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Gallbladder Cancer Stage 4

gwc345
Posts: 2
Joined: Apr 2009

Hi,

A week ago my mom was diagnosed with gallbladder cancer stage 4. I am looking for survivors. Anyone who knows a survivor. I know the statistics, the doctor has already given us a time frame, and the oncologist has told us to go for "quality of life".

If there are any survivors or if you are having successful treatments I would like to hear from you. What have/are you doing right? Where did/are you getting treatment?

Any information you could give me would be greatly appreciated.

Thank you.

justne
Posts: 3
Joined: Sep 2009

I see that you and some others have written about the Dr's not doing surgery. Why are they not doing surgery? When they found my mom's cancer they took her gallbladder out right away even thou it had already spread to her abdominal lining, belly button, lymph nodes and had brushed the liver. AS I'm sure many people have told you already keep get 2nd and 3rd opinions if needed. My prayers are with your family.

Terri

Tracy R.
Posts: 6
Joined: Feb 2010

The reason we were given was that the cancer had spread too much and that he has 12 months to live. When we heard after first round of treatment that the cat scan showed some recession and small amount of tumor shrinkage, the first thing my husband asked was if he could have the gallbladder removed. The oncologist stated that the chance of infection was a higher risk than not removing the gallbladder and that even if he took that chance that the prognosis would still be the same (12 months). We did have one other opinion before he started chemo and they said the same prognosis so we stayed with the closer oncologist. We contacted Mayo Clinic when we received the news on the cat scan and the present oncologist did not want to remove the gallbladder. Mayo Clinic asked for my husband's treatment regimen and told me that our oncologist was working outside of the box and they would not be able to the same aggressive treatment approach and that we should stay with her protocol at this time because, if it isn't broke - don't fix it - in other words since the treatment had shown some recession stay with the same. I asked about having my husband come in to see if they may consider removing the gallbladder at Mayo Clinic and they suggested going with the same treatment and waiting for the next cat scan in April first. I get so frustrated and scared because they act like a couple more months is no big thing...but to us it is! And we may not even be in this bad of a situation had the doctor's done a better job at finding what was wrong to begin with. My husband's first doctor appt. was in June of 09 with stomach pain. Many, many tests and being sent to the next "specialist", to find gallbladder cancer stage IV the end of October. He had a cat scan (upper and lower) that showed seeding in the right ascending, thickened wall in gallbladder and appendix that was enlarged - they scheduled him for colonoscopy and told us probably 70% chance it is colon cancer. When that was negative, checked for prostate cancer, urine track, so many tests that were always scheduled 2 weeks or more apart. One specialist told him that everything pointed to diverticulitis and gave a prescription for antibiotic and to take for one month and come back! We wasted an entire month going on that specialists say. So when they say to wait now, I panic and do not trust anyone's advice, so came on here to have someone tell me what to do next. Terri - THANK YOU for your prayers!! There is strength in prayers...
did your mother have stage IV also? was she given an original prognosis that she beat? hope that she is doing well at this time!

justne
Posts: 3
Joined: Sep 2009

All I can say is if you are not happy with your Dr. take your husband someplace else. Keep going til you are satisfied with what they have offered you in the way of treatment. I can fully relate with the wait and see that so many Dr.'s seem to say. It's fustrating on our end to not see our love ones getting seen more often. I will also say that I can understand their fear of infection. Sadly my mom passed away in Nov. and We feel alot of it had to do with an infection. She had a port put in for Chemo and it became infected. The Dr. and the infectious disease Dr.'s did not agree on this and my mom was sent home 1 week later with what we believe was an infected port. she was back in 1 week later and never left the hospital again until she passed away with many complications. I truly do not feel it was the cancer that got her I feel it was the infection that made things worse. So As I said keep going with your gut feeling. If you are not happy keep seeking out the best care for your husband. My mom was stage IV and was never given a prognosis.

Tracy R.
Posts: 6
Joined: Feb 2010

Thank you so much for your reply, it gives me the strength to go on. I was so sorry to hear of your mother's passing. It breaks my heart sitting here typing away and not knowing who is on the other end and what they have gone through themselves. Very, very sorry. Peace Be With You and Your Family. Thank you for remaining to come online and help others, I am sure that your mother is smiling down at you as you type away.

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

Hi Tracy,

So sorry to hear about your husband, This is one of the most difficult times in your life. Don't always believe what the doctor's tell you, trust yourself and get second and third opinions if necessary. I was given the prognosis of 2 weeks, 2 months, and if I was lucky 2 years that was in Dec 2005. That was 4 years ago and I never believed in my heart that I wouldn't be around to see my child grow up and have her own children. Sounds like he is receiving aggressive treatment for an aggressive cancer. I too had a agressive treatment. The fact that the turmor is shrinking means that the chemo is working. It does become a waiting game just to finally get a surgeon who will take a chance. I went out of state three times before they decided that I was a good enough candiate for a sucessfully surgery. My husband and I wouldn't take no for an answer even though every trip was heartbreaking. It took 11 months of Chemo before I could have the surgery. Then an additional three months of Chemo after the surgery. But it all was worth it to have my life given back to me even though it is a different life than the one I had. It is better. The Health Master is a great product. Fruits,vegtables, lean meats and fish are the way to go. The metal taste is from the Chemo and won't go away as long as you are receiving Chemo. I'm glad he and you are fighters because that is what you need to be to beat this monster. I love to hear that you have an oncologist that is working outside the box. You need to have a doctor right along side of you that once they know that you are willing to go to the edge, they will be right there with you. This disease will teach you patience and perserverence. Everyday becomes a blessing.
You and your husband are in my prayers.
Lily

