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Gallbladder Cancer - 2013 (Any Stage)

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

Hello Everyone!  Happy New Year! 

2013 will be a year of many blessings for all of us. 

As usual (4th year in a row) here is a new thread for our rare GBC diagnosis.  I’m thankful to say I’m still here (7 years- no recurrence) with all of you, even if last year I wasn’t on top of all the discussions. But there are many others willing to pick up my slack.  Sometimes you have to take a break from things as you can lose your perspective. 

I think mine finally came back.  Even if I wasn’t posting that didn’t mean I wasn’t reading everything.  Let’s keep all the discussions flowing, as we all need each other.  Sometimes I think the advice we get from others is better than some of the doctor’s advice.   

It’s a new year and just like last year maybe we can all introduce ourselves to anyone new coming to this discussion thread.

 

Lily – 53

Diagnosed 2005 – 46 Stage IV

Chemo 2005-2007

Surgery 2006

No recurrence

Everyday is a blessing!

 

Take Care

Lily

Jean160
Posts: 26
Joined: Sep 2011

Happy New Year to everyone!  Lilly, thank you for starting a 2013 thread.  I know everyone likes hearing from you as you have such a great story:  and 7 years out is an awesome hope for so many!  I also read Eddie Littlefield Sundby’s story which is also amazing (in one of the other threads) for gallbladder cancer.  Of course there are many other great stories in these posts and I love the other words of encouragement and hope from everyone.

 

It was almost 2 years ago now since my first gallbladder surgery/cholecystectomy.  A T2 adenocarcinoma found in my gallbladder that seemed to originate from a polyp with some isolated tumor cells in the cystic lymph node.  2011- not a fun year.  A liver resection including 10 more lymph nodes (thankfully negative), and chemotherapy after  (12 treatments spread over 4 months).  I have had 3 followup scans (CT and MRI).  So far, so good- no recurance.  I am now due for another scan (I postponed it a little because I wanted to enjoy the holidays).  So now it is time for “scanxiety”, as I need to schedule that next one.  I will get blood drawn next week.....  yicks.....

 

I want to wish everyone well;  keep fighting , keep strong, and remember statistics don’t tell the whole story.  You will all be in my thoughts and prayers.   Jean

 

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

Hi Jean!

Good for you, two years and going strong!  Congrats!  No matter how long it has been, scanxiety is now a part of all of our lives.  I don't think it ever goes away or gets any easier.  Lets us know how it goes.

Thanks for your thoughts and prayers for everyone. 

Take Care

Lily

zebramae
Posts: 1
Joined: Dec 2012

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..

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

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's picture
westie66
Posts: 642
Joined: Jun 2010

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

maudsie
Posts: 54
Joined: May 2010

Hello Lily and all you others, so good to be with you.  This is Maudsie, and I'm still here too.  And doing great. I was diagnosied in  summer of 2008, after routine GB removal -- and then the big surgery we are all familiar with: I had some spread to liver (local invasion) but negative margins, (so all affected tissue was hopefully cut out), and no lymph involvement found.  Then radiation for a while, along with Zoloda (FU-5 pill), then gemcitibine (Gemzar) for some months.  All the while getting the usual scans and blood tests which were all fine.  At this was at Duke Medical Center which is near my home.

Docs says no more scans are necessary at this point.  YAY!!!!!  I do have blood tests periodically, next scheduled in 2 weeks.  I'm not worried.  WOW I have come a long way -- as have many others.  I am a T3 Stage IIb survivor, age 66 now.

In the past I have been pretty active on some of these boards, now less so... I check back periodically and catch up with things and I probably will do this for a long time to come.  This is an experience that changes you and never leaves you.  And you all know what I am talking about, so you are all important to me.  God bless --

Maudsie

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

Hi Maudsie,

Happy New Year!  I'm so glad to hear that it is going so well for you.  Kudos!  YAY on the no more scans for you!  No more scanxiety!!!  I haven't had a scan in a year and I'm hoping that unless there is an issue I too won't have to have any more of them.  Yes, you have come a long way along, but you worked very hard getting to where you are now. 

