Gallbladder Cancer - 2012 (Any Stage)

Ginab1959

hillaryjoRN said:

just wondered how everyone
just wondered how everyone is doing??
mom just finished up with radiation today! she is looking forward to the month off she has before starting with 4-6 months of Genzar. so far so good, she tolerated the radiation and xeloda great with just alittle nausea and fatigue!
thinking of you all on this journey! Hillary

Your Mom
Hi Hillary
I was on Xeloda for 6 mos. Watch your Mom's feet in particular. My feet got really HOT and they peeled very badly. The chemo settles in the feet and hands thats what causes it. It felt good to soak them in a bucket of cold water. There were days when I had a hard time walking. Gina

Jean160

Ginab1959 said:

Your Mom
Hi Hillary
I was on Xeloda for 6 mos. Watch your Mom's feet in particular. My feet got really HOT and they peeled very badly. The chemo settles in the feet and hands thats what causes it. It felt good to soak them in a bucket of cold water. There were days when I had a hard time walking. Gina

Hello to my posting family
I was just reading posts from the stage IV GB site as well as here. So many of you have great positive attitudes and I agree we have to seek out physicians that give us hope and encouragement. Yeah, yeah, yeah, the statistics ..... so I wish someone would quote statistics from the last 5 years instead of bringing up the old ones. I really wish I would see some GB studies using targeted therapy from gene mapping. It is certainly going that way with other cancers (ie breast, lymphoma, etc). So close I hope.

Cheryl, it was refreshing to read that you are an avid birder. So am I. We have recently taken this up again as our kids have gotten older. It has been as easier activity for me given this last nasty year (2011) with chemo. We used to go for really long hikes- even backpacking down the Grand Canyon in summer of 2010. Right now I just like the feel of a casual walk with lovely bird sounds (grateful that cisplatin did not damage my hearing as it could have been a side effect (yeah..didn't happen). I had a scan today (yuck... I hate waiting for results). I have had an allergic reaction to the dye so I have to take a big dose of prednisone beforehand which I hate. But your birding hobby cheers me up. If all goes well, we are planning a birding trip to Canada next spring for a warbler migration. Maybe you know of good spots? God Bless to everyone and take care. Jean

Jmcmatt

Jean160 said:

Hello to my posting family
I was just reading posts from the stage IV GB site as well as here. So many of you have great positive attitudes and I agree we have to seek out physicians that give us hope and encouragement. Yeah, yeah, yeah, the statistics ..... so I wish someone would quote statistics from the last 5 years instead of bringing up the old ones. I really wish I would see some GB studies using targeted therapy from gene mapping. It is certainly going that way with other cancers (ie breast, lymphoma, etc). So close I hope.

Cheryl, it was refreshing to read that you are an avid birder. So am I. We have recently taken this up again as our kids have gotten older. It has been as easier activity for me given this last nasty year (2011) with chemo. We used to go for really long hikes- even backpacking down the Grand Canyon in summer of 2010. Right now I just like the feel of a casual walk with lovely bird sounds (grateful that cisplatin did not damage my hearing as it could have been a side effect (yeah..didn't happen). I had a scan today (yuck... I hate waiting for results). I have had an allergic reaction to the dye so I have to take a big dose of prednisone beforehand which I hate. But your birding hobby cheers me up. If all goes well, we are planning a birding trip to Canada next spring for a warbler migration. Maybe you know of good spots? God Bless to everyone and take care. Jean

Eye inflammation after chemo
Hi,

My mom was diagnosed with Stage 3a GBC last month. She is currently on gemcitabine/carboplatin. After 1st cycle, she developed an eye inflammation (looks like conjunctivitis). Ophthalmologist says this is unrelated to chemo and had given Flouorometholone solution. Inflammation had slightly reduced during the 2 weeks rest period, but has come back after the 2nd dose yesterday.

Wondering if someone else has experienced this.

lostinthehaze

Three Months
Hi there,

My mother in law has stage four gallbladder cancer (spindle cell carcinoma) that was discovered after the removal of her gallbladder. Unfortunately it was discovered a few weeks after the gallbladder surgery and has spread deep into her abdomen. It was said to be inoperable.

She has multiple tumors - one very large one where her gallbladder was that has been steadily growing since the removal of her gallbladder two months ago. It is the size of a fist sticking out of her abdomen. Since very little is known about this type of cancer, they could only offer chemo as a possibility for remission. She gave up on chemo after two sessions as the side effects were devastating. We thought she was going to die that week.

