Gallbladder Cancer - 2013 (Any Stage)

zebramae said:

hello lily!!! hello

hello lily!!! hello everybody. my husband was diagnosed with bgc stage 4 last october 26,2012. we were not prepared for it and we were in shocked most especially the way it was delivered to us. i was told that doctors have to be cold or not compassionate at all when giving the devastating news but it was just awful. that day, i died. it is very very hard and sometimes i don't know what to do. right now he had already treatments, the first two was with columbia presbyterian and now he is at sloan. it is just so hard that this cancer is so rare that i can't find anybody who is going thru the same so at least i can or he can talk to them for support or advice. he lost a lot of weight and not eating  very well.from what i see he is depressed and not really fighting this terrible disease. is there anyway that you can get in touch with me so we can talk??? we need help please... my email is garutay43@yahoo.com. thanks a lot..

HI!

Welcome to our board, nice to meet you.  I think that this rare cancer comes out of left field and no one is ever prepared for it.  The delivery by doctor's can sometimes be so cruel.  Many of us have been told when we are alone; going naively into an appointment expecting a small situation that can be handled fairly easy that can turn into the worst day of our lives.  You are on the east coast and many GBC patients have gotten their treatment at Sloan.  At least you are dealing with a facility that has some experience with GBC.  It is hard to find others; many of us had the same issue until we found this board.  You aren't alone just talk to us and ask anything you want and someone will be bound to respond to you.  Losing weight is a given and eating can be difficult.  Small meals have worked better for most of us.  He is still in the initial stages of anger and denial.  That will pass and then he can fight.  You have to fight this disease with your whole heart and not let the beast win.  We can do email if you want (LGregg6293@Aol.Com) or just write your questions on this board. 

Take Care

Lily

westie66 said:

Gallbladder Cancer 2013

Hi all:  Like Lily, and others I know, I am still here.  Diagnosed in October 2009 with possible gallbladder cancer.  Had surgery April 2010 to remove the gallbladder, its tumour, and part of the liver.  Surgeon observed several tumours on the peritoneum spread from the gallbladder. Had to wait 5 months to start chemo as the surgical incision wouldn't heal.  Had 12 treatments of the standard treatment for gallbladder cancer - cisplatin and gemcitibine.  That didn't do much.  A CT noted a possible tumour on my liver.  Had 14 treatments of folfirinox (oxaliplatin + irenotecan + 5FU - standard treatment for colon cancer and pancreatic cancer) and that treatment did work but had awful side effects.  Ended up in the hospital and care facility for 5 months following 2 surgeries for a perforated bowel (that I suspect was caused by the chemo and by the constant diarrhea resulting from it).  Had high dose radiation in November which seemed to kill the tumour on the liver (but won't know until the next CT in 2 months).  No treatment for the peritoneum on the horizon as I now have a colostomy from the perforated bowel.  I was turned down for the peritoneum stripping and HIPEC surgery.  That's my story!  I should note that I'm 69 and was given 2-3 months to live in April 2010.  Still here!

Cheryl

Hi Cheryl,

Thanks for sharing your courageous story.  You are one tough cookie!  Our new mantra should be "STILL HERE!"

Take Care

Lily

Gram517 said:

surgical consult

Well, I have my surgical consult scheduled for this afternoon. I have completed 1.5 rounds of the usual (from what I can tell) cisplatin+gemzar chemo treatments and now will see if they (the great medical minds) think that surgery is a viable option...

Still have not had the nerve to actually come out and ask what my stage is, assume is 2/3 due to origination in bile ducts with main and auxilliary tumors in liver but really is a weird thing, wanting and not wanting to know...oh well.

Getting used to the nausea, constipation and general malaise, not liking it a bit.....I also do not like sitting around home and not going to work on the days I feel like it but do realize that the heightened flu conditions and the fact that I am an Insurance Agent in a call center would really not be a good idea at all...does not mean I have to like it, just that I have to do it.

Most of these discussion boards are really good tools to cope and I appreciate everyone's input and stories...keeps the hope level up against the purely medical ones that seem to ooze doom and gloom from each screen. It is great to see and read stories of fighters, survivors and victorious people !!!!!

