Gallbladder Cancer - 2011

bjs

Lauren21 said:

My Mom
Lily,

I have emailed, so please let me know if you didn't get it.

The stint was temporary and needed to be replaced - then the kidney infection. She is home now and we have hopes that chemo will start Wednesday. She sounds very weak and I've had to really stay on her about eating. She says she knows she needs to eat but she doesn't feel hungry and its just hard to make it go down.

I just don't want her to give this up without a HUGE fight. I mean, 48 years old, NO WAY. I beg God every day not to take her away from me.

Anyway, please let me know if you did not get the email. I know she is looking forward to hearing from you. I am keeping my fingers crossed about Wednesday and will let you know how it goes.

All your prayers are welcomed. I cannot express my thanks enough.
--Lauren

Bile duct stents
Hi Lauren,
My gallbladder cancer spread to my bile duct and I have had a stent since early March of this year. My gallbladder was removed but I have been told, so far, that the remaining cancer is inoperable. However I am not giving up on surgery later as I am getting good results from the radiation and chemo regimen.
When my first plastic stent was installed, I was told it would need to be replaced in twelve weeks. After ten weeks, I developed a complete blockage in it, fever, jaundice and a liver infection-very painful and frightening! then I was told that the stents actually only last a couple of months. I had a routine replacement of the second stent at eight weeks with no problems or complications. We are trying for nine weeks with the third one. I inquired about the metal stents which last about a year. But they are permanent and when they inevitably become clogged, a plastic stent has to be put inside it, which does not work well. Also, i was advised by my oncologist not to get a metal one as he thinks that I can live for years, maybe, with this chemo regimen and plastic stents are a better option for me.He said that cancer sometimes grows through the mesh of the metal stents and makes it impossible to unclog it.
Not everyone with GB cancer has a stent so I have also read the postings on the bile duct cancer discussion board. It is also under Rare Cancers.
I am so sorry that your Mom has to deal with this but she is so lucky to have such a supportive family. I am sending positive thoughts your way.
All the best,
Betty

Lily50

jane0411 said:

Mom's GB Cancer unique palliative question
Hi all,
I just found this discussion board today! We are new to GB cancer; my Mom is 85 and was diagnosed in mid-April with Stage 4. It has invaded the liver and some local lymph nodes. She had 7 infusions of Gemzar since June to no avail. The CT scan on July 23 showed the tumor had grown about 1-inch all around. The good news is that there are no other tumors found (on the scan)and the rest of her bloodwork is very good. All other organs are also functioning well. We are at the GI Cancer Center at Mass Gnl in Boston.
She has lost alot of weight and has pains in her stomach area (we are pretty sure from gas build up) and lower back pain--both of which make her day to day life rotten. Her entire active life has changed and she only goes out of the house to Dr appts.

Her GB Cancer is too advanced for surgery. The other alternative of 5 FU infusuion has only a 20% chance of helping her (and Gemzar was so debilitating that we don't think another chemo is worth it).

The doctors said the most relief of pain would come from radiation to the tumor, but BIG BUT, they would need to do laparascopic surgery to insert "spacers" to push the intestines out of the way so they'd have a clear shot for the radiation. (It was explained that her particular anatomy would require this.) The radiation would be 5 days in a row after recovery fr the laparascopy. I've talked with an operating room nurse I know who never heard of such a thing. She consulted w/oncologists fr her hospital in NYC who also never heard of such an operation.
So, I'm wondering if any of you are familiar with any of this? Also, laparascopy on an 85yr-old? Radiation and its SFX on someone that age?

Thank you all for your honest sharing of your stories. It has helped enormously in getting perspective on this awful, disease.

Jane

Jane's Mom
Hi Jane,

Glad you found us! We are here to help in any way that we can. I'm so sorry that this terrible disease has come into your mom and your lives. I'm a 51/2 year survivor of GB cancer. I too was told that I was inoperable. After 11 months of chemo I was able to have my surgery. Is her chemo cocktail strictly Gemzar? You mom is 85 and she has been fighting ever since her diagnosis. It is quite understandable that her active life has changed quite a bit. Chemo can take a very heavy toll on ones mind, body and spirit. Since you have said that her GB Cancer is too advanced for surgery and the next option for her is the 5-FU infusion, it is ultimately her decision if she wants to take a shot at that 20% window. At her age to even go through the Gemzar cocktail shows me that she wasn't willing to just give it all up. Kudos to her for being so inspirational to others. As far as the laparoscopic surgery to insert "spacers" in order for her to receive radiation I have never heard of such a thing. Maybe Maudsie has and can comment for us??? It sounds like your mother is a very young 85 year old but I think there comes a time in everyone's life when they need to make the best decision for themselves on how much longer they are willing to live with such pain. Enjoying what time is left is sometimes better than fighting when you have no fight left in you.
I will add your mother to my prayer list.

Take Care
Lily

terrippg

sister with stage IV Gallbladder Cancer
Hello Lily
It is soooo good to hear a survivor story about stage 4 gallbladder cancer! My 39 year old sister had her gallbladder removed in Febuary 2011 and found out it had a cancerous tumor in it. No symptoms except 3 weeks of diarrhea. They screwed up during surgery and puntured a blie duct. She went into septic shock 3 days afterward. Because of that mistake, bile filled her insides and spread the cancer all over the place. Both ovaries, uterus, small bile, omentum. . . They had to postpone chemo for the inital gallbladder cancer because of that mistake...when it was only stage one. She had a liver resection because they found lesions, but no cancer there. The oncologist said not to even bother to treat her with Chemo that it would only extend her life by a couple weeks!! They gave her less than 2 months to live. We(the family) didn't like his answer, so we consulted with another oncologist and her liver doctor who insisted they try chemo. She is now on her second round of Gemzar/Cisplatin and three ct scans can't find anymore cancer. She too is going to have surgery to remove her uterus, omentum and some small bile in a couple months. Her oncologist told us today that "there is no remission for stage 4 gallbladder cancer and that she would have to have this chemo regimn the rest of her life" Did i mention i can't stand her oncologist! Sooo..I was just wondering, how did they determine you were in complete remission and were you able to stop getting chemo all together? I know there are other surviors out there, so it drives me crazy when they say there is no hope!
We will never give up fighting and praying! She has 2 small children . . .she needs to win this fight! She has already overcome septic shock twice and 15-20 serious infections and her bile leak is still not fixed and she has a permenant outside drain because of it...but she keeps fighting. Any information you could provide would be greatly appreciated!

