Re: Make sure you are sitting down.

Grover, I'm curious, how many cycles of Gem/Cis did you complete?

Best of luck with the surgery and please keep us posted!!

Re: Make sure you are sitting down.

I just looked over your story Grover. What lobe was the tumor they seen first? My biggest (around 4cm) is in my left lobe, then we learned about smaller spots in my right lobe. They never gave a number on how many spots are in my right lobe, but from what I understand there is just 1 in the left. I'm hoping my story will be like yours, and all the right lobe stuff will go away. wink

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Make sure you are sitting down.

Eli    My first chemo was 7/22/11.  I missed 2 sessions, 1 with low platelets and 1 on 12/30/11 because neutrophils were under 1.  At this point my last chemo was on Jan. 20/12.  I'm off now pending the surgery on Mar. 1.

tiff   My tumor was first found in the left lobe.  Off the PET scan they saw 3 small satellite tumors in the right lobe, they were close to the center.  During my CT scan on 11/9 we could no longer see the tumors in the right side and the left lobe was shrinking.  At that point the ONC had talked with the surgeon and they mentioned the " possiblity" of a future resection if we continued showing improvement.  My wife and I kept that to ourselves, so's not to get everyone excited only to have it quashed later, it the improvement was not there.

I found this cancer on my own.  I had discomfort after eating ( even small portions ) across my abdomen right under the rib cage.  It was like when you overeat on Thanksgiving.  It lasted about 2-3 hours.  I then started pushing in on this area and could feel tenderness if I pushed hard enough.  In mid May I was running my fingers vertically up and down my abdomen on both the stomach side and then on the liver side.  At this point I felt a roundness, a hardness on the liver side.  It felt kind of like a 6" Brat was laying under the skin horizontally from left to right.  I knew right then that that feeling was not right.  I made an appt. with my family Dr. 

He felt what I felt, and ordered a CT scan, then a liver biopsy and the rest is history.  I never had jaundice, no one ever suggested a gall bladder, no bile backups, no itching, nothing other than me finding the swelling.  I believe God has been with me from the beginning and led me on this path to where we are today.

How many people on this board can say they found their hospital and Dr's on Facebook.  My daughter posted on Facebook in late June that her Dad had liver cancer, yada, yada, yada.  As we were going thru other testing looking for other locations of cancer.  A friend of hers sent a message that she was an Oncology nurse and if we had any questions to contact her.  Well, we did and she had worked at IU and recommended these Dr.s.  My local Dr and our small town hospital had connections with another hospital in Indianapolis.  And I asked my Dr. if he had heard of the Dr.s that had been recommended to me, he hadn't.  I asked him if he minded if I called down there to find out things, like ins, etc.  And that is how we found Dr. Helft.  We love them and the hospital.  Since then another lady in our church also had Dr. Helft as her Onc. Dr. and was cured of colon cancer.  Thats why I say my wife and I both believe we were led to those Dr's

The chemo worked from the beginning, and I never really had a lot of reactions from the chemo.  Somewhere in Sept., or Oct. I told the Onc. that "you may not believe this, but I don't feel the swelling in my liver area like I did when we started. "  He said, "  Sometimes chemo changes your body and not to think too much about it. "  I believe that, it's not that they don't want to give you hope, but " no false hope ".  For instance, I said to my wife, my seemingly successful story will not be shared with another CC patient that he might see next week, because they may feel too much elation hoping for the same results that may not occur.  We all are different.  He stated at one point, you could take 10 patients with the same cancer, give them all the same chemo recipe and get 10 different reactions, which is why fighting cancer is so difficult.

I have truly been blessed throughout this journey.  I have asked my Onc., more than once if I really had cancer, cause I have never felt like it.  Reading other stories here I so sympathize with all the suffering, and the trials and tribulations that we face.

Sorry about the length of the post, just trying to provide more info that may help others, in their healing, in their trying to understand this cancer and all cancers.  It's a rough battle.  Right now my roller coaster is on the top and coasting along, but at any time it may take the big plunge into the valley.

I'm thinking and praying for all of us, in our fight together against this disease.

Grover

Re: Make sure you are sitting down.

I found this article and pictures that may explain in more detail about the liver and why resection works they way it does.  Pic 1 shows how the branches are laid out inside the liver, and how hard it sometimes is to find the actual locations of small cancers.  I mean which branch is the cancer in, unless it is large enough to become a tumor.

http://pedicardiology-bala.blogspot.com … veins.html

The second picture shows the sections of the liver,  On my resection, everything is being removed except sections 6 & 7.  Because of the size of my tumor, the left lobe is pretty much dead, and shriveled up.  He said only about 10% is working.  So 1/2 half of my original liver is going.  Then other satellite tumors in the right lobe were located in sections 5 & 8 so as a precaution they are removing those also.  So I will left with 1/2 of the functioning liver as it now stands.  They could already see on the CT scan that the right lobe was already starting to grow ( regenerate ) in to the left lobe area because it had become smaller.

