Gallbladder Cancer - 2012 (Any Stage)

westie66 said:

Palliative Treatment Gallbladder Cancer
Hi: There are a number of us on this discussion board who either got the gallbladder and its tumour out but it had already spread to other sites like the peritoneum or liver or bile duct, or who had surgery but nothing surgically could be done. Thus, chemo appears to be palliative only (so I was told anyways). My chemo regime of gemcitibine + cisplatin didn't stop progression of the mets in the peritoneum or liver but nothing else appeared which is good. I am now on folfirinox (the standard treatment for pancreatic cancer which I don't have) - my previous 12 treatments showed stability under this treatment. Not sure what else there is if this stops working. The big problem is the peritoneum spread as it doesn't respond well to chemo.

I don't have any symptoms yet (my surgery was April 2010) - they are all from the chemo.

I have known several people who were caregivers to husbands with gallbladder cancer that couldn't have surgery and couldn't take the chemo. I'm not sure though how to ask them to relate what they went through. I went through it with them via emails. Unfortunately most people diagnosed with gallbladder cancer are in the late stages and haven't lasted long - that isn't us! Treatments are prolonging quality life now.

Cheryl

Peritoneal spread
Hi Cheryl, I have a friend with ovarian cancer that has spread to areas in the peritoneum. She is starting to get chemo delivered right into her peritoneum; so it can directly hit the areas. Is that a possibility for you? Do you get your chemo IV, or po or peritoneal? How are the side effects with the folfirinox?

It seems the future for cancer is to map the genetic defect that has gone wrong. Is there anyone out there doing this for gallbladder cancer? (i.e. taking the cells and doing some genetic mapping for targeted therapy). I also have a friend with brain cancer that went to Cedars Sinai in Los Angeles. They took his tumor cells and made an immunization based on his particular cells.... it is a trial, but sounds very interesting.

westie66 said:

Gallbladder Cancer
Hi Kevin: I don't know anything about the low-dose treatment unfortunately. I went the traditional route - gemcitibine + cisplatin - but because I had already had spread to the peritoneum that treatment didn't work on the spread (but likely kept the beast at bay in other areas). I had the two weeks on and 1 week off treatment and it went well - no problems at all. I was on reduced cisplatin though (70%)as I did have a problem with colon bleeding on full strength. Some folks tolerate carboplatin better than cisplatin as it is weaker. For some reason, here in Canada radiation with gallbladder is not offered, something about a compromised liver. You might read Lily50's bio - she had very aggressive chemo, then surgery, then chemo again (but not radiation). I know for a time she had chemo every day. I'm glad they got out the spots on the liver at the same time and the lymph nodes. Wish I had had that option.

My treatment now as I'm not eligible for surgery is something called folfirinox (oxaliplatin + irenotecan + 5FU pump) which is used in colon cancer and pancreatic cancer treatment. I don't have those but it is those nasties on the peritoneum that are a problem and this treatment seems to work.

I hope someone can report on the low dose treatment for gallbladder cancer. I do know someone who is doing that treatment in Vienna, Austria (a gentle chemo regime she calls it).

Cheryl

Thanks for the reply to Kevin's questions
Hi,
I'm his wife Susan, under treatment for GBC as he described. I have decided to try the low-dose Chemo regiment at a treatment center here in the Seattle area where I live. I'll keep you posted as to how it goes as treatment progresses.

Thanks to you and all the members of this board who provide such hope to so many everyday. You are my heroes!

Susan

Susan_VizDame said:

I'm in the Seattle Area Too - New "ish" GBC diagnosis
Hi Jean,
I replied to your post last night but don't see the posting here this AM. I'm new to this board and have found the posting inspiring.

My story is similar to your "incidental" finding of GBC following gallbladder removal on Feb. 2nd. Mine was a T3 tumor that had broken through the gb wall. Subsequent liver resection on April 5th, removed two cancerous tumors and 16 lymph nodes which were all negative. My surgery was also at Univ. of WA (Dr. Park). I felt the surgeon and all the staff at Univ of WA were top-notch.

I'm starting Chemo next week and getting port installed this Thursday. I had thought about going to Seattle Cancer Care Alliance, even going to a few appts there but just this weeks decided to get treatments at Seattle Cancer and Wellness Center in Renton. I liked their approach of supporting the immune system through treatments and administering low-dose therapy over a longer period of time.

I'd be interested in knowing where you had your chemo treatments and what you thought of the facility and Dr, if yo don't mind sharing?

All the Best,
Susan

seattle area for chemo
Hi Susan, I had the same surgeon as you! He was great. I felt he was very thorough, and was very calming for me in such an emotional time of dealing with this. My surgery was almost exactly a year before yours. I had my chemo through group health in Tacoma. I also sought opinion at Cancer Care Alliance. My husband and I read through many, many articles (which wasn’t easy given all the lack of current research.... it really made it tough). But one thing Dr Park told me was that there is not one right answer to approach which chemo you use. Cancer cells can be so different; what works for one person may not work for another. We choose to go with the cisplatum/gemzar combo. The staff with chemo was great and kind, but I can’t say it was fun: but of course my goal was to kill cancer cells. All I know is that right now I feel great and I have no restrictions on the activities that I can do. But do rest and don’t push yourself during chemo as it does make you fatigued. My hair has grown back and feels thick (it may not do what I want it to, but I am happy it is there ☺) The best of luck to you! You will be in my prayers.

Susan_VizDame said:

Thanks for the reply to Kevin's questions
Hi,
I'm his wife Susan, under treatment for GBC as he described. I have decided to try the low-dose Chemo regiment at a treatment center here in the Seattle area where I live. I'll keep you posted as to how it goes as treatment progresses.

Thanks to you and all the members of this board who provide such hope to so many everyday. You are my heroes!

Susan

Cancer in the peritoneum
Cheryl and others with cancer in the peritoneal area, I was wondering if your health care team talk about peritoneal chemo (ie, directly administered into the peritoneum). I have a friend with ovarian cancer (recurrance), and that is where she is getting her chemo.

Interestingly, I also have a friend with brain cancer (glioblastoma)...where does all this cancer come from., anyway?......... He is in a trial in the LA area where they did genetic testing on the tumor and have made an immunization for him that he will get every few weeks. It is just a trial, so there is a lot of study that has to be done; but I saw him the other day and he looks and feels great. He is receiving oral chemotherapy and also received chemo directly in his spinal fluid prior to this new treatment.

Jean160 said:

Gallbladder Cancer
Hello to all! I was posting in last years blog, but have not posted for a while. But I am reading all the new posts and it gives me great encouragement. We need to share information because even the specialists don’t have a lot of personal experience since gallbladder cancer is so rare.
I consider 2011 my hard year and hoping 2012 is much better. I was diagnosed with gallbladder cancer after my initial gallbladder surgery Feb 24, 2011. An ultrasound noted my gallbladder looked suspicious, but my surgeon convinced me there was nothing to worry about because this cancer was so rare. Ha! I had a T2 and the cancer seemed to originate on a polyp. With additional staining, they found isolated tumor cells in the lymph node next to the gallbladder, which the surgeon had also removed. According to AJCC 2010; that would be a T2 N0 (+) M0 (that plus is for the isolated tumor cells because no one knows its significance). Of course this bought me the second surgery of liver resection and lymphadenectomy (10 more lymph nodes). This all came back negative. I spent my summer doing chemo (the Gemzar/cisplat combo at full dose). I hated it but I got through it. I did not do radiation. Initially I sort of decided to retire after reading all the terrible statistics (thinking if I was only going to live a couple of years that I might as well enjoy some relaxation). After chemo was over and I started to feel better, I got bored at home. I had 2 clear scans (a CT and an MRI.... who know which one is best ☺). I have so many surgical clips in me that next time they want to do a 4 way liver CT protocol of the abdomen (I guess to check the area with all the clips better). I live in the Seattle area and felt I had a great surgeon at the University of WA. I returned to work 3 days per week. I have been feeling good, but I get “scaniety” when it come time for another scan. Those old statistics need to change because surgeries and treatments are getting better and the articles just keep recycling the old statistics! Blessing to all of you for sharing your stories because even stage IV can have good outcomes; Lilly is a great testament to that! By the way, I need to try that supplement for tingling in fingers and toes (cisplat chemo)
The best to all of you who are fighting this battle! Jean