Now she has been given three months to live. Hospice has been called in and family members are taking shifts to stay with her. However, I have to admit that she is doing fantastic considering. She has a small appetite, but is eating regularly. She does sleep a lot. But otherwise she seems really normal to me. I'm having a difficult time thinking of her as someone who has three months to live.

I don't have any experience with cancer and I've never had anyone in my family die this way (slowly). I feel like life is on pause. My husband is staying with her for the next week and a half. We have a small son, so it is difficult to spend extended periods of time there as she needs her rest. I feel angry, upset... well, a million different emotions all at once. We thought we had all the time in the world and now this sudden and horrifying diagnosis.

maudsie

westie66 said:

Gallbladder Cancer
Yup, I agree with Lourdes!
Cheryl

..

..

maudsie

hillaryjoRN said:

just wondered how everyone
just wondered how everyone is doing??
mom just finished up with radiation today! she is looking forward to the month off she has before starting with 4-6 months of Genzar. so far so good, she tolerated the radiation and xeloda great with just alittle nausea and fatigue!
thinking of you all on this journey! Hillary

hi hillaryJo
Hi HillaryJo -- I just thought I'd chime in here I've posted intermittently through the past couple of years. I am getting near my 4th anniversary since my diagnosis, I had the EXACT same treatment your mom is getting (starting with Xeloda and the radiation) then moving on to Gemzar for some months. And here I am today, feeling great, no recurrence. Keep the faith, and keep posting!
Maudsie

Jean160

maudsie said:

hi hillaryJo
Hi HillaryJo -- I just thought I'd chime in here I've posted intermittently through the past couple of years. I am getting near my 4th anniversary since my diagnosis, I had the EXACT same treatment your mom is getting (starting with Xeloda and the radiation) then moving on to Gemzar for some months. And here I am today, feeling great, no recurrence. Keep the faith, and keep posting!
Maudsie

4 years out, maudsie, is Awesome!
Whoo Hoo Maudsie! Congratulations on coming up on 4 years. That is awesome....... I love hearing that news.

I just had my 3rd scan since chemo was over (last chemo was Sept 2011)....... so far so good. I am still waiting to hear from the University Hospital where I had my 2nd surgery as their tumor board will also look at the scan films. But the local radiologist read it as clean. CEAs and CA 19-9 are not elevated. I think if I were out 4 years I would start feeling more confident.

For jmcmatt- regarding conjunctivitis. I don’t know specifically about chemo causing conjunctivits, but chemo does lower one’s WBCs and those cells help fight off infection. It may be that your mother is more susceptible to infection after chemo, especially if there is still inflammation there. I know I had phlebitis (inflammation of the veins), a couple of times after chemo which was not fun. I did not have a port, but had the chemo in my arm veins which really irritated them. My veins are fine now, but if I ever needed chemo again; I am going to request a port.

roh_gupta82

Gall Bladder Cancer
Hi Lily,

I have just joined this forum and read your words. Before I ask anything, I would like to introduce myself. I am Rohit and living in Australia.My mother has recently been diagnosed with Gall Bladder Cancer (advance stage) with liver metastasis. Doctors have told that she can not be cured and also her first chemotherapy went very bad so we decided not to go further. She recently gained weight and her blood count also increased from 10 to 11.4 and weight increased by 1.5 Kg.

She is currently on an alternative treatment called - Nutrient Energy Therapy. it's web address is - http://www.cancercurative.org/2011/our_centres.html

She was recovering very well, getting more energy level and active but yesterday she suddenly got gastric problem that led to low appetite. I wonder whether gastric problem is also a symptom of this cancer or it could just a normal gastric problem. Also, you area an example of this specific cancer who survived so far, could you please suggets me something you tried so that I can help my mother as well.

Regards

Roh.

hillaryjoRN

maudsie said:

hi hillaryJo
Hi HillaryJo -- I just thought I'd chime in here I've posted intermittently through the past couple of years. I am getting near my 4th anniversary since my diagnosis, I had the EXACT same treatment your mom is getting (starting with Xeloda and the radiation) then moving on to Gemzar for some months. And here I am today, feeling great, no recurrence. Keep the faith, and keep posting!
Maudsie

Maudsie! Congrats!! Can't
Maudsie! Congrats!! Can't wait till mom is 4 years cancer free! She'll get there! Thanks for the encouragement.. . It means a lot to her and me!! God bless! Hillary

MOMSKEEPER

Why are the doctors so glum?
My mom was diagnosed with Gallbladder cancer November of 2011. Ten days after Thanksging. She was told by the first Dr, prognosis was slim, but if she wanted to try to fight she could. With the help from a second Dr, she has been fighting and she will be having surgery July 2. Drs are still saying there are a lot of risks etc. She will lose her gallbladder and the whole right side of her liver and possibly the biliary duct and nodes. If they find the cancer in other organs they won't operate at all. With all the negative I have heard since November, I am glad I found this web-site with so many people succesfully surving this disease.

