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Gallbladder Cancer - 2011

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

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.

Hope and Faith will carry you through.
Take Care
Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Karen,

Yes, any type of cancer diagnosis can be quite expensive. I think most of us have the same feeling about trying to do something to help others but don't know how to go about it. I probably should quit talking about it and start doing something even if it is just small.

It is quite understandable that she is feeling sad. It is easy to have blue days sometimes. It is good that she doesn't want to die and she has to realize that this is a journey that she has to go through. It isn't easy and has many twists and turns, ups and downs in the road. I think that most people ignore all the symptoms in the beginning and once the reality hits of the diagnosis it is like someone knocked the air out of you. So many conflicting thoughts cross your mind. No one ever thinks that in a moment everything about your life has changed.

Since your mom hasn't gone back to work is she on STD or LTD currently with her employer?
The reason I'm asking is because she would probably qualify for Social Security as disabled. Gallbladder Cancer was added to the Compassionate Allowance List for disability. For me it was a very hard decision to make because I always thought that I would be able to go back to my career (since I was only 46) once I resolved what I felt was a minor event in my life. Little did I realize that it would be a major event in my life.

We always want instant results but sometimes that isn't possible. It isn't unusual for stents to be put in when ascites is present. I have been told by others that they had to have that done. Why is the oncologist not fond of doing this procedure? Have you asked him what his reasoning is? Desperate situations sometimes requires desperate measures.

My heart goes out to you and your Mom as I feel I can truely understand her frustrations along with others that post to these boards. It is a very ugly disease and will take all of her strength to get through this. Yay, no hand and foot!!!

Let us know how it progresses.
Take Care
Lily

Sharon Lee
Posts: 4
Joined: Jan 2011

Hi Survivors:
I noticed that several of you wonderful survivors have had surgery to remove your GB cancer. My husband had very radical surgery about one month ago. A portion of his liver, his bile duct, his gallbladder and part of his pancreas were removed. My question is were you able to eat much following surgery? He has no appetite and I am stumped as to what to feed him. When did you feel like eating again following your surgery and when did your energy start to come back. I don't know if this is normal given the extent of his surgery but it does worry me.
Sharon

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Sharon: Lily will give you much more information as she had much the same, if not more, surgery your husband did. I only had the gallbladder, its tumour, and part of my liver removed. I too lost my appetite for months actually and lost about 30 lbs (which I could afford to lose!). I had to wait for chemo to start (4 months) because the incision wouldn't heal. Anyways, I knew I had to eat to stay healthy and to get ready for the chemo so I ate. I started slowly - lots of ENSURE or BOOST, lots of healthy smoothies made with whey protein powder, soy milk, real fruit, eggs, white rice; I tried to eat a balance between low fibre and medium fibre because diarrhea can become an issue and for that you need low fibre (against all rational thinking!). My doctor said eat anything you like, because you'll eat what you like and will avoid what you don't like. How true! I took lots of supplements like milk thistle, paw paw, Vit E, Vit C, Vit D, selenium, green tea, turmeric - there is a wonderful book out there by a doctor whose name I can't remember but he was diagnosed with inoperable brain cancer and is still here 20 years later - he tells it all re eating.
You have to build his strength up for the upcoming chemo.
Lily?
Cheryl

haugy
Posts: 9
Joined: Sep 2010

the book is called
Anti Cancer a new way of life
by David Servan-Schreiber m.d. ph.d.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Yes, that is it - the Anti Cancer Diet: A New Way of Life. Thanks, Murray.
Cheryl

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Murray!

Thanks for the info! Hope you are doing well!
Take Care
Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Sharon,
Welcome to our discussion group! We are so glad that you found us!
I'm so sorry that this disease has touched your lives. The good news for your husband is that he was able to have surgery. Will he be having and chemo or radiation treatments? What Stage did they classify it as? Where are you located at?

Now on to your questions. I wasn't able to eat much after my surgery. I had 11 months of chemo before my surgery so my appetite was already gone. I lived off of small meals throughout the day. Smoothies were a mainstay with fresh or frozen fruit. Oatmeal, granola cereal, rice, pasta (olive oil), eggs, applesauce, chicken, turkey, fish, fresh fruits and vegetables. You have to start with very small portions because of the radical surgery his digestive tract will never be the same. Fiber is a must. I know as Cheryl stated that it is important to drink Boost or Ensure to make sure you get what you need, but I really didn't care for either of them. Even if he isn't hungry he has to make himself eat. It is a very long process to go through but one day he will want to eat everything in site. Everyone is different but as his body recuperates from the surgery his appetite will come back. You have to be mindful of things that can cause issues such as red meats, spicy foods, nuts, popcorn, etc. It is a trial and error adjustment period for him but he will find his way with your support. Now as far as energy goes again everyone is different. Exercise helps even if it is just walking around the block. After my surgery I had to do an additional three months of chemo so I would have to say for me that after completing my treatment (which was 1 1/2 years) after about 6 months I was able to do more. My body, mind, and spirit were beaten up. Recovery from this disease takes time and patience.
You have every right to be worried about the man that you love and your support will help him. Finding the new norm for him will take time.

