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Gallbladder Cancer - 2012 (Any Stage)

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

Hi everybody!

I'm starting a new discussion thread after having some frustrations posting today.
When the threads get too large we seem to have problems. Double posting, no posting, disconnect, etc. I don't know if you have experienced this or not, but it just drives me crazy.

Of course I will still check the other threads but if we all could move forward to this thread, it might be easier for us.

For those of you who don't know me I'm Lily and I am a six year survivor of Gallbladder Cancer Stage 4. I was given a very short time frame at time of diagnosis but everyone was wrong! You can read my story under my profile.
I have had the last laugh, continue to laugh and I'm doing well.

Post your story and let others know you have survived the battle, are in the midst of the battle, or are continuing on with your battle which may have changed from original diagnosis.

This is a terrible disease but you can beat it. Talk to us and we will try to help you.

Take Care
Lily

kevin409
Posts: 1
Joined: May 2012

Hi Lily and everyone:

Great posts, very helpful to us as we learn about gallbladder cancer and its treatments.

My wife was diagnosed with gallbladder cancer 2 months ago, after her gallbladder was removed for unrelated reasons. The cancer was found post-op, and was T3 but hadn't seemed to go too far yet, but had gone through the wall of the gallbladder. 3 weeks ago she had the operation where they remove two sections of liver and some surrounding lymph nodes. The surgeon found two cancerous nodules on the liver, but luckily they were on the sections he was going to remove during the operation, so they came out. 16 lymph nodes were removed and biopsied, and they were all negative. There are no other known tumors/growths, so the docs are now going after microscopic cells/clusters to prevent any growth/spread.

So that part went well! But now we're on to the chemo and radiation, and there is a lot of conflicting info out there, since this type of cancer is so rare and largely unstudied. So, as you might suspect, my wife is struggling with two paths of treatment, and trying to quickly decide on which to take.

The first is from the Seattle Cancer Care Alliance, and consists mainly of gem/cisplat for two weeks, with a week off, for X cycles, followed by local radiation of the abdomen. Scans throughout with the goal of a cure/remission.

The other alternative is from the Cancer Treatment and Wellness Center, where they suggest low-dose gem/cisplat continuous chemo, introvenous vitamin C, and DCA. While introvenous Vit C and DCA seem hopeful in early trials, there doesn't seem to be sound evidence that they work yet, as also seems to be the case with low-dose chemo. These guys also did not mention radiation as an option at all.

So, knowing that this is an agressive disease, we know that she's currently in a good position and that the first round of treatment will be very important. But it's hard for her to pick which direction to take. If it were me, I'd likely go conventional via the CAncer Care Alliance - but of course it's not my decision and she needs 110% buy-in to her therapy.

I wanted to ask if anyone on the thread has tried the low-dose gem/cisplat, the introvenous Vitamin C, or the DCA, and if so, what you thought. Or, of you've got info against those things, what that is. And, if you've had the "conventional" regiment and it worked, maybe you wrestled with the same confusion over these "alternative" therapies?

Thank you!
Kevin

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

Hi Kevin: I don't know anything about the low-dose treatment unfortunately. I went the traditional route - gemcitibine + cisplatin - but because I had already had spread to the peritoneum that treatment didn't work on the spread (but likely kept the beast at bay in other areas). I had the two weeks on and 1 week off treatment and it went well - no problems at all. I was on reduced cisplatin though (70%)as I did have a problem with colon bleeding on full strength. Some folks tolerate carboplatin better than cisplatin as it is weaker. For some reason, here in Canada radiation with gallbladder is not offered, something about a compromised liver. You might read Lily50's bio - she had very aggressive chemo, then surgery, then chemo again (but not radiation). I know for a time she had chemo every day. I'm glad they got out the spots on the liver at the same time and the lymph nodes. Wish I had had that option.

My treatment now as I'm not eligible for surgery is something called folfirinox (oxaliplatin + irenotecan + 5FU pump) which is used in colon cancer and pancreatic cancer treatment. I don't have those but it is those nasties on the peritoneum that are a problem and this treatment seems to work.

I hope someone can report on the low dose treatment for gallbladder cancer. I do know someone who is doing that treatment in Vienna, Austria (a gentle chemo regime she calls it).

