Topic: New to the site

Hello, I am new to the site. My husband was just diagnosed with cc.  I have to say it has been a whirlwind of activity since March 23rd! He has been very sick since starting Gem/Cis chemotherapy. He currently is having the 2nd paracentesis for fluid buildup. It has been comforting to read what everyone has to say about this disease. I was not familiar with cc so this site has been informative and helpful. I don't know our prognosis or outcome as I have been scared and hesitant to ask the doctors. It has been difficult to face such a drastic change in my husband in such a short period of time. Thanks for providing helpful information.
Wilma

Re: New to the site

Welcome to the site, Wilma, but sorry you had to find us.
Can you tell us more about your husband?  How old is he?  Where is the cancer located?  Where to you get treatment at?
You will get tons of support and information here.

Best wishes,

Susie

Re: New to the site

Hi Wilma,

Welcome to the site. Sorry that you had to find us all and I'm sorry also to hear about your husband. But I'm glad that you've joined us all here as you will get tons of support and help from the great members here.

Yes i can sure relate to what you say about a whirlwind of activity since your husband was diagnosed. I went through the same after my dads diagnosis and I know that your head will be spinning still. But please know that we are all here for you and will help you as best we can. We know how you feel and what you are going through right now.

As Susie says, can you give us some more information about your husband. Like where was he diagnosed and where is he being treated? And did you think or consider getting a second opinion for him. We know what you mean about being scared, that is so natural and we all go through that. One thing I would say is that the better informed you are about everything then the better decisions and choices you will be able to make about treatments etc. I know that you will have questions that you want to ask over time, so please, feel free to ask here and we'll do what we can to help in answering them for you. We are here for you and we care.

Best wishes to you and your husband,

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: New to the site

Hi Wilma,

I don't know if this will help in your hubby's situation but I had fluid drained off my abdomen then was put on Lasix 1x/day.  Really helped me.

Betsy

Re: New to the site

Wilma...some questions are more difficult to ask than others - you might just want to pick and choose.  As Betsy has mentioned diuretics may reduce the fluid build-up; raising the legs and reducing the salt intake may also be beneficial.  If the current chemotherapy is making your husband too ill then often times the physician will switch to another regimen.  Please continue to reach out and ask questions on this site.  We are here for each other. 
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: New to the site

Thank you all for your suggestions and support.  My husband is 59 and up until this time was in fairly good shape.  This all came about after a ct scan of the abdomen for what we thought was an umbilical hernia showed he had cancer.   The initial report was Peritoneal Carcinamatosis with upper section of Liver as well as Gallbladder involvement.  The surgeon did a biopsy of the node from the umbilical area (wasn't a hernia after all) and that's when we were given the Dx Cholangiocarcinoma.  Surgery isn't indicated.  So he is on Gem/Cis Chemo.  They did start him on Aldactone for the fluid.  The first paracentesis 3 wks ago drained off 8.5 liters.  This last one was just 2 liters.  So I think that is better.  I just know he has lost 51 lbs sice Feb 1 and has no energy or appetite.  The nausea is constant.  He is on 4 different types of antiemetics which we rotate around the clock.  We live in New Orleans, LA and he has an awesome team of doctors.  His oncologist is Dr. Marcelo Blaya who is in with Dr. Jayne Gurtler near East Jefferson Hospital.  They are associated with MD Anderson in TX and follow some of the clinical trials and protocol.  Thank you for your support.
Wilma

Re: New to the site

Wilma...sounds like you are in good hands with the physicians.  The feeling of constant nausea is something I am very familiar with, as it is something my husband suffered from also. He was given various anti-nausea medications (Zofran, Emend,etc.) It is one of those trial and error situations and some may work better than others.
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: New to the site

Wilma....I hear you.  It is a frightening situation - I have been there and so have many others on this site.  Wilma, a frank discussion with the physicians will clarify questions we can't answer on this board.  Know that we are here to help you understand and to support you, but the medical information has to come from the specialists working with your husband.  Please continue to lean on us - we are here for each other.
Know that a tidal wave of love is heading your way.
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: New to the site