Ask us anything we will try to help you!
Take Care
Lily

Sharon Lee
Posts: 4
Joined: Jan 2011

Hi:
My husband, age 53 has gb cancer and is recovering from major major surgery. I know what you Lilly mean about your mind, body and spirit being beaten up. You sure fought back though!
Hubby had his surgery May 4, 2011. He has had a couple of complications. A portion of his incision split open about a week after surgery. That has finally started to heal. Also he has developed an abdominal abscess (which became infected). The docs inserted a drain and it looks like it could be in for a while. He is weak, often nauseus and it tears me apart to see him go through this but there is no alternative so we are thankful, very very thankful that he has had the surgery warts and all.
Thank you for telling us about your ordeal ladies. The battle is sooooooooo hard, so long and your posts help to keep me going.

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Sharon,

Good to hear from you! The surgery that your husband has had is a major, major surgery. But you have already realized that. Recovery is a slow process. Patience is the key. I know that in his mind he feels okay done with that now I can go back to "normal". The problem with that statement is that he will now have to find his "new normal". It is amazing how this disease changes you attitude about life. Things that were ever so important before, no longer are. He needs to let his body heal from such a traumatic event. We are a society of immediate gratification and this will be something that is a gradual process. It isn't unusual to have a few complications after this surgery. I can remember a time when I wasn't even able to open a bottle of water. It does get better. Does he have nausea medication? If it isn't working ask the doctor for something else. I actually found for me that Lorna Doone shortbread cookies helped better than the pills. Also be very mindful of the pain medications as most of them are highly addictive. I believe that you should take the pain pills to elevate the pain and help you to rest, but it is very easy to get into a stupor if you are not careful. I still will take them occassionly when I have done too much.

Make sure that you take care of yourself also. Sometimes I feel that this disease can be harder on the caregiver than the actual patient.

Let us know how he continues to progress. We are here for you!

Take Care
Lily

maudsie
Posts: 54
Joined: May 2010

Hi Karen -- I've been away from this board a while so I just want to say hello to you, and Cheryl, and Lily, and all my friends here. I am doing fine. I wanted also to chime in with my two cents about what to do about ascites. Generally, I think, what is being done is an abdominal pericentesis and isn't too big a deal and can really alleviate symptoms. Rather than a stent of some kind, under local anesthesia you get a needle placed briefly into the abdominal cavity and excess abdominal fluid is drawn out, up to a liter or two at a sitting. This can be done in a matter of minutes and doesn't require hospitalization in most cases. It may have to be done again after a while, as more fluid gathers, but it's great for doing now and then and most certainly can give relief. There is no reason to carry this pain and discomfort from something like ascites when there is a fairly simple procedure to keep it under control. Hope this helps.
Big hugs all around to you all!
Maudsie

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Maudsie!

Glad you are doing well. Your two cents carry lots of weight with us. We are so lucky to have you as a resource. Being a retired R.N. means you have the technical training that the rest of us don't. Your words give us great comfort and can alleviate many fears.
You are a blessing to us all.
Hugs back!!!!
Take Care
Lily

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Maudsie, Lily, and all: I was talking to a nurse at our cancer centre during my chemotherapy and she said that women come in regularly (mostly ovarian cancer patients) to have ascites drainage. As Maudsie says, it took only a few minutes and they were good to go but feeling much better!
Good to see you "back" Maudsie!
Cheryl

maudsie
Posts: 54
Joined: May 2010

Thanks for your kind words! We all are quite a team!

Maudsie

ljt33
Posts: 2
Joined: May 2011

Hi all,

Thanks to all of you for posting your comments. Sadly, I would like to join your club, as my mother (age 72) was recently diagnosed with Stage IV gall bladder cancer (some spreading to omentum, probably liver, but not known if spread to lymph nodes). I have read a lot about it, on this site and others, so I feel that I have a good idea of what she is up against. We have had her see a specialist in Boston, and she was started on Gem/Cis, two-on, one-off, which I think she is tolerating fairly well.

I personally have been a member of CSN since 2008 because that's when I was diagnosed with breast cancer. As a result, I've been thru the surgery, chemo, radiation, etc. cycle, albeit for a cancer with much better odds. I mention this only because I'm pretty knowledgeable about many aspects of the health care system and the various ways to treat cancer. For example, although my cocktail was different than my mom's, I feel as though I am a good resource to her when managing symptoms of chemo, as I have personally experienced many of them.

When I was actively going through treatment, I found online communities to be a great resources. I am hoping to develop the same type of network of people dealing with gall bladder cancer, so that I can help my mother in the best ways possible.

Of course, I too am very encouraged by Lily's long history of dealing with this disease, and hope that for all of us or our loved ones. As I've been reading your posts, I've had a few questions, which I hope you all can comment on. I'm sure I'll have many as time goes on, but I hope to share information too when/if I learn any that is useful.