Cheryl

Jean160
Posts: 26
Joined: Sep 2011

Hello to all! I was posting in last years blog, but have not posted for a while. But I am reading all the new posts and it gives me great encouragement. We need to share information because even the specialists don’t have a lot of personal experience since gallbladder cancer is so rare.
I consider 2011 my hard year and hoping 2012 is much better. I was diagnosed with gallbladder cancer after my initial gallbladder surgery Feb 24, 2011. An ultrasound noted my gallbladder looked suspicious, but my surgeon convinced me there was nothing to worry about because this cancer was so rare. Ha! I had a T2 and the cancer seemed to originate on a polyp. With additional staining, they found isolated tumor cells in the lymph node next to the gallbladder, which the surgeon had also removed. According to AJCC 2010; that would be a T2 N0 (+) M0 (that plus is for the isolated tumor cells because no one knows its significance). Of course this bought me the second surgery of liver resection and lymphadenectomy (10 more lymph nodes). This all came back negative. I spent my summer doing chemo (the Gemzar/cisplat combo at full dose). I hated it but I got through it. I did not do radiation. Initially I sort of decided to retire after reading all the terrible statistics (thinking if I was only going to live a couple of years that I might as well enjoy some relaxation). After chemo was over and I started to feel better, I got bored at home. I had 2 clear scans (a CT and an MRI.... who know which one is best ☺). I have so many surgical clips in me that next time they want to do a 4 way liver CT protocol of the abdomen (I guess to check the area with all the clips better). I live in the Seattle area and felt I had a great surgeon at the University of WA. I returned to work 3 days per week. I have been feeling good, but I get “scaniety” when it come time for another scan. Those old statistics need to change because surgeries and treatments are getting better and the articles just keep recycling the old statistics! Blessing to all of you for sharing your stories because even stage IV can have good outcomes; Lilly is a great testament to that! By the way, I need to try that supplement for tingling in fingers and toes (cisplat chemo)
The best to all of you who are fighting this battle! Jean

Susan_VizDame
Posts: 4
Joined: Mar 2012

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

Jean160
Posts: 26
Joined: Sep 2011

Hi Susan, I had the same surgeon as you! He was great. I felt he was very thorough, and was very calming for me in such an emotional time of dealing with this. My surgery was almost exactly a year before yours. I had my chemo through group health in Tacoma. I also sought opinion at Cancer Care Alliance. My husband and I read through many, many articles (which wasn’t easy given all the lack of current research.... it really made it tough). But one thing Dr Park told me was that there is not one right answer to approach which chemo you use. Cancer cells can be so different; what works for one person may not work for another. We choose to go with the cisplatum/gemzar combo. The staff with chemo was great and kind, but I can’t say it was fun: but of course my goal was to kill cancer cells. All I know is that right now I feel great and I have no restrictions on the activities that I can do. But do rest and don’t push yourself during chemo as it does make you fatigued. My hair has grown back and feels thick (it may not do what I want it to, but I am happy it is there ☺) The best of luck to you! You will be in my prayers.

Susan_VizDame
Posts: 4
Joined: Mar 2012

Thanks for sharing your experience,
It's good to hear that you feel great following your chemo treatments - that gives me hope as I start my chemo treatments. I'll also be getting the cisplatum/gemzar combo, seems to be the standard chemo for GB cancer. I'm in the Gig Harbor area but will be driving to Renton (Seattle Cancer Treatment and Wellness Ctr.) for treatments. I read through their patient stories and talked to one patient who lives near me. He also had an aggressive cancer and had been given a short time frame to live. Here a year later and in remission, he had only the best things to say about the Doctors and care at the center.

They administer chemo in a metronomic schedule which is typically a lower dose but also w/fewer breaks in the schedule. They also provide supportive naturopathic treatments which made sense to me.

Thanks again for sharing and keeping me in your thoughts and prayers.

hillaryjoRN
Posts: 32
Joined: Apr 2012

Mom has three weeks down of Chem/radiation and is doing great. alittle nauseous but zofran helps! she has two more weeks of treatment left and then will have one month off followed by 4-5 months of IV Gemcitobine given once per week. It seams that most of the people on this board have had Cisplatin in combination with the Gemcitobine and I am curious why she is only going to recieve Gemcitobine. I'll have to ask the oncologist next week. also is anyone aware of anything out there (trials/research) that is available for prevention of reoccurance?? I can't find anything! I know GBC has a high reoccurance rate and am interesed in even looking into alternative medicine (diet, ect) to help prevent this! also would you guys recommend a port/PICC for the gemcitibine?? I told her she should have one but the oncologist said he thinks she should do fine without one.

