Gallbladder Cancer - 2011

Monarch said:

Debbie,
There are others who
Debbie,

There are others who can better answer your questions about various treatments. I know that they were talking about giving my mom gemzar and oxilaplatin - which several other here have had. I know that that is what the doc is keeping in his back pocket if it is needed in the future.

What I can address is the downer docs. When my mom was diagnosed last April, the doc told us 6 months. The next appointment (where we discussed the liver resection), the doc started going over statistics and my mom stopped him. She told him she appreciated all of the numbers he was reporting - but that was someone else, not her. She told him plainly that she was a person, not a statistic.

I began referring to us as “Team (last name)”. I’d tell him that I was so glad he was part of “Team (ln)”.

Mom had her liver resection and the doc went after a "questionable" lymph node next to her vena cava. He got it - and I believe that part of that was because he was looking at Mom as a person - and us as a family. We were blessed, and all of the pathology reports came back clear. He was amazed - and became Mom's biggest champion! That’s when I began thanking him for being part of our miracle.

On to the oncologist. Statistics, statistics, statistics. The oncologist started into the numbers - Mom, Dad, and I stopped him immediately. He is a great doc but is definitely a glass 1/2 empty type of guy. I told him from the get-go that he was part of Team (ln) and that we fully intended to win this battle. He still has a tendency to want to look at numbers, so I never go in there that I don't have a story about folks on these boards. He can give me a number and I'll give him many living, breathing human beings. Still, it is frustrating, and quite honestly frightening sometimes.

Radiation oncologist...from day one, he has been absolutely positive. At the end of our first appt, I thanked him for not pulling out stats. He said that that was “old news and other people”. It has never been a question with him. His glass has been 1/2 full from the start.

Keep in mind that you and your family are a team and make sure the docs know it. The docs are part of that team, make them invested in the outcome. And, be sure to thank them for their role on your team.

I wish you and your husband all the best.

Charmi

Thank you Charmi
Thank you for the positive reply, I am going to try and be more positive with her and stop her like your Mum did when she starts on numbers. It has got to the point where I dread having to talk to her because she makes the pair of us feel so down! I will try the new approach like you suggest, if nothing else it will make us feel better even if I can't change her thinking!
Debbie

lirok said:

Great News Charmi
That is some FANTASTIC news right there. You couldn't ask for more. As for me, I had my appt yesterday to review the scans. The bone scan came back fine. They said I have some arthritis and found some trauma from an old injury. As for the PET scan, I still have some very small residual cells in the stomach and chest area (lymph nodes). There are no new growths. All of my major organs are clear. We are going to go ahead with some additional chemo to try and clear things up. I am having a port installed Tuesday and then start immediately on oxiaplatin and 5FU for the next 2-3 months. I will have the 5FU pump so I will wear it for 48 hrs. They trained my wife on how to disconnect so I won't have to make another trip to the city. As the doctor said, it is very small and we need to continue to manage it. My 19-9 went from 116-114 so that was somewhat better news.

I fully expected the additional chemo. The doc also said we have "tons" of options so we shouldn't worry or panic. We will manage it. I gotta say, I have one of the best oncologists around. I am doing some reading on the side affects of these new drugs. All in all, I am very upbeat. Its just a small bump in the road.


Hope everyone is feeling well.

Rocky

Chemo Regime
Hi Rocky: I too have gallbladder cancer stage 4 with spread to the peritoneum. My gallbladder, its tumour, and part of my liver were removed April 2010. We are now working on the peritoneum nodules (6 in total so far). I started with cisplatin/gemcitibine (12 treatments) and as that didn't do much for the peritoneum nodules I did a further 12 treatments of oxaliplatin + irenotecan + 5FU pump. A tougher regime but no major problems. We are now waiting to see what is next after scans I had a week ago. A PET scan is in the offing and maybe surgery.
Hope all goes well for you. If you need info on how to control oxaliplatin's often nasty side effects, let me know. I had bad reactions at the first treatment, took adv antage of advice on this website, took various supplements, and only had a problem with diarrhea after that.
Cheryl

Monarch said:

Good news for you too, Rocky!
I'm so glad that the bone scan came back clear. Mom and I were talking about that today. Her legs are so sore and get so stiff very quickly. She said that she thinks part of the problem is that she's been so inactive post-surgery, during chemo, etc that her legs are just protesting. LOL The problem is, when you've had something like cancer, everything scares you at first. (I was the same way after I had a prescription medicine induced stroke a few years ago...any new pain or odd feeling could send me into a frightened tizzy.)