Questions:
1) Was Gem/Cis the first treatment for others as well?
2) I think some have started adding daily Xeloda -- when/why was this added to your treatment plan?

Thank you for any info you provide,
Linda

ljt33
Posts: 2
Joined: May 2011

Another question I have is how long people have done the Gem/Cis regimen and whether you stopped that treatment because it was no longer as effective as others, or if it was stopped because there was no visible cancer, or if there is just a standard length of time that someone can take Gem/Cis before they have to stop.

Just wondering.

Thanks,
Linda

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Linda: Welcome to the gallbladder discussion thread. I am so sorry about your mom. I can only anwer one of your questions. I was diagnosed with gallbladder cancer way back in October 2009 (well, not exactly but my GP noted an increase in liver enzymes during regular blood work, ordered a CT scan which showed a mysterious mass between the gallbladder and the liver, and scheduled me for laparoscopic gallbladder surgery which I had in April 2010). The surgeon cut out the gallbladder (full of gallstones), its tumour, and part of the liver where the tumour had penetrated. I ended up in hospital again for 10 days with infection and a burst blood vessel. I found out I had cancer "officially" May 26, 2010 but couldn't start chemo until September when the incision finally healed (with a nice long incisional hernia to boot!). The surgeon tested some nodules on the peritoneum and omentum, all cancerous. But no other cancer visible. I started on gemcitibine/cisplatin in September and immediately had a bad reaction to it and ended up in the hospital with bleeding colon. Had a colonoscopy and was diagnosed with ischemic colitis. I resumed the same chemo treatment but at a reduced amount. The treatment cycle was two on, one off. I had 6 months of chemo (12 treatments). But this regime did not remove the peritoneum nodules. There are only 6 visible ones all less than 13 mm in size. But no other cancers visible, not even in the lymph nodes. The oncologist started me on oxaliplatin/irenotecan/5FU/leucovin (called FOLFOXFIRI) May 17. This is the standard for colon cancer I believe (which I don't have). I have had 4 treatments - lots of side effects whereas I had very few with the GEM/CIS regime - neuropathy, diarrhea, breakage of hair, shaking, etc. so the oncologist reduced the dosage and infusion rate. I don't know how this treatment regime is working because I get my first MRI scan this coming Wednesday. Here's hoping.
As far as I know the GEM/CIS regime is usually 12 treatments but Lily had it for a lot longer. I don't know about others.
Hope this helps.
Cheryl

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Linda,

Welcome to our discussion board! I'm so sorry to hear about your mom. This is a very terrible disease but Hope and Faith will carry you through. I'm so sorry about your own cancer diagnosis, but you are a survivor and that strength will help your mom on her journey. You will be a great resource to her and you realize what a toll this will take on your mom. You will be there to help her every step of the way. I can tell that you love her alot. Knowlege is power, the more informed you are, and the more questions that you can ask on behalf of your mom will be to your and her advantage. You will be a great advocate for her.

As for your questions I orignally started on Gemzar and Carboplatin. I didn't tolerate the Carboplatin well and was switched to Cisplatin. I know that my dosages were sometimes reduced due to low blood cell counts. I started chemo in December 2005 and didn't complete it until March 2007. I had surgery October 13th (Friday the 13th) 2006. The additional chemo after surgery was because the pathology report showed that I still had cancer cells in 6 or 7 of the 14 lymph nodes that they removed. I stayed with that same chemo cocktail through the duration of my treatment as there was shrinkage of my turmors. I always had extra hydration given to me when receiving treatment. Some treatment centers do that automatically and others only when you ask for it. I also had to have a blood transfusion once.

Eating healthy is so important and as you know even when you don't feel like it you have to do the best you can to take care of yourself. Since I had no underlying health problems and I was fairly young (46) at time of diagnosis I was able to withstand the hell that I was put through. Cancer is something you fight or give in to and I wasn't willing to give in. More and more of us are survivors and we will all become a force to be reckoned with. Maybe some others can shed some light on their Xeloda treatment.

Ask us anything you want and we will try to help.

Take Care
Lily

bjs
Posts: 23
Joined: Apr 2011

Hi Linda,
I am currently in treatment for locally advanced gallbladder cancer that has spread to my bile duct. I had my gallbladder removed in early March. My oncologist advised six weeks of radiation and daily oral Xeloda. The orginal Xeloda dose caused hand/foot syndrome so it was cut to a half dose towards the end of radiation. I think that some other chemo medications cannot be combined with radiation and my oncologist has great faith in Xeloda and I in him! After my radiation/chemo, i had four weeks off treatment to recover. I am now on Gemzar by infusion and daily Xeloda for two weeks on and one week off for aplanned six months. My oncologist said that other chemo combinations are used but he thinks that this is the best for me.
i hope that this helps. I think that it is good to ask the oncologist lots of questions about the treatment regime chosen. It is so important to have confidence in the doctor and the plan. I wish your mother all the best in her battle and look forward to hearing from you to update us. She is very lucky to have you!
All the best,
Betty

