Gallbladder Cancer - 2013 (Any Stage)

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......  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

Jean160 said:

Gallbladder cancer and good scan results

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!  

 

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

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 said:

Rick's GBC

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

 

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

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 said:

Charmi's Mom

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

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

v4l3nt1n4 said:

GBC Stage IV-inoperable. Anyone in Oz?

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

 

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.

lirok said:

Update

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

 

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

Charmi

v4l3nt1n4 said:

GBC Stage IV-inoperable. Anyone in Oz?

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

 

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

Monarch64 said:

Hello, Maureen

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

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