Topic: So glad that I found you!

Hello big hearted members!  Although I am making my first post, a lot of your stories and posts have already helped me a great deal.  My dad who I love with all of my heart, was diagnosed with inoperable bile duct cancer about 2 months ago. The first signs of his illness were found during a routine Dr. Exam. A test showed that his gallbladder was functioning at 0% and then his liver enzymes were extremely elevated.  While waiting for all of those test results over a weekend ...jaundice set in.  That's when the Dr's began to really understand what was going on and two days later we got the diagnosis of bile duct cancer.    It has already been a very scary roller coaster ride for he and my mother.  Like so many others, he underwent the procedure to have 2 drain tubes inserted and as a result learned that his cancer is inoperable due to it being wrapped around his portal vein, other arteries and veins.  The cancer is also beginning to spread into his liver.   He ended up staying in the hospital for 5 days that go around.  He is home now and contemplating on whether to try chemo or not.  He has been all over the place with this one.  He is doing his homework and plans to make up his mind this week.  He is weak, loses his voice often, experiencing some pain, having trouble sleeping and scared!  I know that he is trying to be strong for my mother....so him!

Dad is 68 years old and he and mom have been together since the 7th grade.  They are the cutest couple I know.  Until Dad's recent hospital stay, they had only spent one night apart...amazing I know!  Needless to say, my mother is a mess and has already had to get put on an anti-depressant.   The hardest part for me is that I live in Wisconsin and they are in Ohio.  I have already made a couple trips back home.  I truly hate living so far away right now!!!  I want to be there for them and spend as much time with dad as I can.

It is amazing how life can change in an instant! I am so grateful that I have found this website.  It is a wealth of information, stories and connections.  I thank all of you already!
Rena

Re: So glad that I found you!

Hello Rena,and welcome to our extraordinary family but sorry you had to find us. I am so very sorry about your Dad and my only question is, has he thought about a 2nd opinion? To chemo or not to chemo is a tough one and sometimes takes days to make a decision but it really needs to be his decision. If he has trouble deciding he might ask the ONC what he feels his prognosis would be with and without the chemo. While we don't really believe in time frames the ONC can give a pretty educated guess. Ours was right on. I know your stress must be great since you are not in the same town and I hope your parents have family where they are. Please keep us updated on Dad and know that you have come to the right place.

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.

Re: So glad that I found you!

Hi Rena,

Welcome to this site. I am really sorry to hear about your Dad. Your Mom and Dad sound like such a sweet couple. What part of Ohio are they from? Where is your Dad being seen? My daughter is the one with cancer. We are from Ohio and travel to Michigan for her treatment. Your Dad will have to make the decision on chemo. Did his doctor say what he thought about chemo? My daughter chose chemo before it was even offered to her. It is rough, but she is young and strong. I think it would be harder deciding when a person is older. I am just sorry about your whole situation and I am hoping for the best.

Sending hugs and 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.

Re: So glad that I found you!

Hi Rena,

Your story has really touched my heart.  The way you describe your mom & dad reminds me so much of my husband and I.  I lost him to CC 4 years ago and believe me, I do know what your mom is feeling and going through.  I still miss him so very much.

I have seen so many things change in the past 4 years.  There is more known now about CC than there was then and many new treatment options are available.  I am hoping your dad will do well with whatever treatment he decides on.

I am in Plymouth, WI about 2 hours from Madison.  I am sure it is hard on you too not being nearer to your mom & dad right now.

Please stay in touch and let us know how things are going.  My thoughts and prayers are with all of you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: So glad that I found you!

Hi Rena,

Welcome to the site. So sorry that you had to find us all and I am sorry to hear what your dad is going through right now. I can so relate to all of what you say as my dads story was most similar to your dad. My dads symptom that first showed was the jaundice. Then loads of tests, told the CC was inoperable as the tumour was also too close to the portal vein.

I know that your head is spinning right now with all of this and having to deal with it all. But please do not give up hope. I was there where you are right now and it is a tough place to be. But please stay strong as your mum and dad will need you to be. I know that it must be so hard living away from your mum and dad right now. But you are not alone in this, we are all here for you. We know how you feel and what you are going through right now. Keep coming back here and know that we care.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: So glad that I found you!