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Yes, I'd certainlhy like to know more about Xeloda. I haven't heard of anyone getting it here in Canada for gallbladder cancer. I'll try to find out more.
Cheryl

maudsie
Posts: 54
Joined: May 2010

Hi Linda -- After my diagnosis and surgery (July 2008) i received xeloda (an oral form of 5-FU) for about 6-8 weeks, concurrent with radiation. Xeloda is commonly used here in the U.S. as part of the GBC treatment regimen. It is a "radio-sensitizer" so it can work especially well when used at the same time as radiation therapy, but is also given alone or with other IV meds (such as Gemzar AKA Gemcitibine). Radiation is not an option for many, only if the cancer is known to be in a limited area small enough for the radiation to target. After the xeloda/radiation, in my case I got IV Gemzar, but not in combo with Cisplatin or Oxcilliplatin as it is often given. Not sure why. As you see, there are slight variations in all our treatments, but they also have much in common. Having Gem/Cis as the first treatment is just fine. In general, I believe, each total treatment might go on for 8-12 weeks, maybe longer, along with blood tests, and then a CT scan might be done to check for effectiveness. If things are working, then, perhaps more of the same chemo. If not so much, then a different chemo is brought in to try. Best of luck to you and your Mom!!!
Maudsie

klnh0126
Posts: 13
Joined: Nov 2009

Hello to everyone,

Sadly today I said goodbye and buried my mom. This terrible disease took her life on June 30th. She had one complication after another and went into home hospice for 7 days and then needed hospital based hospice to help manage her terrible symptoms for 6 days until she passed. Her dying process was almost unbearable and I stayed with her til the end. She was a wonderful women and didn't deserve any of this. I will forever miss her!!! My heart goes out to all of you as you battle this disease.

Karen

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Dearest Karen,

I'm so sorry for your loss. Today must have been a very hard day in your life and yet you came to the discussion board to let us all know. Thank you for that. It is never easy to say goodbye.

Your mom is no longer in pain and has gone on to a better place. She fought a good fight and you were there every step of the way to comfort her and support her. She was very proud of you as her daughter and the many memories that you have of your mom you can hold in your heart forever.

Take Care
Lily

SusanCH
Posts: 4
Joined: Jul 2011

Hi
My first time to this discussion board. My name is Susan and I was diagnosed with gallbladder cancer that has spread to the stomach lining. I too have been told that surgery is not an option because the cancer has spread and that I have a very short life expectancy. I am 55 years old and otherwise have no health problems. I have no pain. My original symptom was nausea which I still have but I can't tell if that is due to the cancer, chemo, dehydration, or?. I have been getting Gemcitabine and Cisplatin once a week for two weeks followed by a week off. I am being treated at the University of Wisconsin - Madison cancer center by an oncologist. He is using the CA-19-9 as a marker and it originally was 132 but has gone down to 92 since starting chemo treatments in February.

I wonder if I should question my doctor about possible surgery? Is there a certain point in treatment where surgery becomes an option? Also am curious why he seems to be using a different marker than what others are talking about. Really, any advice anyone can give me in terms of how to approach this would be helpful. I have been shy about asking for a second opinion because my oncologist has seemed happy with the results he has been getting. Perhaps I should be more assertive about that. Does anyone have any advice about the types of questions I should be asking?

Any help is much appreciated. Susan

bjs
Posts: 23
Joined: Apr 2011

Hi Susan,
I am so sorry that you have joined those of us fighting this cancer but glad that you found our discussion board. When I was first diagnosed back in March, I was very upset that I could not find anyone else with this cancer. It took me a while to find this discussion and I have received so much support from all who post here.
I too have been told that my cancer is inoperable. Although my gallbladder was removed in early March, the cancer in the bile duct cannot be removed-at least for now, as i view it. I am hopeful that the treatments will shrink my cancer enough for surgery to be an option later even if my husband and I have to find a surgeon in another city. Fo far, my radiation and chemo are lowering my tumor markers. My cancer is very small so it does not show up well on CT scans but it is not growing.
From the little I know, I think that each case is different and you should discuss all of your concerns with your medical team. If you want a second opinion, I would certainly get one. It is very important to have confidence in your medical team and treatment plan.
I wish you all the best in this fight and look forward to hearing how you are doing.
Take care,
Betty

