CSN Login
Members Online: 4

Gallbladder Cancer - 2011

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

Hello Everybody!
Happy New Year! I know I’m a little late but better late than never.

I have started this new discussion thread because over the last year of posting we have ended up with many different threads going on at the same time. It was hard to keep up with them all. I had many people tell me that they couldn’t find where they originally posted.

Over the course of the last year I have met some wonderful people and I’m so glad that this forum has brought new friends into my life. I’m asking that you all come to this forum and tell us how you are doing, or if you are new tell us a little bit about yourself. There are many success stories out there and with so many people being diagnosed with gallbladder cancer recently we need to show them that there is a way thru this darkness. Give a small profile update (diagnosis, dates, treatments, where you are located, doctors that you love, things that have or have not worked for you etc... Also anything that you might want to share with others. We have lost some very special people in the last year but we always will carry them in our hearts and memories of the many discussions that we have had.

My name is Lily and I am a survivor. My diagnosis was in 2005 as Gallbladder Cancer Stage 4 and I was given a short time frame to live. It is now 2011 and I am so grateful to be here everyday. I had chemo, surgery and more chemo for a year and a half. Recovery was about another year and a half after that and I get better and better every day. I have had no recurrences at this time. I live in Henderson, Nevada (suburb of Las Vegas). I rolled the dice and Lady Luck was on my side. The two most important men that are in my life beside my husband of course is Dr. Russell P. Gollard (Oncologist) and Dr. Howard Reber (Surgeon – UCLA, Jonsson Comprehensive Cancer Center and Pfleger Live Institute). They all saved my life. I believe that you have to treat your body in its entirety (mind, body and spirit), Mediation, yoga, healthy eating and the list goes on. Do whatever makes you feel better.

Ask any of us questions and we will try and help you the best that we can.

Hope and Faith will carry you through.
Take Care
Lily

maudsie
Posts: 54
Joined: May 2010

Hello to Lily and all of you who follow this forum and this thread in particular. I am Maudsie, I live in Chapel Hill NC and I get my medical treatments at Duke University Hospital, where I was an RN for many years. I was diagnosed with GBC after a routine laparoscopic GB removal in the summer of 2008. Follow-up surgery was done to remove nearby lymph (no cancer seen) and liver wedge (cancer had directly invaded the liver but hopefully all removed). After post-op healing I had chemo and radiation, followed by more chemo, and all my CT scans since have been negative. Cancer markers and other blood tests also all normal. I am still at fairly hight risk for recurrence, and scans are done periodically to check things out. So far....so good. I am here, I am happy to have this forum for support and information. I am also writing on the GB discussion board on cancercompass.com. Thanks, Lily, as always, for your amazing job here, and great idea to start a new thread.
Best to all,
Maudsie

jackson1
Posts: 3
Joined: May 2011

Maudsie and others - I have seen posts here and on another message board somewhere else (can't remember the site). Anyway, I don't mean to duplicate posts all over the place but I am desperate for info and also confused because some of you have handled chemo, liver surgery, radiation and more.

I am wondering if it is the right decision to not make these choices for a 98 year old woman. Before anyone comes to an immediate conclusion, here are the details: gallbladder removal for what was assumed to be a "gallbladder attack" and that took care of the pain. Felt great, even went shopping within days!

Weeks later, told she had gallbladder cancer but that it was only in the inner wall. Weeks later, told it had invaded the liver. Now told she has "months to live." If she got through the previous surgery so well, should we just go along with the doctors?

I don't want her last days to be full of suffering from radiation or other treatment side effects but feel like they have just written her off because of her age. If everyone here agrees that treatment is not realistic for someone in her 90s, what can we expect? She has no symptoms now, just a bit more tired. She is VERY depressed because she is a "take charge" kind of person, never thought twice about having her gallbladder removed (I was a nervous wreck thinking of her being under anesthesia at her age but I hid my emotions, I think). Anyway, she said I was "steady as a rock" and a great support, very comforting to know because she comes first right now.

Now I want to know what symptoms to expect as the cancer progresses. Do things tend to go downhill quickly? They have given her Vicodin but she hasn't needed it yet. They want us to set up home health care. They want us to get home hospice in place (she won't go to a hospice outside her home). Help, please! I am very confused about the best choices now.

Tracy R.
Posts: 6
Joined: Feb 2010

My husband was diagnosed with stage IV gallbladder cancer on October 23, 2009 at 9:15 am. He had his portacath put in a week later and we were told that it was for palliative treatment only, that the chemo would not get rid of the cancer as it was too aggressive, but that hopefully it would bide him some time (they told us he has a year at the most).
We were told that the cancer had spread too far into his stomach lining. The surgeon even took pictures to show us, explaining that all of those specks were cancer, describing it to us "like someone put their fingers in paint and just splattered it over and over". Today, February 7, 2011, I am happy to report that my husband is still by my side, feels well and his last PET/CT scan in November not only showed no cancer in his stomach lining, but that there was "no active cancer". He still receives chemo as a precaution, as his oncologist stated that there is probably microscopic cancer but the treatments are further apart and his next scan will be further apart than the usual 3 months. We do not know what is down the road for us, at this time, as we are aware that recurrence is likely (oncologist told us) but going on what they told us to begin with - does anyone really know? I think not! The evening that we received the news that awful day in October when our lives were turned upside down and inside out - I laid my hand on my husband's stomach - praying to the Lord, telling Him that the specialists were saying that my husband was going to die in less than a year and since they couldn't save him, I begged the Lord to help him and as He was the only one that would be able to give us hope. He has answered my prayers, as there is now hope, where before there was none. My husband's chemo regimen: Xeloda (pills) 2 AM and 2 PM - taken for 7 days in a row - every time he was to receive chemo, he took the pills, receiving the chemo on the 4th day while continuing to take the Xeloda through the 7th day. Outpatient chemo of gemzar and taxatere. Inpatient chemo of gemzar, taxatere and cisplatin. My husband continued to eat well on a daily basis. We changed our diets to organic and no red meat. Ordered the Jack Lelane juicer: we drink carrot/asparagus daily along with using it for many other juice combos. Ordered the Montel Williams blender: husband's favorite is soy ice cream with blueberries and flax seeds. No sugar!! Sugar feeds cancer. Look at all your labels in your cupboard - most regular store bought foods have sugar in them which is why we switched to organic. When he receives his chemo he watches dvd's that are directed at the mind talking to the body about healing and the chemo attacking the cancer. If you get netflix type in cancer and a list of movies will come up for you to rent. Also recommend the dvd's on food, example Food Inc. We also ordered the Gerson Therapy but have not followed it to a T - but made many changes following the information. All I know is that my husband feels better and from the beginning he said that he wasn't going to go without a fight - we both decided that even though the oncologist said that nothing could be done and gave us no hope - that we wanted to have no regrets, so we have made changes but only ones that it couldn't hurt to try. He is on vit. B6, vit. D, magnesium but all were through his oncologist. You cannot add supplements without the oncologist approving as many could go against your chemo regimen.
Huge thank you to Lily, for starting this thread, and for being there when I first began this adventure and came online searching for help and found a lady that gave me hope when no one else would. Now for the miracle, I was born on July 30th, 1959 and so was Lily - so many people in the world - what were the odds? Another one of God's miracles. Thank you Lord!
Faith, meditation, diet, exercise, chemo - treat the whole person - what do you have to lose!