Tracy R.
Posts: 6
Joined: Feb 2010

Lily50, thank you so very much for taking the time to write such a detailed reply. I hadn't told my husband that I was looking at discussion boards when I couldn't sleep, not knowing where to turn, but had to read him your post. He was very positive afterward and told me to go ahead and start mixing those darn organic veggies and fruits! He had been being a stinker about that...not much for trying new things. Wanted to stick to his hamburger and steaks too but have pretty much weaned him off that except for his spaghetti and garlic toast dinner that he has to have. We don't know where we're heading but as I stated before, we are fighters. With the not knowing, it is heart warming to read a reply like yours, to let us know that we are doing the best we can and to give us hope. My husband is in his 2nd round and another CT scan will be done in April - so if we hear more recession/tumor shrinkage - we will push and get other opinions on the gallbladder being removed as you did. After reading your reply for the umpteenth time, I know why you are a cancer survivor - to help others is so very apparent - as you have such a way with words and are so detailed that it makes one feel special. Thank you for your prayers - means so very much to us!! If you would like, visit our website and email using our contact page, if you don't mind me emailing you. Our website is: http://www.eaglecrestk9resort.com We own our own business so get to work together every day and play with dogs which is very therapeutic, especially for me as Mike sleeps a lot more than he used to, needs that daily nap or two. God Bless You Lily50

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

Hi Tracy,

I know that when I was the patient my mind and body were in a continual fog. After the first month of reading all the depressing news I couldn't take anymore information and just wanted to get through it. It has been quite a life experience that I never wanted anyone else to have to go through. Now I feel if I can help in any way, answer questions or just be there to support others that it is also part of my healing process. Sometimes I feel that the caregiver has more stress than the patient as they are watching the one they love deal with this awful disease.
Your husband will find that the farther he gets into treatment that it will be easier to drink those fruits and vegtables instead of trying to force down whole foods. Red meat isn't really a good idea as it is hard to digest. He is a man after my own heart, I could eat pasta and garlic toast everday. My doctor told me to just eat whatever I wanted as long as a ate. During the course of my treatment I lost 35 lbs.
Hope and Faith are two very important things. Being able to fight and go the distance is very important. Some days you won't feel like fighting but each new day will bring new energies to you both. He sounds like he is almost on the same course that I was. I got CT scans every three months, up until now. I only have to have them every 6 months. I'm a frequent scanner at my radiology department. I actually had a Liver Transplant Surgeon at UCLA do my surgery. He pioneered the procedure for the type of surgery I had. They removed my gallbladder, part of my liver, part of my stomach, lymph nodes and more.
My dogs helped me through the tough times also. My red golden retriever never left my side. A year after my surgery my dog got cancer and didn't survive.
You are so lucky that you can spend time together whenever he feels good. That is so important. I slept alot too. The pain medication that I was on contributed to being so tired.
Well off to your website.
Take Care and you both are in my prayers.
Lily

Tracy R.
Posts: 6
Joined: Feb 2010

Lily, I sent an email and just came back onto this site...weird, but the thing that sticks out is the loss of your dog. What was his/her name? I was so sorry to hear that after all you had been through that you lost your devoted companion.
Yes, Hope & Faith - very, very important. When we first heard the news, after hearing the words -"not operable", "no cure", "a year at best" - I was so lost and scared. I was standing outside with a dog in a play yard and started praying,asking the Lord to help my husband and myself, to be strong for Mike. It was an overcast cloudy gray day - as all winter days are here in Minnesota, but a few minutes into my prayer and the clouds broke and the sun felt warm on my face. I thanked the Lord at that moment - because I felt peace for the first time. It was like he was letting me know that no matter what everything would be okay - that he was there. I still get emotional and feel lost at times but think of that moment and the feeling that filled me. The sun was not warm just on my face - the warmth actually filled my body. It was the strangest feeling and I had never had that before.
God is with us - we don't always remember that - but God is with you Lily and helped send you to us.

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

Tracy,
I went to Mike's website yesterday because I was thinking of you both. I can tell your family and friends are very supportive and with the help of God,family and friends you both will weather this storm. We are never given more than we can handle, but sometimes we are not aware of how strong we really are.
My dog's name was Dreamstarz, she was my constant companion and was the most gentle dog I had ever had. We had no idea how sick she was, but how she felt never changed the fact that she was always by my side, if she wasn't trying to get as close to me as she could. I miss her but I do have other dogs that have risen to the occassion once she was gone.
The feelings of being lost and scared are common when you are in crisis. If you didn't love the person that is going through this with all your heart, it wouldn't bother you, but it does.
The Lord can touch you when you need him the most. It is important to ask for help when you feel that you can no longer be strong. The sense of peace that he can give is one of the most powerful gifts that you can be given.
I have listed the name of my Oncologist under Oncologist with experience treating gallbladder cancer, maybe you could share the information with Mike's oncologist. Sometimes the oncologists do share information and sometimes not. I feel that it can't hurt to ask and if it could be helpful why not. Give it a shot if you would like. My doctor is the greatest and I have had others do that with some success.
Rest is the best thing for Mike after Chemo as it takes a toll on your body and mind. Enjoy the days you can and work within the limitations of other days that maybe not so good. The bad days will get better.
Take Care
Lily

knj0198006
Posts: 7
Joined: Oct 2008

Okay Lily...I see you are doing the job that all gallbladders cancer survivors should be doing!!! Letting everyone know that we exist. I am a gallbladder cancer survivor and I have shared my story on here in the past. I celebrated 4 years cancer free on Feb 22 this year. I have a friend that I met through my doctor that was in Stage IV Gallbladder Cancer several years ago...the cancer has spread to the liver and intestines...her scans just came back clean!!!!