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Susan: I am another person with gallbladder cancer. Mine was diagnosed way back in October 2009. I had laparoscopic surgery in mid-April to remove the gallbladder and they removed its tumour and part of the liver as well. No evidence of cancer in the stomach or bile duct as the tumour grew out of the gallbladder at the "liver end" rather than the "bile duct" end. But I do have cancerous nodules on the peritoneum - they saw them during the surgery but did not cut them out unfortunately. There is the possibility of surgery down the road but not likely as only two surgeons do this surgery in Canada. My treatment started with cisplatin/gemcitibine two weeks out of three but didn't do much for the peritoneum nodules which are not apparently connected to the blood supply system. The cis/gem treatment ended in January and I started a more rigorous chemo treatment in mid-May - called FOLFOXFIRI (oxaliplatin/irenotecan/5FU on a 42 hour pump). This is a nastier treatment with all sorts of side effects. I have finished my 5th treatment and had an MRI but have not had the results yet. It has worked for people with colon cancer and its spread to the peritoneum. So here's hoping.
I would get another opinion if you can (it is difficult to do here in Ontario so I didn't). I know someone in Saskatchewan who was given a very negative outcome so he went to the Mayo Clinic in Minnesota, had surgery to remove the gallbladder and its cancer and a thorough check to everything else down there. He is doing very very well. From my experience, the removal of the tumour should happen at some point. My tumour was about 7 cm long. I wouldn't recommend the laparoscopic surgery though - not thorough enough and cancer cells can be scraped off during removal. I would recommend they check out the peritoneum and omentum for cancerous nodules which are tiny and hard to detect on scans.
Good luck! Keep us posted!
Cheryl

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Susan: I am another person with gallbladder cancer. Mine was diagnosed way back in October 2009. I had laparoscopic surgery in mid-April to remove the gallbladder and they removed its tumour and part of the liver as well. No evidence of cancer in the stomach or bile duct as the tumour grew out of the gallbladder at the "liver end" rather than the "bile duct" end. But I do have cancerous nodules on the peritoneum - they saw them during the surgery but did not cut them out unfortunately. There is the possibility of surgery down the road but not likely as only two surgeons do this surgery in Canada. My treatment started with cisplatin/gemcitibine two weeks out of three but didn't do much for the peritoneum nodules which are not apparently connected to the blood supply system. The cis/gem treatment ended in January and I started a more rigorous chemo treatment in mid-May - called FOLFOXFIRI (oxaliplatin/irenotecan/5FU on a 42 hour pump). This is a nastier treatment with all sorts of side effects. I have finished my 5th treatment and had an MRI but have not had the results yet. It has worked for people with colon cancer and its spread to the peritoneum. So here's hoping.
I would get another opinion if you can (it is difficult to do here in Ontario so I didn't). I know someone in Saskatchewan who was given a very negative outcome so he went to the Mayo Clinic in Minnesota, had surgery to remove the gallbladder and its cancer and a thorough check to everything else down there. He is doing very very well. From my experience, the removal of the tumour should happen at some point. My tumour was about 7 cm long. I wouldn't recommend the laparoscopic surgery though - not thorough enough and cancer cells can be scraped off during removal. I would recommend they check out the peritoneum and omentum for cancerous nodules which are tiny and hard to detect on scans.
Good luck! Keep us posted!
Cheryl

SusanCH
Posts: 4
Joined: Jul 2011

Thanks for your help Betty and Cheryl. I think I have some research to do this week! Can anyone tell me if they had to visit a surgeon in another city first or is it possible to get a surgeon to give some sort of preliminary determination by just looking at records of CT scans and other tests? I'm trying to avoid the travel costs of going to another city to get an initial opinion. Or do you think it's important to be there in person? So much to learn! I can see how dealing with this cancer easily becomes a part-time job. Oh well, I still have lots to be thankful for, including the relief I feel from finding this discussion group. I also have a wonderful husband and two dog companions who I can lean on.
Susan

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Susan: I can't help you there as I live in Ontario and where I am there isn't a lot of choice. I would certainly get a 2nd and even 3rd opinion though if you can as some surgeons do a more aggressive surgery than others (mine didn't). They can look over your scans and files and then you should meet with them in person. I'd certainly go for someone who has experience with this type of cancer though. Go for it!
Cheryl

bjs
Posts: 23
Joined: Apr 2011

Hi Susan,
I too am planning to get second or third opinions on surgery down the road when my second round of chemo is done in December. I hope to get some shrinkage of the bile duct cancer so that my bile duct can be either opened or replaced with a permanent solution instead of the stents which must be replaced every eight weeks or so. I plan to check with surgeons in Seattle where I live. i am lucky to have major cancer centers here. Also, in one of Lily's posts, she put the contact information for the surgeon she used at Stanford. I plan to check with him, in person, if i cannot find a surgeon locally. I don't know if a doctor will give an opinion without seeing the patient. Maybe your oncologist can give you some contacts and talk with one or more surgeons about your condition.
You are so right about this cancer becoming like a job! I am retired and I think of this as my job now. Everything else in my life has taken a backseat to fighting this cancer because, if i lose, i lose everything else anyway. the discussion group is so inspiring and gives me hope and strength.
I will be very interested in what you find out about second opinions.
Take care,
Betty

Lauren21
Posts: 7
Joined: Jul 2011

Susan,

My mom was just diagnosed, so I do not know a lot about this but our last visit with the oncologist, she told mom that she was going to test for the CA 19-9 marker since no "measurable" disease can be seen on mom's scan and all her other blood work is normal. She said that sometimes the CA 19-9 marker shows up in hepatibiliary cancers, and if its showing with mom's that will give her something to measure her progress by.