EILEENM
Posts: 5
Joined: Dec 2010

Hi everyone, Thanks for setting up this thread as the other one is hard to follow and to get the most recent posting. My dear Mom was diagnosed with gallbladder cancer on Nov 1st 2010 after a routine Gallbladder removal, the liver resection was not an option due to the spread to the Lymph nodes so Pallitive Chemo was the only option. So far she has 2 chemo sessions down, session 3 starts tomorrow. She is doing well, still no cancer symptoms only chemo symptoms. The last round really knocked her out, she was sleeping night and day. So the consultant has decided to reduce the dose. Not sure how i feel about that. After this cycle hopefully they will know how this treatment is actually doing. She is so positive, all the time believing she is going to beat this. As i really need her to, i am here for all the help and support i can get and hopefully will be able to help others too.

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

Hi Eileen,

I'm glad to hear that the chemo sessions are going well. I can relate to sleeping all the time during treatment due to the aggressive treatment that I received and the many pain medications that I was on. Chemo can really beat you up. I looked at it as if my body needs to rest than that is what I was going to do. Just because they said liver resection isn't an option you never know how things can change and it might just become an option after she completes some chemo treatment. I had to endure 9 months of chemo before I was cleared for surgery. Don't give up Hope.

Reduction of the chemo can be a little bit scary but if that is what the oncologist is recommending that that is what needs to be done. The body can only handle so much and then it needs a break. You have to be able to trust the oncologists decision as long as you are comfortable with their decisions. If not then you need to look into other options. Always keep your options open. A positive mindset is very important. The mind can help the body heal.

She is very lucky to have such a kind, caring and supportive daughter. She is really proud of you. You need her and she needs you too.

Let us know how it is going.
Take Care
Lily

JayRay
Posts: 5
Joined: Feb 2011

Lily, Today is my 63 birthday, and I am using the computer my husband just gave me to reach out and make some new friends. I have Stage 3 gallbladder cancer. Like a lot of people I found out about my gb cancer after having routine gallbladder removal. My local oncologist pretty much told me to go home and get ready to die. My family and I quickly realized I needed a second opinion.
I had Stage 1 uterine cancer in 2007 - had total hysterectomy and told I was cancer free. Then in 2008 I had Stage 1 breast cancer-had lumpectomy and radiation and told I was cancer free. So now here I go again, and it doesn't get easier. I live in a little bitty town in Delaware so I ended up going to Fox Chase Cancer Center in Philadelpia, PA which is about two hours from here. So far I have had MAJOR surgery to remove small tumor in liver and clean up gallbladder area - no other signs of cancer, lymph nodes clear and margins clear. When I first saw my scar I thought they had cut me in two. YIKES!
I just finished two cycles of chemo - Gemcitibine which kicked my butt. I have a super sensitive stomach and intestines and I can't seem to get them to settle down. I have to take lots of meds for side effects which leads to more side effects, etc. In March I start daily radiation along with weekly chemo which sounds scary to me.
I'd like to know from those of you who have been down this road some ways to help myself. Any tips or anything you found that could reduce stress and make my body as strong as possible so I don't feel so lousy. I'm trying to stay positive. I wear my Wonder Woman bracelet to each treatment, but today I am feeling like Wimpy Woman. I could use some words of encouragement. Thanks and God bless you. This is a hard fight but it helps to know that people survive and keep going like you are doing. JayRay

maudsie
Posts: 54
Joined: May 2010

Hello JayRay -- it looks like you are about on the same path I am, or was. Same age, same incidental discovery of GB cancer, same follow-up surgery with liver margins clear, and no lymph involvement found. Major difference: you have such a history with other cancers! Yikes! I am so sorry, and here you go again. I really didn't have a tough a time with Gemzar as you seem to be having, so it is difficult for me to advise you about what worked. I had 1-2 bad days every week, and the rest were not great but OK. My radiation coincided with xeloda, which I took before I started the Gemzar. So we are on a slightly different chemo regimen. I will tell you that although radiation is every day, 5 days a week, so it's a real commitment, I found it easy to tolerate. It really didn't make any symptoms worse for me, it was just something that needed to be done every day. Maybe I was a little more tired, but really I managed fine, hard to tell, and I drove myself back and forth to radiation every day. I made a lot of smoothies with fruit and yogurt. Worked for me. Really, the best I can give you here is encouragement: You are doing great, you are on the right path, your chances of beating this thing are very good, you have caught this relatively early and you sought out immediate appropriate treatment and did not take NO for an answer. Bravo! You ARE a wonder woman! Return again soon and let us know how you are doing.
Maudsie

JayRay
Posts: 5
Joined: Feb 2011

Maudsie, I like your attitude. Yes we have to keep strong and keep fighting. I have too much I still want to do. I told Lily and Cheryl that I have been sick. Most likely I have strep throat and I have thrush. On meds for them but still not feeling that great.
You mentioned smoothies too. What do you put in them? Do they help your immune system?
I do know that radiation is a big commitment with it being five days a week. Since I live over two hours from my cancer center, I am going to be staying in Philadelphia for five weeks starting March 14. I hope I have an easy time with my radiation, but I will just have to wait and see. Wish me luck. JayRay

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

Hi JayRay,

Happy Belated Birthday!!! What a great birthday present your husband gave you! Now you have the ability to talk to all of us whenever you would like. I love to make new friends especially when we all have so much in common. This is a terrible disease and it will take all of your super powers to beat this again. Kudos to you for never giving up and always fighting. This is a road that you have already traveled, but you are at a different fork in the road.