I also have a friend in Stage IV Breast Cancer...the tumors have melted b/c they did not remove the breast...the bone in the leg that the cancer had metastasized to has healed. There is evidence of the cancer in the bone in the back being in the process of healing!!!

I appreciate you being so faithful in responding to individuals w/your story!!!

Take care...keep communicating and letting everyone know there are Gallbladder Cancer Survivors!!!! There is hope and there is healing!!!!

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

Yes we do exist, even if we are few in numbers. It is very important for us to share with others as it can be quite a healing process, for all of us. I know that when you are in the midst of fighting this battle that it is all you can do just to get through it. The battle can be won but the war rages on. It is the most life changing thing that has ever happened to me.

Knudos to you on 4 years of cancer freedom. I had my last treatment in March of 2007 so I count from that point not my original diagnosis in 2005, three years for me cancer free. Clean scans are a blessing.

My sister is in the last week of her radiation for breast cancer and we are truly blessed as a family to have weathered these constant storms but as a family we are even closer now.

Family, Faith & Hope are what will get you through.

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

Your Mom is in a better place and no longer in pain. I'm sorry for your loss but God's hand reached down and pulled her up to be with him. I'm so glad that you are supportive to others on this board and working through your grief. It takes a very strong individual to do something like this. I agree with Tracy, your mother is smiling down on you and is very proud of you. I agree with you about the infection. My sister too had an infection along with an allergic reaction to her port. The doctor's don't tell you about this because it doesn't happen often. My sister made the doctor's remove the port as she knew her own body and once it was taken out the infection went away with antibotics. She completed her Chemo directly into her veins. She was lucky and I feel that you have to be your own advocate for your treatment. You are giving excellent advice to others so I hope you will continue to do so.
Take Care
Lily

FriendoftheFamily
Posts: 3
Joined: Feb 2010

Hello to all of you,

My wife was also diagnosed with stage 4 gall bladder cancer. It has spread in to her liver and possibly into her colon. It is also in the lyph node outside of the gall bladder. We got second and third opinions and was given a very grim prognosis and is not operable at this time.We are not ready to accept this ! She is only 47. Through this experience I have been learning every possible thing that I can do to help her. I have been keeping a journal every day of her treatment and also of her symtoms. What I have learned is that diet is a big part of keeping her pain low. I have put her on a special diet of every food that fights cancer. STAY AWAY FROM FATTY FOODS! Foods that are high in fat will cause pain. Fruits, vegetables, fish, lean meats, yogurt, and fiber are all good. Be careful with foods that cause gas. Prevacid and Gas X help to keep the pressure down. The gas pain seems to be her biggest complaint. She is recieving chemo that consists of GEMOX and Cisplatin. She is also taking another drug that is a protocol. If we find it to be something that works, I will share the data with the world. She has only had two sessions of chemo. Her chemo regiment is once per week for two weeks and then one week off. We will be monitoring the tumor marker in her blood work to see if it is showing signs of progress. After two months, she will have another PET scan done to see if the tumor has shrunk. Our hopes are to shrink the tumor down to get her to a point to where she is operable. She will then have the gallbladder removed along with part of her liver, the lymph node and possibly a partial colonoscopy. If any of you would like any further information, please feel free to contact me, and I will be happy to share.

Let's all be friends for the cure!

mttallo
Posts: 1
Joined: Feb 2010

I was diagnosed in the beginning of December with inoperable gallbladder cancer that has metastasized to my liver and bile ducts and was given "2-3 good months to live and 6-9 months total" even though I had no symptoms. At that point, I told the Dr I had to make it at least two more years to see my son graduate from college. I am still asymptomatic and will be starting chemo with Gemzar and Xeloda today with the hope of shrinking the tumors enough to become operable or at least extending my life to see him graduate.

Since I am 61 and can't afford to stop working since I am the soul support for my son and I, of course I am nervous about starting the chemo and it has been very helpful to read your posts of chemo helping.

FriendoftheFamily
Posts: 3
Joined: Feb 2010

From what I have experienced so far, the doctors all seem to give worst case scenario. I think that they do this so that they don't get your hopes up. Have you had a 2nd opinion? 2 years in not enough to ask for. You are still young and you still have more life to live. Do not give up! Be positive. Change your diet. Do you have a good support group? Through my experience with dealing with my wife's cancer, I have decided that I would like to become an advocate for others also. Please feel free to contact me and I will share all that I have learned with you.
familyfriendadvocate@yahoo.com

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

Hope all went well today. I think that the first day of chemo can be one of the hardest days of your entire life. It is so stressful as there are so many unknowns at this time. The doctors will give you information based on statistics that can be old and outdated.

You sound like a fighter and this will be the most important fight of your life. I'm glad to hear that you have a goal to see your son graduate from college. I too had a goal of seeing my daughter graduate from high school and sending her away from home to college. I was not going to let any disease or doctor come between me and that goal. I'm now looking forward to her graduating from college in the next year and a half.

It will be hard to continue to work through this. This disease will take all of your energies to beat it, but I give you alot of credit for trying to do both.

I didn't work, but luckily I had STD and LTD benefit coverage and then was able to go on Social Security. Is that a possible option for you? I was 49 years old and on Social Security. Who knew that it was even possible

Take Care, your in my prayers.