Thanks to everyone who posted!  You guys are so great!  Dad has gotten a second and third opinion.  My parents live in Central Ohio and are traveling to the James Cancer Center in Columbus Ohio for Dad's care.  So far his Dr. Has been great and he is receiving excellent care.  They are about an hour and a half from Columbus which is not too bad for travel. 

My mom is still struggling with it all and has a really rough week.  I am so worried about her.  Dad is still contemplating about whether to start chemo or not.  I do understand that it is a great deal to process and make that decision.  They met again with the oncology Dr this week for a consultation.  I will be supportive in whatever decision he makes.  My brother on the other hand is completely against chemo and would like him to try the herbal supplement route....which is began three weeks ago.  It has for sure been an education! 

My heart feels so heavy and my head is spinning.  I can not imagine how my mom is feeling right now!  I keep telling myself...one day at a time!

Re: So glad that I found you!

RENA, YES, ONE DAY AT A TIME. Surgery is really the ONLY cure so far for CC. What we hope for while loved ones are on Chemo or etc is for that "other" cure to come through. How does Dad feel about the special diet? Perhaps this makes your brother feel like he is doing something to help although we do recommend that if Dad is taking anything that seems strange to you then you need to ask his ONC if it is OK. We don't recommend taking anything out of the ordinary that could interfere with what the ONC is doing so we always say, Ask the ONC. Just a suggestion but you might want to have Mom ask the the Doctor for something to just take the edge off. Is Dad in good health otherwise? Did the ONC say anything about to chemo or not or how much time it would buy him? Looking forward to hearing more.

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.

Re: So glad that I found you!

Hi Lainy!  So glad that I did think to have dad take a list of what what all he is taking ( turmeric, hemp seed etc) to his Dr. appts the other day and all was fine.  The hardest part for me is that Dad does not want to know how much time he has.  My mom says she is okay too not knowing.  I have to admit that it is making me a little crazy.  I know that his cancer is aggressive.  One question I do have is this....Is inoperable cancer that involves the portal vein, blood vessels and main arteries always considered stage 4 cancer???

I did have mom make an appt with her Dr a few days ago and she is now on an anti-depressant.  It of course has not totally kicked in yet, but I am hoping that it will help calm her nerves.  My dad really needs her right now! 

Dad can not seem to get warm at least a couple times a week.  Has anyone experienced this?  Even with several layers on and a warm blanket he is still complaining he is cold.  Dad has never complained of being cold prior to the cancer.

Thanks so much for all of your responses! 
Rena

Re: So glad that I found you!

Rena, you are doing great, you are one step ahead all the time. I think Cancer can  cause chills. If the chills are accompanied by high fever it could be a blood infection which requires a culture that takes 4 -5 days. Teddy would get them about 2 X a year and the ONC would put him on Levequin immediately. It is so hard for you not to be right there. Can the ONC talk to you? If so you might ask him if the chemo is going to prolong Dad's life enough to be putting him through this? That might put your mind to rest about it. I don't know about the stages but someone will. Don't we have a brilliant Board? Sending you a big cyber hug and it's warm! {}

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.

Re: So glad that I found you!

Rena, P.S. I keep forgetting to tell you that I used to live in Milwaukee. We were practically neighbors.

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.

Re: So glad that I found you!

Rena....As far as I know, Cholangiocarcinoma has three different staging systems:  Bismuth, Blumgart, and the American Joint Committee on Cancer.  However, for our patients it is of most importance whether the tumor(s) can be surgically removed however; if there is involvement of the portal vein or adjacent organs,  lymph node(s) are positive, or metastatic disease is present then the likelihood of such resection is slim.  Having said that, we have seen some surgeons operate whereas others may not; hence it is really important to consult with a surgeon "very familiar" with this cancer. 
Cancer patients complain of being cold and I am wondering whether it has something to do with the loss of weight.   Feeling cold most of the time differs from having chills with elevated temperature.  This, as Lainy has mentioned, may be related to an infection and has to be reported to the physician. 
We also have many reports of rigors.  These are episodes in where suddenly the temperature spikes and is accompanied by chills (for a brief time only.)  I would cover my husband with a down comforter and often time curl up to him until things disappeared again. 
I hope this helped.
Hugs,
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: So glad that I found you!