westie66

terrippg said:

sister with stage IV Gallbladder Cancer
Hello Lily
It is soooo good to hear a survivor story about stage 4 gallbladder cancer! My 39 year old sister had her gallbladder removed in Febuary 2011 and found out it had a cancerous tumor in it. No symptoms except 3 weeks of diarrhea. They screwed up during surgery and puntured a blie duct. She went into septic shock 3 days afterward. Because of that mistake, bile filled her insides and spread the cancer all over the place. Both ovaries, uterus, small bile, omentum. . . They had to postpone chemo for the inital gallbladder cancer because of that mistake...when it was only stage one. She had a liver resection because they found lesions, but no cancer there. The oncologist said not to even bother to treat her with Chemo that it would only extend her life by a couple weeks!! They gave her less than 2 months to live. We(the family) didn't like his answer, so we consulted with another oncologist and her liver doctor who insisted they try chemo. She is now on her second round of Gemzar/Cisplatin and three ct scans can't find anymore cancer. She too is going to have surgery to remove her uterus, omentum and some small bile in a couple months. Her oncologist told us today that "there is no remission for stage 4 gallbladder cancer and that she would have to have this chemo regimn the rest of her life" Did i mention i can't stand her oncologist! Sooo..I was just wondering, how did they determine you were in complete remission and were you able to stop getting chemo all together? I know there are other surviors out there, so it drives me crazy when they say there is no hope!
We will never give up fighting and praying! She has 2 small children . . .she needs to win this fight! She has already overcome septic shock twice and 15-20 serious infections and her bile leak is still not fixed and she has a permenant outside drain because of it...but she keeps fighting. Any information you could provide would be greatly appreciated!

Stage IV Gallbladder Cancer
HI Terrippg: I, too, was diagnosed with Stage IV gallbladder cancer in Oct 2009. I had surgery to remove the gallbladder in April 2010. My surgery as well went wrong - it was done laparoscopically which removed the gallbladder, its tumour, and part of the liver where the tumour had entered. Done as day surgery! I got a very severe infection and they thought that the bile duct had been nicked during the surgery. I ended up having more surgery the next day (almost died) but luckily the bile duct was OK - a blood vessel had been cut by accident. I was in intensive care for 10 days. I couldn't start chemotherapy for 4 months because I had to wait for the incision to heal. I did 6 months on cisplatin/gemcitibine which resulted in no other signs of cancer anywhere except for 6 nodules on the peritoneum. I have been having more chemo (oxaliplatin/irenotecan/5FU) since March 2011 and this regime has reduced the size of some of the nodules, there are no new ones, and none have increased in size. My oncologist is ecstatic! The point of all this - tell your sister never to give up. She is far younger than I am (I'm 68)and sounds like a fighter. The stats for this cancer are not good but most of the stats are old. New treatments are available. My thoughts are with her.
Cheryl

Lily50

terrippg said:

sister with stage IV Gallbladder Cancer
Hello Lily
It is soooo good to hear a survivor story about stage 4 gallbladder cancer! My 39 year old sister had her gallbladder removed in Febuary 2011 and found out it had a cancerous tumor in it. No symptoms except 3 weeks of diarrhea. They screwed up during surgery and puntured a blie duct. She went into septic shock 3 days afterward. Because of that mistake, bile filled her insides and spread the cancer all over the place. Both ovaries, uterus, small bile, omentum. . . They had to postpone chemo for the inital gallbladder cancer because of that mistake...when it was only stage one. She had a liver resection because they found lesions, but no cancer there. The oncologist said not to even bother to treat her with Chemo that it would only extend her life by a couple weeks!! They gave her less than 2 months to live. We(the family) didn't like his answer, so we consulted with another oncologist and her liver doctor who insisted they try chemo. She is now on her second round of Gemzar/Cisplatin and three ct scans can't find anymore cancer. She too is going to have surgery to remove her uterus, omentum and some small bile in a couple months. Her oncologist told us today that "there is no remission for stage 4 gallbladder cancer and that she would have to have this chemo regimn the rest of her life" Did i mention i can't stand her oncologist! Sooo..I was just wondering, how did they determine you were in complete remission and were you able to stop getting chemo all together? I know there are other surviors out there, so it drives me crazy when they say there is no hope!
We will never give up fighting and praying! She has 2 small children . . .she needs to win this fight! She has already overcome septic shock twice and 15-20 serious infections and her bile leak is still not fixed and she has a permenant outside drain because of it...but she keeps fighting. Any information you could provide would be greatly appreciated!

