Gallbladder Cancer - 2013 (Any Stage)
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
Comments
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Gallbladder cancer
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
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hello lily!!! hello
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..
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Jean's Gallbladder CancerJean160 said:Gallbladder cancer
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
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
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Zebramae's husbandzebramae said:hello lily!!! hello
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..
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
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Gallbladder Cancer 2013Lily50 said:Zebramae's husband
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
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
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Hello all!!!!westie66 said:Gallbladder Cancer 2013
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
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
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Maudsie's Hello Allmaudsie said:Hello all!!!!
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
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
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Gallbladder Cancer 2013westie66 said:Gallbladder Cancer 2013
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
Hi Cheryl,
Thanks for sharing your courageous story. You are one tough cookie! Our new mantra should be "STILL HERE!"
Take Care
Lily
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surgical consult
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
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Mary's Surgical ConsultGram517 said:surgical consult
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
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
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Gallbladder Cancer 2013Lily50 said:Mary's Surgical Consult
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
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
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Rocky's GBC 2013lirok said:Gallbladder Cancer 2013
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
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
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Hello and happy New Year!haugy said:Hello
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
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
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Great to hear from everyone!lourdes726 said:Hello and happy New Year!
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
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?
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Hillary's MomhillaryjoRN said:Great to hear from everyone!
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?
.
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
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Murrayhaugy said:Hello
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
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
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Happy New Year Lourdeslourdes726 said:Hello and happy New Year!
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
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
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Gallbladder Cancer 2013lirok said:Gallbladder Cancer 2013
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
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
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Gallbladder Cancer 2013lirok 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,
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
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