Lily

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

Hello,

I'm sorry to hear about your wife. The grim prognosis that it is not operable at this time doesn't say Never, Just not right now. My oncologist told me that the Chemotherpy is the Science and the Surgery is the Art. It is important to remember that if you have success in shrinking the turmor with Chemo that surgery can become a viable option for you down the road. Hope and Faith will keep you going. I was 47 when I was diagnosed and I can proudly say that I will be turning 51 this year. I'm a firm believer in writing things down as things happen so quickly that you can have days when you don't even remember what happened the day before. Your information that you are sharing is very helpful. This is a disease that seems to be coming to the forefront and any information that we can give each other that can help is well worth the time spent sharing this information. We need to be our own advocates for this disease.

Thanks for sharing!
Count me as one of the friends!
Lily

dlialios
Posts: 2
Joined: Mar 2010

Hi-
I am new to discussion boards and am hoping that Lily50 or another survivor will see this and reply back letting me know how to contact them. My mother in law was just diagnosed with gall bladder cancer that has apparently spread to her stomach and kidney. We are not sure what to do next, since the doctor in the hospital seemed to say there is no game plan. We don't want to take that advice right off the bat without looking into some things. Lily50 thanks so much for taking the time to post your experience, and thanks to all other folks posting on this board. You mentioned that you listed your oncologists name in Nevada somewhere but I am inexperienced with these boards and don't know where to look for that information. We are in Arizona and would definitely contact him if you can tell me where to find his name. Thanks

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

Good afternoon,

So sorry to hear about your Mother-In-Law. If you would like to just post on this board that is fine. If not you can use the CSN-Email system. Or if you would prefer just send me an E-Mail at LGregg6293@Aol.Com. That goes for anyone else who would like to talk.
It has been my experience that the doctors in the hospitals like to hand you off to others, instead of getting involved. They just don't have the time, which is understandable.

Here is the information regarding my Oncologist:
Russell P Gollard
Cancer & Blood Specialists of Nevada
58 N. Pecos Rd.
Henderson, Nevada 89074
702-822-2000

Where in Arizona are you located? There are some good facilities in both Phoenix and Tucson.
I grew up in Tucson and my daughter was born in Scottsdale. My sister is undergoing treatment in Tucson right now and she has good doctors there.

Hope this helps you and ask me any questions you want.

Take Care.
Lily

dlialios
Posts: 2
Joined: Mar 2010

Lily, you have no idea what a blessing it is to have someone out there who has been through this and is willing to take the time to correspond with others about this. Thank you so much for responding and for your Dr.'s information. What a strange coincidence that you grew up in Tucson, since that is where we live, as well as my mother in law. Actually, it is probably not a coincidence, perhaps it's a sign that we were meant to find you. I am sorry to hear that your sister is undergoing treatment (for cancer, I am assuming?). We will keep her in our thoughts and prayers, and I bet you are a huge support and inspiration to her as you are to those of us on these boards. I had checked through all of your posts and found your email address yesterday, and passed it on to my sister in law Stacey. I believe she emailed you directly, I apologize for the bother... we were just getting really anxious and weren't sure how long it take to hear back from people on these things.
I will keep you posted. Thanks again-
Deanne

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

Good afternoon Deanne,

Thanks isn't necessary, I know that in the beginning for me it was very difficult to try and find information out there. I love to be able to help if I can.

It really is a small world and my sister is battling breast cancer and she is doing well.

I responded to Stacey's Email this morning and I can tell that you all are willing to go the distance.
Be Patient keep your Faith and never let go of your HOPE.
Take Care
Lily

katsie
Posts: 1
Joined: Mar 2010

Hi Lily

I have been following this feed for a while now and would like to post on this site.

A little background on me: I had a gallbladder attack in March of 07 and it was removed only to find out it was full of cancer (adenoma, signet ring). Anyway after a PET scan that was mis-read and 2 cat scans later, I was once again operated on May 1/07. The did a liver resection and removed some lymph nodes which were cancer free, as well as removed tissue surrounding the previous gall bladder removal. They said they got it all but because of the original surgery they advised that I have chemo (gemzar and xeloda) for 4 months and a 6 week course of radiation. I did that and completed my treatment in December of 07. So far so good. However in December of 09 they found a rather large mass in my pelvis. (Note: they missed seeing the turmor on the two previous scans although if they had looked it was there to be seen.) They originally thought it was ovarian cancer, but after surgery to remove the mass if was found to be a return of my gallbladder cancer. So now it's back to the "9 months to live or maybe a year if you do chemo".

I have been actively persuing a new treatment called a "Chemo Bath". I don't know if I'm a suitable candidate for this new treatment but I have to keep my hopes up. I do know that the Doctors have all told me that the chemo won't save me, just give me a little extra time. At this time of my life (64) I'm too healthy and stubborn to accept this. I have granddaughters to play with.

Hope to talk with others with this disease.

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

Hi Katsie,

Your battle is everyone's battle who is dealing with this terrible disease.

I'm so sorry that your cancer has returned. Sometimes when you hear those words you just don't know what to do. With everday that goes by you try not to think about it returning but in the back of your mind it is a dark cloud that just hovers.

You have won the battle once before, but the war rages on.

I'm a concerned that your scans had been mis-read. Hopefully you changed facilities and now can have confidence in the radiologist that is interperting the scans. I feel fortunate that I have seen the same tech's and doctors regarding my scans. When I went to UCLA for my surgery they repeated all scans since they said my previous scans were unreadable. I think it has to do with which surgeons work with which facilities, because my doctors in Nevada felt that my local scans were fine, but in order for me to have surgery I had to repeat them.

Worst case is always what they present and I can tell that you don't believe what they are saying. Good for you! I really think that the doctor's just play it safe cause they really don't know what might happen.
This is like a game of craps - throw the dice, see what happens, what do you have to lose? There isn't really a choice.