Hope that helps.

-- Lauren

maudsie
Posts: 54
Joined: May 2010

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

SusanCH
Posts: 4
Joined: Jul 2011

Maudsie,
Thanks for your tip on chemoperfusion. I just spoke with my oncologist yesterday again about surgery and he really thinks that removing the gallbladder can cause more problems than it solves. He also mentioned that my cancer had spread into the stomach lining but had not spread to the liver amd that was also a reason why surgery was not appropriate.

Thanks to someone elses advice I have an appointment at the Mayo Clinic in a couple of weeks to get a second opinion on options. I will bring up chemoperfusion during my consult.

It's frightening, I think, to explore these possibilities. I'm afraid of hearing answers I don't want to hear or else answers that will force me into tough decisions.

Take care,
Susan

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

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.

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Susan,

Welcome to our board. I see that everyone has jumped in and hopefully made you feel welcomed. I'm Lily and I am a 5 1/2 year Stage 4 Gallbladder Cancer Survivor. I too was told the dreaded words inoperable and get your affairs in order at tender age of 46. My cancer had spread to my liver, stomach lining, bile ducts, and lymph nodes. I really only had lower back pain (which I have had all my life), nausea and tightness in my chest. I was healthy and didn't even have a doctor. My life changed on a dime with the news.
I had a very aggressive form of treatment that didn't include radiation as my liver was compromised. My chemo cocktail was Gemzar and Cisiplatin also. It is really good news that your marker is going down. That means that the chemo is working for you.

Of course you should question the doctor. You have to be your own advocate in this situation. I believe in second, third, and fourth opinions. Don't be shy; you won't hurt your oncologist’s feelings. You have to have total confidence in the team that is working with you and going down the road with you. If you are not willing to give up then don't let your doctor give up on you. I think that my oncologist (by the way a wonderful man) said it best. Chemo is the science and surgery is the art. I was told numerous times by the surgeon that he couldn't do anything for me, go back and get more chemo. I did 11 months of chemo before I was told by that same surgeon yes. He probably felt that I would just kept coming back until he said yes. Attitude is so very important. I did have to travel to another state to get my surgery but the expense of doing that was well worth it to me. Both doctors gave me a chance to see my daughter grow into adulthood. I had what is called an extended (or radical) cholecystectomy. I had an additional 3 months of chemo after my surgery as the pathology report stated that I still had cancer cells in some of my lymph nodes that they removed. I did that standing on my head since I had been battling for my life for a year! I'm not saying that it was easy because none of it is but you have to try and feel like you are an active participant in the decisions that are being made based on the doctor’s level of expertise. Ask questions as much as you can. If you don't ask they won't tell you because everyone is different and they don't want to plant any ideas in your mind. Write your questions down when you think of them so that when you go you are prepared and not relying on your memory.
I'm listing my oncologist and surgeons name for anyone who wants to contact them.

Oncologist:
Cancer and Blood Specialists of Nevada
Russell Gollard, MD
58 N. Pecos Road
Henderson, Nevada 89074
702-822-2000
Green Valley Location

Howard Reber, MD
Specialty Surgery
Hospital Affiliation Ronald Reagan UCLA Medical Center
Contact (310) 825-4976
Email Address hreber@surgery.medsch.ucla.edu
He is associated with The Jonsson Comprehensive Cancer Center.
http://www.cancer.ucla.edu
Check out this website, it has lots of good information

Hope and Faith will carry you through.
Take Care
Lily

Lauren21
Posts: 7
Joined: Jul 2011

Lily,

Your story sounds a lot like my mom's. She has been recently diagnosed wtih gall bladder cancer, Stage IV. She cannot have resection surgery. She is 48.

I saw your age at diagnosis was 46 and that you are a six-year survivor. Since mom is close to the age you were when you started your journey, I'd like to know your chemo regimen and everything you've done to battle your cancer thus far.

Also, I am really pushing mom to get involved in nutritional therapy. Have you taken a nutritional approach (juicing, detoxing, raw veggies, supplements, etc)? Do you work? Do you exercise?

Also, are you opposed to contacting others via phone? Mom doesn't have internet, so she can't actively participate in this discussion board, but it might raise her spirits to talk with someone who is battling the same thing that she is.

Thanks, I REALLY look forward to hearing from you!

--Lauren

Sharon Lee
Posts: 4
Joined: Jan 2011

Hi Everyone:
My husband, age 53 has gb cancer. He had very extensive surgery on May 4, 2011. His surgery was very similar to Lily's surgery - liver, gb, bile duct, part of colon and part of pancreas.
My first comment is to anyone who is facing this cancer. You have to be a very good advocate for yourself to fight against this cancer. We were told my husband's cancer was too advanced and invasive for surgery but knew that surgery was his only hope. If you are young and in good health - get the surgery. It can be a tough surgery to recover from but the alternative is not good. Keep fighting for the surgery if you can.
Now with regard to my question - he is three months post surgery and still has periods of intense pain. He describes it as gas pain and it makes him bed ridden sometimes. Has anyone had this and if yes, I am hoping it goes away over time? He is going to watch his diet (limit sugars and fats) to see if this helps. He takes Creon 25 to help digest his food.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: I can't comment on intense pain after gallbladder cancer surgery because I didn't have any (my surgery just removed the gallbladder, its tumour, and that part of the liver that the tumour had penetrated). But the pain sounds like the body trying to deal with the lack of a gallbladder. The gallbladder had a job to do and it is not there. Eliminating lots of fats from the diet is a great start!

