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Gullbadder cancer

mere1952
Posts: 1
Joined: Sep 2010

Hi,
My daughter is 25 years old, she has Lupus and now found gullbadder cancer..she went into surgery and they removed the gullbadder and now they say its in her liver and stomach and they put her on a chemo pill that makes her very tired can anyone give me any information on this terrible cancer thanks

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Mere1952
Sorry to hear of you recent news about your daughter. Fighting lupus is hard enough by itself, now to add cancer to the situation is heartbreaking. I was a caregiver for my dad he passed in March from esophageal cancer which went into remission for one year, and reared its ugly head in December in his liver. I would suggest going to the stomach cancer discussion board as well as the liver cancer discussion board. She is young, that is to her advantage. You can also find help and comfort in the caregiver discussion board. I would also suggest asking a lot of questions about the chemo, will she be getting radiation, and is there a chance of surgery? Keep a notebook with you to journal in. You will need this to look back on and to keep track of everything. Keep in touch. We are always here for you. Peace and prayers.
Tina in Va

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi,

Welcome to this forum. I'm so sorry to hear about your daughter, she is so young. Lupus is a terrible disease by itself and now to have gallbladder cancer on top of everything else is just awful. What stage did they classify it as? The forum for Gallbladder Cancer Stage 4 has evolved into Gallbladder Cancer all stages. Take a look at it, there is some useful information there. It is not uncommon for this cancer to also be in the liver and stomach. I am a gallbladder Stage 4 cancer survivor. I was diagnosed in 2005 and I'm still here to tell about it. Is she on Xeloda? This disease makes you very tired a lot. Ask any questions you want and we will try to help you. What part of the country are you located at? It makes it easier if you can connect with someone in your immediate area who has already been down the road that you and your daughter are embarking on. Some of the information on the Internet is dismal at best but talk to us, we all need to help each other.

Take Care
Lily

Linda1949
Posts: 13
Joined: Jul 2010

Lily,

Sorry I haven't been on for awhile. I just finished my chemo with Xeloda and radiation together (adjuvent therapy) I was classified as stage 3C gall bladder cancer. I had the gall bladder removed and a 2nd surgery for liver resection. No apparent spread to liver but 12 of 15 nodes removed were malignant. I had no trouble at all with the oral Xeloda or the radiation. They radiated 4 fields front, back, left and right sides of my abdomen. I am waiting now for 4 weeks to "cool off" so I can have another ct scan. I had some nausea but the pills took care of it. I am able to eat anything I want so that hasn't been a problem. I'm able to get on my treadmill for a little while everyday but my only complaint is the fatigue but figure I got off pretty easy compared to the side affects I read about. All though I feel pretty good I can't get the DRs. past the gloom and doom stage. I want to have more chemo with the 2 drugs that you took and Cheryl is taking now but I'm getting a little resistance from my oncologist. I changed oncologists once because of the gloom and doom so hate to change again. They seem to think its just a matter of time before it shows up again. He actually told me I had 0% change of surviving this cancer. Isn't that pleasant. I've decided to wait on the ct scan and then if he won't move forward with more chemo then I'll get another opinion. Thanks for all you do for all of us.

Linda

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Jan,

I love your comment!

You are a fiesty lady!

Made me laugh today!

Hope you and Don are doing well!

Take Care

Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Linda,

Was just thinking about you the other day and wondering how you were doing? Sounds like you have handled everything in stride and did quite well. It is understandable that you are tired. Your body has been put thru hell and it needs time to recover. I'm sure that you will be anxious for the four weeks to fly by and get the results from the CT Scan. Hopefully the results will be good and you can relax a little.

I don't think many doctor's can get pass the doom and gloom. They treat so many patients with no results that they don't want to seem too optimistic. You have to be happy with your doctor and what they have done for you, if not find someone else. Again you have to be your own advocate. Some oncologists don't like to take over patients from other oncologists, but ultimately it is your choice. They all seem to think that it is just a matter of time and it will come back, even some chemo nurses are like that. I remember my last treatment day, when I was done I hugged everyone and said my goodbye's. There was one nurse (I never really liked her) who said "Oh you will be back, everyone always comes back". I wanted to tell her a few choice words but I held my tongue and thought consider the source and let it go. I have never had to go back into the chemo treatment room and I hope to never have to. I think that since there hasn't been much research recently for this disease they are just going by what has happened in the past.
0% chance of surviving I think I would have a few choice words for that person. What gives him the right to even say something like that? He isn't the one that makes those decisions! It makes me very angry to think that he has the arrogance to say something like that. I agree with Jan's statement! She is so right.

Side note: I see you also wrote a note to Cheryl and she might not respond right away. She is having a little bit of a hard time with her treatment and is trying to take care of herself. Jan is a great resource so talk to her also.