wildflower07

Stage 4 gallbladder cancer - inoperable
Hi there,

My name is Sarah and my Mum has recently been diagnosed with Stage 4 gallbladder cancer. I lost my Dad 2 years ago to cancer and I'm just devastated with this news. We have been told her cancer is inoperable. She is scheduled to start chemotherapy on July 17th. The oncologist has told us that it is palliative chemotherapy and that the median survival is 8-11 months. I'm trying to stay hopeful and positive that she will live well beyond this. I was so glad to find this site and the survivor's stories. It scares me though as it seems that most of the survivor's had some kind of surgery, yet they have told my Mum that is not an option. Any advice anyone can give would be greatly appreciated. I'm so scared right now. My Mum is 67 and until recently was in her best health ever! She had lost 35lbs - ran in two 10km races, was ballroom dancing and/or running on a very regular basis, eating healthy, everything - and now this... God bless everyone here. Thank you for a ray of hope...

Sarah

Jean160

wildflower07 said:

Stage 4 gallbladder cancer - inoperable
Hi there,

My name is Sarah and my Mum has recently been diagnosed with Stage 4 gallbladder cancer. I lost my Dad 2 years ago to cancer and I'm just devastated with this news. We have been told her cancer is inoperable. She is scheduled to start chemotherapy on July 17th. The oncologist has told us that it is palliative chemotherapy and that the median survival is 8-11 months. I'm trying to stay hopeful and positive that she will live well beyond this. I was so glad to find this site and the survivor's stories. It scares me though as it seems that most of the survivor's had some kind of surgery, yet they have told my Mum that is not an option. Any advice anyone can give would be greatly appreciated. I'm so scared right now. My Mum is 67 and until recently was in her best health ever! She had lost 35lbs - ran in two 10km races, was ballroom dancing and/or running on a very regular basis, eating healthy, everything - and now this... God bless everyone here. Thank you for a ray of hope...

Sarah

Mum's stage 4
Hi sarah, I am so sorry to hear that your mum was diagnosed with gallbladder cancer. I know the doctors give grim statistics. But statistics are not individual people, and many people in this blog have defied those statistics. The bottom line is, some people respond quite well to chemotherapy, even though there are some nasty side effects. I really had to evaluate my own mortality this last year. I know I feel fine, and I returned to work part time. I work as a nurse practitioner in a clinic (not oncology), but I have met patients who were given a short time to live and here they are today.... doing well! One gal was given a few months after gastric cancer surgery; and that was 40 years ago! She is now in her 80’s. Another one had pancreatic cancer (did not have surgery; just chemo), and that was 14 years ago! So hang in there and stay positive. Even though its serious stuff..... no one can give us an exact time frame of our life! Take care.

MCR17

Help from Survivors
My mom has recently been diagnosed with stage 4 gallbladder cancer, mets in liver, inoperable (June 18 2012). She is 71 years old and up until her diagnosis was a vibrant healthy and young looking woman who was very active.

Her health has basically taken a nose dive in the last 4 weeks, weight loss, extreme fatigue, night sweats, pain and tremors.

We are waiting for the results of a few more tests before we can start chemo. I am looking for help and suggestions from the survivors as to what they did to help them through night sweats and tremors.

Also what did you eat? And any vitamins ect that helped.

We live in Hamilton, Ontario.

If you want to respond privately please email me at melindaroberts7@hotmail.com

Thank you everyone..and keep well..Melinda

hillaryjoRN

MCR17 said:

Help from Survivors
My mom has recently been diagnosed with stage 4 gallbladder cancer, mets in liver, inoperable (June 18 2012). She is 71 years old and up until her diagnosis was a vibrant healthy and young looking woman who was very active.

Her health has basically taken a nose dive in the last 4 weeks, weight loss, extreme fatigue, night sweats, pain and tremors.

We are waiting for the results of a few more tests before we can start chemo. I am looking for help and suggestions from the survivors as to what they did to help them through night sweats and tremors.

Also what did you eat? And any vitamins ect that helped.

We live in Hamilton, Ontario.

