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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

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

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

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

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.

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.

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

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

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

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

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.