The article explains haw the arteries and veins are connected to each liver section and how when a section is removed it does not effect any other sections.  Isn't that cool.

I'm a visual person and this really helped me a lot.  I've been on my Onc. to get a plastic liver with a hinge that he could open up and show me what he's talking about.  He walks over to the whiteboard and draws a liver ( looks like something you're 7 year old would draw ) and then marks it up. 

On Friday I printed out 2 pics like I linked to, took them with me,  and scotch taped them to his board telling him to have them laminated so he could use them and draw on them for other patients.  Of course, he laughed.  I'm just taking over, in my own way.  He doesn't know it yet.........lol

Now I could be completely wrong about everything I just typed, but that is how I understand it at this time.  Do your own research.

Hope this helps others.  Grover

Re: Make sure you are sitting down.

Wow! You sound so much like me! I would always say it feels like I have ate a Thanksgiving day meal. I also have very few symptoms of cancer, even the pain I went to the ER with is gone. Plus, my appetite is coming back, I have been eating more this week than I have in a long time.
Plus with my CA19-9 going down and liver function test going from high to normal...I just have a good feeling, but don't want to get over excited. wink

Do you care to share your CA19-9 history? What about your liver function test?

I'm so excited for you! Your story gives hope to all of us!

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Make sure you are sitting down.

Thanks for the picture Grover! I will bring this next week to my surgeon, also. He draws like a 3rd grader, too. As I understand it when he does my resection I will lose 1, 2, 3, 4a, 4b and most of 8. I believe, although it was very small when we found it (only 5x6cm or so) it was located in 1, 2, 4a and 8 at the very top of my liver.
Grover, I am so glad to hear your great news! I know it's scary to put the good news into words or writing, also, just in case you jinx it, but we all (I'm sure I speak for everyone) love to hear good news, even if it's temporary good news! It still gives us hope.

Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Make sure you are sitting down.

Tiff, sorry for the delay.

I have never received any CA 19 whatever counts, no billirubin numbers. 

I'll play the Hollywood producer here.  " I don't care what the numbers are, or other problems, just make it happen.  That's I why I pay you the big bucks. "   lol

I just don't know, until I was on this board for awhile, I hadn't know anything about CA-19 and never remembered to ask.

Let's all get well, Grover

Re: Make sure you are sitting down.

Congratulations, Grover! I haven't been on the board in a long time. I am very glad to hear your good news.

Re: Make sure you are sitting down.

So good to hear that you're now ready for the operation.  We'll all be waiting to hear how it goes and wishing you well!  Did we ever think that a major operation would be good news?  Our perspective does change!
Let us know how it all goes....Kathy

Re: Make sure you are sitting down.

What wonderful news! Those prayer pants must work! big_smile

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How amazing!!!  God is grand! My husband had the whipple 06/23/12, followed by chemo using Gemzar & 5FU (discontinued 5FU after 3 weeks), and along with 25 radiation txs. Then, because of cancer recurrence about 6 months out, he was given 4 months chemo using Gemzar and Cisplatin. After it's completion, a CAT scan revealed that the cancer had grown a smidge, so now, we are in a 3rd chemo using Oxaliplatin and Xeloda. 

I keep telling my husband that he will just have to be my little miracle.  We hope this last chemo cocktail will shrink his cancer, which is in the surgical bed area pressing on the transverse colon. 

Your news is truely terrific.  Stay strong in faith for with God nothing is impossible. Luke 1:37

37 (edited by Jim Wilde Sat, 11 Feb 2012 15:16:12)

Re: Make sure you are sitting down.

Grover what wonderful news.  I'll bet you never thought you would be overjoyed over the prospect of a major surgery.  I was too, but I didn't have to travel the same road you did.  This gives hope to those at the earlier parts of the journey, for it is a journey, and not an event or series of events.  I('ll be thinking of you on March 1.  While the surgery is a major surgery, most come through it just fine.  I had several things not in  my favor (major cardiac issues and age).  Most resection patients are maintained under general anesthetic following surgery for a day or more.  Even though I had several VT events during surgery, I was wide awake the following  morning, breathing tube was already removed and I was feeling pretty good.

Tiff, CA19-9 and liver function numbers becoming more in the normal range is very good news.  CA 19-9 (pancreatic cancer marker test ... most cc responds to this also) is subject to some amount of random variation and is influenced by any inflammations or infections you may have.  Normal max is 37, but mine have been in the 80 to 156 range since August 2011, without any good explanation.  In the liver panel, the bilirubin direct should be < 1.0.  Again mine have been slightly elevated.  High bili numbers can prevent surgery ... it did with me until the number got close to 1.0.

Grover, best of luck with your surgery and sending prayers your way

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm