Gallbladder Cancer - 2011

Lily50

Posts: 209
Joined: Aug 2009

Jan 30, 2011 - 7:47 pm

Hello Everybody!
Happy New Year! I know I’m a little late but better late than never.

I have started this new discussion thread because over the last year of posting we have ended up with many different threads going on at the same time. It was hard to keep up with them all. I had many people tell me that they couldn’t find where they originally posted.

Over the course of the last year I have met some wonderful people and I’m so glad that this forum has brought new friends into my life. I’m asking that you all come to this forum and tell us how you are doing, or if you are new tell us a little bit about yourself. There are many success stories out there and with so many people being diagnosed with gallbladder cancer recently we need to show them that there is a way thru this darkness. Give a small profile update (diagnosis, dates, treatments, where you are located, doctors that you love, things that have or have not worked for you etc... Also anything that you might want to share with others. We have lost some very special people in the last year but we always will carry them in our hearts and memories of the many discussions that we have had.

My name is Lily and I am a survivor. My diagnosis was in 2005 as Gallbladder Cancer Stage 4 and I was given a short time frame to live. It is now 2011 and I am so grateful to be here everyday. I had chemo, surgery and more chemo for a year and a half. Recovery was about another year and a half after that and I get better and better every day. I have had no recurrences at this time. I live in Henderson, Nevada (suburb of Las Vegas). I rolled the dice and Lady Luck was on my side. The two most important men that are in my life beside my husband of course is Dr. Russell P. Gollard (Oncologist) and Dr. Howard Reber (Surgeon – UCLA, Jonsson Comprehensive Cancer Center and Pfleger Live Institute). They all saved my life. I believe that you have to treat your body in its entirety (mind, body and spirit), Mediation, yoga, healthy eating and the list goes on. Do whatever makes you feel better.

Ask any of us questions and we will try and help you the best that we can.

Yours was which type of gall cancer ie neuro endocrine variant or the normal one. My father has recently been diagnosed with the neuro endocrine variant (which doctors mention is the best we could have hoped for). The cancer has spread to liver, what the doctors are suggesting is something similar to your case ie first chemo and as tumor responds & shrinks in size, a surgery thereafter. Hoping for the best.

So sorry to hear about your father. I really don't think that I was ever told what type it was. I was just told that it was very aggressive and needed to be treated very aggressively. Yes, your father's treatment plan sounds very similar to mine. Have they determined what chemo cocktail he will be receiving? This is a long hard journey and Hope & Faith will carry you through. I'm praying for your father and family.

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.

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.

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

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!

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

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.

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

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.

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

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!

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

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.

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.

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.

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 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.

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.

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.

Hi Monarch: Don't know except that because the liver covers the gallbladder (which I no longer have) and part of the liver was removed, radiation wasn't an option. Maybe we don't have the equipment here to go in from another direction as someone else reported somewhere on this discussion board. But now I want to know if zapping the 6 nodules I have on the peritoneum (cancerous, at least one was that was cut out) is a possibility rather than surgery.
So, sorry, can't answer your question but I will ask again the next time I see the oncologist (in 2 wks - just had chemo yesterday).
Cheryl

I'm glad to hear your experience with this. My mom is scheduled to have a fine need biopsy on Tuesday. I have mixed feelings about that. I'm glad we'll know definitively, but I don't want to cause any other problems. Her oncologist is very agressive and doesn't sit on anything.

Mom's cancer did not breach the gallbladder. The tumor was classified as a T2 - but the radiation oncologist actually terms it Stage 1. Oncologist stands by Stage 2. At any rate, the PET scans all came back clear. There was a "questionable" lymph node along the vena cava on the CT scan but nothing else. The surgeon is a master of his craft. He was able to get the lymph node and surrounding area. As a precaution, the did the liver resection (using ablation to seal the liver...which I believe is actually what the radiologist is commenting about in his report), took several lymph nodes (I believe it was 18 or 19), and all of the portal areas used in the initial gallbladder surgery. ALL pathology reports came back clear. All tissues and margins were negative. Even the lymph node and surrounding tissue from near the vena cava. There was no cancer found anywhere outside the gallbladder.