Hi Rena,

One day at a time? Great way to look at things and I did that too with my dad and that helped us a lot! As to your dad and the chemo and his special diet, how does he feel about everything? I know you say your brother does not want your dad to do the chemo and would rather he stick with this diet, but I would say that as to diet or chemo/no chemo, my opinion is that it should be your dads decision to make. When my dad was diagnosed and he got his treatment options etc, I said to my dad that he should do whatever he wanted to do and that I would support him in whatever he decided to do. Just my 2p worth here.

Also just wanted to chime in on your dad saying that he gets cold a few times a week. When your dad gets that way, how long does he feel like that. Minutes, hours or what? My dad used to get bouts of chills and shaking that Marion has mentioned to you which is unlike what Lainy talks about. His chills used to come and go so it was not an infection that he had. It was weird and pretty frightening the first time that it happened to my dad. He would get cold and start shaking and this feeling would just come out of nowhere. Then it would stop just as quickly as it started. It happened every now and again and it was something that he got used to once he learned that it was quite common. Hope some of that is useful to you.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: So glad that I found you!

It's been challenging evening!  Ironically dad had a really bad episode of rigors/shaking this evening.  My mom called me and she was crying and saying that dad was shaking really bad and it had been going on for about 20 minutes.  Somewhere in the middle he threw up.  The blessing was that an hour before she called, I literally had just read all of your posts on this very subject (thank you). I was able to calm mom down and share with her what you all have shared with me.  She immediately calmed down once she realized this can sometimes happen.  Of course it scared my dad too. Mom warmed up blankets in the dryer and sat and held him until the shaking stopped.  Thank you Marion's for this idea!  It really helped!  I told mom to take his temperature once his shakes stopped and he did not have a fever.  He didn't feel we'll yesterday at all and mom said that he was very quite all day. I hope nothing more is brewing!!!

Lainy..my husband and I both travel to the Milwaukee area often for our work.  I love the areas along the lake! 

Darla..you are really close! 

Gavin...I agree with you in that I too told my dad that I will support him in
whatever decision he makes about the chemo.  My mother over heard him tell his mother today that, "when God decides it is his time to go...he will not have control over it".  While that is hard to hear, it brings a certain peace at the same time even though I am still struggling with the whole concept that this awful disease may steal him from us. 

You guys really helped us with our scare today!  I know that this is more than likely the beginning of this roller coaster ride...unfortunately!

Rena

Re: So glad that I found you!

Rena. Does Mom have anyone near her that can help if she needs it. If at any time Dad runs a fever of 100o or more when he gets the rigors he will need to go to ER. His ONC also needs to be told that the rigors and the nausea is happening as well. If Mom is prepared it may help her to be a little stronger. I used to put 3 blankets on Teddy then crawl on top. I always ended up having him go by ambulance as #1 the chills were outrageous and #2 he would get so weak from it that I couldn't hold him up and  #3 in ER here, you only get seen immediately if you come in by Ambulance .
I hope things stay calm now.

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.

Re: So glad that I found you!

Rena,

I understand exactly how your mom is feeling.  It is scary, but dealing with everything that happens on a daily basis sometimes kept me too busy to even think about it.  You are a wonderful daughter and I am sure that your parents appreciate all the help and support you are giving them.  It isn't easy on any of the family, but yes, all you can do is take things one day at a time.  That has always been my motto.  Take care and let us know how things are going.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: So glad that I found you!

Hi Rena,
I'm so sorry to hear about your dad. I am new to this site but it is great to have found it! I was diagnosed in June with CC and was able to have a resection to remove the ducts, gallbladder and 60% of my liver. I have had those chills too a couple times. The best thing I have used every day since this has begun is my heating pad with an extension cord which I take every where. Both my husband and I are taking antidepressants that were prescribed while I was in the hospital. Chills with a fever need a trip to the doc asap. It is easy to get an infection in my experience.
I am from Ohio too, the Akron/Canton area. I am also still debating about chemo. I go for a 2nd opinion on the 26th. It is an individual decision, so whatever your parents decide is best for them. I'm glad to hear that he is trusting God on this. For me, I have complete peace, which I am sure comes from Him.
I hope your dad and all  of you can enjoy your holidays and just take each day as it comes.
Best wishes,
Laura

Re: So glad that I found you!