Have hope, faith and family support and don't give up. You have a right to see your grandchildren grow up and be able to enjoy them.

My brother-in-law has had the "Chemo Bath" treatment for his bladder cancer and he is still with us. He was given a "Short Time" frame also and just keeps battling on. He has struggled for 10 years on again, off again but he says only God can tell him when to go, not doctors.

They are coming up with more and more treatments so we have to have hope.

I'm glad you are healthy and stubborn and I know that you can go thru round two.

Let us know how it is going and keep us informed. If we don't share with each other we can't help each other.

Take Care, you are in my prayers.
Lily

maudsie
Posts: 54
Joined: May 2010

Hello Katsie. I have been reading the posts here, and have already communicated with Lily on this site. I read your post, however, and your case struck me as VERY similar to mine....at least at the start. i was diagnosed at age 61 with GBC, July 2008, following a routine laparoscopic removal of my gall bladder for some rather vague and seemingly not too serious gallstone symptoms. A larger follow-up surgery was done, the usual one we all seem to get: an extended liver resection and lymph node dissection. My lymph were all normal, no cancer. There was some direct invasion into the lower liver from my gall bladder, but all was cut out during surgery and margins were negative. No other cancer or suspicious sites were seen, bile duck OK. I then underwent, like you, chemo (gemzar and xeloda) and radiation. Every lab, every CT scan, has been normal since then. No cancer. I feel fine. All labs normal, I never had an elevated CA 19-9. I am getting scanned every 6 months, labs every 3 months. My next scan is set for the end of August. I have started feeling more optimistic about my chances for beating this thing... "so far so good" as you say...until i read your post. You were good for two years and...whoops, here you are again, looking at a return of your cancer and you are checking out what is next for you to do. I am your age, I will turn 64 in October, and I have a lot of life i still wish to lead. I would like to know more about you, where you are, what treatment you decide upon, and how you are feeling in general. i am thinking of you and wishing you the best. Please let me know how you are doing!

Lin2Kimi
Posts: 4
Joined: Mar 2010

I too have just been diagnosed with gall bladder cancer stage 4. I am only 56 years old. My husband and I are at the end of our rope with trying to figure out if we are following the right course of treatment. Last week I started chemo of cysplatin and gemox. The cancer has spread to part of my liver and gastrointestinal track and lymph nodes. We went to Standford Hospital in Palo Alto, CA and were told it is inoperable. Please stay in touch with us as we are in the very same situation and treatment regime. We too pray that my tumor shrinks down to where it is operable and that is our prayer for your wife as well. Who is your Dr? All our blessings to you and you beloved wife.

Your friends....let's fight!

OregonKeith
Posts: 2
Joined: Apr 2010

Hi all,

My wife was diagnosed with GBC on Feb. 19th and like everyone else was given only weeks to live. She is 44 yrs old and determined to fight this disease. The cancer is around the gall bladder and also in the lymph nodes. The pet scans do not show the disease anywhere else. For now it is considered inoperable. Our doctor, Dr. Orloff of OHSU, said she would resect the tumor if the cancer responds to chemo. Her CA19-9 was normal, though the doctor said that mean the cancer cannot be track with a blood test. The team of doctors at OHSU said the pathology of my wife's cancer cells are unlike any they have seen before. Not sure if others have had a similar diagnosis for the pathology but would be interested to know if you did. We are due to start the first chemo treatment on Sunday. However, this week she needed a stent to open the bile duct closed by swollen lymph nodes which caused her to become jaundice. The stent procedure(ERCP) went successful, but after the procedure she has been very tired and only able eat very little food. I am worried she will not regain her appetite, especially after chemo begins. We are also worried about the side effects of the chemo (Gemcitbine and Cisplatin) and if they will affect her. She is also in considerable pain in her back right shoulder blade area. We are using advil and oxcycodone to manage the pain, but at times it seems nothing works. Are there more effective meds others have used to control the pain? I also truly appreciate everyone, especially the survivors for posting to this site as it gives my wife hope that this disease can be beat. I wish everyone the best in fighting this disease and welcome anyone to email me or post to this site if they want more details on how we are treating this disease. I don't have any answers beyond what is posted on this site, but I would be more than glad to explain how we arrived at our treatment protocol. My email is keithg@focussemi.com

Take care and fight!

Keith

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

Hi Keith,

So sorry to hear about your wife. This is a terrible disease and the road to recovery is quite a battle. Your wife is so young, but the good thing is that she is so young. I was diagnosed at the age of 46 and I will be celebrating my 51st birthday this year. You can fight this disease but it will teach you patience. The doctors always give you the worst case sceanario. The statistics on this disease are outdated. It sounds like it hasn't spread far and that is a good thing. For now it is considered inoperatable doesn't mean never, just not right now. The chemo has to shrink the turmor and that can take time. Others have had the ERCP procedure, with jaundice it is all part of this disease. Her appetite will change and she will have to learn what works for her. Small meals are best with fruits and vegtables and lots of water. Everyone has different side effects from their chemo cocktail. My cocktail was the same as hers. It worked for me! You need to tell her doctor that the pain meds aren't working for her. They will tell you that Tylenol is what you should take when you are receiving chemo. Oxcycodone didn't work for me but Vicodin did.