Hello to everyone who has been posting on this site. I started reading the posts in June of this year and it has given me great encouragement, as I was shocked to find out I had gallbladder cancer in March 2011. Gallbladder cancer is so rare, and the more I read the articles (so many based on old statistics), the more discouraged I got. Reading these posts helps me to know there are survivors out there!

I had a laproscopic cholecystectomy after having an abnormal ultrasound and CT scan. (I thought I had gallstones, but the scans showed “thickened gallbladder wall”, and “could not rule out carcinoma”). After seeing a surgeon, he reassured me that it was highly unlikely given how rare this was. However after my surgery, he called to say the path report showed a “well differentiated adenocarcinoma- a T2), with isolated tumor cells in a nearby lymph node. The tumor had not grown through the gallbladder wall. This seemed to originate from a polyp! I couldn’t believe it. He thought there were signs that it was early disease, but sent me to the local university hospital for a second surgery. The specialists pretty much told me that it is usually found late except for maybe 10% of cases, and they were not as encouraging. I had the second surgery that included a liver resection and removal of 10 lymph nodes. All tissue from the second surgery came back negative for cancer cells. My second surgeon still recommended adjunctive chemotherapy, but did not recommend radiation for me. I have just completed 6 cycles of chemo; cisplatum/gemcitabine. Of course I hated chemo, but was hoping for “no cell left behind”, and got through it. I am just now starting to get my energy back and feeling good.

I will have a follow up CT scan at the end of October, along with blood work to include CEAs and CA 19-9 (the tumor marker blood work has always been within normal limits, although they were not drawn prior to my first surgery. So...... I am hoping for good results, and trying to stay positive. I was 56 when this was diagnosed.

Did any of your doctors say what kind of tumor cells were growing (i.e fast growing or slow growing?). Has anyone been told of any gallbladder specific “target therapy” such as seems to be getting studied with other cancers? Even though I have talked to several surgery and oncology specialists (with experience in GI cancers), all seem to have very little personal experience in gallbladder cancers. My family has been very supportive and caring. Friends have been great too, but they don’t always know what to say. Some give me food supplements. For myself, I believe in exercise and healthy eating, but I don’t think I need excessive supplements.

Keeping positive and working on getting my life back. ...........
Jean

Hi, I'm Maudsie, one of the semi-"regulars" here on csn. You do seem to be in the small group of people (hopefully I am included) who caught GBC fairly early. You have undergone all the right stuff, including precautionary measures. Now your job is to sit tight, try not to worry (ha ha) and get your periodic scans and blood tests. To your questions, I have not heard doctors mention "fast" versus "slow" cancer cells with GBC. All GBC is quite aggressive once outside the GB. However, usually early cancers have "well-differentiated" cells which is a positive sign, versus "moderately differentiated" or "poorly differentiated". The other cellular sign in the cell type, is it "adeno-sarcoma" which the vast majority are, or is it "papillary" which is rare but is actually less aggressive I think.
Targeted therapy is a BIG topic among oncologists, and strides have been made in some of the more widely-held cancers, like breast. I don't know what has begun in gene/targeted therapy for GBC. Yuck, probably not much, it's to rare so the money goes where the most people will benefit, I fear. It WILL happen for GBC, and even with conventional methods that we here on this forum are all too familiar with, the statistics are better and better all the time.
Your scan is coming up, and I am sure "scanxiety" is setting in. Try to relax! You have come a long way!
Maudsie

Hi Jean: I am another survivor so far and I have Stage IV gallbladder cancer. My tumour did penetrate the gallbladder wall and into the liver. I had surgery A pril 2010 to remove the gallbladder, its tumour, and part of the liver. Unfortunately the gallbladder tumour had "seeded" to the peritoneum. After 12 treatments of cisplatin/gemcitibine, I am now just finishing 12 treatments of oxaliplatin-irenotecan-5FU which may be stabilizing and even shrinking some of the 6 nodules I have on the peritoneum. What Maudsie says I believe to be correct - once outside the gallbladder, its tumour is more aggressive and that's where the oncologist and GI surgeons start to despair. There has been very little research done on gallbladder cancer (and even peritoneum cancer)because there are so few of us. I can't see why targetted chemo and/or radiation wouldn't work but ... . Anyways, I believe yours was caught in time and you're in good shape! Keep up a positive attitude.
Cheryl