Terrippg's Sister
Hi Terri,

Nice to meet you! I'm so sorry that this ugly disease has come into your sister and your lives. But I'm so glad that you found us. Yes, there are survivors out there but most doctors aren't aware of us. Your sister is so young and is the youngest person that I know of to get this terrible disease. I was 46 at time of my diagnosis (2005) and my age plus good health was very beneficial to my treatment. Sounds like your sister has had enough mistakes made so far that she has to be a very strong person. As Cheryl stated mistakes do happen but all you can do is keep going. I too heard the words, 2 weeks, 2 months, or 2 years who knows. I was inoperable. My chemo cocktail was Gemzar/Cisplatin also. That wasn't acceptable to me and I embarked on toughest journey of my life. That statement may be true according to the statistics. My oncologist and primary doctor never say I am in remission they just state that the farther I get out from the initial diagnosis the better off I will be. After 11 months of chemo and then surgery I had to have another 3 months of chemo because I still had cancer cells in some of the lymph nodes that were removed, my oncologists stated that it was precautionary, just in case some of the cancer cells were still lurking around. My chemo was completed in 2007 and up until this past year I saw my oncologist monthly and had scans every 3 months. I currently see my oncologist every 9 weeks now and have scans every six months. He keeps a very close eye on me and I'm thankful for that. We will catch anything that comes up and deal with it at that time. It is a reality that you have to deal with but you can't dwell on it. Hope and Faith will carry you through. I know the strength that a mother can have to survive for her children. I did it for my daughter. She can do it too. I will add her to my prayer list. Where is she located? Sometimes I am able to connect people with others in their area. Ask us any questions that you might have. We will try to help in any way that we can.

Take Care
Lily

Susanhghtn

westie66 said:

Stage IV Gallbladder Cancer
HI Terrippg: I, too, was diagnosed with Stage IV gallbladder cancer in Oct 2009. I had surgery to remove the gallbladder in April 2010. My surgery as well went wrong - it was done laparoscopically which removed the gallbladder, its tumour, and part of the liver where the tumour had entered. Done as day surgery! I got a very severe infection and they thought that the bile duct had been nicked during the surgery. I ended up having more surgery the next day (almost died) but luckily the bile duct was OK - a blood vessel had been cut by accident. I was in intensive care for 10 days. I couldn't start chemotherapy for 4 months because I had to wait for the incision to heal. I did 6 months on cisplatin/gemcitibine which resulted in no other signs of cancer anywhere except for 6 nodules on the peritoneum. I have been having more chemo (oxaliplatin/irenotecan/5FU) since March 2011 and this regime has reduced the size of some of the nodules, there are no new ones, and none have increased in size. My oncologist is ecstatic! The point of all this - tell your sister never to give up. She is far younger than I am (I'm 68)and sounds like a fighter. The stats for this cancer are not good but most of the stats are old. New treatments are available. My thoughts are with her.
Cheryl

Large Mass found on my daughter's gallbladder
Hi Cheryl. I am trying to find out more information about gallbladder tumours and what can be done about them. My daughter who is 32 had an ultrasound done which showed a large mass on her gallbladder. The only symptom she had which prompted the ultrasound was a sensation of something in her throat when she swallowed. Her doctor has put in a referral to a surgeon, which she was told would take a few weeks before she'll get to see one. She also lives in Ontario. Is there any way of speeding up the process that you know of? I am worried sick, and we have to wait so long for answers. You would think they would be jumping on this in case it is cancer. I sure would appreciate any suggestions you might have since I can see you have dealt with the health care system in Ontario for a while now.

Sincerely,
Susan

maudsie

Lauren21 said:

Thank you Lily
Lily,

I will definitely email. Thanks for your response.

The trip to MD Anderson was okay. They recommended Gem/Cis but also want to put her on Tarceva which is approved for pancreatic cancer and is only in early phase studies for gall bladder cancer. We are working on trying to get it at a reduced price since it is so expensive and her insurance won't pay for it since its not approved for GB cancer.

She's had problems with the stint in her bile duct and then developed a kidney infection, so we have not started treatment yet. I'm getting a little antsy to get started.

Thanks again . . .

Lauren

Maudsie here
Hello Lily, hello Lauren, hello all!
Sorry, I have not been on this board for a month or so. So I am trying to catch up! Lauren, I am the person in North Carolina with GBC, and was diagnosed in July of 2008. I was 61. I had my gallbladder and a big wedge of liver removed, and no cancer has been found anywhere else. I had the usual chemo and radiation. So I was luckier than many in that mine was caught pretty early.
YES there ARE survivors out there! I also would be happy to talk with your mother (or you, of course) if she would like. You can email me at iriemilly@hotmail.com for that or any other reason.
Wishing you the best --
Maudsie

maudsie

jane0411 said:

Mom's GB Cancer unique palliative question
Hi all,
I just found this discussion board today! We are new to GB cancer; my Mom is 85 and was diagnosed in mid-April with Stage 4. It has invaded the liver and some local lymph nodes. She had 7 infusions of Gemzar since June to no avail. The CT scan on July 23 showed the tumor had grown about 1-inch all around. The good news is that there are no other tumors found (on the scan)and the rest of her bloodwork is very good. All other organs are also functioning well. We are at the GI Cancer Center at Mass Gnl in Boston.
She has lost alot of weight and has pains in her stomach area (we are pretty sure from gas build up) and lower back pain--both of which make her day to day life rotten. Her entire active life has changed and she only goes out of the house to Dr appts.

Her GB Cancer is too advanced for surgery. The other alternative of 5 FU infusuion has only a 20% chance of helping her (and Gemzar was so debilitating that we don't think another chemo is worth it).

The doctors said the most relief of pain would come from radiation to the tumor, but BIG BUT, they would need to do laparascopic surgery to insert "spacers" to push the intestines out of the way so they'd have a clear shot for the radiation. (It was explained that her particular anatomy would require this.) The radiation would be 5 days in a row after recovery fr the laparascopy. I've talked with an operating room nurse I know who never heard of such a thing. She consulted w/oncologists fr her hospital in NYC who also never heard of such an operation.
So, I'm wondering if any of you are familiar with any of this? Also, laparascopy on an 85yr-old? Radiation and its SFX on someone that age?

Thank you all for your honest sharing of your stories. It has helped enormously in getting perspective on this awful, disease.