Thanks everyone and HAPPY MOTHERS DAY to all of the mommies! Hillary

hillaryjoRN
Posts: 32
Joined: Apr 2012

Mom has three weeks down of Chem/radiation and is doing great. alittle nauseous but zofran helps! she has two more weeks of treatment left and then will have one month off followed by 4-5 months of IV Gemcitobine given once per week. It seams that most of the people on this board have had Cisplatin in combination with the Gemcitobine and I am curious why she is only going to recieve Gemcitobine. I'll have to ask the oncologist next week. also is anyone aware of anything out there (trials/research) that is available for prevention of reoccurance?? I can't find anything! I know GBC has a high reoccurance rate and am interesed in even looking into alternative medicine (diet, ect) to help prevent this! also would you guys recommend a port/PICC for the gemcitibine?? I told her she should have one but the oncologist said he thinks she should do fine without one.

Thanks everyone and HAPPY MOTHERS DAY to all of the mommies! Hillary

tammylayne
Posts: 1
Joined: Jul 2012

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
Posts: 22
Joined: Apr 2012

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

hillaryjoRN
Posts: 32
Joined: Apr 2012

Hi Jean160
Your story sounds exactly like my moms. incidentaly found the "polyp" on an ultrasound...told us up and down they really didn't think it was cancer...but did an open surgery just in case. tumor was a T2 N0MO. she had a liver resection and 16 lymph nodes removed, all negative! she is on her 3rd week of treatment, consisting of oral 5FU and radiation mon-friday for 5 weeks. then she'll have a month off then start IV chemo gemcitobine for 4-6 months. Great to hear from another survivor with similar staging!!!
God bless Hillary

Susan_VizDame
Posts: 4
Joined: Mar 2012

Hi,
I'm his wife Susan, under treatment for GBC as he described. I have decided to try the low-dose Chemo regiment at a treatment center here in the Seattle area where I live. I'll keep you posted as to how it goes as treatment progresses.

Thanks to you and all the members of this board who provide such hope to so many everyday. You are my heroes!

Susan

Jean160
Posts: 26
Joined: Sep 2011

Cheryl and others with cancer in the peritoneal area, I was wondering if your health care team talk about peritoneal chemo (ie, directly administered into the peritoneum). I have a friend with ovarian cancer (recurrance), and that is where she is getting her chemo.

Interestingly, I also have a friend with brain cancer (glioblastoma)...where does all this cancer come from., anyway?......... He is in a trial in the LA area where they did genetic testing on the tumor and have made an immunization for him that he will get every few weeks. It is just a trial, so there is a lot of study that has to be done; but I saw him the other day and he looks and feels great. He is receiving oral chemotherapy and also received chemo directly in his spinal fluid prior to this new treatment.

Jean160
Posts: 26
Joined: Sep 2011

Cheryl, I was wondering if your health care team talk about peritoneal chemo (ie, directly administered into the peritoneum). I have a friend with ovarian cancer (recurrance), and that is where she is getting her chemo.

Interestingly, I also have a friend with brain cancer (glioblastoma)...where does all this cancer come from., anyway?......... He is in a trial in the LA area where they did genetic testing on the tumor and have made an immunization for him that he will get every few weeks. It is just a trial, so there is a lot of study that has to be done; but I saw him the other day and he looks and feels great. He is receiving oral chemotherapy and also received chemo directly in his spinal fluid prior to this new treatment.

katja72
Posts: 1
Joined: May 2012

Dear friends,

My dad 73) was diagnosed last summer with unresectable GBC. It had already spread to his liver and bile ducts, and when they tried to resect it they found during the operation that the spread was too large. Since then he has had two courses of chemo which kept the growth of the cancer in check. He also has a biliary stent which is functioning for the time being.

Without an operation, his case is terminal. Yet for now he is doing well, keeping as active and fit as possible, still walking up hills and cycling his bike. He is very brave.

