Gallbladder Cancer - 2011

2011
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

unknown said:

This comment has been removed by the Moderator

2011 Stage IV Gallbladder Cancer
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!

JayRay said:

Gallbladder cancer
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

Hi JayRay
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

westie66 said:

Gallbladder cancer
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

Radiation Therapy
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 said:

Gallbladder cancer
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

I Love Your Dog
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

maudsie said:

Hi JayRay
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

Thanks for your reply
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

JayRay said:

I Love Your Dog
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

Gallbladder Cancer
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

maudsie said:

Hi JayRay and others
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

Peritoneal Carcinoma
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