Jane

Hi Jane
Hello Jane. I am sorry, I'm a bit late jumping in here, Lily mentioned me in her response to your situation and your question about internally placed "spacers" to protect other nearby organs from radiation, that I might know something about it. Well, I don't. It's an interesting question to Google. Just speaking off the top of my head, this seems reasonable. It is, after all, important to protect healthy tissue from the radiation. And if that tissue is in the way, there is a danger that the radiation could harm it and render it dysfunctional. Before I started my radiation on the gallbladder area, my doctors performed a complicated kidney function test: one of my kidneys was going to be in the line of fire from the radiation, and if it were harmed, they wanted to make sure that my other kidney was in good shape so it could do the work if the other one ever failed me. As it turns out, after radiation, so far both kidneys are working OK. But these things are important to check out. Still, I would want to avoid the spacer surgery if there were any other way to do what needs to be done. It would be just one more thing your mom would need recovery from, and she is already dealing with a lot. However, one does what one's gotta do to fight this. This battle is not for sissies, that's for sure.
I wish you and your mom all the best.
Maudsie

westie66

Susanhghtn said:

Large Mass found on my daughter's gallbladder
Hi Cheryl. I am trying to find out more information about gallbladder tumours and what can be done about them. My daughter who is 32 had an ultrasound done which showed a large mass on her gallbladder. The only symptom she had which prompted the ultrasound was a sensation of something in her throat when she swallowed. Her doctor has put in a referral to a surgeon, which she was told would take a few weeks before she'll get to see one. She also lives in Ontario. Is there any way of speeding up the process that you know of? I am worried sick, and we have to wait so long for answers. You would think they would be jumping on this in case it is cancer. I sure would appreciate any suggestions you might have since I can see you have dealt with the health care system in Ontario for a while now.

Sincerely,
Susan

Gallbladder Cancer
Hi Susan: I am so sorry to "meet" you on this website and discussion board. Your daughter is very young for this cancer but it doesn't pick and choose. A gallbladder cancer friend in Saskatchewan went through this and he was only 38 at the time. He is OK now but he fought hard. Anyways, your daughter's story is similar to mine - no symptoms really to speak of although I knew I had gallstones. My doctor sent me for an ultrasound because of elevated liver enzymes (what about her blood tests? there are tumour markers that can be done like CA19 and CEA but the doctors here in Ontario don't like to request them). The ultrasound of my gallbladder showed a shadowey mass projecting from the gallbladder on the right side to the liver. That was Oct 2009. I saw a gallbladder surgeon pretty quickly (but I should have been more knowledgeable) and was booked in for surgery in February 2010 but I put it off until April as I'm a professor and didn't want to leave my students in mid-term. Sure enough, it was a tumour so he removed the gallbladder, the tumour, and part of the liver where the tumour had penetrated. The rest of my story is above. Laparoscopic day surgery is NOT the way to go - an open incision is required.
So, let's stop here. Your daughter has had the ulrasound and something is there, but it could be a cyst. There are strict protocols for gallbladder cancer surgery that no one here seems to know about. I live in London, ON which has a pretty reputable medical reputation (lots of research, lots of hospital, big cancer centre) but even so gallbladder cancer is so rare and hasn't had good outcomes that maybe the protocols aren't well known. Lily can describe her extensive surgery which is how mine should have been done but I didn't know any better. I do have a copy of the protocol for this surgery in Alberta. The key here is to work fast - get the best gastro-intestinal surgeon/specialist you can, preferably one who works on gallbladders. I know of a very good one in Toronto who is doing cutting edge research and surgery. Your daughter is young and strong - they will fight for her for sure. Let me know soonest. So, she must move quickly - if the tumour is too big for surgery, they will want to reduce it with chemotherapy. Gallbladder cancers don't have a good record there either but the regime I did first (cisplatin/gemcitibine) is standard and the one I'm on now (oxaliplatin-irenotecan-5FU) is becoming more common and can shrink the tumour. Luckily mine was small and they cut it out. But a lot more should have been looked at and cut out like adjacent organs - gallbladder cancers seed out with no symptoms. They should examine the liver and the bile duct with a CT and the peritoneum where the seeds can land and the cancer metaticizes (my problem). An ultrasound can't see that. I have cysts on my liver and kidneys but they are mostly harmless.
So, I guess what I'm saying here is - things need to move fast. Find out what needs to be done (the Mayo Clinic has a pretty good website - that's where my friend from SK went for his surgery as Saskatchewan surgeons wrote him off). Do not be disheartened as it can be successful but it will take fighting for anyone to pay attention. Ontario's hospitals are crowded and the surgeons/specialists busy as there aren't enough of them even though they are very good and some world famous. If I had done my homework earlier, I'd be a lot further ahead.
Please email me through the csn system and I can send more information.
Cheryl

robynlaurie80

Lily50 said:

Terrippg's Sister
Hi Terri,

Nice to meet you! I'm so sorry that this ugly disease has come into your sister and your lives. But I'm so glad that you found us. Yes, there are survivors out there but most doctors aren't aware of us. Your sister is so young and is the youngest person that I know of to get this terrible disease. I was 46 at time of my diagnosis (2005) and my age plus good health was very beneficial to my treatment. Sounds like your sister has had enough mistakes made so far that she has to be a very strong person. As Cheryl stated mistakes do happen but all you can do is keep going. I too heard the words, 2 weeks, 2 months, or 2 years who knows. I was inoperable. My chemo cocktail was Gemzar/Cisplatin also. That wasn't acceptable to me and I embarked on toughest journey of my life. That statement may be true according to the statistics. My oncologist and primary doctor never say I am in remission they just state that the farther I get out from the initial diagnosis the better off I will be. After 11 months of chemo and then surgery I had to have another 3 months of chemo because I still had cancer cells in some of the lymph nodes that were removed, my oncologists stated that it was precautionary, just in case some of the cancer cells were still lurking around. My chemo was completed in 2007 and up until this past year I saw my oncologist monthly and had scans every 3 months. I currently see my oncologist every 9 weeks now and have scans every six months. He keeps a very close eye on me and I'm thankful for that. We will catch anything that comes up and deal with it at that time. It is a reality that you have to deal with but you can't dwell on it. Hope and Faith will carry you through. I know the strength that a mother can have to survive for her children. I did it for my daughter. She can do it too. I will add her to my prayer list. Where is she located? Sometimes I am able to connect people with others in their area. Ask us any questions that you might have. We will try to help in any way that we can.