If you want to respond privately please email me at melindaroberts7@hotmail.com

Thank you everyone..and keep well..Melinda

Good News! Mom had a repeat
Good News! Mom had a repeat CT scan the other day (4 months post op) and it was NORMAL!! thank you GOD!! we took her to the ER cuz she was having alot of stomach pain and nausea, so they did a repeat CT and labs which were all normal! They are guessing her pain and nausea is related to the Gemzar or she possibly caught a virus, We thought it was strange that on her week off of chemo she felt the worst even though her counts were OK. Did anyone else feel really nauseous and flu like from Gemzar? or have pain? and what did you do to help? thanks! Hillary

evelynchan2004

Lily50 said:

Deb's Question
Hi Deb,

I have to ask you the question of what type of surgeon was he? The survivors that I know of all had their surgery done by Hepatobiliary surgeons all across the US. They have had experience with Gallbladder patients and know what to do to help us.

I was very persistent with my surgeon and even though he told me NO twice for whatever reason the third time I saw him I received a YES. I think they sometimes need to know that you are a fighter and are willing to go the distance. I was told that I was very lucky as my surgeon was actually the pioneer for this type of surgery.

If you aren't happy with the answers that you are receiving then start looking for doctors who will help you. They are out there you just need to find them. Stay strong! I will look for their names and try and post them tomorrow.

Take Care
Lily

GallBladder Stage 4..
My mom has been sick for a couple of months now. Rapid weight lost, appetite loss, and on & off severe stomach and back pain. She had already seen her Dr. and a GI specialist which then scheduled an appointment for her in two weeks for a colonoscopy and endoscopy. Within a couple of days, we had to take her to LAC-USC county hospital's emergency room. The doctors noticed her heart rate was irregular, incredible high and focused on this other than her pain. She was admitted that night for observation and was diagnosed having as A-Fib ( affibrillation) and acid reflux.

Her appointment with her GI went well. He stated The images for her colonoscopy showed no abnormalities, just a little inflamed; no cancer. Because the results didn't explain her symptoms he referred her to a cardiologist (for the A- Fib) and a endocrinologist because of her results of her blood works.

When she went to the endocrinologist, he said her thyroid was normal. But her liver test was high. And her cardiologist mentioned she did not have an A-Fib, but has occasional arrhythmia. Since both specialists were unable to diagnosis her GI doctor made an appointment to get a CT Scan within 2 weeks.

She didn't even reach one week where on July 4 we had to take her to the ER at Huntington Memorial Pasadena. They did an ultrasound in her abdominal area and concluded that her Gall Bladder had to be removed. They admitted her and did another ultrasound. Early that morning a surgeon entered the room and announced they found masses (tumors) in her liver and suggested that they be removed. My mother did another ultrasound and CT to locate the tumors.

The surgeon came in the next morning that they detected the masses in several areas in her body and was not able to operate. They wanted a biopsy to determine if it is cancer. They confirmed that she had gallbladder cancer. It had spread throughout her lymph nodes in her back and neck and stomach outer lining. Surgery was not an option.

The first oncologist had given her 3 months without chemo and 6 months with chemo. This Thursday is going to be her first chemo treatment (Gemzar & Cisiplatin). We got a 2nd option and choose him to treat our mother since he was more experienced, and compassionate. We felt he expressed more concerned and effort in treating our mother.
Although because it was stage 4 and that Gallbladder is such a rare cancer, the outcome of it all remained the same. But will try to make ordeal less painstaking.

My mom is a beautiful 57 year old woman who was very strong and maintained her health. She always took good care of herself. In her lifetime she has never gotten seriously ill. For this to be called cancer it was a shocker all to us.

If anyone out there has been diagnosed with this same cancer, please respond with your experiences & thoughts. My family wants to be aware of what we may encounter. Any suggestions, tips or any kind of help will be very much appreciated. You can also e-mail me @ evelynchan2004@yahoo.com or my sister @ casia2468@aol.com. Thank you

tammylayne

Susan_VizDame said:

I'm in the Seattle Area Too - New "ish" GBC diagnosis
Hi Jean,
I replied to your post last night but don't see the posting here this AM. I'm new to this board and have found the posting inspiring.

My story is similar to your "incidental" finding of GBC following gallbladder removal on Feb. 2nd. Mine was a T3 tumor that had broken through the gb wall. Subsequent liver resection on April 5th, removed two cancerous tumors and 16 lymph nodes which were all negative. My surgery was also at Univ. of WA (Dr. Park). I felt the surgeon and all the staff at Univ of WA were top-notch.

I'm starting Chemo next week and getting port installed this Thursday. I had thought about going to Seattle Cancer Care Alliance, even going to a few appts there but just this weeks decided to get treatments at Seattle Cancer and Wellness Center in Renton. I liked their approach of supporting the immune system through treatments and administering low-dose therapy over a longer period of time.