Dear Wilma, welcome to our extraordinary family but sorry you had to find us. We do understand how overwhelming this CC is, there really are no words strong enough that can properly describe it which is why I like to refer to our members as heroes. Just know that you are doing all the right things. We all react differently but my husband was a big advocate of "Be Strong" and it did get me through his 6 year journey. I am telling people constantly to BE STRONG. Yes, this CC does just sneak up on you and that is one of the biggest problems. Believe me we have posts where some just let off steam and that is OK, that is why we are here but at the same time it would not be fair to people of deep faith and those who try to be realistically optimistic not to give them some HOPE. You just go ahead and post what ever you feel like as this is an open forum. Please do keep us updated as we truly care.

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.

10 (edited by Darla Thu, 10 May 2012 09:40:18)

Re: New to the site

Dear Wilma,

I am so sorry to hear that your husband is not doing well.  Unfortunately, there are some of us on here who have had similar experiences.  I didn't find this site until a few days after my husband passed away.   He was one of the unlucky ones.  He also appeared to be very healthy but passed away 2 months after his first ER visit.  I do hesitate to post this as I do want people to have hope and many are fighting this disease rather successfully.  Jim died in 2008 at the age of 62. Since I have been on this site I have seen many changes and many people who have been doing much better with surgery and treatment.  I too sometimes wonder why that couldn't have been our situation, but I guess in his case it just wasn't meant to be. 

You have every right to be angry and please feel free to vent all you want.  We all understand and are here to help and support each other.   Try to stay strong.  I know it's not easy, but it's all we've got. 

I will be hoping for the best for your husband.  Take care Wilma.  Know I am thinking of you.  Please keep us updated on how he is doing.

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.

11 (edited by ronidinkes Mon, 14 May 2012 07:35:37)

Re: New to the site

Welcome Wilma,
Take it one day at a time, try to enjoy each moment. I feel your anger and understand it well, as I have just lived through it. Please vent, it is very important to get it out, release it. Follow your heart and know we are all praying for your family.
Hugs,
Roni
ronidinkes@yahoo.com

12 (edited by PCL1029 Mon, 14 May 2012 10:56:34)

Re: New to the site

Hi, Wilma,
Below is a reprint and revised message from this forum on 12/6/2011 for another patient.
Hope after reality sets in, you will become more inform about this disease.
God bless.

Hi,everyone,

As patients  and caregivers ourselves,we need to be HOPEFUL ; we need to be knowledgeable ; we need to be current and we need to be REALISTIC and PRACTICAL in search of finding the" possible" cure for this disease.
(we don't have one right now except surgery;and less than 10% of patients qualified.but even after curative resection,recurrence is high ie:75%)

It is always my belief that ,as a patient myself, at this moment,because of the time frame is relatively short for us; the best way to help our CURRENT patients,like me and you, is to  find  and improve  the current  treatments that are  working now(like chemotherapy and radiation treatment)); keep on researching and  prepare by choosing the  more effective treatments with less adverse reactions  for the future in case of the CCA comes back or the current treatment is not working;and keep an eye on the new development of targeted therapy agents like Tarceva ,Nexavar, Avastin and Afinitor as well as radiology treatment options like RFA,Radioembolization and chemboembolization for intrahepatic CCA;,IMRT,(cyberknife),EBRT;SBRT;
PDT and proton therapy for extrahepatic CCA.

We should be vigilant and careful about all the info.we read on the internet. Despite all the advancement in treating this relatively silent  cancer,We should not have FALSE expectation on treating this disease. One treatment working perfectly for one patient did not mean the same will apply to another patient due to the difference in patient's health status;the extent of the disease when discover;location,number and size of the tumor.

Conventional medical treatments are "evident-based "on research as well as clinical experiences; and I think that is why the oncologist said:

-"Cathy this is so new we have no long term data and even though we believe it was all removed there could be one micro cancer cell lurking, but we believe this is a cure. We need you to keep living to prove us right!!"