Take Care
Lily

Gallbladder Cancer
Hello Lily50 Iam back but was unsure how to get in touch so I connected via someone else's story ,forgive me.
Iam 66 and live in Australia,in March this year I went in to have my Gallbladder out my Dr. decided he didn't like what he saw so decided to send me to Brisbane to a Professor who is well regarded here in Queensland. This Dr. operated but closed me up straight away and I was sent home to my home town to have Chemo ( genz/cis) I don't need to tell you about that first month of grieving,it seems everyone goes through it. Oh and I had a stent put in so the food was awful but I am eating much better now thank goodness.
I have has 6 lots of chemo (2weeks on and 1 week off) I was sick the first few weeks but suddenly it all came good and I started to feel more normal and put on some weight . My first scan showed that the tumours has regressed and life was much happier . ON Monday this week I have to have another scan and I know this will be a happy outcome I am very positive and will not let a negative feeling enter my body . Each time I come out from my chemo I feel my tummy and say "Go you good stuff and kill those Nasties" My Daughter thinks I'm crazy but it helps me cope positivly . I am so glad to find you and exchange notes. I will let you know how I go on Monday Lily.
Take care
Rob

Lily50

robynlaurie80 said:

Gallbladder Cancer
Hello Lily50 Iam back but was unsure how to get in touch so I connected via someone else's story ,forgive me.
Iam 66 and live in Australia,in March this year I went in to have my Gallbladder out my Dr. decided he didn't like what he saw so decided to send me to Brisbane to a Professor who is well regarded here in Queensland. This Dr. operated but closed me up straight away and I was sent home to my home town to have Chemo ( genz/cis) I don't need to tell you about that first month of grieving,it seems everyone goes through it. Oh and I had a stent put in so the food was awful but I am eating much better now thank goodness.
I have has 6 lots of chemo (2weeks on and 1 week off) I was sick the first few weeks but suddenly it all came good and I started to feel more normal and put on some weight . My first scan showed that the tumours has regressed and life was much happier . ON Monday this week I have to have another scan and I know this will be a happy outcome I am very positive and will not let a negative feeling enter my body . Each time I come out from my chemo I feel my tummy and say "Go you good stuff and kill those Nasties" My Daughter thinks I'm crazy but it helps me cope positivly . I am so glad to find you and exchange notes. I will let you know how I go on Monday Lily.
Take care
Rob

Rob's Gallbladder Cancer
Hi Rob,

Good to hear from you again! Sometimes people don't respond when they are trying to adjust to the treatment schedule and trying to deal with this disease. Don't apologize for adding a post at the end, it was really easy to find. You might want to post to the Gallbladder Cancer - 2011 discussion thread as it is more current, smaller in size and will load quicker.

Sometimes that happens when the surgeon goes in and gets more than they expected. Yes, it is so devastating to have all your hopes pinned on surgery and then when you wake up you find out nothing has been done and this cancer is still inside your body.

I think in the beginning chemo is harder because it is foreign to your body and you are not emotionally capable of handling it at this time. There are so many doubts and whatif's that has your mind preoccupied. But it is something that has to be done and then you move into the fight mode. I'm so glad that it has gotten easier for you. You begin to know what to expect and what the side effects will be. You also know that not feeling well isn't going to last forever. You might only have one or two days that you may feel like your old self and then it is back to another treatment. When you receive that first scan report and you know that the tumors are regressing is the best feeling in the world. Makes you able to go to the next treatment with the feeling that you are killing off those cancer cells and it will get better. You have to stay positive as it will just help you on your journey.
I love that you are telling the cancer cells to go and take a hike. You are in control!
You need to do whatever makes you feel better and the heck with what others think. Laughter is the best medicine. You probably haven't received Monday's report yet but I hope that you will be receiving good news. Let me know!

Take Care
Lily

Monarch

Mom - Stage 2
Hi gang,

I've been reading and rereading this and the other gbc thread since my mom was diagnosed with Stage 2 gbc in May. I've taken so much strength and courage from all of your posts. (Lily - you have given me hope throughout this process. Thank you!!!)

Mom went in for gallbladder surgery and when the stitches came out, we got the surprise of our lives. The follow-up CT scan showed a couple "questionable" areas. The PET scan returned with no hot spots. On June 3, she had a liver resection, several lymph nodes removed, the portal sites from her gallbladder surgery "cored", and since the gallbladder came out through her belly button, she had a large area around the belly button removed and a new belly button created. (She's so proud of her new belly button!) She got a clear pathology report from all of the removed tissues.

She's completed a course of continous infusion 5FU and 5 weeks of radiation.

Today, we got the results from her first post-treatment CT scan. The radiologist who read the scans reported an area along the edge of the liver where the resection occured with a note that it indicated "disease recurrance". The oncologist says he doesn't believe it. The labs are all excellent. There are no other indications of any cancer anywhere else. Her cancer markers are very low (well within the "normal" range). The area is in direct line with the radiation that just ended less than 4 weeks ago. And, the area is the complete length of the resection. It is not reported as being in the liver - but rather anterior to the liver. He thinks the radiologist's opinion is in error and that there is another explanation for this shadowed area. We will be having a biopsy to prove that within the next couple weeks.

Question...I think I've read a couple folks mentioning a similar CT result post-treatment. Has anyone been told the same thing with good results on follow-up? What was the cause of the shadow on the CT scan - scar tissue, inflamation from the radiation...?

We have been very, very blessed in our journey. I believe the blessings will continue and that the biopsy will be clear. But I would like to hear about your experiences with this. btw - thanks to all on this thread (and the previous one) as you have also been a blessing to me and my parents during this journey.