I'm so glad to hear that you immediately got a second opinion and didn't stay with that oncologist. Some doctors are just so arrogant that it drives me crazy. Sometimes it is necessary to travel to get the best possible care that you can get. My surgeon was actually 6 hours away in another state, but I can tell you that for me even though it was difficult at times to make that trip it was well worth it. Clear lymph nodes and margins was great news! I think most of us have had that YIKES! moment when we looked at our scars. I call mine my hockey stick, straight down the breast bone, angles to the right hip. Not to pretty either but it is just one of the battle scars that I wear proudly. It is a reminder everyday that I fought the battle and won.

I had Gemcitibine (Gemzar) and Cisplatin, not sure which one was worst. Some people have issues with Gemzar and others don't. I guess it just depends on our bodies. Which is why the oncologist doesn't tell you about everything until you ask questions. They will tell you everybody is different so you just have to wait and see what happens. Make sure that no matter how insignificant the issue may seem get peace of mind for yourself and ask questions. Many people have chemo and radiation at the same time. I have had many people tell me that the radiation makes you very tired. I know that chemo makes you tired but I never had radiation treatment as my liver was compromised and the oncologist and surgeon decided that it wouldn't be a benefit to me. You will just have to have an open mind and take it in stride.

I found that yoga, mediation, light exercise (walking), small meals throughout the day and lots of hydration helped. I also received extra hydration when I was receiving my chemo. It isn't standard in some states but I asked for it. Also eating something light the day before and during the chemo treatment helped. I too was a big smoothie fan along with fruits and vegtables, lean protein. I elimated red meats along with negative people. I got a calandar marked my treatment dates and when I completed them I would mark a big black X through the date. That way I had a visual of how many I finished and how many more I had to go, it made me feel like I was making progress. I kept a log of good days and bad days and then I would try to figure out what was different about the good days vs the bad days. You can help yourself feel better just by finding out what works for you.

You need to find a Wonder Women picture to add to your profile. You are definitely a Wonder Women to me since you have been up to bat twice and have already beat two different types of cancer. Keep swinging and hit it out of the park again.

Let us know how things are going and ask us anything you want, we will try to help.

Take Care
Lily

JayRay
Posts: 5
Joined: Feb 2011

Lily, You seem like such a positive person and that's what I need right now. I was just telling Cheryl that I am brand new to these discussion boards so bear with me if I mess up or am slow at responding. I have been sick with an infection and my dr. thinks it is strep throat and I also have thrush. My immune system doesn't seem to be working very well. I was wondering what do you put in your smoothies? I want to try to build myself up. Thanks for your help. JayRay

maudsie
Posts: 54
Joined: May 2010

Hi, It's Maudsie again, hello JayRay Cheryl and Lily and Radical Truth and everyone. Sounds like in general everyone is doing well.
JayRay! Thrush and strep throat! I hope better today. Immune systems do take a beating when we're on chemo....they may need to give you a week or two off from the chemo to allow your system to build up again to clear the infections, along with the help of the antibiotic for the strep and the antifungal for the thrush. You ask about smoothies. In my case, I didn't, and don't, add anything special. Yogurt and frozen blueberries, mostly, with other fruit. But protein powder is a great idea, and there are all sort of other supplements that others can tell you more about.

Cheryl, there is interpertioneal chemo, instilled directly into the abdominal cavity, and sometimes it's heated for improved action, I don't know how widespread the availability is, however, it's something to research.

Radiation question. I had radiation after the removal of the GB and the liver portion and some lymph. As soon as I was healed enough. Even though there was no evidence of any cancer left, the idea of radiation is just for added insurance. They radiate the gallbladder bed in case leftover cells are lurking about in there. I had the radiation along with xeloda on the same days and same schedule, to potentiate the effect of the radiation. After that, I was on Gemzar for a few months. This was all done in the face of no evidence of lingering cancer, but as we know, scans don't show everything. My oncologist said it's best to go the extra mile. And I'd go as many miles as it takes to improve my chances. Having said all that, there is very little proof that radiation per se helps a great deal in the case of GBC. And of course radiation is nothing to take lightly, as it does have harmful effects too. I don't really know why U.S. and Canada differ in the use of radiation. Maybe has to do with money and/or insurance issues.

Wishing us all well. Spring is coming!

Maudsie

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

HI Maudsie: I saw my oncologist today who was basically flummoxed that the chemo hadn't worked to eliminate or slow down the nodules on the peritonium. He is scheduling another MRI (I had one in December ) to compare results from the CT scan (I will light up for sure!). I asked why no more chemo if in fact the nodules have multiplied even during chemo (my idea is to zap them again and again) but he said that there is nothing to be gained by doing that as the nodules appear to be resistant to the chemo (I was on GemCis for 6 cycles but at 75% dose). No "let's go the extra mile" from him! I noted on another discussion board that taxol and cisplatin were used for peritoneum carcinoma but by that time I was so discouraged my mind was numb. The only other thing I found out when I asked about lymph nodes (mine were never tested as I came into the system as an emergency patient after a horrid surgery that removed the gallbladder, tumour, and part of the liver laparoscopically), was that once you have soft tissue nodules it is assumed that cancer is in the lymph nodes. Yikes. In other words, he may have been telling me go home and wait to die!

However, that is not an option. But can't do much until the MRI. There is only one doctor in Canada who does the intra-peritoneum thing and he is in Calgary, Alberta, a long way from here. And he may only do it for colon cancer. I'll find out though as I'm from Calgary. Unfortunatley our medical systems don't go well between provinces let alone another country.

Not a great day!

Cheryl

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

Hi Cheryl,

Sorry it is a bad day for you but remember we all can get thru the bad days when we talk about them. Tomorrow will be better!

Find an oncologist who will go that extra mile for you! Even if he is in Calgary then go for it if you can. You are stronger now if you have to travel since the chemo treatment is completed. You used to keep your students in line now get your doctor's in line!

Glad to hear that it isn't an option for you. Get the next MRI, do some more research and then go from there.

Yes, there can be options we just have to find them for ourselves.