Good luck on Sunday, it is a day of blessings and you and your wife will be in my prayers.
Hope and Faith will carry you through.
Take Care
Lily

FlDino
Posts: 11
Joined: Nov 2009

My wife went to the ER with back pain. Turned out she was also jaundiced which we didn't notice until under the lights of the ER. She also had a blocked bile duct and underwent the ERCP. She came out of that intibated, but only for a day. They told us it was inoperable and they didn't consider chemo or radiation. Then they took her gallbladder out and it was downhill from there. Time from the ER to death was 11 1/2 weeks. Not even the 3 months the oncologist told us.

Your wife still has her GB? The stent will help the jaundice but it will have to be replaced in 3 months or so. Make sure taking the GB out, if they consider it, will actually HELP. I swear it hastened my wife's death. Also being jaunduced is an indicator that it is not good. Loss of appetite, then hardly drinking any water, then tired all the time. From the time I finally got my wife out of the hospital she lasted only 7 1/2 weeks. Have you talked to anybody about Hospice yet? They will control the pain, in my wife's case, with pain patches and oxycodone.

Though some apparently have beaten back GB cancer for a time, most I read about, including my wife who your wife sounds more like, have not. I do wish you all the best wishes and hopes but the reality is not good. Talk to Hospice in your area. They can help make her comfortable and give support for you.

ahnamarie
Posts: 1
Joined: May 2010

Hi.
This is my first posting.
My Dad was diagnosed with stage 4 gbc about 3 months ago. The Oncologists at Mayo Clinic said that they could treat him with chemo and radiation, but those treatments would not save his life. They said that he was looking at about 4 months if he does nothing and 8-12 months if he does chemo and radiation. Dad chose to see a Naturopath and we were hopeful that her many remedies would help, but now 3 months later, a CT scan shows that his tumor is bigger than it was. He feels that this 3 months was wasted and is planning to start chemo and radiation next week. He will also see another Naturopath who administers therapies which work to protect the immune system from the chemo as much as possible. Has anyone else heard of this combo treatment? Whay type of chemo drugs have been successful? Any information is appreciated. I just don't know where to look and I am unable to get any flicker of hope from a Doctor.
Thanks

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

Hi

I'm so sorry about your Dad. Doctor's always give you information based on statistics. Don't belive them. I too was given a short time frame and I'll say it over and over again. They were wrong. Cancer isn't cureable but you can live a happy life thru this disease. I'm glad to see that he looked at his options and chose a path. Chemo does shrink turmors as long as it is a correct chemo cocktail. Chemo is a posion but with turmors that is the course you have to take to get it under control. Then there is surgery also. When you put your body thru something such as this course of treatment it will compromise it. I am a firm believer in East meets West medicine. Each person is different and the whole mind, body, spirit approach works for some. My chemo treatment was Gemzar and Cisiplatin. I endured it for 15 months with surgery in between. No radiation as my liver was already compromised. My diagnosis was in 2005 and I am here to still talk about it 5 years later. Keep your Hope and Faith. It will carry you thru.
Your Dad will be in my prayers. Take Care.

wa123
Posts: 1
Joined: Jun 2010

Hello

My mother in law was diagnosed with Stage 4 gall bladder surgery after removal 2 months ago. She was given six months to live. She is undergoing 7 treatments of radiation. She is undergoing her fourth today.

She is trying to remain positive and would love to speak to any survivors of this particular cancer. It had spread to her liver and blood.

Do you have any advice?

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

Good afternoon,

I'm so sorry that this terrible disease has touched your lives. Try to stay positive and never lose your hope. Don't believe the statistics, they are outdated. I too was given a short-time frame and five years later I am still here.

I have been told that radiation sometimes is harder and sometimes easier than chemo. You didn't say if she was also going to undergo chemo treatments also? My cancer had spread to my liver also therefore I had no radiation, but it wasn't in my blood. There are many good doctor's out there you just need to find the right one. If you let us know what part of the country you are located in I'm sure you could receive some good advice from others all across the US who are currently receiving treatment or have completed treatment. Let us know we are here to help if we can.

Take Care
Lily

tnacnud1
Posts: 1
Joined: Jun 2010

Hi. I'm so happy to read about your story. My Dad of 49 yrs old was just diagnosed with gallbladder cancer in march during a regular gallbladder removal. He had a tumor in his gallbladder which protruded through the 1st layer of the membrane wall. He then had another surgery to remove part of the liver and lymph nodes around the area. He is currently going through a 4 week radiation and has chemo everyday.. He looks alright, but you ccan see in his eyes that he is tired. Is there any information you can share with me so I can help my Dad fight this? I'm in the military and need to know where we stand so I can decide what to do.. Thank you so much and God Bless.

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

Hi,

I'm so sorry to hear about your dad. He is young to have such a diagnosis. Your father's story is similar to others. More and more people are being diagnosed with gallbladder cancer after routine gallbladder removal. Did they say what stage it was? It sounds that he was lucky to have good surgeons that acted quickly with a second surgery. Radiation and chemo at the same time sounds very aggressive. He must be a very strong man to handle such intensity every day. This disease is very tiring and can wipe you out physically and emotionally. It is very important to stay hydrated. You need to flush these toxins out of your body as quickly as possible. It will help you feel better. Hopefully your Dad has a good support system with family and friends as this is very important. Let us know what area of the country he is in so that anyone who is in the area might be able to help. Posters on this forum, are throughtout the entire US, Canada and International too. Just ask whatever you feel you need to know and I'm sure someone will respond or contact you with E-Mail addresses so you can chat directly.