Monarch

robynlaurie80

Lily50 said:

Rob's Gallbladder Cancer
Hi Rob,

Good to hear from you again! Sometimes people don't respond when they are trying to adjust to the treatment schedule and trying to deal with this disease. Don't apologize for adding a post at the end, it was really easy to find. You might want to post to the Gallbladder Cancer - 2011 discussion thread as it is more current, smaller in size and will load quicker.

Sometimes that happens when the surgeon goes in and gets more than they expected. Yes, it is so devastating to have all your hopes pinned on surgery and then when you wake up you find out nothing has been done and this cancer is still inside your body.

I think in the beginning chemo is harder because it is foreign to your body and you are not emotionally capable of handling it at this time. There are so many doubts and whatif's that has your mind preoccupied. But it is something that has to be done and then you move into the fight mode. I'm so glad that it has gotten easier for you. You begin to know what to expect and what the side effects will be. You also know that not feeling well isn't going to last forever. You might only have one or two days that you may feel like your old self and then it is back to another treatment. When you receive that first scan report and you know that the tumors are regressing is the best feeling in the world. Makes you able to go to the next treatment with the feeling that you are killing off those cancer cells and it will get better. You have to stay positive as it will just help you on your journey.
I love that you are telling the cancer cells to go and take a hike. You are in control!
You need to do whatever makes you feel better and the heck with what others think. Laughter is the best medicine. You probably haven't received Monday's report yet but I hope that you will be receiving good news. Let me know!

Take Care
Lily

Rob's scan
Hi Lily ,had my scan 2 weeks ago and things are much the same as the last scan,which pleases me but they found a nodual on the bottom of my lung which they are keeping an eye on . They say the tumour is the biggest problem . My oncologist is giving me a few weeks off to go on a cruise with my Husband to New Zealand
at Christmas. He wants to make sure I have a blood transfusion before I go. I will keep up with my Chemo when I come back from our 2 week cruise.
I feel the best I've felt for months and even with my stent ( which is a steel one ) I am having no problems with my digestion which is a wonderful feeling.
I only hope this goes on and on. I got so depressed with eating mashed up foods ,thinking I would never get to eat normal foods again and now I can.
I told my Dr's that I have met you and how you are still going after 6 years and they look at me with wonder,I sometime think they don't know about these forums and they don't know what is going on in other countries. My Professor who is a Liver Surgeon told me he would operate and take 20% of my Liver out with the Gallbladder if I responded well to the Chemo so I guess he is just waiting to see how I go ,so let's hope it comes out. I have good feeling about this man
Thanks for being there for me Lily Rob

lirok

Monarch said:

Mom - Stage 2
Hi gang,

I've been reading and rereading this and the other gbc thread since my mom was diagnosed with Stage 2 gbc in May. I've taken so much strength and courage from all of your posts. (Lily - you have given me hope throughout this process. Thank you!!!)

Mom went in for gallbladder surgery and when the stitches came out, we got the surprise of our lives. The follow-up CT scan showed a couple "questionable" areas. The PET scan returned with no hot spots. On June 3, she had a liver resection, several lymph nodes removed, the portal sites from her gallbladder surgery "cored", and since the gallbladder came out through her belly button, she had a large area around the belly button removed and a new belly button created. (She's so proud of her new belly button!) She got a clear pathology report from all of the removed tissues.

She's completed a course of continous infusion 5FU and 5 weeks of radiation.

Today, we got the results from her first post-treatment CT scan. The radiologist who read the scans reported an area along the edge of the liver where the resection occured with a note that it indicated "disease recurrance". The oncologist says he doesn't believe it. The labs are all excellent. There are no other indications of any cancer anywhere else. Her cancer markers are very low (well within the "normal" range). The area is in direct line with the radiation that just ended less than 4 weeks ago. And, the area is the complete length of the resection. It is not reported as being in the liver - but rather anterior to the liver. He thinks the radiologist's opinion is in error and that there is another explanation for this shadowed area. We will be having a biopsy to prove that within the next couple weeks.

Question...I think I've read a couple folks mentioning a similar CT result post-treatment. Has anyone been told the same thing with good results on follow-up? What was the cause of the shadow on the CT scan - scar tissue, inflamation from the radiation...?

We have been very, very blessed in our journey. I believe the blessings will continue and that the biopsy will be clear. But I would like to hear about your experiences with this. btw - thanks to all on this thread (and the previous one) as you have also been a blessing to me and my parents during this journey.

Monarch

Wow
Hello all. I want to thank Monarch for supplying me the link to this discussion board. Geez, I thought I was alone with this rare illness but to read all of these posts and hear that all of us are going through I realize that is far from the truth.

In short, I was diagnosed in Jan of 2011 with GBC Stage 4. I had a severe case of jaundice and my neighbor who is a nurse took me to the emergency room. They discovered a tumor on the back of the GB that had spread to the liver and completely blocked my bile ducts. I was sent to Memorial Sloan Kettering here in NY and they performed surgery immediately. They removed the GB, resectioned the liver (40%) and then had to reconstruct bile ducts with tissue from my large intestine. Things went well but I developed some complications. The bile ducts closed and I had to have stents placed in each one to keep them open. Then I developed blood clots and was placed on 2 shots of Lovenox daily. Then I developed a blood infection and was placed in isolation. I was hospitalized for about 4 weeks total.

In April I started the first of 6 cycles of chemo (cisplatin and gemcitabene). This ran through August. A scan was taken after chemo and the results were outstanding. I started radiation in September and just finished 2 weeks ago. They used a method called IGRT (Image Guided Radiation Therapy) that is supposed to reduce the damage to healthy tissue. During radiation my oncologist suggested we continue with a twice weekly dose of gemcitabene as we were getting great results. Side effects from chemo were minimal (slight case of constipation) outside of fatigue. Radiation was a different story. I had problems with nausea and stomach pain the last 2 weeks of the 28 sessions.