But I do want to comment on Sharon Lee's plea to fight this cancer. This is especially true in Canada where it is very rare. I would urge anyone who has the slightest twinge of pain in the typical place for gallbladder stone "attacks" - across the mid to upper back - especially women (women are particularly susceptibe to gallstones and hence gallbladder cancer) to find out more about it. Immediately. Mine was discovered because of an increased liver enzyme during a regular physical. A CT scan can "see" if there are tumours protruding from the gallbladder. Unfortunately gallbladder cancer is usually not discovered until surgery to remove gallstones or the gallbladder with its stones and often that is too late. As well, it's been my experience and that of the few others here in Canada who have/had this disease, that surgeons are reluctant to remove a tumour above a certain size and recommend chemo to reduce it. But if the patient can't tolerate the chemo, the tumour just grows and grows and spreads.

There is a protocol for gallbladder cancer surgery as well that isn't widely known, at least here in Canada. Usually the news is, nothing we can do until ... or even more final than that. I did have surgery followed by chemo. But three other gallbladder cancer patients that I know of did not and they are gone. So don't accept the "nothing we can do" statement! You really do have to fight for treatment because it is not a common cancer and one that has poor treatment results. But several of us are still here, and we had the surgery. Another thing to watch for is seeding from the gallbladder tumour to other places in the body, especially the liver, peritoneum, omentum, pancreas.

Thanks Sharon Lee for mentioning this.

Cheryl

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Cheryl,

Very well said. Thank You!

Take Care
Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Sharon,

Thanks so much for sharing your thoughts. They ring so true for many of us. I too knew that surgery was my only hope and that was a major turning point for me. Even if I ended up with an unsuccessful surgery, what choice did I have? There was no choice. It had to be done. You and your husband felt the same way.

The trauma of the extensive surgery that your husband had will be with him for awhile. His body has been beaten up very badly and needs time to rest and recover. Pain will become tolerable at some point but might always be with him. His pain medication could be adding the constipation issue. My body lets me know when I have done too much and the scar tissue that the surgery creates isn't fun. He probably has surgical clips in him that sometimes if you move just right; they let you know that they are there. It does get better, it just takes time.

Sugars and fats are the enemy. His digestive track is different now and it becomes trial and error to see what works and what doesn't. I no longer eat 3 meals a day; I eat 6 meals a day (much smaller portions). It is easier on my stomach to do that. Sometimes I will eat more than I should and again my body reminds me of that.

Hope this helps!
Take Care
Lily

Sharon Lee
Posts: 4
Joined: Jan 2011

Your comments and advice help so very much. I am going to get him to watch the sugar and fats. He is so skinny now. He is 6'2" and 149 lbs. He used to be 210 lbs. He gets discouraged because he still has pain and is not the man he used to be. Prior to his cancer diagnosis he was a very busy guy. He is a lawyer, played basketball several times a week, and had many many hobbies. Now he is in recovery and he is coming along albeit slowly. Having said all that, we are enormously thankful that he had the surgery because it gives him hope and he wants to see his kids become adults - they are 13, 17 and 19.
Thank you both.

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Sharon,

Let him know that he probably will never get back to the 210 lbs mark. He will gain some weight back but not all of it. Digestive issues will be with him forever. He will find a new norm for himself. It is easy to get discourged when he was used to being such a busy man. He will feel a little lost sometimes. I ran at warp speed also and it is quite an adjustment. Heck, I'm still adjusting. When I try to do things like I used to it bites me. Somedays I feel like such an old woman and then other days I feel pretty good. We all live such stressed out lives that it is no wonder that we became ill. I can understand the hope of seeing your children become adults. My daughter was 17 when I was diagnosed and at that time I just wanted to see her graduate from High School. This year I'm proud to say I will see her graduate from college. Five years ago I didn't even know if that was possible. By the grace of god, my great oncologist and great surgeon I'm still here to see everything. Everyday is a blessing.

There are some great pod casts (workshops) on the CancerCare that you might want to check out.
websitehttp://www.cancercare.org/connect_workshops#past_workshops

Thanks for sharing
Take Care
Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Lauren,

So glad that you found us! I'm so sorry that this terrible disease has come into your mother's and your lives. Your mom is fairly young and as long as she has been fairly healthy she will be able to battle this beast. It is a long journey with many turns in the road but with good doctors, hope and faith she will be okay.

