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Gall Bladder Cancer, Stage 4

liebe1
Posts: 6
Joined: Oct 2010

Hi

My name is Viola I am a vibrant and energetic 47 year old I work in Healthcare and am the mother of two beautiful teenagers. I have recently been diagnosed with Stage 4 Cancer of the Gallbladder and Ducts, also known as "Unresectable Gallbladder Cancer." I don't want Cancer to be an end for me.....I want it to be the Beginning.....It starts with a Battle which I win and I go on to share the fruits of victory with others who must fight the same fight----a battle they too can fight and win. My Mantra is Viva La Viola......If anyone can help this come to fruition or steer me in the direction of someone that can, I will be forever Greatful. In the meantime, I start Chemo on Wednesday....I will be receiving specifically Cisplatin and Gemcitabine. I live daily with pain from the pressure of tumors pushing against my organs. My cancer has metastasized to my liver, ovaries, uterus, lungs and I have a mass in my right pelvis.....Cancer has invaded my body and it is not welcome! I want to seize it and banish it....can anyone help? There is a proliferation of grim news I hear and continue to hear...I would cherish and love to hear from anyone that speaks of prosperity and wellness.......I have been given 12 months to live but my youngest graduates in 18 months and I celebrate my 50th in 2 years and 4 months......Cancer is a bully that I refuse to bow before.....can anyone help?

Sincerely
Yours in Health and Hope
Viola

baughlm
Posts: 5
Joined: Nov 2010

Viola,
I was diagnosed with Stage 4 cancer with a baseball size tumor on my liver January 27, 2009. I'm 46 years old and will celebrate my 47th in Dec. At that time we didn't now it was gallbladder cancer, the doctors thought it spreaded from the pancreas. I went to Mayo clinc in January and they put a stent in my bio duct from the liver to gallbladder to make my liver funtion. I started taking chemo Cisplatin and Gemcitabine on Jan 25, 2010 and by May 24th the chemo worked and the tumor was shrunk in half. At this point my cancer doctor knew it was time for surgery. I found a wonderful doctor at North Western in Chicago that specialize in liver cancer. On June 3rd I met this doctor in Chicago and on July 7th I went into surgery not knowing what the outcome would be. After surgery I found out that it was indeed Gallbladder cancer that had spreaded. But the best outcome of surgery was they think they got all the cancer. After surgery and rest I started chemo again to make sure no cancer cells are there. I have 3 left and should be finished by the end of Nov. This has been the hardest year of my life and I've never given up hope. I've set my mind that I will die of old age and not when the cancer decides to take me.

Keep up the fight...

baughlm
Posts: 5
Joined: Nov 2010

Sorry, it was Dec 27th, 2009 that I was told of my cancer

haugy
Posts: 9
Joined: Sep 2010

hi Bauughlm,
i read in youre post, that you started out at the mayo clinic and ended up having surgery at another institution,if i might ask why that is/was?
thank you
Haugy

baughlm
Posts: 5
Joined: Nov 2010

Hello Haugy,
I changed to Northwestern in Chicago when the doctors and Mayo wouldn't do surgery on me. I was told to go back on Chemo, this wasn't an option to me. I continued to search and with my cancer doctor in Michigans help he got me to Chicago.

Dulce
Posts: 5
Joined: Nov 2010

I complete agree, please never give up.

Baughlm, Can you please give me the name of the Dr at Northwestern?

baughlm
Posts: 5
Joined: Nov 2010

My Doctor was Dr. David Mahvi. He is my angel that saved my life.