Thank you Cheryl and Maudsie, for your encouragement. It helps to hear other's stories. When I was doing chemo, I never met anyone else with gallbladder cancer. One thing I realized, though, was that I met many people with stage 4 cancers that were told their statistics were bad for survival; but there they were, sometimes many years later doing just fine. Even if they were still in need of chemo, they were getting along well.

I have worked as a nurse for many years, but it still was hard to experience some of these treatments myself, maybe because I knew some of the nasty side effects. Other than my white blood count that kept going down (had to give myself neupogen shots), and of course significant nausea (great antinausea medicines these days even if they cause so much constipation), overall I did ok with the chemo. The main side effect I have now is tingling in my fingers and toes, which is very annoying. I don't know if that will go away; at least I am hoping that it improves.

I did get the results of my CT scan: no signs of cancer. Yeah! Of course I will be followed very closely because scans can not necessarily pick up small cells. They will repeat it in 3 months. By the way Maudsie, I love the term "scaniety". My blood work has returned to normal also. Of the different opinions and specialists that I saw, some did recommend radiation therapy as well. But my surgeon (the second, bigger surgery), did not. I highly respected his opinion as he seemed the most informed. If the tissue samples had showed remaining cancer, he would have recommended it. However, radiation therapy has its issues also, and has not proven to be necessarily curative. I guess we are back to the fact that there is less research in gallbladder specific cancer area, and each case has to be looked at individually.

I will put all of you on this forum on my prayer list. We are not statistics, but individuals with our own treatment; much of it getting better as specialist have more experience! Take care!

Hi Jean: Well, that is very very very good news indeed! I think the stats need to change. I did hear another good news story this morning when I was doing chemo. The oncology nurse told me there was another patient at the cancer centre who had gallbladder cancer; she had the surgery, had the chemo, and now is cancer free and fine after at least 4 years. She had the same chemo regime I had. I love good news stories - keep them coming!
Cheryl

Hi Cheryl and everyone,
I have not posted in a while but wanted to add to the good news stories. I have had no change in my cancer since my original diagnosis. I had my gallbladder removed in early March of this year but the cancer in my bile duct was and remains inoperable. However, it appears to be dormant from the radiation and chemo. My oncologist has another patient who has been doing well for five years now on my chemo regimen. She also has a bile duct stent as I do and cannot have all of her cancer removed surgically. I still hope for enough shrinkage eventually to get surgery but even if that does not happen, we are hopeful that my cancer can be managed long term as a chronic disease. My CT scans show no growth and my blood cancer marker is very close to normal.
I had six weeks of radiation last spring and took daily Xeloda throughout radiation. I then had a month "off" to rest and started Gemzar by infusion with Xeloda orally. My schedule is two weeks on chemo and one week off. I have one Gemzar infusion during those chemo weeks and take daily Xeloda. i have no nausea, vomiting or other bad side effects. I have had problems with low WBC and RBC but take shots for those now. i have needed two transfusions because of very low RBCs but have not missed any chemo sessions.
I feel very lucky to have done as well as I have. I have been able to resume my Pilates classes once a week and do almost anything that I want. i do get tired sometimes but have learned to manage that.
I wish everyone good results and it is wonderful to see that so many of us are doing well with our various treatments.
Betty

First an update...Mom had her biopsy and everything came back clear. As we had suspected, the radiologist was looking at the ablated area of the liver. Better to know than to question though. We got the results we were hoping and praying for.

Mom's tumor was classified as T2,N0,M0. The oncologist staged her at Stage 2. The radiological oncologist stages her at Stage 1. She had a liver resection and several lymph nodes removed. All pathology reports came back clear. She had "insurance" continuous infusion 5FU and radiation.