I had a very aggressive treatment plan of Gemzar and Cisiplatin. I went 4 days a week - 2 weeks on 1 week off for about 8 hours a day. I also had extra hydration given to me daily. I lost alot of weight, my hair, eyebrows and eyelashes. I ate small meals every couple of hours. Lean protein, vegetables, fruits and smoothies. Many people swear by juicing but after a few times I decided that smoothies were my best bet. Many people drink Ensure/Boost for the nutrition that they need. The only supplement that my oncologist allowed me to take was L-Glutamine. Many other supplements can interfere with the chemo treatment. Check with the oncologist before taking supplements. This disease needs to be approached with the whole body, mind and spirit philosophy. Exercise and meditation was very helpful to me. I no longer work as my career involved lots of travel and was very stressful. This disease changes many things in your life but sometimes for me I feel it was a blessing in disguise. Stress can be very hard on a person’s body and I now look at life quite differently.

Where are you located at? Sometimes there are people in your immediate area that can be helpful with information. I'm also in the business of connecting people when it is possible.

I generally don't speak with people via the phone but occasionally I will make an exception. Many people will take questions from their loved ones and post them for a response. Then they read the answers back and people are very comfortable with that. Many people like to know that they are alone in this battle. Let your mom know that she isn't alone and we are all here to help her. I do know as well as others how hard it is to find others with this disease, that it why we do this. I don't ever want anyone to feel as desperate as I did.

You are a wonderful daughter and I can tell you love your mom very much. You will become her advocate in this battle.

I will add your mom to my prayer list.
Take Care
Lily

Lauren21
Posts: 7
Joined: Jul 2011

Lily,

Mom has been relatively healthy until this point in her life. She went this morning to see a metabolic physician - he's a licensed medical doctor but also trained in natural & nutritional medicine. He gave her some supplements to start taking but told her that he would not make a full plan for her until he knew exactly which hemo drugs she'd be taking. We live close to Nashville, TN if you know of any survivors in the area. I hate to ask you to make an exception to your no phone policy, but the oncologist here in Nashville has left Mom with so very little hope. I don't think she has any specific questions (she doesn't even ask many of her own questions to the doctors), I think she just wantts to know that survivors are real. My sisters & I have told her about the discussion board & how so many are valiantly fighting the enemy but I wonder if she doesn't still doubt in her head that you exist.

So you actually took chemo several days in a row? The oncologist here in Nashville is recommending gemcitabine (which I think is same as gemzar) & cisplatin but just one day week for two weeks & then off a week. She has an appt August 8th in TX with M D Anderson for a 2nd opinion.

I'm glad you are an advocate for others & you are using your story to help strengthen & encourage others. If you'd consider talking with Mom, just once, I'd certainly appreciate it.

-- Lauren

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Lauren,

Sorry that I haven't posted in so long. I truly believe in Eastern and Western medicine. They both have their strong points.
The closet survivor that I know of to you is Maudsie. She is 3 years out and lives in Chapel Hill NC. I'm on the west coast.
Some oncologists will only spout statistics and give you little or no hope. If your mom isn't comfortable with her oncologist, she should get a second, third or even fourth opinion.

Yes, I did have a very aggressive treatment for what seemed like days on end. Gemcitabine and Gemzar are the same things. That chemo cocktail is pretty standard protocol for this cancer. No one that I have ever spoken to has had the aggressive treatment that I was given.

How did the appt at MD Anderson go? Some people have received treatments there that have posted on this forum.

If you would like to email me at LGregg6293@Aol.Com and put ACS-CSN in the subject line we can discuss setting up a time and #'s so that your mom can speak with me if she would like. You have to remember that if she says no she doesn't want to talk with me, you have to respect her wishes. You and your sister will support her any way that is in your power but remember that ultimately it is her decision.

Let me know how it is going.
Take Care
Lily

Lauren21
Posts: 7
Joined: Jul 2011

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

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Lauren,

I will be checking my email.

Okay is better than not good. At least you checked it out. It is important to get different opinions about treatment and then chose the one that your mom will be the most comfortable with and what will help her the most. Gallbladder Cancer is beginning to get some attention lately which is just a good thing. Insurance can sometimes be a nightmare.

What type of problems is she having with the stint? I sure that you are antsy because time has become a top priority. Every day that goes by without treatment in your mind means that those nasty critters just become more prevalent. This is a disease that will teach you patience and perseverance.

Take Care
Lily

Lauren21
Posts: 7
Joined: Jul 2011

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

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Lauren,

Got your email and I'm looking forward to speaking with your mom.

How long ago did she get the stint? Most of them need to be replaced. Your appetite is one of the first things to go with this disease.

Forty-eight years old is so very young. It is a good thing that it was caught even though it came out of left field for you both. She will fight; everyone that comes to this board is looking for answers and is either in the midst of the fight themselves or are supporting a loved one with their fight. It is a great place to talk with others and share information.

Praying for your mom and you.
Take Care
Lily

bjs
Posts: 23
Joined: Apr 2011

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

maudsie
Posts: 54
Joined: May 2010

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

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