Gallbladder Cancer - 2011

jackson1

maudsie said:

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

Gallbladder cancer spread to liver
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.

westie66

westie66 said:

Karen's Mom and CoPay
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

Co Pay
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

westie66 said:

Karen's Mom and CoPay
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

Copay and Mom
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!!

Lily50

klnh0126 said:

Copay and Mom
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!!

Karen's Mom
Hi Karen,

Yes, any type of cancer diagnosis can be quite expensive. I think most of us have the same feeling about trying to do something to help others but don't know how to go about it. I probably should quit talking about it and start doing something even if it is just small.

It is quite understandable that she is feeling sad. It is easy to have blue days sometimes. It is good that she doesn't want to die and she has to realize that this is a journey that she has to go through. It isn't easy and has many twists and turns, ups and downs in the road. I think that most people ignore all the symptoms in the beginning and once the reality hits of the diagnosis it is like someone knocked the air out of you. So many conflicting thoughts cross your mind. No one ever thinks that in a moment everything about your life has changed.

Since your mom hasn't gone back to work is she on STD or LTD currently with her employer?
The reason I'm asking is because she would probably qualify for Social Security as disabled. Gallbladder Cancer was added to the Compassionate Allowance List for disability. For me it was a very hard decision to make because I always thought that I would be able to go back to my career (since I was only 46) once I resolved what I felt was a minor event in my life. Little did I realize that it would be a major event in my life.

We always want instant results but sometimes that isn't possible. It isn't unusual for stents to be put in when ascites is present. I have been told by others that they had to have that done. Why is the oncologist not fond of doing this procedure? Have you asked him what his reasoning is? Desperate situations sometimes requires desperate measures.

My heart goes out to you and your Mom as I feel I can truely understand her frustrations along with others that post to these boards. It is a very ugly disease and will take all of her strength to get through this. Yay, no hand and foot!!!

Let us know how it progresses.
Take Care
Lily

Sharon Lee

Lily50 said:

Karen's Mom
Hi Karen,

Yes, any type of cancer diagnosis can be quite expensive. I think most of us have the same feeling about trying to do something to help others but don't know how to go about it. I probably should quit talking about it and start doing something even if it is just small.

It is quite understandable that she is feeling sad. It is easy to have blue days sometimes. It is good that she doesn't want to die and she has to realize that this is a journey that she has to go through. It isn't easy and has many twists and turns, ups and downs in the road. I think that most people ignore all the symptoms in the beginning and once the reality hits of the diagnosis it is like someone knocked the air out of you. So many conflicting thoughts cross your mind. No one ever thinks that in a moment everything about your life has changed.

Since your mom hasn't gone back to work is she on STD or LTD currently with her employer?
The reason I'm asking is because she would probably qualify for Social Security as disabled. Gallbladder Cancer was added to the Compassionate Allowance List for disability. For me it was a very hard decision to make because I always thought that I would be able to go back to my career (since I was only 46) once I resolved what I felt was a minor event in my life. Little did I realize that it would be a major event in my life.

We always want instant results but sometimes that isn't possible. It isn't unusual for stents to be put in when ascites is present. I have been told by others that they had to have that done. Why is the oncologist not fond of doing this procedure? Have you asked him what his reasoning is? Desperate situations sometimes requires desperate measures.

My heart goes out to you and your Mom as I feel I can truely understand her frustrations along with others that post to these boards. It is a very ugly disease and will take all of her strength to get through this. Yay, no hand and foot!!!

Let us know how it progresses.
Take Care
Lily

Hi Survivors:
I noticed that several of you wonderful survivors have had surgery to remove your GB cancer. My husband had very radical surgery about one month ago. A portion of his liver, his bile duct, his gallbladder and part of his pancreas were removed. My question is were you able to eat much following surgery? He has no appetite and I am stumped as to what to feed him. When did you feel like eating again following your surgery and when did your energy start to come back. I don't know if this is normal given the extent of his surgery but it does worry me.
Sharon

westie66

Sharon Lee said:

Hi Survivors:
I noticed that several of you wonderful survivors have had surgery to remove your GB cancer. My husband had very radical surgery about one month ago. A portion of his liver, his bile duct, his gallbladder and part of his pancreas were removed. My question is were you able to eat much following surgery? He has no appetite and I am stumped as to what to feed him. When did you feel like eating again following your surgery and when did your energy start to come back. I don't know if this is normal given the extent of his surgery but it does worry me.
Sharon

Hi Sharon: Lily will give you much more information as she had much the same, if not more, surgery your husband did. I only had the gallbladder, its tumour, and part of my liver removed. I too lost my appetite for months actually and lost about 30 lbs (which I could afford to lose!). I had to wait for chemo to start (4 months) because the incision wouldn't heal. Anyways, I knew I had to eat to stay healthy and to get ready for the chemo so I ate. I started slowly - lots of ENSURE or BOOST, lots of healthy smoothies made with whey protein powder, soy milk, real fruit, eggs, white rice; I tried to eat a balance between low fibre and medium fibre because diarrhea can become an issue and for that you need low fibre (against all rational thinking!). My doctor said eat anything you like, because you'll eat what you like and will avoid what you don't like. How true! I took lots of supplements like milk thistle, paw paw, Vit E, Vit C, Vit D, selenium, green tea, turmeric - there is a wonderful book out there by a doctor whose name I can't remember but he was diagnosed with inoperable brain cancer and is still here 20 years later - he tells it all re eating.
You have to build his strength up for the upcoming chemo.
Lily?
Cheryl

haugy

westie66 said:

Hi Sharon: Lily will give you much more information as she had much the same, if not more, surgery your husband did. I only had the gallbladder, its tumour, and part of my liver removed. I too lost my appetite for months actually and lost about 30 lbs (which I could afford to lose!). I had to wait for chemo to start (4 months) because the incision wouldn't heal. Anyways, I knew I had to eat to stay healthy and to get ready for the chemo so I ate. I started slowly - lots of ENSURE or BOOST, lots of healthy smoothies made with whey protein powder, soy milk, real fruit, eggs, white rice; I tried to eat a balance between low fibre and medium fibre because diarrhea can become an issue and for that you need low fibre (against all rational thinking!). My doctor said eat anything you like, because you'll eat what you like and will avoid what you don't like. How true! I took lots of supplements like milk thistle, paw paw, Vit E, Vit C, Vit D, selenium, green tea, turmeric - there is a wonderful book out there by a doctor whose name I can't remember but he was diagnosed with inoperable brain cancer and is still here 20 years later - he tells it all re eating.
You have to build his strength up for the upcoming chemo.
Lily?
Cheryl

the book is called
Anti
the book is called
Anti Cancer a new way of life
by David Servan-Schreiber m.d. ph.d.

Lily50

Sharon Lee said:

Hi Survivors:
I noticed that several of you wonderful survivors have had surgery to remove your GB cancer. My husband had very radical surgery about one month ago. A portion of his liver, his bile duct, his gallbladder and part of his pancreas were removed. My question is were you able to eat much following surgery? He has no appetite and I am stumped as to what to feed him. When did you feel like eating again following your surgery and when did your energy start to come back. I don't know if this is normal given the extent of his surgery but it does worry me.
Sharon

Sharon's Husband
Hi Sharon,
Welcome to our discussion group! We are so glad that you found us!
I'm so sorry that this disease has touched your lives. The good news for your husband is that he was able to have surgery. Will he be having and chemo or radiation treatments? What Stage did they classify it as? Where are you located at?

Now on to your questions. I wasn't able to eat much after my surgery. I had 11 months of chemo before my surgery so my appetite was already gone. I lived off of small meals throughout the day. Smoothies were a mainstay with fresh or frozen fruit. Oatmeal, granola cereal, rice, pasta (olive oil), eggs, applesauce, chicken, turkey, fish, fresh fruits and vegetables. You have to start with very small portions because of the radical surgery his digestive tract will never be the same. Fiber is a must. I know as Cheryl stated that it is important to drink Boost or Ensure to make sure you get what you need, but I really didn't care for either of them. Even if he isn't hungry he has to make himself eat. It is a very long process to go through but one day he will want to eat everything in site. Everyone is different but as his body recuperates from the surgery his appetite will come back. You have to be mindful of things that can cause issues such as red meats, spicy foods, nuts, popcorn, etc. It is a trial and error adjustment period for him but he will find his way with your support. Now as far as energy goes again everyone is different. Exercise helps even if it is just walking around the block. After my surgery I had to do an additional three months of chemo so I would have to say for me that after completing my treatment (which was 1 1/2 years) after about 6 months I was able to do more. My body, mind, and spirit were beaten up. Recovery from this disease takes time and patience.
You have every right to be worried about the man that you love and your support will help him. Finding the new norm for him will take time.