Dulce
Posts: 5
Joined: Nov 2010

Thank you, I will try to reach him. My mother was given 2 years a month ago, and they refused to operate on her out of fear it would spread. Now they are saying it spread and that she has less than a month left. We need to find other Dr's to help.

liebe1
Posts: 6
Joined: Oct 2010

Baughlm,

Thank you for sharing your story. It's so good to hear some success stories like yourself. My Doctor told me I have 11 month to live with chemo which wasn't news that I was expecting. From the first diagnoses it seemed to take for ever to get to the chemo. I finally had my first chemo yesterday and don't have any adverse side affects as of yet. I am maintaining good health by walking everyday and eating healthy by little bites at a time. Every evening I finish off by going to the steam room as cancer hates heat and does shrink according to the information on the internet. Sharing your story with others helps relieve alot of anxiety. I like your thinking of setting your own mind for things to happen not have the cancer decide for you. You seem like a fighter yourself. I will do the best I can and continue to be strong to fight this...

baughlm
Posts: 5
Joined: Nov 2010

leibe1,
I'm glad to hear your first Chemo went good. Keep up the exercise and eating healthy, this helps alot. Stay strong and remember to fight.

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

Hi: Hang in there, eat healthily, and do the chemo. I was diagnosed with stage IV gallbladder in May 2010. The gallbladder, its tumour, and where it had grown into the liver were removed thankfully. Took awhile to get the chemo going because the incision wouldn't heal. Started chemo in September but had to stop after one cycle because of colon bleeding, but started chemo again yesterday. However, the long wait to get going helped me to get healthier by eating properly. I am 67 and don't plan on giving up. You might want to check out the other gallbladder sites on the discussions under rare and other cancers as there is a lot more information there. Especially read Lily's responses - she has gone through a lot and is now a 5 year survivor.
Cheryl

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

Hello Baughlm,

Welcome to our group. We are glad to have you join us in disscussions regarding this terrible disease.

Hi Viola, Murray, Dulce, Cheryl, & Jan.
Thanks for posting in my absence.

Happy Birthday month to you. You are the same age that I was when I was diagnosed. I just celebrated my 51st birthday when the doctors originally stated that I probably wouldn't see my 47th. They were wrong! You received the same chemo cocktail that I did, and it seems that a lot of patients are receiving it. Hopefully at this time you have completed your chemo and are ready to get back to your life.

With this disease you always have to have Hope and Faith to get thru what you need to do. You are very strong and the battle that you have fought in the last year was a tough one. Now you get to switch gears and re-define who you are.

Thanks for letting us get to know you and sharing your story. It can help you as well as others to talk about your journey.

My email address is LGregg6293@Aol.Com if you want to chat.

Take Care
Lily

liebe1
Posts: 6
Joined: Oct 2010

It's been a while since I've been on this site (although I have corresponded with a few privately). I want to thank those who share and provide support. Chemo last Wednesday left me a little weaker than normal - back on my feet (more or less) today. Rest and listening to my body are the key. Today I feel like we need a group hug so I'm sending one out there.

Bless all who are sharing and caring - we can get though this!!!

Viola

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

Hi Viola,

So glad that you have completed another chemo day! Also glad you are back on your feet. Some days are better than others and remember another one down is one less to go.
Your body can tell you a lot if you just listen to it. If you day isn't going well just rest and relax because whatever you needed to do today can always wait until tomorrow. Give yourself enough time to re-group from your treatment.

I agree group hugs are not only well needed but well deserved.

It is a battle that collectively we all need to be strong.

Take Care
Lily

liebe1
Posts: 6
Joined: Oct 2010

Hi Lily,

Finished my fourth today. I am much more tired than ever before - it's like there is a cumulative effect. I am thankful for my support group as today I was not very steady on my feet and needed to rest in the worst way - it is pretty much a team effort. I am finding that a good foot and leg rub after chemo with a nice lotion helps a lot both phyically and mentally. The touch of a tender and loving person does wonders at a time like this. I'm a little exhausted right now so I'll add more later.