Take Care
Lily

maudsie
Posts: 54
Joined: May 2010

Hi Cheryl, I hope the days following your last post were better. First, when is your MRI scheduled? Come back after the results and we go from there! There are other chemo cocktails used for GB besides Gem/Cis. I have heard that after a while a cancer can to start to resist what has previously worked. So then you switch to something else. Xeloda. Tarceva. Shoot, I can't remember them all right now. I'd make you a list but I'd have to end this note to go back and find the others. It would have been nice if your doc had immediately suggested some other therapies. They are out there and they have worked. So when you see that guy next, you come armed with information on other therapies that you have found with some research. Challenge him. You are a fighter of the highest order, I have great faith. Looking forward to hearing from you next!
Maudsie

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

Hi Maudsie: My MRI is tomorrow (Sunday) and I meet with the oncologist the following week to discuss results. In the meantime, I'm researching what other treatments there are/have been for this so I have something more to say at our meeting! I haven't heard from anyone that their gallbladder cancer was followed by peritoneal carcinoma but I'm pretty sure it is fairly common given the abdomen's "geography". Most of the information is on lymph nodes but now how to treat them. There is a specialist in Calgary who does the intra flush, but whether I'm eligible is a question given my age and the size of one/some of the nodules (1 cm). I'll keep you posted. Thanks!
Cheryl

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

Hi JayRay,

A positive attitude can be very helpful in fighting this disease. I'm sorry that you have been ill, it just seems to come with the territory. Chemo plays havoc on your immune system for sure. Still even after all this time for me when I get the slightest sniffle it can put me down for a week easily. Strep throat can be awful. You should be very careful when you are out and about. Surgical masks are the way to go, they can help alot.

I just use fresh fruit, vanilla yogurt, skim milk, ice and sometimes a 1/2 tsp. vanilla if the fruit I use is a little bitter. Sometimes granola, flax seed and protein powder. Depending on what I feel like. Others I know make their smooties with carnation instant breakfast mix. I tried all the supplements (ensure, etc.) but I really didn't care for them. Since I like most fruits I would get fresh fruits and then freeze them so that on days I wasn't feeling too hot I could just reach in the freezer for a bag. I was always into making sure that if I was having a good day then I would do whatever I could to make my life easier for the bad days.

Hope you are having a better day today.
Take Care
Lily

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

Hi Jay Ray and others: I was first informed that there could be a "mystery" growth from my gallbladder in November 2009. I had a CT scan in January that showed a definite problem. I saw a gastro-intestinal surgeon after that and had surgery to remove, laparoscopically, the gallbladder and whatever else may be lurking there. I had the surgery April 15. The gallbladder had a 4 cm tumour protruding through its wall and into the liver. The surgeon removed the gallbladder and a portion of the liver, still laparoscopically. However, I ended up with 2nd surgery, open incision, because a blood vessel had burst in my abdomen. I was in intensive care for 9 days. I couldn't start chemotherapy until September as it took that long for the incisions to heal. I had an MRI in July and it showed no tumours, at least none >1cm in size. That was used as the monitoring base. I had 6 cycles of chemotherapy (2 weeks on, 1 week off) using cisplatin and gemitibine. However, after the 1st cycle I was hospitalized because of a bleeding colon and chemotherapy was discontinued until October at a 25% reduced dosage. I also had to have two transfusions to improve my red blood cell count and Neulasta injections to bring up my white blood cell count. I had very little side effects from the chemo - hardly any nausea, just occasional bouts of fatigue, very little hair loss. I finished chemotherapy in early February because MRIs taken in December showed no growths. Now I am on monitoring - CTs or MRIs every 3 months with visits to the surgeon.

Unfortunately just before Christmas I developed an incisional hernia (right where the open incision from the 2nd surgery was located) and now that will have to be fixed.

Before the start of chemotherapy in September and now after it is over I take a lot of anti-oxidants: milk thistle, Vit C, Vit D, selenium, plus pawpaw and turmeric supplements. I try to eat healthily. I didn't have great appetite after the surgery and during chemotherapy, but that has returned with a vengeance - I'm hungry (the cold winter we're having hasn't helped!). As well, I had a positive attitude throughout and a wonderful group of friends as support. I also have a caring little westie (see picture) and looking after her surely helped me "get outside of myself".

So, that is my story!

Cheryl

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

Hi: One thing I forgot - I and none of the gallbladder cancer "victims" I've been corresponding with here in Canada have had (as far as I know anyways) radiation in addition to chemotherapy and yet many (even most) of the USA gallbladder cancer people seem to have radiation as an addition to chemotherapy. Why is this? What is the radiation targeting if the gallbladder and its tumour and in some cases parts of the liver have been removed?
Cheryl

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

Hi: I also forgot this (chemo brain!). Did anyone out there get nodules (likely cancerous) on the omentum or elsewhere in the peritoneum cavity following diagnosis of gallbladder cancer and removal of the gallbladder and whatever else needed to go? My latest CT scan (for another reason not related to cancer) shows these nodules and I'm awaiting an appointment with my oncologist. I have read on another discussion board that intra-peritoneum chemo was the best way to go but I've never heard of this. I assume it means the chemo is directed directly to the peritoneum somehow? Any help on this would be appreciated.
Cheryl

JayRay
Posts: 5
Joined: Feb 2011

Cheryl, Thanks for replying to my post. I am brand new to discussion boards and to using a computer. That's why my husband got me one. I have been sick the past week. I saw my oncologist yesterday. Driving for over 4 hours in a car when you feel lousy makes for a long day. The dr. thinks I might have strep throat although I don't know where I might have got it - my blood count shows I have an infection. Also the dr. said I have thrush so I am on meds for both. I feel my body is overwhelmed from the chemo and I don't know how to stay well. I try to eat well but it is hard when you don't feel good.
Well, I hope things are going better for you. I had to tell you that I love your Westie. I had a Westie for 15 years. He was the best dog. After he died, it took me over two years before I was ready to get another dog. Now I have a 5 yr. old golden retriever that loves to cuddle and I rescued a mixed breed terrier that is 3. He plays nonstop. I miss being able to go on walks with my buddies, but I still spend alot of time just loving them.
I like making pet scarfs so I can raise money for the local shelters. My dream is that one day Delaware will become a no kill state. Oh, I also have our queen cat who rules the house. Yes, I love animals. They have brought me joy all my life and they are good
medicine when I am feeling down. All my best to you, JayRay