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New to the site

Thank you all for your words of faith, hope, and encouragement.  I truly am sorry to sound so cold and angry but I am at a loss as to where to go from here.  I do not mean to sound bitter or angry but I am.  I don't want to make light of your hopes and words of encouragement but maybe I'm not in the receptive phase yet.  I know you all know exactly where I am coming from and maybe that is why this is the only place I can truly vent.  My heart is heavy and I can't stop crying when I am writing this.  Just know that my strength and courage is present for my husband and our family when I leave here.  You would think I had a split personality! I can not let them see my fears or my tears.  Thank you for allowing me to vent and say things I wouldn't normally say to anyone. You would never know that I was a hospice nurse.....huh!!  Isn't that irony at it's best or worst?

14 (edited by PCL1029 Wed, 16 May 2012 14:48:21)

Re: New to the site

Hi,
From your message,you wrote"You would never know that I was a hospice nurse.....huh!!  Isn't that irony at it's best or worst?"

I think that is the price the medical professionals,like you and me have to pay for caring  the general public; Be strong and confidant outside ;comforting patients as required ;helping those in need more than you can;and trying to rewind and taking it easy as time allowed.
It is especially  tough if your are the patient or caregiver to a close relative.
But I am sure with God's grace,everything will be ok.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New to the site

I am completely relating to you when you describe all your feelings.  I have felt them all, and anger is a hard one.  I wish you and your entire family lots of strength.  I hide a lot of my tears around others, but the minute I get alone, is when I tend to fall apart.  Stay strong, I know, easier said than done.

Re: New to the site

Dear Wilma,

When I first read your post, I have to admit I was a bit offended. I don't feel anyone on this site sending encouragement to other fellow CC members should be considered "crap" as you put it. I, for one, give my heart to everyone on this site and care so much. That really hurts me to hear you feel like that. This is a place to come for encouragement and a sense of comeraderie. I hope you were just feeling bad the day you wrote that and didn't really mean that. This site is a lifesaver for me. I am sorry your poor husband is suffering and you are scared and worried. I know the feeling. My 26 year old daughter has this terrible disease and hasn't really begun to live her life yet. I am furious about that. That is not fair. I get mad when others complain about having a bad hair day or a bad day at work. Walk for one minute in her shoes to see what it feels like. I understand your frustrations, but please feel happiness for the CC members that are doing well. They give me and I'm sure a lot of others hope. That is all we have.

-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: New to the site

Wilma:
I, too, have times when I'm angry. I come here to vent, as many of the other members here know. I have always been a healthy person. A few years ago I changed my eating habits and started trying to be more healthy. Then March 2011 out of the blue I was diagnosed with cc. No sickness, no warning. Just a gallbladder attack.
I still ask "why me?" And i still get angry. But I love going to the good news section when I'm down and feeling sorry for myself. It gives me hope that i can beat this horrible disease. I don't know what I would do without this family I have found.
And yes, some of the posts hurt. And some of them I can't even read because I get so upset. But without the hope that I get from this site I don't know what I would do.
I don't have a spouse or children to lean on. I live alone. I would love to have someone here to support me and give me a strong shoulder to cry on. That makes me angry, too, that my ex boyfriend decided he didn't want to deal with it anymore. But I WILL beat this, and I know that for the rest of my life I have to worry about recurrence. But I will do what I have to do, and I will have a good life, for as long as God will let me stay here on earth.
We post on here to give and get support. I ask questions, and answer people when I have some experience in what they are going thru. Most of us are patients and/or caregivers. Some are actual surgeons or nurses, or others with a good background. We are here to help each other and for a place to go to ask questions and get support.
And I love each and every one of the people on here that try every day to help us thru this rollercoaster ride.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to the site

Hi Wilma,  This dreaded disease has no rules. Some pass quickly with no response to treatment, some respond to treatment and do well to have it return, some live a number of years, and the few survive. Everyone is working hard to better the prognosis. Getting mad is not a bad thing! Getting mad is better than being in apathy! Many of us here have walked your road and I feel for you. It is not easy. Sending hugs to you and your husband. Nancy

Loving my husband from afar.