Hugs,

Viola

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

Hi Viola,

Good for you, another one is down. It is true that the farther and farther you get into the treatments the more tired you can become. You are a very lucky women to have such a strong support group helping you on this journey. It is hard to rely on others but you will need their support to help you. I too found that massage can really help, especially if you are very achy. My husband gave the best back rubs. Tomorrow try and do a little exercise as that too helps. Even if you just go for a short walk down the block with someone of course, don't try and do it by yourself. It is a proven fact that touch thearpy works and it is even better if you are being touched by a loved one.

Take Care and Rest
Lily

liebe1
Posts: 6
Joined: Oct 2010

Hi Lily,

Up and around a bit more today - your words of encouragement help. One question though - something which frightens me a bit - even with the chemo it appears as if my tumours are getting larger. Did your tumours get larger before they started to shrink? The tumours in my abdominal region are protruding quite significantly and are the source of a great deal of agony these days. My Oncologist here is not the most optomistic person (which bothers me) again I was reminded that this would ultimately end my life - my support group however is much more positive. Exercise has been a bit of a chore but those closest to me keep me up and around as much as possible. I have experienced little or no hair loss todate which makes me wonder if the chemo is working. I am looking forward to the week off so I can feel less nausiated. Had a CT scan today as the bloodwork indicated that there may be a liver issue - I guess I'll find that out in a few days - always seem to be anxiously waiting for something.

Thanks again,

Viola

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

Hi Viola,

Glad to hear that you are doing better. Just take it one day at a time. Everything about this disease can frighten you. I really can't say whether or not my tumors increased in size in the beginning. My oncologist in the beginning was very noncommitial. We had to get farther into treatments before he said much. He is the stand back and watch kind of a doctor. The pain from these tumors can be quite exhausting. I have to say that I was taking 8-10 pain meds daily. It was very foggy for me and I wouldn't recommend that much pain medication. It did let me rest a lot. That may have been to my advantage at that time. Oncologist's and optmism don't usually go together, therefore within ourselves we have to stay positive. Some doctor's like to paint the bleak picture even though we want to have no part in it. Lot's of things can ultimately end your life and what gives a doctor the ultimate wisdom to know how, when and why it might happen? You have keep moving as your body can very easily want to do nothing. It helps your mind also to exercise. The hair loss that I experienced didn't happen until I was in treatment for about 3 months. Everyone is different how their bodies process the chemo. It is good to have that week break but just when you start to feel like your old self it is time to do it all over again. Enjoy it while you can. There is almost always a liver issue as they are so close together. Remember patience and perserverance is what this disease is all about.

Take Care
Lily

liebe1
Posts: 6
Joined: Oct 2010

Hi Lily,

I'm currently on my week off - in some ways I'm looking forward to the return to some semblance of normal but at the same time my fear is that the cancer gets a one week jump on me - a strange catch 22. I'm keeping as active as possible but I am more fatigued than before and sure do miss eating regular meals. Well, that's all for now - I'll just keep on
this strange journey until I rid myself of all these stones in my shoes.

Hugs,

Viola

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

Hi Viola,

Yeah! We all have lived for that one week off, no doctor visits, no IV's or ports for chemo, no shots and the list goes on! Savor the week, try to enjoy yourself, laugh a little and get ready for next week. Just when you begin to feel pretty good it is time to go back. The cancer is in a dazed and confused mode right now, so don't worry about it getting a jump on you, your body needs to rest in between so that it can fight that much harder with the next cycle. Those cancer cells are sneaky, most of us got caught not realizing the havoc that they were doing in our bodies before our diagnosis. Fatigue is one of the most commom complaints that everyone seems to have. But we have all spent our whole lives running at the fastest pace that we could that now we just have to take it a little slower.

What is it about regular meals that you are missing? Think of it as a new weight loss program. You will just have to try different things and sometimes you will find that things you didn't like before you will and everyone says that it you have a favorite food don't eat it as the chemo will change the taste of it and you will no longer like it. Make your small meals into an event and festive.

It is a strange journey but when you are walking with friends who also have stones in their shoes you can help each other.

Take Care
Lily

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