The oncologist is now asking her to consider a round of Gemzar/Oxaliplatin. I asked about Cisplatin and he said that Oxa was better tolerated. From what I've read though, it seems like Oxa has a lot more side effects - and it says you can't go out in the cold, touch anything cold, eat/drink anything below room temp, etc if you take it. Given that winter is on its way, avoiding the cold will be a significant challenge.

Mom is still trying to decide what to do. No matter what, she won't have any more chemo until January as she needs to recover from the last 7 non-stop months.

If you've had Gem/Cis or Gem/Oxa, what side effects have you experienced? What made things better? What made things worse?

We are confused about how to proceed. The 5FU caused afib and a blood clot. So we're not sure that futher chemo at this time is the thing to do anyway. Of course we'd like to prevent anything that may occur down the road. But I'm wondering if Mom wouldn't be better off waiting and taking the additional chemo if it becomes necessary at a later date. Just not sure what to do... Any thoughts would be appreciated.

Dear all,
My name's Katie and I live in the U.K. My father David, is 69. He was diagnosed with Gallbladder cancer in September. His sister had bowel cancer in the summer and my dad had loose stools for 6 or so weeks so my mum said he should get checked out. He had an investigation with a camera all around his bowel and they found an inflamed area in his transverse colon. After a number of different scans, they confirmed the primary cancer was Gallbladder and that it had spread to his liver and transverse colon. He saw a surgeon in the U.K. through our National Health Service. He is known to take on cases other surgeons won't. He said before my dad walked into his consultation room that he was going to say no to surgery based on his scan that morning. However, on meeting my father he said he would do it as he has no symptoms and is a very physically fit 69 year old. He said he had only preformed this radical surgery once and after recovering from the op for 6 months, the patients cancer came back and sadly he passed away 6 months later. After this information, we all took a weeks break in Cornwall to think about the options, chemo or radical surgery. My father decided to go for the best statistic for survival. The following week my father met with the chemo doctor and he read my father the letter that the surgeon wrote him and
he thought there was a 10% chance of not making it through the op and a 10% chance of success at this stage IV. It was decided that my father will begin chemo a week Tuesday. He will have one day a week for a cycle of I'm not sure how long. I'm so pleased he's having the same chemo cocktail as Lily and some other you other survivors of this rare cancer (Gemzar and Cisplatin). I should have mentioned my dad has squamous gallbladder cancer which is supposed to be really aggresive. So he has rare cancer within a rare cancer...We all have to be positive...it's the only way. We are praying that his tumors reduce to make the operation easier for all.

There is no support mechanism or network like this wonderful one in the U.K. I adore my father and want to give him as much positivity and hope as I can and I feel being in tough with brave people wherever they are in the world that are going through the same ordeal will really help.

I just found this discussion board tonight and have been reading it for more than an hour. As many other newbies have said, this is a tremendous resource. I haven't yet encountered any other people who have gallbladder cancer, and the statistics in medical journal articles and elsewhere are terrifying. It's wonderful to find a place where survivors gather.

I was diagnosed on August 1, 2011, following a laparoscopic gallbladder removal. The cancer had spread to the liver in the form of three tumors, all within a couple of inches of where the gallbladder had been. Although it was fairly limited in scope, it was classified as Stage IV because at least one of the tumors was almost certainly not the result of direct extension. I had surgery at Memorial Sloan-Kettering in New York on August 26 to remove the entire right lobe and part of the left lobe of the liver. The surgeon found nothing in the lymph nodes and got clear margins, but I am having GEMOX chemo because of the likelihood that the cancer has metastasized or has seeded elsewhere. I was thinking of joining a clinical trial at Penn,but a post-op CT scan on October 13 showed no evidence of cancer, so I wasn't eligible. (I have never been so happy to flunk out of anything!!) The treatments are every other week; I've had two of them and am scheduled for the third on Friday. The first one produced almost no side effects, but the second one knocked me sideways for a few days.

Several people have mentioned fatigue and peripheral neuropathy, but has anyone else who's on GEMOX experienced difficulty swallowing, headache, or earache? I'd be interested to know what you did about it and what the oncologists said. My own oncologist told me that the side effects would be cumulative, so I was glad to see that some people on this thread found that they leveled out or even got easier to deal with over time.