I will have my after treatment scan right before Thanksgiving to see the final result. Hopefully I will get some good results. My best wishes to everyone in this discussion for success and health in their battle. I try to stay on an even keel but not getting too high or too low. Its difficult but forums like this certainly help.

Monarch, the best to your Mom. I am positive she will be fine and thanks again.

Rocky

lirok

maudsie said:

Hi Susan
Hi Susan......oh I am always sorry to see a new person here! On the other hand, welcome! The good news is that you are relatively young and otherwise healthy. ...that will be in your favor as you go along. Also your chemo combo is a great one, and seems to be the one most used these days. The CA19-9 is the right cancer marker to follow, also. There are others, like the CEA, but the CA19-9 is most appropriate for GBC. Understand, however, that the CA19-9 is not really an accurate representation of anything much. Good to follow for general trends, though.
As far as a surgical option.....well, I just don't know. Generally if the cancer has moved from one discreet area (that might be surgically removed) to be more widespread, it would be hard to surgically remove all. Since your cancer is in your stomach lining, here's an option to explore: peritoneal chemoperfusion. A high dose of chemo, much more concentrated than what you would get through an IV, is warmed up and introduced directly into your abdominal cavity via a catheter and allowed to sit there for a while and then it is drained out. Good local exposure to the chemo without the systemic side-effects. This is a newer option and may only be available in limited places and under limited situations. Worth asking about however, don't you think?
Best of luck to you, Maudsie

CA 19-9
When I was diagnosed in Jan. my CA 19-9 was 883. After chemo finished in August, it was at 35. Anything under a 50 is considered normal I was told.

Monarch

lirok said:

Wow
Hello all. I want to thank Monarch for supplying me the link to this discussion board. Geez, I thought I was alone with this rare illness but to read all of these posts and hear that all of us are going through I realize that is far from the truth.

In short, I was diagnosed in Jan of 2011 with GBC Stage 4. I had a severe case of jaundice and my neighbor who is a nurse took me to the emergency room. They discovered a tumor on the back of the GB that had spread to the liver and completely blocked my bile ducts. I was sent to Memorial Sloan Kettering here in NY and they performed surgery immediately. They removed the GB, resectioned the liver (40%) and then had to reconstruct bile ducts with tissue from my large intestine. Things went well but I developed some complications. The bile ducts closed and I had to have stents placed in each one to keep them open. Then I developed blood clots and was placed on 2 shots of Lovenox daily. Then I developed a blood infection and was placed in isolation. I was hospitalized for about 4 weeks total.

In April I started the first of 6 cycles of chemo (cisplatin and gemcitabene). This ran through August. A scan was taken after chemo and the results were outstanding. I started radiation in September and just finished 2 weeks ago. They used a method called IGRT (Image Guided Radiation Therapy) that is supposed to reduce the damage to healthy tissue. During radiation my oncologist suggested we continue with a twice weekly dose of gemcitabene as we were getting great results. Side effects from chemo were minimal (slight case of constipation) outside of fatigue. Radiation was a different story. I had problems with nausea and stomach pain the last 2 weeks of the 28 sessions.

I will have my after treatment scan right before Thanksgiving to see the final result. Hopefully I will get some good results. My best wishes to everyone in this discussion for success and health in their battle. I try to stay on an even keel but not getting too high or too low. Its difficult but forums like this certainly help.

Monarch, the best to your Mom. I am positive she will be fine and thanks again.

Rocky

Glad to see you Rocky!
I'm glad to see you here, Rocky!

Thanks for your thoughts on my Mom. I've read some encouraging research study results this weekend. Mom had ablation with her liver surgery (where they burn the liver to stop the bleeding). This kills the area along the ablation. It seems that radiologists have been interpretting this as a return of cancer. The one study followed 26 people - in all cases, the radiologists said that cancer had returned. Upon further investigation - only one person had a return of the gbc and it wasn't in the area reported by the radiologist. Seems there needs to be a bit more education given to the radiologists. As Mom was only the second person in our hospital system to have the ablation, I'm hoping and praying that that is what the radiologist is reporting. She'll have her biopsy a week from Tues. Results on 11/2.

Best to you (and everyone in this forum) always!

Monarch

westie66

Monarch said:

Glad to see you Rocky!
I'm glad to see you here, Rocky!

Thanks for your thoughts on my Mom. I've read some encouraging research study results this weekend. Mom had ablation with her liver surgery (where they burn the liver to stop the bleeding). This kills the area along the ablation. It seems that radiologists have been interpretting this as a return of cancer. The one study followed 26 people - in all cases, the radiologists said that cancer had returned. Upon further investigation - only one person had a return of the gbc and it wasn't in the area reported by the radiologist. Seems there needs to be a bit more education given to the radiologists. As Mom was only the second person in our hospital system to have the ablation, I'm hoping and praying that that is what the radiologist is reporting. She'll have her biopsy a week from Tues. Results on 11/2.

Best to you (and everyone in this forum) always!

