New to the site
- This topic has 26 replies, 14 voices, and was last updated 12 years, 2 months ago by
.
-
Posts
-
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.
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.comDear 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,
DarlaDear 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.
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,
MarionWilma…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,
MarionThank 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.
WilmaWilma…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,
MarionHi 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
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
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
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
- The forum ‘Introductions!’ is closed to new topics and replies.