Topic: lots of questions for newbie

i cannot believe i am learning a whole new language.  "ascites" "whipple" "mets" "celiac."  normal people don't know what this means.  what a crazy club to belong to!

i have hard questions, but i have nowhere else to ask.  my husband's doctor has a rule.  no discussions without patient present, and that's a good rule, except my husband doesn't want to know these answers:

1.  i have seen the sad cases of many who are diagnosed and die in such a brief period.  is this because they were non-resectable, or has it also happened with chemo that fast?

2.  my husband is already having some low back pain and lots of sweating.  also kind of flu symptoms.  does this sound chemo- or cancer-related?

3.  will anyone familiar with intrahepatic, non-resectable cc with distant mets please tell me their experience, timelines, symptoms, etc?  i am really wanting to knowing what means what.

Thanks everyone

it takes what it takes

Re: lots of questions for newbie

Ana,

I think the doctor's rule is kind of odd, if your husband has signed and designated you as someone who can be privy to his medical care, I don't see why the doc won't talk to you. Decisions are made based on information, if you have none you are hampered in your decisionmaking.

It is not really possible to generalize about why some succumb so rapidly. In my mom's case, she survived for 8 months total, 7 months after her resection and I do believe she would have been gone in a matter of weeks without the surgery.

Patty

3 (edited by marions Mon, 06 Apr 2009 21:01:37)

Re: lots of questions for newbie

Hi Ana.....
Oh yes, you will learn another new language when dealing with this cancer.  All of us have

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: lots of questions for newbie

Welcome to CC 101!~  I totally agree with Patty that the doctor needs to talk with you so you can make decisions. And like Marion said the only thing we know for sure is that CC is so unpredictable. Each time Teddy had sweats and fever it was an infection which I now have learned is common after a Whipple.  Goes with the territory. He has only had radiation and from that he got extremely tired and then itchy. Took about 2 months to calm down. This next week will be a whole new surprise with the cyber knife. I just know someone can give you a better answer on the chemo. Hang in, be strong and be informed.

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: lots of questions for newbie

thanks so much for the feedback.  i'm thinking i should ask the doctor about what it would take for him to talk to me privately.  i think he doesn't want to freak the patient out, or lessen hope, but... anyway, i'll check, maybe a medical power of attorney would do it.

i'll start the search and keep reading!

it takes what it takes

Re: lots of questions for newbie

Aneux,

Definitely get a medical power of attorney.  Then you are entitled to know everything and have the legal right to this information.  Your doctor may be worried about HIPPA standards which have to do alot with privacy issuses.  HIPPA stands for Health Insurance Portability and Accountability Act.  Here is a link that explains it:
 
http://www.opm.gov/insure/archive/health/cbrr.htm

It has lots of good points in it but your doctor may be erring on the side of caution.

When my mom was diagnosed they got living wills made, power of attorney and medical power of attorney with my dad and my sister and myself listed on all.  I'm in the medical field and I will tell you that the squeaky wheel will eventually get the grease.  If your questions are not answered - KEEP ASKING.  I have issues with a physician that refuses to answer questions unless he was explicitly bound by your husband's wishes. (Back to the HIPPA issue)

I once explained it to my mom like this.  If you take your car in for service, watch them spend all day doing tests on it and then they say we'll get back to you in a few days and maybe then let you know something, you would have a fit.  Remember when all is said and done in medicine you are ultimately paying for a service and deserve to get the best for your money. 

Most of the clinicians I know and work with are compassionate and caring.  Before your husband's next appointment call and ask to speak with the doctor's nurse or triage nurse and explain that he is having a hard time dealing with the ramifications of his cancer and that you need definite answers to help him make decisions when you are talking together at home.  Tell them to pass along to the Doctor that you will have a list of questions that you will need answers for and will bring it to the next appointment.

At that appointment ask the questions.  (Hopefully leaving a copy of your medical power of attorney with the office).

You are in a "war" here and you will need all the information you can gather to make decisions and plan strategies.  This board is a wonderful resource and we all help each other.

I know it's frustrating to have to learn a new language but your husband is fortunate in having you as his advocate.  Hang in there.  We are all on a journey that none of us wanted to take and the accomodations all stink!!!!  Come here and vent, ask questions and know we are all here for you!

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: lots of questions for newbie

Ana... Be firm with the doctor and just butt in and ask what you would like to know.  As his caregiver and wife I would like to know what all this means.  If that don't work ask to speak with a patient advocate and explain whats going on.  What kind of doctor diagnosed your husband unresectable?  If it was an oncologist ,then you need to get opinion from surgeon.  Also talk with a radiologist oncoligist to determine if any type of radiation treatment would be beneficial as well.  I know it is unknown and scary waters, but you have to be firm and advocate strong.  You need to get second opinons or change doctors if your unsatisfied with the lack of communications.  That is a big barrier to you being able to support your husband.  I fall in the category of your Item 3 in your above posts and have battled this thing a few months shy of 10 years.  If you want e-mail me direct and I will be more than happy to explain the ropes even if it takes a phone call to discuss it.  Believe it or not there is a low and high grade of this disease which can make a difference on how fast it grows ot mets to other locations.  We are all different and will respond differently for the most part, when dealing with this disease.  We will all approach it differently with different treatments depending on on location and how far advanced.  Again feel free to email me direct by clicking on email under my name.  I'm here to help and explain to the best of my ability.  But I always make it known it is your husbands/patients who has to make the final choice in what direction to go.  Some people have elected no treatment period others have lost everything the ever owned including their homes because of the expense involved.  Alot of tough choices to make in the near future and it's sad but the expense part of it all has to come in to play as well for most.  wish you and your husband the best.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: lots of questions for newbie