We have lost some dear friends over the years to this terrible disease but we are always meeting new friends that need us to try and help them on their journeys.  We all know how difficult this journey can become.  One of my resolutions is to stay more active on these boards as everyone needs someone to talk to and it is good therapy for those of us who have been dealing with this for awhile. 

Take Care

Lily

 

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

Hi Cheryl,

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

Take Care

Lily

Gram517
Posts: 1
Joined: Dec 2012

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

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

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's picture
lirok
Posts: 49
Joined: Jun 2011

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

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

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

 

 

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

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

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

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

 

Jean160
Posts: 26
Joined: Sep 2011

Hi Rocky......  Sorry to hear about the hemorrhoid.  Not Fun!  One thing that I think is underutilized as an antiinflammatory is ice.  Have your tried that?  An ice pack for 20 minutes 3 times a day can decrease the annoying inflammation.  The preparation H that has a little cortisone in it (the red tube).  Maybe you have already tried those?  Hopefully your oncologist has some suggestions as well.  Or even your primary care doc. Take care.  I hope that settles done soon.  Jean

haugy
Posts: 9
Joined: Sep 2010

 Hello everyone, I just thought i would drop in to say hi and that i'm still lounging around . I was diagnosed and had surgery june 2010  staged  t3n1m0   followed by 6 cycles gemcitabine/cisplatin chemotherapy   ,and now we are  cautiously optimistic

Murray

lourdes726's picture
lourdes726
Posts: 12
Joined: Apr 2010

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

hillaryjoRN
Posts: 32
Joined: Apr 2012

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?

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

.

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

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

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

 

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

Hi Murray,

Glad to see that you are doing so well.  I think all doctors are cautiously optimistic because so many of us are surviving when at one time not many did.  We are showing them all!  Eventually they have to recognize the successes. 

Take Care

Lily

 

Jean160
Posts: 26
Joined: Sep 2011

Whoo hoo!  MRI scan came back good.  My oncologist said it was normal.   All my blood work was fine;  no tumor markers or other abnormalities.  Liver enzymes normal, no anemia, etc.   I will also have the tumor board at the University review it as well.  I know I have all those surgical clips in me and apparently it does cause some refractory that you cannot see every nook and cranny.  Last time I had a 4 way protocol CT scan of the abdomin and that was good also (June 2012).  Unfortunately I react to the dye for the CT and got some hives so I worry about getting those all the time.  For now...... I am very thankful!  I feel well.  I will still worry every time its scan time;  but I tell myself to enjoy the good news and my husband and I will plan our next vacation!  Smile

 

Lourdes.....  I know your scan time is coming up and I am wishing you well.   I am hopeful that it will be normal!!  We will change those old statistics!

Jean

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

That's wonderful Jean! 2013 will be a great year for you! My CT scan is coming up on Feb 8.  How I hate those scans - definite scanxiety there.  In addition to the preparation for the scan (drinking all that horrible milky stuff which gives me raging diarrhea which is not good when you have a colostomy! and the IV when you have chemo veins - i.e. none!).

Cheryl

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

Hi Jean,

Happy Dance for you!  What great news!  Those four little words that we all live for (No signs of Metastasis disease). 

I was told that if my hives became a big issue for me that I could take a Benedryl before the scan.  Check with your oncologist and see if you could do that. 

Of course you will always have scanxiety before a scan, that is something that never goes away for any of us. 

Yes, everyday becomes a blessing and making plans for a fun vacation and making memories with our loved ones becomes so very important. 