Ask us anything we will try to help you!
Take Care
Lily

westie66

haugy said:

the book is called
Anti
the book is called
Anti Cancer a new way of life
by David Servan-Schreiber m.d. ph.d.

Book
Yes, that is it - the Anti Cancer Diet: A New Way of Life. Thanks, Murray.
Cheryl

Lily50

haugy said:

the book is called
Anti
the book is called
Anti Cancer a new way of life
by David Servan-Schreiber m.d. ph.d.

Anti Cancer Book
Hi Murray!

Thanks for the info! Hope you are doing well!
Take Care
Lily

bjs

maudsie said:

Hi Betty
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

Update and thanks
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

bjs said:

Update and thanks
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

Betty's Progress
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

Lily50 said:

Betty's Progress
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

Update on Ct Scan and other tests
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

maudsie

klnh0126 said:

Copay and Mom
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!!

ascites
Hi Karen -- I've been away from this board a while so I just want to say hello to you, and Cheryl, and Lily, and all my friends here. I am doing fine. I wanted also to chime in with my two cents about what to do about ascites. Generally, I think, what is being done is an abdominal pericentesis and isn't too big a deal and can really alleviate symptoms. Rather than a stent of some kind, under local anesthesia you get a needle placed briefly into the abdominal cavity and excess abdominal fluid is drawn out, up to a liter or two at a sitting. This can be done in a matter of minutes and doesn't require hospitalization in most cases. It may have to be done again after a while, as more fluid gathers, but it's great for doing now and then and most certainly can give relief. There is no reason to carry this pain and discomfort from something like ascites when there is a fairly simple procedure to keep it under control. Hope this helps.
Big hugs all around to you all!
Maudsie

Lily50

bjs said:

Update on Ct Scan and other tests
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

Betty's Update
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

Lily50

maudsie said:

ascites
Hi Karen -- I've been away from this board a while so I just want to say hello to you, and Cheryl, and Lily, and all my friends here. I am doing fine. I wanted also to chime in with my two cents about what to do about ascites. Generally, I think, what is being done is an abdominal pericentesis and isn't too big a deal and can really alleviate symptoms. Rather than a stent of some kind, under local anesthesia you get a needle placed briefly into the abdominal cavity and excess abdominal fluid is drawn out, up to a liter or two at a sitting. This can be done in a matter of minutes and doesn't require hospitalization in most cases. It may have to be done again after a while, as more fluid gathers, but it's great for doing now and then and most certainly can give relief. There is no reason to carry this pain and discomfort from something like ascites when there is a fairly simple procedure to keep it under control. Hope this helps.
Big hugs all around to you all!
Maudsie

Maudsie's great advice
Hi Maudsie!

Glad you are doing well. Your two cents carry lots of weight with us. We are so lucky to have you as a resource. Being a retired R.N. means you have the technical training that the rest of us don't. Your words give us great comfort and can alleviate many fears.
You are a blessing to us all.
Hugs back!!!!
Take Care
Lily

Sharon Lee

Lily50 said:

Sharon's Husband
Hi Sharon,
Welcome to our discussion group! We are so glad that you found us!
I'm so sorry that this disease has touched your lives. The good news for your husband is that he was able to have surgery. Will he be having and chemo or radiation treatments? What Stage did they classify it as? Where are you located at?