Ana,

Not only will you be learning a new language, but you are now living in our world. A whole different world from any you would ever have thought you would be in or would want to be in. I think you have already gotten a lot of good information here. Jeff has been in this for the long haul & has done a good job explaining that nothing about this is predictable. What works for one doesn't work for another. In my husbands case, he comes in under your #1. His first symptoms were in mid July & he passed away Sept 2nd.  His was interaheptic & in 95% of the bile ducts in his liver. No possiblity for resection. It is hard to believe that he appeared to be healthy until those first symptoms in July. By the time they positively diagnoised it as CC it was only 1 week before he passed away. He was too weak for any type of surgery or chemo at that point. In his case, all of the symptoms were caused by the cancer. I am not sure if anyone who was being treated has passed away that quickly. Everyones cancer & treatment is a personal thing & it effects everyone differently. I am hoping for the best for you & your husband. The key is to stay positive, ask a lot of questions and don't give up. You will both need to be strong. Just remember that everyone here is ready to help & support you on this journey that no one wants to take. You & your husband will be in my thoughts & prayers.

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: lots of questions for newbie

Everyone, first of all, thank you thank you thank you.  i appreciate so much even the fact that there is a place to come where everyone knows what you're talking about!! what a gift.  meanwhile, this is just a thank you because i'm sleepy, but i'm coming back to answer each question, comment, and to ask yet more questions... have a great night, everyone.

ana

it takes what it takes

Re: lots of questions for newbie

Ana-

When I came to this place the first time I thought " My Gosh, I'll need a vocab cheat sheet. How will I ever know what anyone is talking about?!"

I started googeling everything. That helped.

I can't answer all of your questions but I can help you with your second question.

I'm my grandmother's caregiver ( her name is Ina. She's 83 and my best friend ;-) ) she has had the lower back pain and the sweats. She did not opt to have any chemo treatment. This would tell me that those symptoms in her experieance are Cancer related not chemo. Because she hasn't had any.

We have her on Oxycoton for a long acting and then oxycodin for as needed. When the sweats start we use a cold pack or a cold wash cloth.

As far as your dr goes. I do understand his basic idea. The patient needs to be involved. That's great, but there may be decisions that you will be needing to make and you'll need information. Some stuff, like you've run into, your husband may not want to talk about.

Everyone here is amazing.

Much love and blessings,
Tonia

Re: lots of questions for newbie

i can't believe it's been december since i wrote on here.  i've been in some kind of shock i think.  we've been doing chemo, had some decent tumor shrinkage, but yesterday evening my husband went into excruciating pain, itching, burning hot skin, shivering, no fever, and weird stools.  so today they checked him, skipped chemo, and are putting a stent in tomorrow.  so i came to read on stents.  i am just overwhelmed right now.  i appreciate y'all very much.  thanks.

it takes what it takes

Re: lots of questions for newbie

Ana,

Welcome back.  I am sorry that your husband is having more problems.  As you said, it is all very overwhelming & stressful.  Every time you turn around there is something else to deal with. You feel like you are running in circles & getting no where.  Keep us updated as to how things are going & remember that we are all here for you. Try to take care of you, too.  I know it seems like there is no time for that, but you need to take care of yourself so you can be strong and be there for him.  I will keep you both in my thoughts & prayers.

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: lots of questions for newbie

Welcome back, when you are up against this thing it can be hard to fit anything else into your life so we understand if you just pop in when you can. I hope they get your husband's symptoms under control soon.

Patty

Re: lots of questions for newbie

Aneux-

I found that once my Mom's stent went it, she got some relief.  In her case, which was stage 4, advanced, and spread through a gallbladder surgery that was aborted, then the cancer spread to the omentum (hopefully not your case), it started the ascities process.  That was not a good development and once ascities takes hold, reversing it is difficult.  Low back pain is typical, unfortunately.  Itching, high bilirubin levels, odd stools, inability to eat, etc. were all a part of the process.  Her pain, I am sorry and sad to say, was never abated in any real way. 

My Mom never developed a fever, interestingly enough.  I don't want to offer only bad information or too much, but you can ask any time and more details will always be provided as you need them from me or our wonderful community of sharing. 

I am taking a Chinese Medicine class now, and they say that people who are told of their disease, such as in Western Medicine, do worse, so maybe the answers to these questions need to be understood by you, but not shared with your husband.  Just a thought, unless he has changed his mind about details.  Maybe he wants you now to be prepared, but not be informed himself.   

I am very sorry that you ever heard the term cholangiocarcinoma, let alone in such a personal way.  My very best to you and your husband.  -ljg

Re: lots of questions for newbie

darla, patty, ljg -- thanks so much for your input.  ljg, i am sure that howard's doing as well as he is because he does not want to know more facts about the disease,  only the solutions, and he is fighting, fighting, fighting.  he's really amazing me.  i'll tell you, cc has given us one big blessing, and that is it has turned us toward each other, and made us closer and more loving than we have ever been (next month is our 25th anniversary).  i never imagined our relationship like this.  it's awesome, but bittersweet, of course.  i will move on to a different forum for updates, and thanks again.
ana

it takes what it takes