuff and mammogram.  But, it's important we take care of ourselves, too.

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(15 replies, posted in Introductions!)

Thank you all so much!  I actually went over to my parents this morning and spent several hours with them.  I was really worried when I saw him on Saturday, but he seemed much more like himself today.  I shared with him some of my findings and suggested he get a second opinion.  He, my brother and my dad's PC (who is a good friend of my brother) all agree that he should start chemo on Thursday.  I did find out that he is going to get both the Gemzar and Cisplatin.  My mom had thought he was only getting the Cisplatin.  I told him that I wanted to support him in any way he needed it.  I was so very encouraged after we had the open discussion.  I told him I would try not to meddle but from time to time if I came across something I would let him know.  He said he knows it's going to be a gruling 12 weeks, but he is ready for the fight.  He has his eyes on making it to next Christmas:-)  He'll set a new goal after that.  I still wish he would consider a second opinion and will tell him about the doctor's at OSU that Mary mentioned.  You are all wonderful people and I am so glad I found this web site.  All the bests to everyone.  Will keep everyone here in my prayers.

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(15 replies, posted in Introductions!)

Thank you, Lainy, for your suggestions.

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(15 replies, posted in Introductions!)

Hi Everyone,
I am glad I found this site as others are not so active.  I have already made several posts, so I guess I should introduce myself here as well :-)

I have to admit I am feeling quite a bit of guilt.  My dad was diagnosed with both gall bladder and bile duct cancer (we don't know which was first).  I have been searching and reading about both and they seem to be similar -- at least the treatment and the aggressiveness.  His surgery was a little less than a year ago.  They took his gall bladder, part of his bile duct (he didn't have the Whipple) and part of his liver.  His surgeon said he would have liked to take more of his liver, but it would have killed him.  His recovery went well.  The doctor wanted him to have radiation and chemo as a precaustion.  He finished his last round of chemo toward the end of June.  His test results showed everything looked good.  He went back in October for an MRI and they found something in his liver.  He had a PET scan and then a biopsy.  The surgeon said he couldn't operate and sent all of his records to his Oncologist.  The oncologist gave him nine months< My dad asked if he did more chemo would it help extend his life. Doctor shrugged and said, "possibly."

I fell into a false sense of security and didn't keep researching and looking for answers.  Now he is scheduled to start cisplatin next week.  Something in my GUT tells me that we need to get another opinion.

I work in the health care industry and I talked with the head of our medical group.  He thought I was on the right path by collecting information so that I could present options to my dad.  He did warn me that if he decides not to pursue them, I need to respect that -- which I will.  I think I just feel like I have to do all I can to help him.  When I was a kid, he was relentless about pursuing solutions.  He never gave up and his determination was admirable.

I did research and found a doctor who treats a large number of biliary cancers at the Cleveland Clinic -- Robert Pelley.  I was afraid it would be difficult to get in to see him so I called his office and they informed me it usually takes two weeks.  I wanted to make sure it was a possibility before I recommended him.  Now I am conflicted because I just read the posts about UH and the Cleveland Clinic.  The Clinic posts were so negative.  My dad is currently at UH -- the Ireland Cancer Center.  I have heard that it's worth it to get another opinion from UH -- got the names of two doctors there who also see a large number of patients with this disease. 

I don't really have a clear picture of my dad's situation.  My brother is the doctor in the family, but he doesn't want to talk about this.  I did ask my parents for their permission to talk to his oncologist, but I don't think I can if I don't get some legal paperwork becuase of HIPAA. 

Anyway, I am really conflicted.  I took my parents to Disney on Ice today and my dad just didn't look good.  He was so quite and had that far off look in his eyes.  He had been doing so well over the summer -- he was just about back to his old self.  It just broke my heart and I can't stop crying every time I think of how he looked.   I know he doesn't like the priest at his church, so I am at a loss in terms of someone to help his spirit.  My mom said he is really depressed.  I worry about my mom as well.

I am going over there tomorrow morning to talk to them about the research I have collected.  Regardless  of whether it's the Clinic or UH or even Cancer Centers of America, reading the posts here, I do think he should get a second and/or third opinion.  My mom doesn't want to go anywhere else unless there is significant proof of a better outcome. 

I am going to do a little research on Mayo. I have seen that come up a lot -- maybe Pittsburgh (That's not too far away for them) and possibly Ohio State?

I am just worried because he starts chemo on Thursday and I have been told that he should hold off on the chemo if he is going to get another opinion.  Will waiting a couple of weeks be bad given the aggressive nature of this cancer? 

Thank you so much for creating this site and to everyone else for being so actively involved in posting.

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(4 replies, posted in Hospitals)

pderat,
I am confused -- has Dave had three treatments at Cancer Centers of America that cost $30,000 or are you saying the three treatments he had where you are currently going cost $30,000?  The one thing I am fearful of about CCA is the cost.  My dad is on Medicare,  but also has United Health Care supplemental insurance.

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(1 replies, posted in Hospitals)

Hi jur777,
I am also curious. I found them online as well and spoke with Jill.  They are 7 hours away from my parents.  I did talk with someone I work with who's uncle was treated there.  He had a brain tumor that spread to his lung.  That was 10 years ago.  I don't know any of the detail, but it sure sounded amazing to me.  I am also hoping an expert can comment.

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(18 replies, posted in Hospitals)

My dad's surgery was also performed by Dr. Siegel almost a year ago.  He seemed very confident that he got everything but wanted my dad to have radiation and chemo as a precaution.  I can't really remember everything.  I did go to his follow-up after surgery.  They couldn't really stage his cancer.  At the time it was no where else.  He went through radiation and a couple of doses of xeloda (he had to stop -- he couldn't tolerate it) and then twelve weeks of gemzar.  He was off for three months and just recently a PET scan showed he had it in his liver.  After the biopsy they said they couldn't operate.  He is now supposed to start chemo -- cisplatin -- next week.  His oncologist gave him nine months.  When my dad asked if chemo might extend his life, the doctor just shrugged and said possilbly.  I have been researching the Clinic and UH.  I know UH is supposed to be the best, but it seems like they have written my dad off.  Candy, who was the top guy your brother is seeing?  I really want to my dad to think about a second opinion.  I have heard good things about Dr. Robert Pelley at Taussig.  Now, I am not so sure about even pursuing that??? I was also told that Richard KIM at CCF Taussig is also supposed to have seen a large number of patients with pancreatic, bile duct and gall bladder cancers.  At UH, the names I was given were Smitha Krishnamurthi and Joseph Gibbons.  It would certainly be easier to get a second opion at UH vs. having to transfer medical records to CCF.  Also, has anyone heard of Cancer Treatment Centers of America?  They seem to have really good outcomes.