I am struggling to find any information about what we should expect as his disease progresses. Does anyone know of any useful information about end of life or last stages of this cancer? Are there any recent statistics on survival times for non-resected cancers? He is now 10 months since diagnosis, and 12 months since first symptoms. His liver function is still fine, thank goodness. And are there any dedicated GBC sites or charities?

Thank you so much for any responses. It is so difficult to find information about this cancer.

Katja

skip10
Posts: 6
Joined: Apr 2012

69 year old man with non-resectable GBC with spread to bile duct and both sides liver. Also, I have a stent (with questionable function). But, bile and liver function currently in normaL range. I AM JUST ABOUT READY TO START RADIATION AND OR CHEMOTHERAPY. Started feeling ill in early March 2012. My major symptoms are fatigue, insomnia, general body aches, and intermittent pain/pressure in upper right abdomen. If I develope any additional information, I will gladly share it with you.............Skip

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

Hi: There are a number of us on this discussion board who either got the gallbladder and its tumour out but it had already spread to other sites like the peritoneum or liver or bile duct, or who had surgery but nothing surgically could be done. Thus, chemo appears to be palliative only (so I was told anyways). My chemo regime of gemcitibine + cisplatin didn't stop progression of the mets in the peritoneum or liver but nothing else appeared which is good. I am now on folfirinox (the standard treatment for pancreatic cancer which I don't have) - my previous 12 treatments showed stability under this treatment. Not sure what else there is if this stops working. The big problem is the peritoneum spread as it doesn't respond well to chemo.

I don't have any symptoms yet (my surgery was April 2010) - they are all from the chemo.

I have known several people who were caregivers to husbands with gallbladder cancer that couldn't have surgery and couldn't take the chemo. I'm not sure though how to ask them to relate what they went through. I went through it with them via emails. Unfortunately most people diagnosed with gallbladder cancer are in the late stages and haven't lasted long - that isn't us! Treatments are prolonging quality life now.

Cheryl

Jean160
Posts: 26
Joined: Sep 2011

Hi Cheryl, I have a friend with ovarian cancer that has spread to areas in the peritoneum. She is starting to get chemo delivered right into her peritoneum; so it can directly hit the areas. Is that a possibility for you? Do you get your chemo IV, or po or peritoneal? How are the side effects with the folfirinox?

It seems the future for cancer is to map the genetic defect that has gone wrong. Is there anyone out there doing this for gallbladder cancer? (i.e. taking the cells and doing some genetic mapping for targeted therapy). I also have a friend with brain cancer that went to Cedars Sinai in Los Angeles. They took his tumor cells and made an immunization based on his particular cells.... it is a trial, but sounds very interesting.

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

Hi Jean: The process she is getting is called HIPEC where they inject heated or not chemo into the abdominal cavity. It works because the peritoneum is not well connected to the blood supply system and so doesn't get much of the IV chemo. Unfortunately it works well for ovarian cancer and maybe appendix cancer but not for gallbladder cancer. The tissues are different. I always wondered if they could just do the HIPEC procedure without the stripping or debulking surgery which is the real killer, but here anyways they don't. And especially since I also have mets to the liver. A waste of good surgery time they figure!
I get the folfirinox through IV. The side effects are quite nasty with folfirinox (the oxaliplatin gives cold intolerance and neuropathy, the irenotecan and 5FU hair loss and awful diarrhea, all give fatigue).
I have not heard of anyone doing this mapping. I guess since gallbladder cancer is so rare not much research at all is done on it. I'll try to find out more.
Cheryl

Jean160
Posts: 26
Joined: Sep 2011

opps.... I thought my posting did not go through so I posted again. Sorry for the multiples.... maybe chemo brain?

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

To all those suffering, fighting and their caretakers, may you all have a terrific Mothers Day filled with promises of better things to come. To my wife I thank you for all you have done for me this past year. I would not be here today if not for you. I know alot of us feel that way. Keep fighting everyone and don't ever, EVER give up.

Rocky

Monarch64
Posts: 22
Joined: Apr 2012

Hey gang,

Wanted to drop in and let you know that I am Relaying on Friday night/Saturday morning. You are all in my thoughts and prayers.

I have made a luminaria for all the survivors here. Please forgive me if I've accidentally left any names off. Please know that you ALL are in my heart and will be with me at the Relay for Life.

