Gallbladder Cancer Stage 4

Lily50 said:

Your Husband
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

Gallbladder Cancer Survivor
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 said:

Friends
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

Mother in law just diagnosed -Lily50 please contact me
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 said:

Your Mother in Law
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

Thank you so much
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

FriendoftheFamily said:

Treatment Option
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!

Gall Bladder Cancer Stage 4
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!

katsie said:

MY BATTLE WITH STAGE IV GALLBLADDER CANCER
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.

Your Battle
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

OregonKeith said:

GBC IV
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

Your Wife
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

My Dad has it too
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 said:

Your Dad
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.

Gall Bladder Stage 4
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?

wa123 said:

Gall Bladder Stage 4
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?

Your Mother-In-Law
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

Lily50 said:

Your Dad
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

Gallbladder/Liver Cancer Stage IV
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?