Take Care

Lily

 

RickGBC's picture
RickGBC
Posts: 2
Joined: Feb 2013

I had my gallbladder removed 9-12-2012 in a laparoscopic cholecystectomy.  I recieved the cancer diagnosis 9-25-2012 at my after-surgery follow up appointment.  Incidental discovery of cancer.  (At first I thought my doctor must be lying to me, I found it hard to believe).  After a CT scan I was refered to UCLA for liver re-section surgery and lymphadenectomy.  That surgery was 11-9-2012.  I was staged T2N0M0.  Post-surgery UCLA recomended surveillance, but no further treatment.  I got some second opinions from oncologists.  I had it pointed out to me by doctors many times during this period, that "there is limited clinical trial data to support a standard regimine" (in other words, I found it very hard to get a straight answer out of anyone).  Basically what I got from them was- "it's your call".  After two months of recovery from surgery, I started adjuvant treatment, gemcitabine chemotherapy.  I decided to do adjuvant treatment to prevent recurrance, based on the NCCN Guidelines.  I'm one month into that treatment.

I'm 51 years old.  I'm AKA RocknIraqVet on the other message board. I am an Iraq Veteran (OIF 2004), and a guitar player. 

Thanks everyone for being here and reaching out.  Especially Milly, Murray, and Lourdes, who I have corresponded with.  Talking with y'all has been very encouraging to me.  -Rick

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

Hi Rick,

Nice to meet you.  I think I missed meeting you on the last year’s board as I wasn't posting much around that time.  But my good friends Milly, Murray and Lourdes were there for you.  I'm thankful for that.  

I think that you made a great call to continue your treatment to catch any of those stray critters that might be roaming around.  We all have to be our own advocates, as we are all surviving against the odds.  Doctors sometimes don't know what to say to us because we are termed Outliers. 

Who did your surgery at UCLA?  My radical Cholecystectomy was done by Howard Reber at UCLA.  There have been quite a few of us that have ended up there. 

Thanks for sharing your story.  Let us know how your continuing treatment is progressing.

Take Care

Lily

 

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Hello all. Just wanted to share a nice story from me and my family. We were again invited to St. Patrick's Cathedral in NY to have our son Chris serve as altar server for Cardinal Dolan and the Ash Wednesday Mass. We were surprised when Cardinal Dolan had us sit up on the altar with him during the Mass. We received our ashes and communion from him. Afterwards we spent some time with him talking about my cancer and how we were coping. Since last year the Cardinal has called me regularly at home to keep tabs on my condition. The man is amazing. We even spoke about his upcoming trip to Rome to select our new Pope. When I asked him if he was confident he just smiled at me and tilted his head. After the church I headed over a few blocks to Sloan Kettering for my chemo treatment. It is my 5th and it is really taking a toll on me. I am extremely, extremely fatigued. I have a scan scheduled for next week to see if we will continue treatment. The lump in my chest has virtually disappeared so we are hopeful. 

I have included the link below to the story in the NY Post. Hope everyone is doing well and fighting hard. 

 

Rocky

http://www.nypost.com/p/news/local/fatherly_blessing_25jsA17RW6poFg9SipkzlN

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

Hi Rocky,

Thanks so much for sharing with us this special moment for your whole family.  I know that it had to be a very proud moment for all of you.  This year having a front row seat had to have been the best!  Being able to share with us what is going on in your life is a great gift that you are giving us. 

Good news on the lump shrinking!  Means that the chemo is doing the job, but it takes a toll as we all know.  I think that fatigue is something that never entirely goes away.  I know it hasn't for me.  You look pretty good in the picture.  Keep your Hope and Faith, it will carry you through. 

Take Care

Lily

RickGBC's picture
RickGBC
Posts: 2
Joined: Feb 2013

Hi Lily,  Nice to meet you.  Last year I hadn't posted anything here because I didn't find this message board till this year.  My re-section was done by Dr Hines.  I'm in week 11 of treatment and it's going ok.  Thanks!

Monarch64
Posts: 22
Joined: Apr 2012

Hi gang,

SO happy to read everyone's updates. 