Re: New to the site

I would like to thank many of you for your words of acceptance and encouragement.  To know that my anger and fears are normal and to be able to express them without being reprimanded or judged is so valuable and precious to me at this point and time.  Like many of you I am dealing with emotions I can not explain nor do I know what to do with them.  To be able to verbalize my feelings  and know you love and accept me is so precious to me.  I am still in the early fragile stage with many questons and many thoughts.  Still in the fact gathering stage.  Thank you for hearing me out when maybe my expression of frustration was nothing more than fear.  I do have a strong faith system but my husband's is much stronger.  I am praying daily to God for strength, grace, and mercy.  To anyone I have offended (Pamela) I apologize.  That was never my intent.  This is all new to me and being a nurse has not made it easier, actually it is harder.  So with that said, I will remain positive and encouraging with any further posts from here on out.  Again, thank you to those of you who have been uplifting with your words.

Re: New to the site

Wilma...don't set any rules for yourself.  We don't come equipped with special training in facing the possible loss of our loved one. You are traveling a difficult road in unknown territory; the terrain is bumpy, rocky, and frightening.  Just lean on us; we are here for each other.
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

21 (edited by Pamela Wed, 23 May 2012 11:51:47)

Re: New to the site

Dear wzhalb,

I would also like to apologize to you. I was sitting in the waiting room when my daughter was in having her procedure so I was super sensitive when I read your post. I showed my husband your post and he told me I should let you vent because he could see you were scared, angry, panic stricken, etc.  I had already written my response and still felt the same when I wrote it. I know now you were scared and just needed to let your frustrations out as we all do. You didn't want to hear about anybody else's good fortune when things around you were crumbling. I totally understand that now and hope we can get over this and support one another. I hope you will post what you are feeling no matter what. I have no right to tell you what you can and cannot say. I apologize again for opening my big mouth when I should've kept it closed.  I wish nothing but the best for you and your husband. I am here for you if you need me.

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: New to the site

Dear sweet Pam,
It is all ok. Yes we are here for each other. God has joined our lives for a mutual benefit. We are in this together. To be able to talk about this has and is so helpful and rewarding. I have been praying for your daughter, you, and your family. It seems you have a very special husband! A wise man. I guess we certainly can learn from our male partners especially when our emotions are so fragile and sensitive. God bless you and your family and please let me know how your daughter is doing. I look forward to talking with you more. Thank you so much for taking the time to reach out. I'm here for you.
Wilma

Re: New to the site

Dear Wilma,

Thank you for reaching out, remain positive, make every moment count. This disease can be a roller coaster, so just strap yourself in for a wild ride and only g-d know the plan. Take good care of you and your family, we are always here. I have met the most wonderful, strong, people on the website and am forever thankful for these friendships!
With love and hugs,
Roni
ronidinkes@yahoo.com

Re: New to the site

Wilma:

We love to hear the good news, as most of us have stated in one form or another. But many of us have vented and asked questions on this site. It is for all emotions and news, along with questions.

I know you are still fact gathering, so I'm directing you to the new developments section. I am really interested in what Gavin posted today about Thomas Jefferson University in Indiana. While they say it is not a cure, it has worked to kill or shrink the cancer cells. I don't know much about it, but you can be sure I am going to ask my surgeon and my onc about this. My surgeon might know something about it because he's really into research. He's one of the best in the country when it comes to dealing with cc.

And just so you know we really DO vent, and we really DO get scared, look in the general discussion(?) area. I've posted a few vents. Just recently it was "some people just don't get it", all about how people tell me I don't look sick blah blah blah.

I hope you and your husband can find a place and a treatment so you, too, can publish in the good news section. It really does feel good to share good news, even if it's just to say blood counts are good on chemo! We love to be cheerleaders for each other. And keeping a positive attitude, although really hard, is one of the most important things to keep.

I don't know how I would feel as a nurse. You understand much more of what is going on, which is both scary and empowering. At least you don't have to go home to look up things like "resection". I had no idea what that was 15 months ago. I didn't know a lot of things 15 months ago. and I wish I hadn't had to learn but that's how it goes...

A big hug and wishes for some good news for you and your husband.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to the site

Just saying hello and I am still here reading all the updates and posts.  I am praying for each and everyone of you daily.  God bless and keep you in his loving embrace.