Dad had another shaking/rigors spell a little while ago that lasted 20 minutes ago. This time he felt it coming on.  It was very scary again for both he and mom.  Mom took all the advise that I gave her from your suggestions and managed him through it.  She took his temp once the shaking calmed down and it was 101.9. She called me right away crying. I told her to wait 25-30 minutes and take it again.  It then went down to 100.2 and 30 minutes later it went down to 100.1.  Dad is exhausted now and does not want to go to the ER. 

I'm wondering what you all think?  I know from previous postings it is encouraged to go if the temp spikes over 100 *.  Dads Dr says to go to ER if it spikes over 101* and because it dropped quickly below the 101* he wants to wait to see if it goes back up before going to the ER.  He has also been clammy much of the day.  They do plan to call his Dr. First thing in the morning to share everything and get advise.

Laura...glad to meet you and thank you for your encouraging words. I can hear your strength through your words!  I wish you the best and please keep me posted with your chemo decision.  How are your kids handling everything?

Darla & Lainy....you ladies are awesome!  Thank you bunches for your encouragement as well.  Mom and I appreciate the ambulance advice.  All very helpful!

Rena

Re: So glad that I found you!

Rena, Dad should be going to ER, there is something going on be it an infection or something else. They need to do a blood culture which takes 4 -5 days, however the ONC will usually order a MED like Levaquin (what Teddy took)  and get him started. Why allow this to keep happening to an already sick man? He is using all his strength  and everything he has to fight this off each time and the more it happens is that much less strength he has to fight the CC. Does Mom have anyone near her who can help her? Family or friends. If he goes to ER and they find nothing wrong, hey great, but at least what ever it is can be stopped from getting more out of hand.

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.

Re: So glad that I found you!

Rena....Has your Mom called the physician?  If indeed it is an infection, antibiotics need to be started asap.
Hugs,
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: So glad that I found you!

I did just mom & dad in going to the ER!  Thank God!  They are on their way now!  Mom does have some support of relatives, friends & neighbors.  They have been helpful and I am so glad that she is not there alone to deal with it all since I am 7 hours away and my brother is an hour and a half away.  Up until ow, mom & dad were the caretakers of both of my grandma's, so other family members have had to step up and help with them who are both in their 80's.

I will keep you posted on the ER visit.  Dad is supposed to get his plastic drain tubes out and replaced with a metal stent the first week of December. 

Thanks for the push!!!
Rena

Re: So glad that I found you!

Oh, Rena, thank God. I am so relieved. And you will be too. I was so afraid I was being too pushy, but, been there done that. Good girl, you did good. Yes, we will wait now to hear what they say. I really understand what your parents are going through as I was taking care of Teddy and my Dad passed at 93 and a month after Teddy my Mom passed at 94. How is that for longevity? I think they call your parents and me the  "SANDWICH" generation as we take care of our parents and our kids. Looking forward to your update!

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.

Re: So glad that I found you!

What a whirlwind of a weekend!  Dad does in fact have an infection brewing.  Once at the ER they began antibiotics right away!  He another Rigor's episode today!  Enough already!!!  Poor dad is wiped out from 3 episodes of Rigors since Friday!  His Dr now plans to remove his plastic stent and replace it with a metal wall stent 2 weeks earlier (next week).  They are working on setting that up now and in the meantime the antibiotics can start doing their job! 

Lainy thank you for pushing me!!!  Really, I felt the urgency in your post!  Thank you! 

Last night as I was trying to fall asleep, I had a thought....CC patients once diagnosed should be sent home with a manual on this illness!  There are so many situations that can occur at any given time.  Thank goodness for this website and all of you!

Rena

Re: So glad that I found you!

Rena...the metal stent has a lesser chance of becoming infected than the plastic one.  Hopefully this will also reduce his shaking episodes.  Keeping my fingers crossed. 
Hugs,
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