My team is called Team Monarchs & Miracles. I wish a long life filled with both for everyone.

I can't figure out how to post a picture here so here's a link to the picture of our luminaria that I've posted on my blog:

http://charmischroeder.blogspot.com/2012/05/for-my-friends-on-gbc-board.html

PS If I've accidentally left someone off, please let me know before tomorrow afternoon and I will add the name.

*** I've just added a pic of the Caregivers' luninaria to the link above. Again, I've included the names I know. If I've missed anyone, please let me kno.

Charmi

Jean160
Posts: 26
Joined: Sep 2011

Thank you, Charmi, for the luminaria and relay! It feels good to have support and prayers! And thank you, Rocky for the sweet mother's day message..... we are all on this journey together and this group makes for such a wonderful community (of course we wish we were not here; but given the rarity of this thing; it's so good to know survival is happening!). We don't have current articles, but we certainly have our own statistics!!!

I will be having another scan at the end of the month, so I'm starting to get scaniety. They want to do a 4 way liver protocol CT scan of the abdomen. Apparently to have a better look where all my surgical clips are: they apparently cause some refractory in the scan so every inch can't be looked at. I keep thinking...... "stop looking for something"! But then again... if it is okay; I will feel better. Since my original surgery, it is now 15 months.

I hope everyone has a good week. Spring is here in the West, and all the flowers are looking so nice. I took a 2 hour walk yesterday and it felt great! Take care. Jean

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

Thanks Charmi, that was awesome. And Jean, you are welcome. Good luck on your scan. I am sure you'll get good news. I am coming down to the end of my 2nd series of 6 treatments (total of 12) of the 5FU and the side affects are REALLY kicking in. Diahrrea, neuropathy in both hands and feet. Terrible heartburn. Fatigue, fatigue and more fatigue. Also my feet and hands are peeling. I am complaining ? Not at all because I AM ALIVE. That's all that should matter to all of us. The doc is going to give me the whole month of June off to regenerate a bit. I will be in Florida for a few weeks in July as we rent a house.

Please, everyone on this board, stay in touch no matter what because when we don't hear from someone it scares me a bit. Stay positive, think positive and we will all get through this.

My best to all on this board. It has been a godsend to me and my family.

Rocky

Susan_VizDame
Posts: 4
Joined: Mar 2012

Hi Charmi,
I went to your relay link. I wanted to thank you for thinking of me - it was so nice to see my name on your poster :)

Susan

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

Thanks,Charmi. That means a lot. How did the relay go?
Cheryl

Ginab1959
Posts: 5
Joined: Feb 2011

Hi Lily -
Stopping in to say hi and see how you are. I am so grateful you were there in those dark early days, the range of emotions were terrible. And yes I do want to live for my 11 year old, and will fight hard to do so just like you. I'm ok coming up on two years with no signs. Let me know how you are I think of you often.
Gina

hillaryjoRN
Posts: 32
Joined: Apr 2012

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

Ginab1959
Posts: 5
Joined: Feb 2011

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
Posts: 26
Joined: Sep 2011

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
Posts: 1
Joined: May 2012

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.

maudsie
Posts: 54
Joined: May 2010

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
Posts: 26
Joined: Sep 2011

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.

hillaryjoRN
Posts: 32
Joined: Apr 2012

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

lostinthehaze
Posts: 8
Joined: May 2012

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.

roh_gupta82
Posts: 2
Joined: Jun 2012

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.

a_prabhat
Posts: 5
Joined: Apr 2012

I am Anil from Andhra Pradesh, My father was diagnosed in March 2012 with iv stage GB cancer, he completed his 6th chemo cycle couple of days ago. His first 2 cycles were pretty rough but after that he did quite well. We had CT scans after 3 months and there was a 60% shrinkage in cancer cells. They raised his chemo medication since then, he is scheduled for another PET scan Aug 13th. Oncologist told me that he is still not a candidate for surgery. I am really interested in the Ayurvedic medicine your mother is taking, I would like to try them for my dad as well. Can you email me your contact details at a_prabhat@yahoo.com, I want to get an understanding of whether my father can be a suitable candidate.