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

Hi JayRay: Yes, Charlotte is a sweetie - she was a breeder in a horrible puppy mill near Montreal, PQ for 5 years and terribly mistreated. Don't know how she ended up so sweet but there it is. She just had the end of her tail lopped off by accident at the groomer's and so is sporting a wild purple bandage to cover her stitches (the cut was to the bone!).
I, too, recommend smoothies. They at least go down (although I was only troubled twice by nausea and that after eating something oily). I make mine in a blender with yogurt or soy milk, fresh fruit like blueberries (frozen usually), and a cup full of whey protein powder (that I get at Costco - cheapest place I could find here). I like Vanilla and Chocolate but you can get plain too. A 4.4 lb container cost about $30 and it lasts for a very long time. You get a whopping amount of protein with this. I also drank a lot of Ensure or Glucerna or Boost meal replacements - to me they taste like milkshakes! And salt-free soda crackers do stem the nausea. Here you get anti-nausea stuff with the chemo and pills for 2 days after the chemo to take twice/day. Because I didn't seem to get much nausea, I didn't have to take the expensive nausea pills. The ones I took were free. Avoiding oily fatty stuff helps! We also get steroids with the chemo to stem off the fatigue, at least for a few days after chemo. My most tired moments were after all of the chemo cycles were over. I would go to bed with Charlotte for an afternoon nap and book read. But I haven't been tired for awhile now and so miss those pleasant lazy afternoons!
I still don't know why you are getting radiation if you tumour is gone. Not that you shouldn't, but I don't know why. You are lucky that your lymph nodes were "infected" - that is a big plus!
Keep us "posted" and cuddle your oh-so-sympathetic dogs.
Cheryl

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

Hi JayRay,

I had to comment about you having a golden retriever. My faithful dog DreamStarz was a red golden retriever and she was by my side every step of the way through my treatment. A very gentle and loving dog. She knew when I wasn't feeling well and would cuddle with me. She was always careful when jumping on me, she was light as a feather. I do believe that animals are very special creatures that God created for us to share our lives with.

I had her for a short 5 years and after my treatment was completed I was able to recognize that she wasn't feeling well. I'm sorry to say that she had cancer and we had to put her down. My daughter said she took my cancer from me. Don't know how true that is but you never know. I also at that time had a german shepard who was really my husband's dog who stepped right in and took her place with me. She is now my dog.

I also have a little terrier, pom mix who has only 3 legs. He is a spitfire and we love him very much.

Walking is very good exercise for you right now, even if it only to the end of the street. Take the little one for a small walk if you can, it will make you feel better.

Animals are so comforting no matter what they are. I think we almost need them sometimes more than they need us.

Take Care
Lily

klnh0126
Posts: 13
Joined: Nov 2009

I wrote a long entry explaining my mom and her diagnosis of gallbladder cancer only to find it didn't save or post. I can't write it again because time doesn't allow but I still want to find out if anyone with gallbladder cancer has had any problems with their ureters or kidneys? Long story short my mom has gallbladder cancer stage IV diagnosed in Oct of 09. She was not a surgical candidate and began aggressive chemo in Dec of 09. She did quite well and I firmly believe that is what kept this terrible disease in check. Last August she developed a urinary tract infection and then discovered her ureters were blocked but they couldn't find a reason for the blockage. Stents were needed to keep her kidneys functioning which became severely infection and had to be removed. Nephrostomy tubes were put in which run directly from her kidney through her back and lead to bags for the urine. It solves the kidney function problem but gives her frequent infections which keeps her off chemo. She has had chemo only 2 times since Sept. The medical team from Cleveland Clinic and University Hospitals of Cleveland feel chemo at this time is too risky but to me not doing chemo is a death sentence. Has anyone had a similar situation?

Thanks,
Karen

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

Hi Karen,

Welcome to our group of fighters. What a great daughter you are to come to this board and ask for information regarding this disease. I too was diagnosed as Stage 4 inoperable in 2005. After aggressive chemothearpy I had what is called an Extended (radical) cholecystectomy surgery in 2006 even though originally I was told no surgery, then more chemothearpy in 2007. It is such an aggressive cancer that it does need to be treated aggressively. With this type of cancer many people have different situations that arise from not only the cancer but the chemo, as both create havoc within the body. Many people have had to have stents for differnt reasons and then were able to resume chemo when their bodies were able to handle it again. I wouldn't say that not receiving chemo at this time is a death sentence, it just may be more of a risk for her to receive it at this time. Many have had to take a break from it and then will carry on. You have to believe in your mom and the doctor's that are treating her, if not get second, third even fourth opinions. Patients have to be their own advocates for their healthcare or have someone that they trust to help them down this long road. A positive mindset is a must when facing this terrible disease. We are here for you and your mom.

P.S. I knew your Userid sounded familiar and I went back to check the original discussion thread for Gallbladder Stage 4 regarding your mom. I'm sorry to say that I missed your post that was directed to me, I apologize. I'm glad you came back to talk. That thread became unmanageable and things were getting overlooked, again I'm sorry. Let's start fresh.
Take Care

Lily

4Marias
Posts: 1
Joined: Mar 2011

Hi Lily,

You are truly a blessing. Your positive attitude is a gift and I thank you for sharing it. My sister who lives in Canada was diagnosed with 2 primary cancer the gall bladder and bile duct in May 2010. Since then she has been operated on (removal of the gall bladder & bile duct). Some time in Nov she underwent chemo but stopped as it debilitated her. She started to hallucinate which made her want to stop it. She did not feel it was getting her better. It kept her in bed all day. Since then she has been seen by a kind palliative doctor who keeps track of her medicines and condition. It has helped her a lot in reducing the pain. In December she had some bloating in the stomach area and legs but thank God has been manageable. Her most recent condition has been her turning yellow and recently eating only once a day. She has been in bed recently likely due to her increasing back pain and pain medicines. Is there anything you can suggest for her to take in terms of diet or what she can do to relieve her or make her feel better? Some have mention soursop.