Although this isn't the way I'd been planning to spend this autumn, I'm very grateful that the cancer was caught while it was still operable and that I'm able to get good care. Even the chemo, with all its unpleasantness, is well worth it. And special thanks to the people who are responsible for maintaining this discussion board -- I'm delighted to have found it.

First and foremost, I wish you the best in your treatment and your fight against this disease.

It has been recommended that my mom undergo a chemo course with Gem/Ox. She will either have that or Gem/Cis beginning in January. (She has already completed a round of continuous infusion 5FU and radiation.) I've been reading about Ox and it seems there are some harsh side effects from it. I will be interested to read what you experience as you progress through your course of treatment.

I have a question, I have read on several sites that if you are on Ox, you must avoid the cold for 5 days after treatment. It says that you should wear gloves if you are reaching into the fridge or freezer, not to eat or drink anything colder than room temp, and to always wear a hat/scarf/gloves, etc when out and about. Are you doing this?

If you have any advice/suggestions for my mom based on your experiece so far, I'd love to hear them.

Well, after 6 weeks of rest I traveled back to Sloan Kettering this morning for my CT scan. This is my post radiation baseline scan to see how well the 28 treatments did. I suffered a severe case of "scanxiety" all week long and now I don't see my oncologist for 11 days so I will be on pins and needles. I am slowly getting my strength back along with my wits. I feel less and less like I am in a fog. Everything I was told about the radiation side effects was right on the money including the recuperative period. It takes alot of time and patience.

Hi, Rocky! I've been thinking about you and am glad to hear that your scan is complete. I'm counting on you getting excellent results when you see the oncologist. Like you've said, you and my mom are going to beat this monster. Remember that!

I've thought about you a lot recently. I've been doing some new research on the internet trying to get Mom all the info I can about the next chemo protocol she is going to have starting in January (the doc insists it will be further insurance...so we are going to invent in it!). I've been really - I mean REALLY - impressed with all I've read about Sloan Kettering. You are in excellent, excellent hands.

Hang in there and know my family's thoughts and prayers are with you. Let us know when you get the good news in 11 days!

I truly appreciate your thoughts and prayers. I send them right back your mom's way. You're right, the both of us are going to send this "thing" packing. Its funny but although I don't normally like seeing a doctor, whenever I walk through the doors of Sloan I somehow feel safe. I know that the chemo treatment your mom will be undertaking in January will only help. Thats the feeling I had when my oncologist wanted to continue chemo during radiation. Her reasoning was that it was working so why stop ?

Anyhow, again, best wishes to you and mom and know that 2012 will be a better year. Keep the positive vibes going. It really, really helps without a doubt.

Hi Rocky and Monarch: I've reported this several times but here goes again. I am on folfoxfiri as my chemo regime (oxaliplatin + irenotecan + 5FU pump) administered every 2 weeks. During and after my first treatment, I really reacted to the oxaliplatin - face felt like it was going to fall off, constricted throat, extreme cold intolerance, so my oncologist reduced the amount and infusion rate of the oxi during treatment. As well, I started taking these supplements from information I received on this website: L-Glutamine Fermented, 5 grams/day in juice; alpha lipoic acid capsules 3x/day; vitamin B6 1/day; calcium/magnesium 1/day. Since I have, I can eat ice cream right after treatment and don't need the gloves and scarf etc. But that is me. I see others on this website have tried this and it worked for them too but it may not work for you. I have heard that 1 or 2 cancer centres administer the L-Glutamine during chemo. Here you can request calcium/magnesium during infusion. Worth a try as I don't think anything here is harmful. As winter is coming here, I sure don't want the cold intolerance!
Cheryl

During the last few weeks I am experiencing some new things that have me concerned. I am tired ALL of the time. I could get 14 hours of sleep and wake up feeling exhausted. I am getting severe joint pain, have some problems walking and feel like I am in a fog. I am becoming forgetful. I have also had some several low grade fevers develop when I do even the slightest bit of activity. I went back to Sloan Kettering 2 weeks ago with a fever and they ran all tests which came back negative but they put me on a strong antibiotic which worked. I am finding it more and more difficult to just function through a normal day. My wife noticed it a week ago and I figured it would go away after my radiation ended (about 6 weeks ago) but it is getting worse and worse. Has anyone heard of or experienced this ? Going through treatments wasn't as bad as this.