Thank you for your service in the miltary! Your Dad is very proud of you!
Take Care
Lily

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

Hi: This is the first time I've posted on this website. Greetings from Ontario, CAnada. I have just been diagnosed with Stage IV gallbladder/liver cancer following routine laparoscopic surgery to remove my gallbladder (seems to happening a lot according to this website!). The surgeon observed a "mass", and removed it plus a lot of surrounding unaffected tissue. Unfortunately (or maybe fortunately as you'll see ) the surgery went wrong - my bile duct was nicked and the sutures on the liver came undone. It was a day surgery, I was sent home, but had to return the next morning, luckily as it turned out as I was bleeding profusely internally and had to have 6 transfusions. Anyways, I had a 2nd surgery whereby the surgeon cleaned things up and removed some small nodules (malignant). I was in critical care for 9 days. I didn't find out about the cancer until one month later when I met with the 2nd surgeon. I can't start treatment until the incision heals completely and the oncologist is uncertain at this time what the treatment will be - aggressive chemo possibly to get the "seeds". I meet again with the oncologist June 21 after he has assessed CT scans I am having done June 11. I have not yet had a PET scan.
So, things appear, to me, to be moving very slowly. I want to get things started so I know where I stand. But the oncologist says I am "young" (66), healthy, and have a very positive attitude. I know one thing - I am going to start eating very healthful foods from now on, avoid coffee, sugar (that will be very hard!), processed foods, for example. I am taking all sorts of vitamins and minerals (Vit E, selenium, turmeric, cinnamon, Korean ginseng, Vit D) that I've heard can help. I can't drink milk luckily which creates mucous that cancer cells apparently thrive in. Deep breathing to get more oxygen into my body will start once the incision has healed. And I have wonderful supportive friends.
What are other people doing?

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

Hi Jan in northern Ontario: Does you husband have his treatment up there or does he go to cancer centres in southern Ontario? Certainly the one here in London is very good but as it covers a wide area it is busy! Nevertheless, I am still awaiting a treatment plan because my incision has not yet healed. It is frustrating but in the meantime I am getting a lot of reading done. One thing I keep on hearing is that chemo (especially high doses of chemo) may not be the answer as the success statistics are not great. But low doses combined with proper nutrition, etc. (an integrated approach) can work well. Not sure what I'll go for once the oncologist has put together his team and the team makes recommendations. It is frustrating to not be doing anything, however (except positive thinking!).
So, how was your husband diagnosed? through symptoms or during surgery?
I will certainly track down the books you recommend. I do have some (e.g. 50 Fifty to do to Beat Cancer, etc.) and have several friends who have made it through, one with pancreatic cancer, and they are an inspiration.
Please keep in touch.
Cheryl

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

Welcome to this forum! I'm sorry that you are both dealing with this disease but I'm glad you found each other.
See Cheryl, I told you that you would find someone in your area. Since treatment is different in Canada it is great that you can relate directly to the medical treatments there. Even though everything is similar regarding approaches to treatment there are differences and it can be quite imformative to read what steps others are taking to beat this disease. This disease has been relatively unknown and has only come to the fore-front recently.
We are here to help in any way we can. Just ask and someone will respond.
Don't lose your Hope or Faith. It is what keeps most of us going.
Take Care
Lily

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

Thanks, Lily! Jan told me about an internationally-known gallbladder cancer specialist in Toronto that her husband Don saw when he was first diagnosed. I'm going to try to get an appointment with him if I can for a 2nd opinion (not as easy in Canada I'm afraid - there aren't as many doctors here and places are very far apart and it takes awhile to get an appointment). The surgeon I saw today told me that gallbladder cancer is rare in Canada and thus not well known (unlike breast and prostate cancers). So, I'm afraid many oncologists are not as familiar with what is being done as they could be. This website is a real godsend!
Cheryl

sharon65
Posts: 4
Joined: Jun 2010

My 26 year old daughter was recently diagnosed with Stage 4 Gallbladder cancer. What a blessing to find this site and hear that some people are beating this. The statistics on the web and that doctors tell you are so grim. She's been told that the cancer has spread to her liver and lungs and that she has maybe a year. She's started chemo and has an amazing attitude. Her gallbladder was removed immediatly. Thanks everyone for sharing your stories. It does help to hear that some people have lived for years after diagnosis.
Sharon

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

Welcome to our little community Sharon!

I'm so sorry that this has happened to your daughter. She is so young, probably the youngest person that I have encountered with this disease. The good thing for her is that she is so young and probably was in good health before this diagnosis. I say it time and time again that the statistics are outdated and are really quite grim at best. You have to have Hope & Faith to carry you through this fight for her life. It is good that the gallbladder was taken out and was that when they determined that she had this cancer? What part of the country are you located at? There are people from all across the U.S., Canada and International also. We are all willing to help you with recommendations and support thru this difficult time. It is so helpful to find someone in your area or close by that has already experienced some of the roads that you and your daughter will be traveling. Talk to us about anything and we will try to help you and your daughter in any way that we can.

Take Care. I'm praying for you.
Lily

sharon65
Posts: 4
Joined: Jun 2010

Hi Lily,

I'm in Indiana, but my daughter is in Florida. We're trying to work out a way to bring her home to be with us but right now it's not possible. She's a fighter, but she has a number of other health issues. Unfortunately she wasn't in good health before her diagnosis. Still, she's tolerating the chemo pretty well. Tough weekend--we've been talking to her siblings about the diagnosis. Thanks for keeping us in your prayers. You are in mine as well.

Sharon

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

Hi Sharon,

Since you are in Indiana and she is in Florida does she have someone with her to support her? There are some good facilities in Florida. I know as a mother myself I would want to be near my daughter if she was going through something like this. But sometimes it isn't possible and as long as you know that someone is looking out for her best interests then you have to put your faith in her, that other person and God. If she has lived in Florida for awhile and has had other health issues then she probably has some very good doctor's looking out for her. Chemo is never easy and some days will be better than others. It had to have been hard letting the rest of the family know. You are a strong women and you sound like you have a very loving and close family. I agree with Cheryl on the note about fruits, vegetables, and supplements. Smoothies also become a way of life for most of us.