You PET scan results are excellent, too! No new growths. Major organs clear. And a falling 19-9! That is just awesome! I hate that you're going to have to have more chemo but if that's what it takes, then full speed ahead!

Your doc sounds fabulous. I like his attitude. And YOURS!

Mom, Dad, and I are right there with you, Rocky. You and your family are in our prayers every night.

Best wishes to everyone!

Charmi

Good news is great
Hello All,
I have not posted for a while, mainly because I cannot figure out how to post unless it is a "reply." I am obviously not very computer literate.
I was diagnosed at the beginnning of March, 2011. I had my gallbladder removed but the surgeon could not remove the cancer that had spread to my bile duct. I had a stent installed to allow my bile to drain properly and had several replacements of the plastic stent last year. Last September, a metal stent was installed and it has only blocked once a month ago. My doctors and I are going to establish a regular schedule to do ERCPs to clean it and prevent the blockages and resulting liver infections.
My cancer has not changed since my diagnosis. My oncologist thinks that at least some of it may be dead. Additionally, my CA 19-9 tests have been well within normal limits for many months. I also feel much better than I did a year ago even with my intense chemo. My oncologist says that it is incredible that I am doing so well. He hopes that we can continue to treat this as a chronic disease for a long time. I still hope for eventual shrinkage to permit surgery.
I have had some chemo related problems. I take oral Xeloda for 14 days with an infusion of Gemzar on day 1 and day 8. I have chronic anemia from the chemo and have a Neulasta shot every cycle and need occasional transfusions. But I have no digestive problems, my appitite is great and I feel well most of the time. I think that I am extremely lucky and fortunate to have such a great oncologist with experience treating this disease.
Here is a summary of my cancer treatment so far:
Six weeks of radiation and Xeloda from April through May last year. I believe that the radiation was very beneficial to me.
One month off to recover then I commenced my present reigimen of two weeks on Gemzar and Xeloda followed by one week off. I started that last June and it will continue as long as it continues to work. I will try other chemo if my cancer grows again.
I live in the Seattle area and go to Swedish Cancer Institute. Everyone is very positive in dealing with me and my husband although also realistic that I have a very serious cancer, as all of you know.
If anyone has a stent and has questions about how to cope with it, I am happy to share my experiences. I often read everyone's comments and get so much positive energy. when I was initially diagnosed, i received the same grim statistics that many of you have shared. But I always believed that I could overcome this, at least for a long time.
I wish everyone well and thnak you for sharing your experiences.
Betty

lirok said:

Good News
Did anyone have any issues with low grade fevers 100-102 during chemo? I had to have my bile ducts reconstructed and I have 3 metal stents installed. Recent scans show them to be clear but my oncologist feels that this is what is causing the fever.

Thanks,

Rocky

Help!
Hello. I am brand new to the site and need some assistance/advice. My 66-year-old mother was just diagnosed with adenosquamous carcinoma of the gallbladder following cholecystectomy for gallstones. She is very healthy and active, so you can imagine our shock. Her PET scan shows an area of high activity in the right lobe of the liver, which the doctors believe is metastasis. She is scheduled to have an exploratory laparotomy on April 10th. If there are no other visible lesions, the surgeon plans to resect the right lobe of the liver. They want to perform a portal vein Embolization on April 2nd. Apparently this will cut off the blood supply to the right lobe and make the left lobe "take up the slack.". Have any of you undergone this procedure? Would you recommend having it done? Is there any information you feel is vital for us to have? This news has knocked our entire family for a loop, and we're scrambling for answers while not being sure if we're asking the right questions! I am so glad I stumbled upon this site, though. Your stories have given me hope. I've shared some of them with my mom to encourage her to fight, to not give in to the statistics.
Thank you for any information you can provide.
Donna