Hi Jean160
Your story
Hi Jean160
Your story sounds exactly like my moms. incidentaly found the "polyp" on an ultrasound...told us up and down they really didn't think it was cancer...but did an open surgery just in case. tumor was a T2 N0MO. she had a liver resection and 16 lymph nodes removed, all negative! she is on her 3rd week of treatment, consisting of oral 5FU and radiation mon-friday for 5 weeks. then she'll have a month off then start IV chemo gemcitobine for 4-6 months. Great to hear from another survivor with similar staging!!!
God bless Hillary

Jean160 said:

seattle area for chemo
Hi Susan, I had the same surgeon as you! He was great. I felt he was very thorough, and was very calming for me in such an emotional time of dealing with this. My surgery was almost exactly a year before yours. I had my chemo through group health in Tacoma. I also sought opinion at Cancer Care Alliance. My husband and I read through many, many articles (which wasn’t easy given all the lack of current research.... it really made it tough). But one thing Dr Park told me was that there is not one right answer to approach which chemo you use. Cancer cells can be so different; what works for one person may not work for another. We choose to go with the cisplatum/gemzar combo. The staff with chemo was great and kind, but I can’t say it was fun: but of course my goal was to kill cancer cells. All I know is that right now I feel great and I have no restrictions on the activities that I can do. But do rest and don’t push yourself during chemo as it does make you fatigued. My hair has grown back and feels thick (it may not do what I want it to, but I am happy it is there ☺) The best of luck to you! You will be in my prayers.

Jean160 - Thanks for your reply
Thanks for sharing your experience,
It's good to hear that you feel great following your chemo treatments - that gives me hope as I start my chemo treatments. I'll also be getting the cisplatum/gemzar combo, seems to be the standard chemo for GB cancer. I'm in the Gig Harbor area but will be driving to Renton (Seattle Cancer Treatment and Wellness Ctr.) for treatments. I read through their patient stories and talked to one patient who lives near me. He also had an aggressive cancer and had been given a short time frame to live. Here a year later and in remission, he had only the best things to say about the Doctors and care at the center.

They administer chemo in a metronomic schedule which is typically a lower dose but also w/fewer breaks in the schedule. They also provide supportive naturopathic treatments which made sense to me.

Thanks again for sharing and keeping me in your thoughts and prayers.

Susan_VizDame said:

Jean160 - Thanks for your reply
Thanks for sharing your experience,
It's good to hear that you feel great following your chemo treatments - that gives me hope as I start my chemo treatments. I'll also be getting the cisplatum/gemzar combo, seems to be the standard chemo for GB cancer. I'm in the Gig Harbor area but will be driving to Renton (Seattle Cancer Treatment and Wellness Ctr.) for treatments. I read through their patient stories and talked to one patient who lives near me. He also had an aggressive cancer and had been given a short time frame to live. Here a year later and in remission, he had only the best things to say about the Doctors and care at the center.

They administer chemo in a metronomic schedule which is typically a lower dose but also w/fewer breaks in the schedule. They also provide supportive naturopathic treatments which made sense to me.

Thanks again for sharing and keeping me in your thoughts and prayers.

Mom has three weeks down of
Mom has three weeks down of Chem/radiation and is doing great. alittle nauseous but zofran helps! she has two more weeks of treatment left and then will have one month off followed by 4-5 months of IV Gemcitobine given once per week. It seams that most of the people on this board have had Cisplatin in combination with the Gemcitobine and I am curious why she is only going to recieve Gemcitobine. I'll have to ask the oncologist next week. also is anyone aware of anything out there (trials/research) that is available for prevention of reoccurance?? I can't find anything! I know GBC has a high reoccurance rate and am interesed in even looking into alternative medicine (diet, ect) to help prevent this! also would you guys recommend a port/PICC for the gemcitibine?? I told her she should have one but the oncologist said he thinks she should do fine without one.