Now on to your questions. I wasn't able to eat much after my surgery. I had 11 months of chemo before my surgery so my appetite was already gone. I lived off of small meals throughout the day. Smoothies were a mainstay with fresh or frozen fruit. Oatmeal, granola cereal, rice, pasta (olive oil), eggs, applesauce, chicken, turkey, fish, fresh fruits and vegetables. You have to start with very small portions because of the radical surgery his digestive tract will never be the same. Fiber is a must. I know as Cheryl stated that it is important to drink Boost or Ensure to make sure you get what you need, but I really didn't care for either of them. Even if he isn't hungry he has to make himself eat. It is a very long process to go through but one day he will want to eat everything in site. Everyone is different but as his body recuperates from the surgery his appetite will come back. You have to be mindful of things that can cause issues such as red meats, spicy foods, nuts, popcorn, etc. It is a trial and error adjustment period for him but he will find his way with your support. Now as far as energy goes again everyone is different. Exercise helps even if it is just walking around the block. After my surgery I had to do an additional three months of chemo so I would have to say for me that after completing my treatment (which was 1 1/2 years) after about 6 months I was able to do more. My body, mind, and spirit were beaten up. Recovery from this disease takes time and patience.
You have every right to be worried about the man that you love and your support will help him. Finding the new norm for him will take time.

Ask us anything we will try to help you!
Take Care
Lily

Post Surgery Complications
Hi:
My husband, age 53 has gb cancer and is recovering from major major surgery. I know what you Lilly mean about your mind, body and spirit being beaten up. You sure fought back though!
Hubby had his surgery May 4, 2011. He has had a couple of complications. A portion of his incision split open about a week after surgery. That has finally started to heal. Also he has developed an abdominal abscess (which became infected). The docs inserted a drain and it looks like it could be in for a while. He is weak, often nauseus and it tears me apart to see him go through this but there is no alternative so we are thankful, very very thankful that he has had the surgery warts and all.
Thank you for telling us about your ordeal ladies. The battle is sooooooooo hard, so long and your posts help to keep me going.

Lily50

Sharon Lee said:

Post Surgery Complications
Hi:
My husband, age 53 has gb cancer and is recovering from major major surgery. I know what you Lilly mean about your mind, body and spirit being beaten up. You sure fought back though!
Hubby had his surgery May 4, 2011. He has had a couple of complications. A portion of his incision split open about a week after surgery. That has finally started to heal. Also he has developed an abdominal abscess (which became infected). The docs inserted a drain and it looks like it could be in for a while. He is weak, often nauseus and it tears me apart to see him go through this but there is no alternative so we are thankful, very very thankful that he has had the surgery warts and all.
Thank you for telling us about your ordeal ladies. The battle is sooooooooo hard, so long and your posts help to keep me going.

Post Surgery Complications
Hi Sharon,

Good to hear from you! The surgery that your husband has had is a major, major surgery. But you have already realized that. Recovery is a slow process. Patience is the key. I know that in his mind he feels okay done with that now I can go back to "normal". The problem with that statement is that he will now have to find his "new normal". It is amazing how this disease changes you attitude about life. Things that were ever so important before, no longer are. He needs to let his body heal from such a traumatic event. We are a society of immediate gratification and this will be something that is a gradual process. It isn't unusual to have a few complications after this surgery. I can remember a time when I wasn't even able to open a bottle of water. It does get better. Does he have nausea medication? If it isn't working ask the doctor for something else. I actually found for me that Lorna Doone shortbread cookies helped better than the pills. Also be very mindful of the pain medications as most of them are highly addictive. I believe that you should take the pain pills to elevate the pain and help you to rest, but it is very easy to get into a stupor if you are not careful. I still will take them occassionly when I have done too much.

Make sure that you take care of yourself also. Sometimes I feel that this disease can be harder on the caregiver than the actual patient.

Let us know how he continues to progress. We are here for you!

Take Care
Lily

bjs

Lily50 said:

Betty's Update
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

Thanks
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

westie66

Lily50 said:

Maudsie's great advice
Hi Maudsie!

Glad you are doing well. Your two cents carry lots of weight with us. We are so lucky to have you as a resource. Being a retired R.N. means you have the technical training that the rest of us don't. Your words give us great comfort and can alleviate many fears.
You are a blessing to us all.
Hugs back!!!!
Take Care
Lily

Ascites
Hi Maudsie, Lily, and all: I was talking to a nurse at our cancer centre during my chemotherapy and she said that women come in regularly (mostly ovarian cancer patients) to have ascites drainage. As Maudsie says, it took only a few minutes and they were good to go but feeling much better!
Good to see you "back" Maudsie!
Cheryl