Thought I'd give you an update on my mom (Delores).  Recap - she was diagnosed in May 2011 after a "routine" gallbladder removal.  Her cancer was originally staged as T2N0M0 with no spread beyond the gallbladder.  She had a liver resection, removal of all of the abdominal and pericardiac lymph nodes they could find.  They also removed all of the areas around every trocar site in an effort to catch any random cells that my have been transferred by the laproscopic instruments.  Because her gallbladder was removed through her belly button, a larger "cookie cutter-sized" area was removed there and her belly button was reconstructed.  She wore the 5FU pump for 6 weeks of continuous infusion chemo during her 6 weeks of radiation.

Mom has had 3 post-treatment scans come back clean with "no metastatic disease found".  Her next scan is scheduled for the first week of April.  The doctors are thrilled...and so are we! (Two of the docs are now referring to her stage as T1BN0M0.) 

She has had 2 cancer/chemo related issues - a blood clot in her leg and a bad case of shingles (which they say aren't uncommon following chemo and radiation).  Both of those issues are fully resolved and other than fatigue, Mom is doing GREAT!

A huge THANK YOU to everyone on this board.  Your info, spirit, support and love have made a world of difference to my family.

To the new folks, I'm glad you've found us.  While I can't give a survivor's perspective/insight, I can certainly give a caregiver's perspective/insight.  So if there's anything I can do to help you in your journey, please let me know.

Again, so very, very happy to read everyone's updates.  Continued love and prayers from my family to yours!

Charmi

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

Hi Charmi

Thanks so much for the update.  It is always great to hear that someone is doing so well.  It sounds like her and Maudsie have much in common the way that her surgeries were handled.  Those cancer cells can be so sneaky that you have to do everything in your power to get rid of them.  

Those are the best words to hear after a scan.  It means that she is winning!  We are all proving to the doctor's that they can no longer go by just the statistics because they don't apply to us! 

There are so many people that come to this forum that aren't patients but have a loved one who is so weak that they can't be their own advocate.  You have be the greatest advocate your mom could have had.  Without you in her corner fighting with her every step of the way the journey could have been even more difficult.  Thank You for being the best daughter a mother could have wished for. 

Thanks for sharing!

Take Care

Lily

v4l3nt1n4
Posts: 1
Joined: Feb 2013

Dear all, thanks for raising my hopes after they had been shattered.

 

My  boyfriend's lovely dad, whom I love to bits,  has been diagnosed with the above. After the initial plans for a Whipple procedure fell through, his cancer has been deemed inoperable and he has been told that any cure at this point will be palliative.He is 71, still rather fit though.

His liver, pancreas, part of the bowel, bile duct and lymph nodes are involved. A resection of the liver has been considered as well as an operation to grow a little more liver to then perform a Whipple, but all to no avail.

He is still to see an oncologist, so I have no idea about his chemo schedule or which drugs they will use. His surgeon is one of two surgeons that is able to supervise/perform the Whipple procedure in Australia, so I don't think a second opinion would be possible unfortunately. I have a few questions:

Has anyone had any experience, personal or not of dendritic cell therapy for this type of cancer at this stage?

Is there anyone in Australia that can reccommend an oncologist or a hospital that have treated the cancer aggressively?

Thanks a lot to all of you for sharing your stories again.

V

 

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Hello all. Had my Dr.'s visit yesterday to review my latest CT scan from last week. I got the best reviews from any visit I have ever had. After discovering some growth in several cells including a lump discovered in my chest, all areas have shown a dramatic decrease in size. Even hot cells that have never responded to past chemo have shown improvement. We are going to continue with the irrotecanan (Folfiri) to continue this pattern hopefully. The Dr. was especially surprised with the how fast this happened. I had my 5th treatment yesterday so this has all happened over the past 2 months. I will do a total of 10 treatments this cycle and then we will rescan.

I could not be happier. A positive attitude, the power of prayer and my family and friends have all played a major role in my battle. I hope everyone on this board gets similar results and continues to fight the fight and reverse the history of this particular cancer. I thank everyone here as well for your support. 