I intend to be a Cancer Warrior as well....arm myself daily with The Word, the thought and the knowledge that I will survive. Oh, did I mention that I am hard headed and tend to bull (yep, a Taurus) my way to what I want....lol....

Enjoy your day and cherish your moments !!

Mary

Hi Mary,

Good Luck this afternoon!  Surgery can be a viable option if the chemo cocktail has been doing what it should.  Let us know how it goes,

That old saying that ignorance is bliss and information is power has some pros and cons.  Sometimes we really don't want to know the worst case scenario; as if we do then we might just give up.  Information is power is great as long as the information that we are getting is current.  If not that information can almost be as bad as the ignorance.  You are the only one who can make that determination. 

It is never fun to be ill.  And chemo treatment for some is easier than others.  None of the nausea medications worked for me (generic to very expensive).  I had to find out what foods I could use that would help me.  I went back to what I used for nausea when I was pregnant.  Shortbread cookies and Ginger Ale did the trick. 

It is very hard to sit still when you have worked all of your life.  But I say you need to focus on getting better, and if you are able not to work than I say good for you.  I was a work alcoholic all of my life and for me it was very frustrating just sitting around.  But I do believe that if I hadn't focused on myself for once, then I wouldn't have gotten better. 

You never know what each day will bring, and each day is a blessing.  You have to be your own advocate if you can with regards this disease.  I think many of us approach things with the attitude of I will survive this; it will not get the better of me. I don't like to lose (Leo Trait)...Lol...

Take Care

Lily

lirok said:

Gallbladder Cancer 2013

How is everyone ? Still kicking it. I had a biliary catheter with an external bag installed in August due to blocked stents. Cancer was under control at the time but billirubin count was up to 9 and I was severely jaundiced. I have had the catheter replced 17 yes 17 times since then due to continual blockages. Billirubin down to 2 as of two weeks ago so I am hopeful they remove the catheter shortly. In Dec I noticed a bump on my chest that was growing, I had pain both in front and in back. After CT amd MRI scans doc found that one of my lymph nodes was growing and it was in the hot area. I was placed back on chemo (after being off since May 2012) and am on Folfiri. Thats irenotecan and the Fluo, I wear the capsule for two days. Side affects have been rough and have developed a troublesome hemmorhoid. After 2 tretments the bump has decreased by more than 50%. I have 6 treatments schweduled along with some follow up radiation. This is not a new growth. This node had cells that were hot but prior treatments only shrunk them. I see my oncologist at Sloane Kettering in 2 weeks and she'll be thrilled when she sees it. I feel okay, my spirits are higher than ever and again this year like last year, Cardinal Dolan has invited us to Ash Wed Mass on Feb 13 where my son will be his altar server again. I talk to the Cardinal regularly and he has kinda taken my family under his wing. 

 

Well thats me for now. We continue to battle as we will for the rest of our lives but we will win. Don't EVER give up hope. Stay strong in faith. I wish everyone here nothing but good health.  

 

Rocky

sweeneyrocky@gmail.com

Hi Rocky,

Thanks for posting an update for us again this year.  Those dang blocked stents, seems to be a necessary evil for many of us.  I think you hold the record highest number of replacements in a year.  As we go down this road we seem to be more aware of our bodies and spring into action when we know something is wrong.  Even though we might not like what we have to do we can take comfort in knowing that we are doing everything within our power to continue to beat this monster.  It’s true that the side effects for the Folfiri can be tough, my sister was on it for her colon cancer diagnosis.  But it seems to be working since you have had that much shrinkage.  It is very important to stay positive and continue to fight.  You are a lucky man to have had a Cardinal that is helping your family on this journey.  I'm sure he is sending up extra prayers for you and your family.

I agree.  Hope & Faith will carry you through.

Take Care

Lily

hillaryjoRN said:

Great to hear from everyone!

Great to hear from everyone! march will mark the one year anniv. Since my mothers diagnosis of stage two gallbladder adenocarcinoma. She finished treatment in December and is feeling great. Decembers ct scan was normal! We thank God everyday! And know he will continue to bless my wonderful mother with great health! God bless! Hillary..

We also saw a neutropathic doc yesterday, she is changing her diet and adding some supplements that are excellent cancer fighter! Has anyone done this?!  If so. Which vitamins?