My prayers goes to all, Ann

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

Hi Ann,

Welcome to our discussion thread. You will find that everyone who posts to these boards has a positive attitude about this disease, whether they are patients or caregivers that have completed treatment, are in the midst of treatment, or newly diagnosed. We are there for each other to support the fight against this terrible disease. Where does your sister live in Canada? There are a few Canadians that post on these boards (Cheryl,Jan, Murray, etc.). Having surgery in the beginning is a good thing. I'm sorry to hear that she has stopped the chemo treatment. I have never heard of anyone having hallucinations from chemo. That is a new one for me. Is she heavily medicated since she is in so much pain? If she is comfortable with the palliative doctor than that is a choice that she had made. No one should live their lives in such pain. Jaundice is pretty common with this type of cancer. Some have had to have stents put in their bile ducts due to a blockage, but since you stated they removed the bile duct I'm not sure if this is something that could be done for her. This can extend life and improve the quality of life. Does she have anyone with her at this time that can help support her in this journey? It is important to keep moving as that will help. I'm sure that she is depressed. Who wouldn't be? Mediation, yoga, eating healthy (fruits,vegtables, lean protein) helps. A lot of people say smoothies are the way to go and I agree with them. When you don't feel like eating drinking a smoothie is quite good or at least drinking Ensure or Boost because they have vitamins and minerals that the body needs. When you are undergoing chemo sour things seem to taste better, but since she isn't receiving chemo I don't know if that would apply.
Let us know how she is doing and we will try to help.
Take Care
Lily

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

Hi Ann: I am one of the "Canadians" on the website. I, too, was diagnosed with gallbladder cancer (Stage IV) in early 2010. I had surgery to remove the gallbladder, its tumour, and part of my liver. After 4 months last summer waiting for the open incision to heal, I started chemotherapy (from Sept 2010 to January 2011) in London, ON. I had cisplatin and gemititibine for two weeks, then one week "off". I never really had any problems with it, very little nausea, just occasional fatigue. Since the chemo regime ended, I feel very well although there is a possibility that I have some cancerous nodules on the peritoneum and omentum - I am seeing the oncologist tomorrow. What regime was your sister on and where did she get it? It may be that she could have had a reduced chemo "load" like I did (75%) or changed the chemicals. Did the surgeon remove the tumour in the gallbladder? Were other cancerous tissues observed? It seems odd to me that she had all these symptoms but removal of the bile duct can cause some of them. Jan, also from Canada, has a husband who has had bile duct problems since he was diagnosed with gallbladder cancer. Perhaps she can pass on some suggestions.

By the way, soursop is a tropical fruit that you can get in some grocery stores that cater to people who like to eat exotic fruits and vegetables. You can get it in Toronto for sure. You might tell your sister to try pawpaw pills (pawpaw grows in eastern North america including Ontario - the twigs are used, not the fruit). It is supposed to have some cancer-fighting properties.

Cheryl

bjs
Posts: 23
Joined: Apr 2011

Hello all,
i have not posted for a while because I could not figure out how to post to this site. I hope that this one works! I have gallbladder cancer that has spread to my bile duct but no where else. The location makes it inoperable, but I am hoping that may change down the road. The surgeon did remove my gallbladder back in March. I am undergoing daily radiation for six weeks and taking Xeloda. I have done well with the radiation. However, the Xeloda has caused repeated bouts of hand/foot syndrome that necessitates stopping my chemo for a day or two then resuming at a lower dose. My chemo is oral and I started taking 3,000 mgs. a day and am now on 1,500 and only five days a week. Has anyone else had hand/foot syndrome and how did you treat it? I take 500 mgs. of vitamin B6 three times a day as my oncologist recommended but that does not seem to help.
Any tips would be most appreciated!
Betty

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

Hi: Are you talking about peripheral neuropathy when you say hand/foot syndrome? If you mean numbness and tingling in hands and feet, check out the colerectral discussion boards as this is a common side effect in chemo for colon cancer when taking oxiliplatin and 5FU. If so, several things have been suggested such as alpha linoleic acid, L-glutamine, calcium/magnesium (in Canada given during chemo), and after chemo is over SAMe. If not, ignore!
Cheryl

bjs
Posts: 23
Joined: Apr 2011

Hi Cheryl,
Thanks so much for replying to my post. I know that you are coping with a lot right now. What i have experienced is not peripheral neuropathy but an inflammation and swelling of the hands and feet. It is a common side effect of Xeloda and can lead to permanent problems. It has necessitiated my oncologist lowering my doses of chemo and temporarily stopping it several times. Most material that I reviewed recommends using lanolin but I am allergic to it.
Thanks again and i hope that you are doing well in your treatment.
Betty

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

Hi Betty: I hadn't heard of PPE - now I know! However, the sensitivity issue seems similar as they are both in hands and feet and can be permanent. Not looking forward to it! I start treatment tomorrow. Good luck with your treatments.
Cheryl

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

Hi Betty,

This is a common side effect of Xeloda from what I have heard. Doesn't happen to everyone that is taking that form of chemo but it does happen to some. Everybody is different.
The good news is that you have the best excuse in the world not to do dishes or cook. Heat and friction are the enemy right now. Have you tried placing the palms or bottoms of your feet on an ice pack or a bag of frozen peas? Alternate on and off for 15-20 minutes at a time. That might give you some relief along with Tylenol.
No lotions during treatment but in between treatments try Lubriderm, Udder Cream or Bag Balm. Many people swear by it.
Do a search on PPE for other discussions boards to read.
Hope this helps a little.
Take Care
Lily

bjs
Posts: 23
Joined: Apr 2011

Hi Lily,
Thanks so much! I have seen recommendations of Udder Cream and Bag balm but both seem to contain lanolin and i am allergic to it. My oncologist has reduced my dose of Xeloda to one half of what I took at the beginning and this week I did not get the hand/foot syndrome at all until a brief flare up yesterday. I no longer take chemo on weekends just on radiation days. Fortunately, i only have one week of radiation and chemo left before my month long break. After that, i will not be on Xeloda but on a different chemo administered by port for six months or so. That one should not cause the hand/foot issues, i am told, but I am sure that there will be other side effects. However, i am optimistic that all of this will work and give me many good years.
I have tried the ice and it helps. Thanks!
Betty

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

Hi Betty,

Just wanted to share this with you, it might help. My daughter is also allergic to lanolin and has had eczema since she was a baby. We have found that Cetaphil Moisturizing Lotion worked well for her. It might be worth a try. It is a little more expensive but it was the only lotion we could find that didn't have lanolin in it. Sometimes the reduction needs to be done, because your body didn't like it.
Do you know yet what your new chemo cocktail will be? Have you already had your port inserted? You have to stay optimistic, because it will help you to beat this beast.
Also I have to tell you I love Seattle. I lived and worked in Renton for 3 years in the late 80's. It was so beautiful there.
Let's us know how it is going and stay strong!