 

Rocky

 

Monarch64
Posts: 22
Joined: Apr 2012

I'm so glad to read you've gotten good news!  This made my whole week!

Charmi

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

YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

HAPPY HAPPY DANCE FOR YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Take Care

Lily

heightswoman
Posts: 2
Joined: Feb 2013

The question I have is: why is it inoperable??? Sometimes there is reluctance to operate simply because the cancer has metastisized. Without knowing why the doctors say it is inoperable it is difficult to evaluate options.

Monarch64
Posts: 22
Joined: Apr 2012

Hi V,

I just wanted to wish you and your family the best in this fight. 

Have you found out any more info?  Did he get to see the oncologist?

If you haven't read Lily's full story, please do!  It's on all of GBC threads including this one.  I can't see her original post to this thread right now but I know the 2012 DBC thread and the one before that had very detailed info.  She was also Stage 4/inoperable.  Not only did she eventually have surgery, she is still celebrating almost 7 years post-diagnosis now!  Seek out her posts and they may offer you some ideas about your boyfriend's dad's possible options.

Keep us posted. And again, best to all!

Charmi

Comsalee's picture
Comsalee
Posts: 5
Joined: Mar 2013

Hello Everyone.

Before I share where I am at in my journey, I would like to thank everyone for their messages of hope, faith, determination and the sharing of experiences and practical information.  As you all know, looking up information on the internet about gallbladder cancer  is akin to  receiving a death sentence.  I was alone at my follow-up appointment and did not tell anyone about the diagnosis for three days.  This website and your stories are what helped pick me up off the floor after receiving the diagnosis -- thank you!

 

On February 21, 2013, while at a follow-up appointment after a laparoscopic cholecystectomy the week prior,  I learned I had gallbladder cancer - 1 tumor had been discovered, staged as T2. My doctor informed me that this type of cancer is rare, aggressive and has to be staged surgically.  I was referred to the Knight Cancer Institute at the Oregon Health Science University and met with my team on February 27th.  A CT scan performed that day revealed no obvious tumors.   On March 15th I will undergo a liver resection, lymphadenectomy and possible bile duct excision and recostruction. Depending on what is found, I understand that I have chemotherapy and/or radition in my future.  After spending the day at OHSU, and especially after meeting my surgeon and his team, I feel like I will be in the best possible hands!

 

My game plan is to skip denial and anger and move straight into FIGHT mode!  I am a 50-year old mother of a beautiful, 13-year old young man and the wife of an incredible and loving husband.  I am blessed to have a large and supportive family, as well as close friends who are already standing with me.  Remaining positive and hopeful is paramount, I know.  Knowing what is coming my way can really help me in that regard, so any advice or words of wisdom are appreciated.  Thank you!

Maureen

Monarch64
Posts: 22
Joined: Apr 2012

I'm sorry you had to find us, Maureen.  But, I'm so glad you did!

You have a wonderful attitude and that fighting spirit will only help you get through this.

First things first, I want to mention something to you.  My mom has a very similar story to yours.  Cancer found incidentally after having her gallbladder removed.  She was originally staged as Stage 2 but they've revised it to 1B now.  Her surgeon was very open to discussion with all of us.  I came across a study that recommended excision of the trocar sites as well when the gallbladder was removed laproscopically.  I mentioned this to him.  He asked for the link, studied it, and determined that this was appopriate and necessary.  So, when he did the liver resection he also removed all the margins where the gallbladder surgery instruments exited the body.  He also removed and rebuilt the entire area around her bellybutton (where the gb was removed through).  This is all done to "catch" any stray cancer cells that may have hitched a ride on the instruments and jumped off into the fat/tissue layers as they were removed.  Here's a link to the report: http://www.ncbi.nlm.nih.gov/pubmed/16399118  Mom's doc then did some additional research and decided this was something he wanted - and needed - to do,  You may want to question your doc about this.