You, your daughter and family are in my prayers.
Take Care
Lily

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

She is young and healthy and has a good attitude. She can beat this thing. Check out some of the health strategies in this discussion forum like eating lots of vegetables and fruit and taking appropriate supplements even while doing chemo. I had the tumour cut out of the liver when they removed the gallbladder with its tumour (you can lose a lot of liver as it is very fast growing). You/she must be proactive even aggressive about treatment, and if you are in the States (I'm not) go to the best doctors possible. Keep us posted. We're in it with you.
Cheryl

sharon65
Posts: 4
Joined: Jun 2010

Hi Cheryl,

My daughter has always been a healthy eater and very aware of nutrition. She doesn't feel much like eating but says she's forcing herself to keep from losing weight. She's very petite anyway. Are there particular types of supplements that are recommended? Thanks for your concern.

Sharon

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

Hi: I drink lots of healthy smoothies (made with good quality whey protein powder, soy milk, any fresh or frozen fruit I happen to have around), as well as the bottled meal replacement drinks (I drink the low sugar ones) when my appetite is poor - they are all full of nutrients and some even are for putting on weight. As for supplements, I looked at reports online very carefully (I'm a botanist and feel we are not using plants for healing as much as we should; after all, taxol for breast cancer is from the yew tree, periwinkle is used to treat leukemia) and here is what I take (this is not to say that your daughter should take them - always let the doctor know what you are taking): first and foremost, paw paw in pill form (only one disributor, Nature's Sunshine) which I take 1 pill 4 times a day with meals; mangosteen juice, 2 tablespoons twice a day with the paw paw morning and with dinner (a fruit that has the highest levels of anti-oxidants of anything and works synergistically with paw paw) (there is also a pill form); selenium; milk thistle (to help the liver); Omega 3; turmeric 3 times a day BEFORE meals; papapa enzyme 3 times a day BEFORE meals; green tea extract (or 1-3 cups of green tea) 3 times a day before meals. I was also taking extra zinc but don't want it to compete with the paw paw. And of course a good multi-vitamin and probiotic. There are several very good books on supplements for cancer. I only chose the supplements that couldn't hurt me and I have told my oncologist I am taking them. Apparently, the paw paw can even be taken during chemo but that is up to the medical oncologist to approve. Lots of fresh fruit and vegetables are key though.
Keep us posted on your daughter's progress.
Any one else out there into supplements like these?
Cheryl

maudsie
Posts: 54
Joined: May 2010

Hi Sharon, like the others, I am surprised to hear of someone so young with GBC. And I am so sorry! However, as was pointed out, she has her youth in her favor. I want to underscore the suggestion that you act immediately to make sure your daughter is seen at a large, prominent cancer center by docs who are very familiar with gall bladder cancer, who know the latest treatment options, have surgical and medical expertise, and can put their knowledge to bear in your daughter's case. The statistics are not pretty, but they are getting better and better all the time, not everything we read is up-to-date. Please let us know how things are going!
Maudsie

sharon65
Posts: 4
Joined: Jun 2010

I'll keep you in my prayers, along with the others here who are fighting this awful disease. My daughter is tolerating her treatments well so far and I'm just amazed at her attitude. It's too early to determine if the treatments are helping, but she is definitely fighting. I appreciate all the support and info everyone posts up here.

Sharon

Helenab
Posts: 3
Joined: Jul 2010

Hi,

My mom has been diagnosed with gallbladder cancer. Her illness is in a very advanced stage (what in medical terms is known as T4). Her name is Helena and she lives in Ecuador.

She is always been a very healthy person. She has not shown any of the symptoms related to her condition. The cancer was discovered after she noticed a bump in her abdomen, one week ago. She was taken for surgery yesterday. They extracted her gallbladder, part of the liver and the lymph nodes related to the gallbladder.

The surgeon suspects metastasis has taken place. He has given a rather dire prognosis, initially advising that no further treatment was warranted and, in short, that her cancer is fatal. Then, after our requests, he advised that without chemotherapy/radiotherapy her life expectation is of only two months, and with these therapies from 4 to 6 months in the best of cases.

It was very encouraging to find this forum and the histories of GBC survivors. I hope everybody here who suffers of GBC or has a loved one in such circumstance will find healing.

Maria

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

Hi Maria: Greetings from Canada. Do not despair about your mom and do not give up hope. I was diagnosed with Stage IV gallbladder cancer (same as T4) in mid-April 2010. They did the same to me - took out my gallbladder that had a 4 cm tumour protruding from it to the liver, cut out a chunk of liver, as well as some nodules on the upper intestine - all cancerous. The prognosis of course was not good. BUT ... I had an MRI last week and the results came in yesterday. No sign of any malignant tumours from the base of the lungs to the pelvis - only a non-cancerous tumour on the liver called a hemangioma and some cysts. That doesn't mean of course that the cancer has gone and that there aren't any cancerous cells or small cancers that can't be seen around somewhere. I suspect they will want to do some chemo on me, too, but I have to wait for the surgery incision to heal which has taken 3 months. So, don't let the doctors give your mom that kind of prognosis! Tell her to fight it and get as healthy as she can with good food and a positive attitude.
Interestingly, gallbladder cancer rates are highest for women in the High Andes of Ecuador and Peru. I've been to Ecuador several times and loved it very much.
Cheryl

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