Hi Rocky,
I am 17 months from surgery for stage 3 b gall bladder cancer and had 6 cycles of gemcitabine/ cisplatin chemo and i did not have any radiation.
I did have a slight thyroid condition before my cancer diagnosis, but 6 months after i finished the chemo treatments i became very fatigued and it was found that my thyroid went totally out of whack, it is now back in check with a much stronger dose of synthroid.at this stage of recuperation i dont have pain but my energy / stamina is quite low .

I read your post and I think one of the other people gave you a good place to start . When they mentioned having your thyroid checked out. I had surgery in Sept. of 2008 for pancreatic cancer. I had radiation and chemo before the surgery and chemo after the surgery. I still have bouts with severe joint and muscle pain(not as much now days) as well as periodic severe pain that can accompany pancreatic cancer survivors. I always described it as being hit by a train and being drug down the tracks for a mile or so. Never any energy and always in a fog. Not to mention the pain everywhere! So yes I'm all to familiar with what you are asking. Like you, I also thought that, the treatment and surgery wasn't as bad as I would feel every waking moment afterwords.

There are a lot of factors and I'll try to keep it short as possible for now.
Like another post to you mentioned. Get your thyroid checked out. They can really take a hard hit from the rads and chemo in some cases. I finally had mine checked out after a couple of years of dealing with the low energy and constant "in a fog feeling."
Once my amount of thyroid medicine (Levothyroxine) was figured out. I got my energy level back up. Not exactly where I think it should be in my mind but, a far site better than where it had been and I'm in no way complaining!

As for the pain in the joints and muscles. NOTE: CHECK WITH YOUR DOCTORS ABOUT TAKING THIS! I heard both good and bad things about this med. but, it worked for me. I took Celebrex 200 mg. I no longer take it as of two months ago. I just said, " I think I can deal with it. I guess for lack of a better term I just got used to the joint and muscle pain. Exercise, as much as you possibly can but don't over do it!!! Build up you exercises slowly. In my case I was bed ridden for almost a year. So I had a long way to go to get my muscles anywhere close to what they used to be. I was told for every day in bed with no muscle usage. It would take seven days to make up for that one day in bed as far as muscles are concerned. Plus age and a few other things in my case.
Also when I get up in the mornings a good warm to hot as you can stand it shower helps ease the muscle and joint pain.

But , remember. We all find different things that work for each one of us. What works for me might not always work for someone else. So make sure and double check with your own doctor(s) to make sure it will be OK for your individual condition.

Mom saw the doc last week and he prescribed Celbrex for her. He said that with the coumadin, it was either that or steroids and steroids came with other issues that Mom didn't need to deal with. So, Celebrex it is. And, it has already started to make a big difference. She is feeling much better - can walk without the pain, is feeling stronger, and has more energy. We went out yesterday and she was like a new woman. She was getting around so much better.

Since both of us are being treated at Sloan-Kettering, I thought that it might be helpful to ask whether you've talked with Dr. Deng in the Integrative Medicine department. I spoke with him on the recommendation of my oncologist, who said that she routinely sends patients to him if they have lifestyle questions, which is his specialty area. He went over my records and then gave me personalized suggestions for a couple of dietary supplements and changes in my diet. He also gave me an information sheet that's relevant to anyone with cancer.

There's a very useful website at Sloan-Kettering that provides information about herbs, diet, and other general health issues. The link is http://www.mskcc.org/cancer-care/integrative-medicine.

We keep going back and forth between cis and oxa. I think we are leaning toward the oxa again as the reports of it's wonderful results are ever increasing. Still, the side effects of either choice worry Mom.