Thanks everyone and HAPPY MOTHERS DAY to all of the mommies! Hillary

Monarch64 said:

I'm Relaying on Friday
Hey gang,

Wanted to drop in and let you know that I am Relaying on Friday night/Saturday morning. You are all in my thoughts and prayers.

I have made a luminaria for all the survivors here. Please forgive me if I've accidentally left any names off. Please know that you ALL are in my heart and will be with me at the Relay for Life.

My team is called Team Monarchs & Miracles. I wish a long life filled with both for everyone.

I can't figure out how to post a picture here so here's a link to the picture of our luminaria that I've posted on my blog:

http://charmischroeder.blogspot.com/2012/05/for-my-friends-on-gbc-board.html

PS If I've accidentally left someone off, please let me know before tomorrow afternoon and I will add the name.

*** I've just added a pic of the Caregivers' luninaria to the link above. Again, I've included the names I know. If I've missed anyone, please let me kno.

Charmi

Team Monarchs & Miracles
Thank you, Charmi, for the luminaria and relay! It feels good to have support and prayers! And thank you, Rocky for the sweet mother's day message..... we are all on this journey together and this group makes for such a wonderful community (of course we wish we were not here; but given the rarity of this thing; it's so good to know survival is happening!). We don't have current articles, but we certainly have our own statistics!!!

I will be having another scan at the end of the month, so I'm starting to get scaniety. They want to do a 4 way liver protocol CT scan of the abdomen. Apparently to have a better look where all my surgical clips are: they apparently cause some refractory in the scan so every inch can't be looked at. I keep thinking...... "stop looking for something"! But then again... if it is okay; I will feel better. Since my original surgery, it is now 15 months.

I hope everyone has a good week. Spring is here in the West, and all the flowers are looking so nice. I took a 2 hour walk yesterday and it felt great! Take care. Jean

Jean160 said:

Team Monarchs & Miracles
Thank you, Charmi, for the luminaria and relay! It feels good to have support and prayers! And thank you, Rocky for the sweet mother's day message..... we are all on this journey together and this group makes for such a wonderful community (of course we wish we were not here; but given the rarity of this thing; it's so good to know survival is happening!). We don't have current articles, but we certainly have our own statistics!!!

I will be having another scan at the end of the month, so I'm starting to get scaniety. They want to do a 4 way liver protocol CT scan of the abdomen. Apparently to have a better look where all my surgical clips are: they apparently cause some refractory in the scan so every inch can't be looked at. I keep thinking...... "stop looking for something"! But then again... if it is okay; I will feel better. Since my original surgery, it is now 15 months.

I hope everyone has a good week. Spring is here in the West, and all the flowers are looking so nice. I took a 2 hour walk yesterday and it felt great! Take care. Jean

Team Monarchs & Miracles
Thanks Charmi, that was awesome. And Jean, you are welcome. Good luck on your scan. I am sure you'll get good news. I am coming down to the end of my 2nd series of 6 treatments (total of 12) of the 5FU and the side affects are REALLY kicking in. Diahrrea, neuropathy in both hands and feet. Terrible heartburn. Fatigue, fatigue and more fatigue. Also my feet and hands are peeling. I am complaining ? Not at all because I AM ALIVE. That's all that should matter to all of us. The doc is going to give me the whole month of June off to regenerate a bit. I will be in Florida for a few weeks in July as we rent a house.

Please, everyone on this board, stay in touch no matter what because when we don't hear from someone it scares me a bit. Stay positive, think positive and we will all get through this.

My best to all on this board. It has been a godsend to me and my family.

Rocky

Stopping By to say Hi
Hi Lily -
Stopping in to say hi and see how you are. I am so grateful you were there in those dark early days, the range of emotions were terrible. And yes I do want to live for my 11 year old, and will fight hard to do so just like you. I'm ok coming up on two years with no signs. Let me know how you are I think of you often.
Gina