Monarch

Gallbladder Cancer Stage IV
HI and welcome Rocky to the Gallbladder Cancer Forum: I'm a gallbladder cancer survivor so far anyways - diagnosed with Stage IV GB cancer, gallbladder and its tumour and part of the liver removed in April 2010, no evidence of spread to bile ducts but 6 nodules on the peritoneum seeded from the gallbladder tumour, started chemo in August 2010 (cisplatin and gemcitibine) which continued until March 2011. Radiologists misinterpreted MRI scans by saying no evidence of peritoneal cancer but a CT scan in May showed them just as they were in April 2010. Now I'm on chemo again but this time oxaliplatin + irenotecan + 5FU (just finished 10th treatment). Latest MRI showed some shrinkage of nodules and no new growth there or anywhere so stable. The next step? surgery to remove the nodules? Anyways, I have 2 questions. First, I couldn't have radiation because of the resectioning of the liver. I see you had that so wonder if the radiation did any harm? Second, I note that your latest scan was great but not sure what that means - no sign of new disease? Which is great!
Cheryl

Monarch

westie66 said:

Gallbladder Cancer Stage IV
HI and welcome Rocky to the Gallbladder Cancer Forum: I'm a gallbladder cancer survivor so far anyways - diagnosed with Stage IV GB cancer, gallbladder and its tumour and part of the liver removed in April 2010, no evidence of spread to bile ducts but 6 nodules on the peritoneum seeded from the gallbladder tumour, started chemo in August 2010 (cisplatin and gemcitibine) which continued until March 2011. Radiologists misinterpreted MRI scans by saying no evidence of peritoneal cancer but a CT scan in May showed them just as they were in April 2010. Now I'm on chemo again but this time oxaliplatin + irenotecan + 5FU (just finished 10th treatment). Latest MRI showed some shrinkage of nodules and no new growth there or anywhere so stable. The next step? surgery to remove the nodules? Anyways, I have 2 questions. First, I couldn't have radiation because of the resectioning of the liver. I see you had that so wonder if the radiation did any harm? Second, I note that your latest scan was great but not sure what that means - no sign of new disease? Which is great!
Cheryl

What reason did they give
What reason did they give you for not being able to have the radiation after resection, Cheryl? I don't think I've every read about or heard of that. My mom has radiation after resection. I'm sure I've read other accounts of radiation after resection on the boards. Hmmm.

Monarch

lirok

westie66 said:

Gallbladder Cancer Stage IV
HI and welcome Rocky to the Gallbladder Cancer Forum: I'm a gallbladder cancer survivor so far anyways - diagnosed with Stage IV GB cancer, gallbladder and its tumour and part of the liver removed in April 2010, no evidence of spread to bile ducts but 6 nodules on the peritoneum seeded from the gallbladder tumour, started chemo in August 2010 (cisplatin and gemcitibine) which continued until March 2011. Radiologists misinterpreted MRI scans by saying no evidence of peritoneal cancer but a CT scan in May showed them just as they were in April 2010. Now I'm on chemo again but this time oxaliplatin + irenotecan + 5FU (just finished 10th treatment). Latest MRI showed some shrinkage of nodules and no new growth there or anywhere so stable. The next step? surgery to remove the nodules? Anyways, I have 2 questions. First, I couldn't have radiation because of the resectioning of the liver. I see you had that so wonder if the radiation did any harm? Second, I note that your latest scan was great but not sure what that means - no sign of new disease? Which is great!
Cheryl

Gallbladder Cancer Stage IV
I had the resection in Feb. and the radiation in Sept. By that time the liver had fully grown back and was normal. My last scan showed no new signs of anything and reductions in all of the lymph nodes that are affected. Their plan was that the radiation would kill whatever was left after chemo. That we'll find out after my next scan in early November. So far everything they have done has worked. I have some gastro issues with my stomach but as I have read here I think it has more to do with diet and lack of a gallbladder to break down the fats. Its a work in progress. First, I want them to be able to tell me I am in remission (which I have not heard as of yet) after this next scan. Then we go into maintenance mode of proper diet and follow up visits.

maudsie

Monarch said:

Mom - Stage 2
Hi gang,

I've been reading and rereading this and the other gbc thread since my mom was diagnosed with Stage 2 gbc in May. I've taken so much strength and courage from all of your posts. (Lily - you have given me hope throughout this process. Thank you!!!)

Mom went in for gallbladder surgery and when the stitches came out, we got the surprise of our lives. The follow-up CT scan showed a couple "questionable" areas. The PET scan returned with no hot spots. On June 3, she had a liver resection, several lymph nodes removed, the portal sites from her gallbladder surgery "cored", and since the gallbladder came out through her belly button, she had a large area around the belly button removed and a new belly button created. (She's so proud of her new belly button!) She got a clear pathology report from all of the removed tissues.

She's completed a course of continous infusion 5FU and 5 weeks of radiation.

Today, we got the results from her first post-treatment CT scan. The radiologist who read the scans reported an area along the edge of the liver where the resection occured with a note that it indicated "disease recurrance". The oncologist says he doesn't believe it. The labs are all excellent. There are no other indications of any cancer anywhere else. Her cancer markers are very low (well within the "normal" range). The area is in direct line with the radiation that just ended less than 4 weeks ago. And, the area is the complete length of the resection. It is not reported as being in the liver - but rather anterior to the liver. He thinks the radiologist's opinion is in error and that there is another explanation for this shadowed area. We will be having a biopsy to prove that within the next couple weeks.

Question...I think I've read a couple folks mentioning a similar CT result post-treatment. Has anyone been told the same thing with good results on follow-up? What was the cause of the shadow on the CT scan - scar tissue, inflamation from the radiation...?

We have been very, very blessed in our journey. I believe the blessings will continue and that the biopsy will be clear. But I would like to hear about your experiences with this. btw - thanks to all on this thread (and the previous one) as you have also been a blessing to me and my parents during this journey.

Monarch

Monarch's question
Hello -- I have Stage II GBC -- and after resection and chemo and radiation and all that -- I initially also got back results that sound like your Mom's -- they didn't actually say "recurrance" but they DID say something like "possible recurrance" vs. residual inflammation (not exact quotes) -- I was of course worried but my oncologist assured me that this was almost CERTAINLY just inflammation that was being picked up on the scan, due to all the radiation and surgery in that exact area. And....turns out....he was correct: after total healing, that cloudy area is GONE. That is not to say that the area doesn't bear close monitoring, of course it does.
In your mother's case, since the questionable area is right along the liver margin that was cut away, I would want to know more about the area that WAS cut away during the resection: was cancer found there, at all, on the liver? If so, were the margins negative? (that is, no cancer cells found on the part of the tissue where the incision was made). This would be important information.