.

Hi Hillary,

Tell mom for me I said congrats!  She did really well!  I'm so glad to hear that she is feeling great.  Blessings from above.  My diet changed quite a bit.  I no longer have much caffeine or sugar.  Lots of fruits and vegetables along with lean proteins.  I still eat smaller meals through the day and hardly ever have a big meal.  That is what I found worked for me.  My oncologist suggested I take a good multi-vitamin.  I still have to take prescription potassium and L-Glutamine (neuropathy).  But for the most part I'm pretty healthy.  I just work within the restrictions that the chemo inflicted upon me. 

Thanks for sharing with us about your mom

Take Care

Lily

lourdes726 said:

Hello and happy New Year!

Hello,

It is nice to see so many of you post your stories. I visit the forums often, but don't often post. I thought I would share a little of my cancer journey, so that those searching the boards looking for support can find answers and hope. One of the hardest things I have found with this cancer is that there are so few people that can relate or have shared their stories of survival. I was diagnosed in April of 2010 after a routine gallbladder surgery due to gallstones. Never in a million years did I think the follow- up pathology would discover cancer. I was 47 at the time and very healthy and enjoying life. After my diagnosis I had a liver resection at UCLA. My surgeon and UCLA were very top notch and really looked after my care while I was there. I was lucky to not have any spread and was given a diagnosis of T2M0N0 and was told my tumor was small, close to 1cm. I chose to have follow up chemo and radiation because of the high risk of recurrance and because of the low survival rates of this cancer. I had 6 weeks of 5fu though a pump and 5 days a week of radiation. I was given a month off after radiation to recover and I started xeloda( which I did not tolerate well at all). I started gemzar for 4 more months and did well with this chemo. treatment. I had an extremely rare reaction to xeloda and was put in the hospital for type 1 diabetes and now I am on insulin. I have scans every 6 months and I have been cancer free. The stress before each scan is overwhelming. I am due for a scan next month and I am starting to really stress out. I am going on 3 years cancer free and I am grateful each new day. Cancer has really changed my life, I am not sure that those that have not experienced this type of rare disease can understand how scarey, lonely, and life changing this illness can be. My life is pretty much back to normal now. I work, travel, and enjoy my family, but I do suffer from fatigue. I do not have the energy or stamina to do the things I used to do. I wonder if others who have had chemo. or radiaton still have fatigue a few years later. I hope that 2013 is a great year for all of us and that more gallbladder survivors will share there stories on this board and inspire us all. I pray that this cancer gets better research and studies in order to find better treatments for those affected.

Lourdes

Hi Lourdes,

Thanks for sharing your story with others.  Let us know how your scan comes out.  Even after 7 years I still have scanxiety.  I don't think that it will ever go away.  Three years is quite an accomplishment.  Good for you!  Cancer is very scary and since this is such a rare cancer, many people aren't even aware of it.  I know that I had no idea when I was diagnosed that this type of cancer even existed.  You are an inspiration to have worked through your illness and are continuing to work.  But you are a teacher and are investing in our children’s future.  I know that I appreciate your dedication.  I think that fatigue stays with you forever.  But you learn how to cope with that small annoyance and carry on.  This is the new you and you just deal with it.  Are you happy about it, most would say no but to still be here, making memories and enjoying the day, is a blessing.  Daily prayers are sent up for all of us.

Take Care

Lily

lirok said:

Gallbladder Cancer 2013

Hello all. Quick question and hopefully some help from some of my friends here. I am dealing with a nasty internal hemorrhoid. It is beyond uncomfortable. I have tried alot of the home remedies, even the wacky ones (garlic, Vicks). Does anyone have any experience with this. Here's wishing you all continued healing and a path to total remission. 

 

Rocky Sweeney

sweeneyrocky@gmail.com

Hi Rocky,

I think they have plagued all of us.  I would recommend Preparation H, warm Sitz baths a couple of times a day for 15 minutes for a couple of days, increase your water intake and increase your fiber rich diet.  All of these things in combination will work.  It might take some times but no sense being uncomfortable if you can help it.  Hope this works for you.  If you have tried this and it hasn’t worked for you talk to your oncologist.  They might be able to help. 

Take Care

Lily