Take Care of yourself and let us know how it is going.
Lily

Linda1949
Posts: 13
Joined: Jul 2010

Lily,

As always thanks for your support. If it wasn't for this blog I would have no hope at all. I certainly don't get any from the Drs. I will keep in touch and let you know whats next for me as soon as I get my next ct scan. I want to do all that is possible to beat this thing. I don't want to just sit around and wait for it to show up again. If it means changing oncologists again I will. How can they be in this field if they are so negative? I was very pleased because I had minimal side effects from the chemo and radiation but an unknowledgeable nurse burst my bubble by saying that she hopes its working because without side effects she would be concerned. What a thing to say and she works in the radiaiton department too. It never ceases to amaze me the comments that medical personnel make who should know better. I'm keeping Cheryl in my prayers.
Thanks for your support.

Linda

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Linda,

You are very welcome. Without supporting each other we all would go crazy. We need to have hope and faith to endure such awful circumstances. Hopefully the CT Scan will have the famous words "No evidence of metastatic disease", which would be great news. You can't wait for something happen you just have to live your life day by day, as you have been given another chance at life. I really don't understand how people in this field can be so unkind and not even realize it. They have become so jaded that they no longer have compassion. You are so lucky that you had minimal side effects. Maybe you caught your disease in the early stages and therefore your quick action was to your advantage.

Let me know how it goes.

Take Care
Lily

maudsie
Posts: 54
Joined: May 2010

Hi Lily, and all of you here on this forum. i do most of my forum writing on the cancercompass.com site, and sometimes on rare-cancer.com, but I always check in and read what is going on here with great interest and sympathy. I have GBC Stage IIB (sometimes Stage III classification depending on who is classifying). Anyway, after 2-1/2 years living with my port, and over a year past my last IV chemo, today is a big day. I am having my port taken out! My last few scans have been clear and tho we will continue close watch, I am starting to do a (small) victory dance. Toward the beginning of all this, I never would have predicted I would see this day. Hope for all of us!
Take care,
Maudsie

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Maudsie,

Having that port removed is a great thing! It has been a constant reminder of what you have been thru and you have done your time with it so it just needs to go that way you can put that memory into the past. I will do a happy dance with you for this milestone. I did a major happy dance on October 13th as it was 4 years ago that I had my surgery after 11 months of chemo. How often now are you having scans? I finally passed the every three months mark and now I am on the every 6 months timeframe. I think that in the beginning it is hard to look forward because you are just trying to get by day by day. Then in a blink of an eye the years just start to click by. There is hope for this nasty disease becuase we have survived it and are helping others to know that they too can be survivors.

Take Care
Lily

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: I, too, am very sorry that your daughter has this disease. But she is young and strong and will beat it. I too have gallbladder cancer, Stage IV (diagnosed April 2010) that spread into the adjacent liver and some nodules are present on the upper intestine. But I'm in great shape, teaching at the university a day or two a week, seeing my friends, and undergoing chemo (not radiation). The chemo I do is the same as Lily's - Cisplatin and Gemitibine (or Gemzar). It is a tough one but I've been OK, probably because I was healthy to start with. But I see your daughter is taking a chemo pill. Anyways, let us know how she is doing - there is a lot of information out there on how to cope with it and do very well.
Cheryl

Linda1949
Posts: 13
Joined: Jul 2010

Cheryl,

Sorry I haven't been on for awhile. I just finished my chemo with Xeloda and radiation together (adjuvent therapy) I was classified as stage 3C gall bladder cancer. I had the gall bladder removed and a 2nd surgery for liver resection. No apparent spread to liver but 12 of 15 nodes removed were malignant. I had no trouble at all with the oral Xeloda or the radiation. They radiated 4 fields front, back, left and right sides of my abdomen. I am waiting now for 4 weeks to "cool off" so I can have another ct scan. I'm hoping for more chemo after the ct scan. The Drs are still so gloom and doom. I just have to shake it off. Hope you are doing good. I was lucky that my incision healed quickly so I was able to start radiation and chemo at 5 weeks. Now I'm playing the waiting game. Take care and keep in touch.

Linda1949

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Linda: Sorry, I've been off-line for a bit. Had a bit of a set back, but as it turns out not with the chemo therapy but rather with something I found out is called ischemic colitis. I ended up in the hospital twice for 5 days each (the first time after 28 hours in emergency!), and finally had a scope that showed this dead tissue in my colon that had caused bleeding from the colon (which was scary), nausea, and a high fever. I ended up having two transfusions and was on antiobiotics for a week or so. But now I feel great. I see the gastro specialist on Thursday and resume chemo on November 2 (they stopped the regime not knowing what had caused the bleeding from the colon). I must admit, I'm enjoying the time away form the chemo. I did stop teaching, however, and my grad student has taken over the course. I'll miss the money but not the stress!
Anyways, my gallbladder cancer is stage IV, they removed the gallbladder with its tumour and part of the liver where the tumour had spread into. From what I'm hearing, it may be best to remove the gallbladder and tumour to up the survival rate (another person with this cancer in Saskatchewan upped his survival chances from 2% to over 50% - his was removed at the Mayo Clinic). So, who knows, but it would make a research project for someone if there was any funding for this nasty cancer. I am taking cisplatin and gemitibine. I think the gem... is the toughest on the body - it certainly is during the IV. No one has suggested radiation. I won't have any scans (MRIs) until December.
Please keep in touch.
Cheryl

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