Next, you asked for advice.  I can't give the patient's perspective but I can give the caregiver's perspectice.  I treated my mom's diagnosis and treatment like a project.  I put together a project binder divided into section for blood test results, doc notes (I got copies of all of the notes from every visit), instructions, hospital notes...everything.  I also kept a detailed notebook - and, I got my mom a daytimer and had her track every day (how she felt, anything that she wanted to ask a doc about, her weight, temp, etc).  All of these proved invaluable during appts.  And the various doc appreciated having all the info at their fingertips when a question arose.

I also made it clear that Mom was a person - not a statistic, not a number.  Seeing us all together so often (at the hospital, appts, etc) and seeing how involved and committed we were to the entire process seemed to make them believe in a positive outcome as well.  We all quickly became a team.  And, I never left an appt that I didn't thank the doc and nurses for being part of our family's team. 

Is there anything else I can answer for you or your family?  If so, please ask!

Mom has her 2-year scan in a few weeks.  As always, there is a bit of "scanxiety" in play.  But, we've been very blessed and her scans have all been clear.  We believe that that will continue.  And, my family sends their positive thoughts and prayers for the same for you.  Hang in there through the surgery and chemo/radiation.  And know that we are pulling for you!

Charmi

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

HI:  I cannot stress enough the need for open gallbladder surgery if cancer is suspected (although often it is a surprise as there aren't any unique symptoms).  Charmi is right on when she reported that cancer cells can hide out in the instruments during a laproscopic surgery as well as scrape off the tumour if it is outside the gallbladder wall as mine was.  I had my gallbladder, its tumour, and part of the liver removed laproscopically and that should never had happened.  Sure, laproscopic surgery is less painful with a shorter recovery time, but I fear that the cancer spread in my case to the peritoneum through this surgery.  As well, laproscopic surgery doesn't allow the surgeon to do all the other necessary cutting that should be done with gallbladder cancer (see Lily's story).  So, I guess I would urge all potential gallbladder cancer patients to insist on an open surgery.  I wish I had known enough to have done this!

Cheryl

amo
Posts: 1
Joined: Mar 2013

Has anybody had a high reading that was wrong?  My wife who has been battling this cancer since August 2010 had a CA 19-9 reading of 182 in January and it increased to 3000 recently. 

Comsalee's picture
Comsalee
Posts: 5
Joined: Mar 2013

All:

Thank you Charmi and Cheryl for your advice and information!  On March 15th, my surgeon performed a liver resection and lymphadenectomy on me.  My bile duct was not compromised, so it did not need to be excised.  No cancer was discovered in my liver, but was discovered in my lymph nodes.  Two nights ago the pathology report was finally completed, with hard news to hear: I have been staged as 3B.  I have an appointment to have the staples removed and to meet with an Oregon Health Science University (OHSU) oncologist on April 3rd.  Any information or advice anyone might have on curing or treating gallbladder cancer that has spread to the lymph nodes is appreciated. Specifics regarding chemotherapy and radiation treatment, especially. The good news is that surgery went well and I am recovering exceptionally well. 

I am 1/2 Native American, a member of the Confederated Tribes of the Umatilla Indian Reservation (Cayuse, Umatilla and Walla Walla) and 1/2 white, and am fortunate to have the strong support of both Indian and Christian religion, as well as the support of a large, close-knit family and community.  Today I will share this news with my entire family, so that they can add their love and strength to ours as we begin the next step in this battle. Best wishes and positive prayers to each of you, myself included.  As Lily says, Every Day Is a Blessing!  Smile

Maureen

Comsalee's picture
Comsalee
Posts: 5
Joined: Mar 2013

The news that the cancer has spread to my lymph nodes and I have been staged as 3B has finally sunk in.  I've lost my center and can't find my courage.  If anyone has words of encouragement or lymph node survival stories, I could sure use them.  Thank you.

Maureen 

haugy
Posts: 9
Joined: Sep 2010

Hi Maureen,

 While no two cases are the same , I was diagnosed and had surgery june 2010 and was staged the same as you stage  3b    t3 n1 mo.  I was node positive and also  had liver involvement  .I also did 6 cycles of gemcitabine/ cisplatin chemo.   I have passd the 2.5 year mark and am going for 3 years .