MOMSKEEPER
Posts: 1
Joined: Jun 2012

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
Posts: 2
Joined: Jul 2012

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
Posts: 26
Joined: Sep 2011

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
Posts: 1
Joined: Jun 2012

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
Posts: 32
Joined: Apr 2012

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

Monarch64
Posts: 22
Joined: Apr 2012

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

Monarch64
Posts: 22
Joined: Apr 2012

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

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

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

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

Just to add to the above. I just returned from my oncologist and was told my cancer is UNDER CONTROL. No additional chemo is scheduled at this time. All of my markers were excellent. Antigen down to 60 from 80 and this all was after 6 weeks of NO TREATMENT. Its the best news I have had since my initial diagnosis. Naturally they will scan me regularly to keep an eye on things. I also have to go in and have my stents cleared out as I am showing signs of jaundice. These were placed in almost 16 months ago so they have done their job well.

My next doctors visit is in September. That will be almost 3 months without any treatments. I could not be happier.

Keep fighting,

Rocky

Jean160
Posts: 26
Joined: Sep 2011

That is great news to hear. Not only did you get away for R & R, but you return home with fantastic news. Enjoy not having chemo! I hope your energy builds back up soon so you can enjoy the summer and visualize any cancer cells shriveling up to nothing! I am so happy for you. Jean

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

Hi everyone. Hope all are well. Just a brief update on my situation. I got back from vacation the first week of August and my bilirubin count was up to 9.7. Normal is UNDER 1. They assumed my bile ducts were blocked. As you may or may not know, when I underwent surgery in Feb of 2011, they removed my gallbladder plus a good portion of my liver including the bile ducts and the common bile duct. The surgeon "created new bile ducts" from my large intestine and placed metal stents inside. For over a year we were good. Then in July while in Fla, I showed signs of jaundice. I got back in April and they assumed the bile ducts were blocked but a CT scan showed they were clear. They gave me an external biliary drain and in a week my number dropped to 4. Now on Friday my blood test showed it went back up to 6.1. I have no infection, my bile ducts are clear and I have a biliary drain in place. They are totally puzzled. I had another catheter placed in today that is much larger. The IR doc told me there is a shot I may have to wear this drain from now on. Not the worst thing but a pain in the butt. Thats where we are now. I am still off of chemo and my markers remain low. The cells seem to be at bay. Anyway, I hope all are well and please, stay positive. BTW, if anyone needs to e-mail me for anything please feel free. sweeneyrocky@gmail.com.

Fight the fight in your mind first, THEN attack the cancer. You can do it.

Rocky

Monarch64
Posts: 22
Joined: Apr 2012

I am beyond thrilled to read this news, Rocky! I am so happy for you and your family!

I remember many months ago on another board when you said that you and Mom were going to beat this thing. You were absolutely right! I believed it then and I continue to believe it now. (((Rocky)))

Of course, thoughts and prayers continue.

And...YEAH!!!!!!!!!!

Charmi

Libbyh
Posts: 6
Joined: Sep 2012

Hi there everyone,
Sorry Rocky for jumping in on you, I don't know how to start my own discussion...
Firstly, thank you all for this wonderful web site - it is so nice to see some positveness come out of this dreadful situation we are all in. My name is Libby and I am a 55 year old woman from Auckland New Zealand and have been diagnosed with stage 4 inoperable Gallbladder cancer that has metastasized to the liver and bile ducts. As usual, the doctors have given me the usual 'months' to live but they dont know me or my strength. I want to show them that this cancer can be stopped in its tracks but I need help and support from people who are 'survivors'. I am currently undergoing chemo -Cisplatin and Gemcitabine and will be starting my 3rd cycle on Monday. I missed my last cycle due to blood infections which have accured both times on my 2 nd week. I have had a stent placed in my common bike duct and they think the infection might be starting from there. Anyway, I went for an assessment with my Onclogist yesterday and he told me my 'tumor markers' have come down from 2290 in June to 586 - a good thing he told me but a CT scan had shown up a new 11mm lesion in my liver.....not sure on that yet. He is very happy with me so far, I have put on 4kgs in weight and am feeling really good except for some lack of strength and sometimes a little tiredness.
Has anyone out there had problems with blood infections and bloating of the upper stomach around the rib cage?
Looking forward to getting some replys. Keep on fighting everyone :-)
Libby

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