Take Care
Lily

maudsie
Posts: 54
Joined: May 2010

Hi, I'm Maudsie, and I have been a L&D nurse and mother/baby/postpartum nurse for years. I retired in 2006 at age 60.....and then less than 2 years later I was diagnosed with GBC. I had my gallbladder taken out and then subsequent surgery to remove some lymph and two wedges of liver. The spread to liver was contained in that small wedge and no other spread was detected .....now, almost three years since diagnosis, so far so good! like you, I started with Xeloda and radiation (both 5 days a week, mon-Fri) and, like you will, I then had chemo through a port. In my case I just received Gemzar (Gemcetibine). I see that now most people are getting a combo of Gemzar with cisplatin or oxcilliplatin. I am betting that you will receive something like this, and really, it's not too bad (remembering of course we are all different). An example of all being different: my oncologist warned me about the possibility of hand/foot syndrome with the Xeloda, but as it turned out, it was not a problem for me. However, if you are looking for a topical cream without lanolin: we had a cream for our new breast-feeding mothers who had sore nipples. We wanted to avoid lanolin-based products (bag balm, etc.) because of possible wool allergies (baby allergies especially). We used, and recommended, a product called "Lasinoh" which is available over the counter in most drug stores, I believe. Seems, however, that you are almost through with the xeloda (YAY!) so maybe this information will not be necessary for you. I thought still I'd mention it for others, not sure if it would help with the problem, maybe just alleviate it a bit.
Good luck to you, and keep in touch here!
Maudsie

bjs
Posts: 23
Joined: Apr 2011

Hello All,

I have not posted for a while because I had a bump in the road. My bile duct stent became clogged and my liver developed an infection. For the benefit of anyone who has a stent, here were my symptoms. Two weeks ago right after completing chemo and radiation, i developed a fever off and on. When it did not resolve after a few days, my oncologist put me on an antibiotic but it worsened over Memorial Day weekend and I developed bad stomach pain and jaundice. i went to the emergency room and after blood tests and an ultrasound, thye determined that the stent was blocked. Ironically, I had planned to have it replaced in a week anyway because I was told they only last "about three months." The doctor who replaced the stent last week told me that actually I should have it replaced every eight weeks which i will do now! It is not a big deal to replace it if it is not clogged. I was only in the hospital three days and am fine now.
I have elected to stay with plastic stents because while a metal stent is more permanent, they tend to clog after a year and cannot be replaced. Apparently, the doctors then put a plastic stent in the metal one so you are back to square one!I have not abandoned the idea of surgery down the road to permanently repair my bile duct after the second round of chemo. I start that on June 21st. It will be once a week injections of Gemzar for six months. My oncologist usually uses Xeloda too but given the severity of my hand/foot syndrome, he does not think it is advised.
Thanks for all the information on creams etc. for the hand/foot. It has resolved now except that my skin is peeling off but that is no big problem. I am feeling well now and have regained my energy and appetite. I was fortunate in not losing any weight during the radiation/chemo and had very little nausea. We are off next weekend for a week visit with my boy/girl twin grandchildren who i have not seen for over months!
Thanks and best wishes to all,
Betty

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

Hi Betty,

Welcome back!! We have missed you! What a great attitude you have! Bumps in the road in this long journey are a given. Why didn't they tell you in the beginning 8 weeks instead of 12 weeks? If you knew that you could have swerved and missed that bump all together. Now not only do you know but so do we. Thanks for the information! I'm glad that your hospital stay was for only three days and you are doing well now. I'm with you why even bother with the metal stent if after 1 year you will have the problem again. That just doesn't make much sense to me. I think you made the right decision. That can be a surgery (repair bile duct) that you can have done after you complete your chemo, 2012. Just take it one step at a time. Hopefully for you this next round will be smooth sailing. You are really lucky that your side effects were minimal.

Safe travels next week and enjoy your grandkids. You will have a great time!
Let us know how the next round goes after you get back.
Take Care
Lily

bjs
Posts: 23
Joined: Apr 2011

Hello All,
My husband and I had a wonderful visit with my grandchildren in DC last week and this week i am back to what i call my "job" fighting my cancer! I had blood tests and CT scans this week and generally the results were good. The "tumor markers" in my blood had dropped from over 200 three months ago to 70. Since normal is 40 or below, that is a nice improvement from Round 1 of chemo plus radiation. The cancer that spread to my bile duct has always been small and hard to see and remains that way so it is no larger and may have shrunk. The only negative was an area on my liver near the surgery site. However, my oncologist said that it may be surgical scarring or from the liver infection I had twoweeks ago from the blocked stent in my bile duct. We will check it again in three months. It would seem inconsistent with the blood test results for the cancer to have apread. I had no sign of cancer any where else in my body which was a great relief!
I started my round 2 treatment yesterday with Gemzar by infusion once a week and Xeloda orally every day at the low dose that I can tolerate without deveolping hand/foot syndrome. I will be two weeks on and one week off for a planned six months.
I get so much support and courage from reading all of your stories. Thanks for all of the great information.
Betty

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

Hi Betty,

Welcome back! I'm so glad you had a wonderful time on your trip! Grandchildren are such a blessing and are so much fun! It sounds like you are doing a very good job and the chemo is doing its job. You have been successful and lets keep that going. I agree with the oncologist that it could possibly be surgical scarring. We all have surgical scarring with the operations that they have put us through. Three months seems to be the stardard time frame for CT scans in the beginning. You should be dancing with joy receiving such good news. Who ever thought you would celebrate a CT Scan? We all do! We hate to have them done, but they are a neccessary evil and the relief you feel after you get the report is amazing. Hope that this next round goes well for you with little or no side effects.
Let us know how you are feeling and keep us updated.

Take Care
Lily

bjs
Posts: 23
Joined: Apr 2011

Hello Lily and all who post here,

It helpss so much to hear about all of your experiences. I was actually a bit down about my liver "spot" but hearing from several of you that you had similiar things makes me feel better and helps me to view my test results in a more positive light. Lily, you are right that getting the CTs and blood tests is hard. i was surprised at how much i dreaded it this time. I know that I will have to do it every three months, at least, so I have to get used to it!
My oncologist is optimistic about keeping me "going" for a prolonged time but says that this cancer is incurable. that is not my view! I have not given up on surgery down the road or other means to eradicate it. My general practice doctor told me recently not to give up on anything because she thinks that I am doing well!
i have found two very helpful books, one is "Anticancer: A New Way of Life" by David Servan-Schreiber, MD, PhD. I have seen others mention this book and I find it very helpful. The other book is "The Journey through Cancer: Healing and Transforming the Whole Person" by Jeremy Geffen, MD. The author is an oncologist who has worked in integrative programs to combine the best is Western medicine with other healing traditions. I have found that this book is great for the mental and emotional aspects of fighting cancer which we all know are just as important as the physical battles!
Take care,
Betty