Murray

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

Hi Maureen:  I am classified as Stage IV (there is no Stage V unfortunately) and 4 years ago was given only 2-3 months yet here I am.  Keep up your positive attitude.  What I find helps is not thinking about it - just going about my life and doing things I want to do. Awhile back when I was filling in the usual forms in the doctor's office I completely forgot to put down cancer as something I have! I also talk about my cancer with whomever is interested and if no one wants to talk about it, I go "into" nature and talk to the trees (sounds stupid but I'm a firm believer in the healing power of nature).  Be open to new procedures.  For example, they put me on folfirinox which is a new pancreatic cancer/colon cancer chemo and my cancers responded fairly well to it (although a perforated bowel and 5 months in hospital ended the treatments after 14 rounds). 

Keep in touch and keep positive.  The prognosis may not be good but living sure is.

 

Cheryl 

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

Hi Maureen,

Nice to meet you.  You are on a very winding road with many hills and valley's.  It is sometimes hard to get clarity in your head when the world seems to be swirling around you.  Those cancer cells are so tricky, they run, they hide and they just in general run amuck.  We hate them!  I too had lymph node involvement in the beginning and after my chemo treatment and surgery the pathology report came back with the verdict that there were still active cancer cells in over half of the lymph nodes that they had removed.  Those were terrible words for me to hear, but for me it meant that I would just have to go through an additional 3 months of chemo to get rid of them.  They are now gone and hopefully never to return for me.  But I never say never because you never know what is going to happen. 

You need to sum up all of your courage to fight this nasty beast and don't let him win.  You can do it!  I'm not saying that it will be easy or pleasant, because we all know that it isn't.  I think that we have all found each other for a reason, and that is to let all the doctor's know that they don't have all the answers yet and we are people that are willing to try almost anything to make progress against this disease that has never been given the attention before.  We are a group to be reckoned with!

Stay strong, Hope & Faith will carry you through.

Take Care

Lily

 

Monarch64
Posts: 22
Joined: Apr 2012

Been thinking about you and sending positive vibes your way, Maureen.

How are you doing?

Charmi

wandabill
Posts: 1
Joined: Apr 2013

Hi, I am Wanda 57 yo female diagnosed last week with this.  It is a blessing to know there are SURVIVORS!!  Have any of you heard of the Huntsman Inst. in Salt Lake?  My family is in the area so I would like to use them if they are the right place.

Thank you for any info.

Monarch64
Posts: 22
Joined: Apr 2012

Hi Wanda,

I'm sorry you had to find us but I'm glad you did when you had to! 

I am not familiar with the Huntsman Institute but I wanted to welcome you to the boards and let you know that you are amongst friends here.  We will support you and cheer you on in your journey.

Just remember that you are a person - not a statistic.  And, make sure your medical team understands that as well. 

What questions do you or your family have?  Ask away!  And know that my family and I will lift you in prayer tonight. 

Best to you - and to all on the board!

Charmi

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

Hi Wanda,

Nice to meet you!  I'm so glad that you found us.  We are here to help you to the best of our abilities.  What stage are you in?

Yes, I have heard of the Huntsman Institute in Salt Lake City Utah.  They saved my sister's life.  Two years ago she had treatment there for Stage 4 Colon Cancer.  She sings praises about all the doctors there.  She is still doing her follow up there even though she lives in Green River Wyoming but she wants to go where they took care of her.  My brother-in-law also had treatment there for his brain cancer.  Our family believes in them.

I don't know if they have any experience with GBC, but that is something that you can find out.  It is imperative that you find the right doctors to go hand and hand with you and that you are comfortable with them on this journey.  You need to do some research so that you can feel good about the choices that you will be making regarding your treatment plan. 

Let us know how it is going.

Hope & Faith will carry you through.

Take Care

Lily

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