Hi Charmi: I just had my MRI results and they are good - stability, some shrinkage even, and no new growth. No signs of cancer anywhere else except the nodules on the peritoneum. So maybe oxaliplatin will work on gallbladder cancer too. My oncologist is a genius at trying things, combinations. So again, I have just finished 12 treatments of oxaliplatin + irenotecan + 5FU pump for 42 hrs. I am off chemo until January. We are looking at surgical options too. I managed to control all the side effects - and they are plenty! But am still happy to be off chemo for awhile!
Cheryl

Hello to all. Rocky, I imagine you will be getting your scan results and I want to send you well wishes & prayers for good results. I would agree with Haugy and Oneshot that it would be good to have your thyroid checked out regarding the fatigue. Maybe they did test that with your workup? I was on thyroid medication before all this happened, and I have not required a higher dose, however I do get that checked on a regular basis. It seems that a number of you have gone to Slone Kettering; they seem to have good experience in surgery and gallbladder cancer. I live on the West Coast, but the surgeon that I had trained at Slone Kettering, so I was encouraged. I see him tomorrow for f/u, and he will also review my results with the tumor board. My oncologist said the CT scan looked fine without any sign of cancer.

I hope everyone doing chemotherapy now is doing o.k. It seems they each have their issues and side effects; I still have tingling in my fingers and toes...... still hoping it improves. But otherwise, I am feeling so much better. I would say my energy is a little less than it used to be, but definitely better off of chemo.

To Monarch....... I understand the struggle of wanting to be on the right chemo. One thing my surgeon said is that there is more than one possibility, and of course without extensive research in gallbladder cancer.... no one knows the absolute best answer. The important thing is that we know chemo can kill cancer cells. Whatever the chemo cocktail, we want to have our body respond. It sounds like your mom is doing very well, and I am praying that all the cancers cells were taken in surgery, and that the rest is, like you said, insurance. It is nice to see people on the discussion board from other countries: it helps to know that treatments seem to have similar threads. Happy Thanksgiving to all!
Jean

Just joined today looking for information and support about my dad, 78, with stage III gallbladder cancer. From reading your posts I gather that cisplatin and oxaliplatin are two most frequently used chemos, and that radiation is not used in Canada and does not increase improvement much, but is used here. You all also have many wonderful suggestions for a holistic approach to this, as well as how to be as well as possible during treatment. Are we allowed to list doctor names on this blog? I'd like to figure out how to learn the reputations of the doctors at Lahey Clinic in Massachusetts in treating this. Also would like to find a specialist. Thanks for your help and support!

Thank you for your response to my post and for your good wishes. I hope that all will go well for your mother.

Unlike your mother, I'm getting GEMOX as the first-line treatment, and I don't know whether the other things she's taken might affect the side effects of GEMOX. Has her oncologist said anything about this?

I've now had four treatments at two-week intervals, and since the side effects may be cumulative, I may still be in the somewhat early stages. I experienced sensitivity to cold beginning immediately after the first treatment, and it was quite strong after the second one. The second treatment happened to occur during a freak snowstorm in NY at the end of October, and I didn't have gloves or scarf. No serious harm was done, but the pins and needles in my hands were painful, and I had to hold my hood over my face to prevent shortness of breath resulting from the cold air. As the days passed, I found that I was feeling tingling in hands and feet even when cold was not involved. I also had trouble -- briefly -- in swallowing even warm foods and felt tingling in my throat when I drank even room temp beverages. At that point, I started taking L-Glutamine at the suggestion of a doctor in the Integrated Medicine department of Sloan-Kettering. I take fifteen grams twice a day for the first seven days of each two-week cycle, beginning with the day of the treatment. I can't prove that it was responsible for the difference, but I've had almost no tingling since then except when I touch items from the freezer or sometimes from the fridge. It's not bad enough to cause me to wear gloves.

Just to put this in perspective, the tingling I've described is definitely tolerable. I'm not going to pretend that this is fun, but it's certainly do-able and well worth it. Depending on how old you are, your mother may be my age or younger, and at least so far, this is well within what I can handle.

Again, best wishes to you and to your mother. I hope that the GEMOX (or cisplatin) will be beneficial to her.

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