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

Hi Betty,

Good to hear from you! I'm so glad our responses are helpful to you. We all get down sometimes but on those days just let the world pass you by and just rest. Tomorrow is another day and it will be better. Tests are never easy but you just have to get through them. I know that at this point in my life I probably glow in the dark!
I'm so glad that your doctors are giving you positive feedback. They know that you are doing well and having a positive attitude can really help. Never give up on the possiblity of surgery. It took me almost a year and three visits to the surgeon (in another state) and repeated tests before I was give the chance of a lifetime. Maybe because I just kept coming back that he decided that I was never going to go away. Who knows??
Thanks for sharing the book on "The Journey through Cancer Healing and Transforming the Whole Person", I haven't read that one and I will be sure to pick it up. I truly believe that you have to have the whole influence of Eastern and Western medicine for total body wellness. Since this disease attacks the physical as well as the mind, body and spirit you have to care for them all, not just the physical. Thanks again!
Let us know how you are doing, keep us updated.
Take Care
Lily

bjs
Posts: 23
Joined: Apr 2011

Hi All,

I had my bile duct stent replaced this week and it was the first of the three that was planned and routine, not an emergency. It went very smoothly and the doctor said that the insertion of the new stent was very easy. Of course, my hope is that the cancer has shrunk as a result of the radiation and chemo. Because the stent pathway bypasses the cancer, my doctor could not tell if that was the case.
I have had a few more bumps due to chemo issues. I spent the weekend in the hospital a couple of weeks ago due to a "fever of unknown origin." All that the tests showed was a slight sinus infection that should not have caused a high fever. But the hospital stay proved to be fortuitous because they did blood tests ad discovered that my WBC and RBC were dangerously low. I had two units of red blood cells and now will have shots every two weeks to keep the WBC up. the first shot caused severe bone pain but I was told that to prevent that in the future, I should take Claritin-D for a day before the shot and for several days after. Seems bizarre to me, but it works!
I have also developed blood clots in a vein in each arm and one of those caused cellulitis. I am on an antibiotic for it and it is better.
All of these things may be caused by my deciding not to get a port. Because the infusion of Gemzar burns, the nurses have reduced the flow and that increases side effects such as mine. So i have decided to get a port and have scheduled that. I will have one more infusion in my arm next week but that will be the last before the port is installed. Since I need this chemo through December, I do not want to chance more serious side effects, especially the low blood cell counts.
I find all of this has gotten me down but I try to remember that none of it directly relates to the cancer and there is no reason to believe that it has worsened. In fact, the testing has been mostly good so I push on!
All the best,
Betty

klnh0126
Posts: 13
Joined: Nov 2009

Hi Lily

My mom just started Xeloda about 10 days ago. I was wondering why you said no lotion during treatment but only in between? I've been applying Udder cream about 4 times a day in hopes of avoiding the hand/foot syndrome. Am I doing this wrong? Just today she feels the bottom of her feet are getting tingly. Also, even with my mom's insurance the Xeloda is costing her a $525 copay. This is a definite hardship along with the other meds and copays for the million appointments and procedures she has. I'v been exploring the options of copay financial assistance and have found out something rather incredible. There is help out there for many but not if your cancer is gallbladder cancer. The many organizations actually exclude certain cancers. I was shocked. Does anyone know of financial help for gallbladder cancer patients?

My thoughts and prayers to all,
Karen

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

Hi Karen,

You are not doing anything wrong, you are just trying to give your mom the best care possible. It is important to keep her skin moisturized with lotions so it doesn't dry out and crack. I was told that with the diagnosis of Hand and Foot Syndrome that the actual process of applying the lotin would cause friction and therefore not to do it during treatment.
It is possible that the tingly feeling that she has in bottom of her feet could be neuropathy. I had and still have it in my hands and feet. I take a supplement that my oncologist recomended. It is called L-Glutamine. I take 500mg twice a day and it really helped. I was able to take it all through treatment. Check with her oncologist and see if she can take it.
Yes, I know all too well that treatment is so very expensive. I am still paying off medical bills and will for quite a while. Gallbladder Cancer doesn't get the attention it needs to. So many times things aren't paid for even by the insurance companies because statistically this is not a disease with a high rate of success. Have you checked with your local ACS office? They might be able to guide you to resources that may be available. Also has your mother started paperwork for Social Security? Gallbladder Cancer has been added to the Compassionate Allowance Listing for expediated disability claims. Just an idea.

Let us know how she is doing.
Take Care
Lily

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

Hi: I found the same thing here in Ontario. There isn't a specific chemo regime for gallbladder cancer so you have to "use" treatments from other cancers like colon cancer. Because of that oxaliplatin which I am taking isn't covered by the government or by my private plan but would be if I had colon cancer. There are so few of us and no research and the research is way outdated. I don't know how to change that. I'm borrowing up to $30,000 from my retirement funds - hopefully it will be worth it! Surely there must be help somewhere (but I didn't find any).
Cheryl

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

Of interest to any Canadians/Ontarians out there. I also found out that drugs like oxaliplatin are considered "hospital only" drugs (to my mind all chemotherapy drugs are hospital only, meaning they have to be administered in a hospital setting), and as such aren't covered by private plans. They should be covered by government plans but some aren't like in Ontario Oxaliplatin. So they fall between the cracks especially if there is no one there to see them go! A real learning experience!
Cheryl

klnh0126
Posts: 13
Joined: Nov 2009

Lily and Cheryl,

Thanks for the posts. It truly is an expensive disease. I'm going to keep trying and if I find anything I'll let you know. I feel like starting a gallbladder assistance program myself but of course since there is a limited amount of people that get the disease you are probably limited in the number that would contribute. I don't have the energy or knowledge of how to do that anyways.

My mom has been very sad lately. She makes comments like she doesn't want to live like she is right now but also doesn't want to die. She declined so rapidly. Only 2 months ago she was working and developed blood clots in her lungs and leg which kept her home from work for supposedly 3 weeks. One thing after another is going wrong and she hasn't gone back at all and is barely able to get out of her chair.

She put a lot of hope in the Xeloda but after 1 round she feels no improvement. Her Primary Care Doc told her it should improve her ascites in the abdomen which is causing a lot of discomfort and pain. I almost wish she didn't say that because my mom is so disappointed in the "no relief". We are discussing a drain being put in at the next oncologists appt which he is not too fond of doing but we are getting desperate.

Take care all,

Karen

P.S. So far so good with 1 round of Xeloda-no hand and foot!!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network