I'd be interested in knowing where you had your chemo treatments and what you thought of the facility and Dr, if yo don't mind sharing?

All the Best,
Susan

Update on Westie66 - Cheryl
I am a friend of Cheryl's, and she has asked me to give everyone an update. About 2 months ago Cheryl's colon perforated. She was in ICU for about 3 weeks, and we did not think she was going to make it.

She has beaten all odds, surprised us all, and although still in the hospital, things are looking up. She is now able to get around with a walker, has regained use of her arms, and we are all hoping for a full recovery. She will hopefully be moving to a different hospital where they will be able to rehabilitate her to the point where she can come home.

She says ho to everyone, and I am hoping she will be posting on here again sometime next month.

For anyone wanting more information, please contact me at tammylayne@hotmail.com

Monarch64

tammylayne said:

Update on Westie66 - Cheryl
I am a friend of Cheryl's, and she has asked me to give everyone an update. About 2 months ago Cheryl's colon perforated. She was in ICU for about 3 weeks, and we did not think she was going to make it.

She has beaten all odds, surprised us all, and although still in the hospital, things are looking up. She is now able to get around with a walker, has regained use of her arms, and we are all hoping for a full recovery. She will hopefully be moving to a different hospital where they will be able to rehabilitate her to the point where she can come home.

She says ho to everyone, and I am hoping she will be posting on here again sometime next month.

For anyone wanting more information, please contact me at tammylayne@hotmail.com

Prayers and positive thoughts
Please pass along my family's prayers and positive thoughts to Cheryl. I know everyone here is rooting for her!

Thank you for updating us!

Charmi

Monarch64

Rocky...how are you doing?
Rocky,.

I keep hoping to see an update from you. Wonder how you're doing. As always, my family's thoughts and prayers are with you and your family.

Mom is doing well. Her scans continue to come back clear. Of course, scanxiety is a constant. But we know we have been blessed and we continue to believe that the blessings will continue.

I hope that everyone on this thread is doing well and getting excellent results of their treatment. Please check in when you have a moment.

No one fights alone. And, we are all part of each other's team.

Best to all!

Charmi

Monarch64

hillaryjoRN said:

Good News! Mom had a repeat
Good News! Mom had a repeat CT scan the other day (4 months post op) and it was NORMAL!! thank you GOD!! we took her to the ER cuz she was having alot of stomach pain and nausea, so they did a repeat CT and labs which were all normal! They are guessing her pain and nausea is related to the Gemzar or she possibly caught a virus, We thought it was strange that on her week off of chemo she felt the worst even though her counts were OK. Did anyone else feel really nauseous and flu like from Gemzar? or have pain? and what did you do to help? thanks! Hillary

Yeah!
Excellent news, Hillary!

Mom didn't do gemzar...but post-treatment, she did have some stomach problems which turned out to be related to the radiation. After a few weeks, they subsided. Did your mom have radiation? Maybe that could be the cause of her symptoms. (?)

Hoping and praying for continued good news!

Charmi

lirok

Monarch64 said:

Rocky...how are you doing?
Rocky,.

I keep hoping to see an update from you. Wonder how you're doing. As always, my family's thoughts and prayers are with you and your family.

Mom is doing well. Her scans continue to come back clear. Of course, scanxiety is a constant. But we know we have been blessed and we continue to believe that the blessings will continue.

I hope that everyone on this thread is doing well and getting excellent results of their treatment. Please check in when you have a moment.

No one fights alone. And, we are all part of each other's team.

Best to all!

Charmi

Rocky.........how are you doing?
Hey Charmi, your timing is impeccable. I have been in Florida the last few weeks and just returned home to NY on Sunday. My doctor took me off my chemo for a month to let my body heal a bit. I have been having severe side effects and trouble getting around. I had a great vacation and upon my return I went to Sloane on Tuesday for a set of scans. I have been showing signs of jaundice and my billirubin count has gone up alot in the last month. They feel that my stents in my liver are blocked and need to be replaced. This is causing the jaundice and abnormal test results.

The good news is that my CA-9 Antigen count came back down to 60 from 75. Also, my doctor told me on the phone that my scans looked good. She knew I was worrying and wanted me to know before Friday (tomorrow) when I go back to see her. I am more concerned obviously about the cancer than the billirubin. I have the stents now well over a year and everyone has told me that it is time for them to be swapped out.

Anyway, I am doing fine and hope that you and Mom are doing great. Great to hear the good reports on Mom. It just proves the point that this disease is not necessarily a death warrant. You just need to stay positive and get good treatment. Faith and prayer also come in handy.

Best wishes to all on this board for continued health and improvement with your situations.

Rocky