Gallbladder Cancer - 2012 (Any Stage)

Meg2003

westie66 said:

Gallbladder and liver cancer
HI LIly and Meg: It was me, Lily, who recommended she talk to you on this discussion thread. I recommend an aggressive chemo treatment like you had, LIly, and perhaps check out the Mayo Clinic (is Minnesota in the mid-west? I'm a CAnadian so am hopeless!). A friend of mine with gallbladder cancer went there from CAnada and had wonderful aggressive treatment. But his cancer had not spread to the liver or rib cage. Mine may have spread to the liver, it certainly has spread to the peritoneum.
Cheryl

Cancer Centers
I think we've decided to go with Cancer Treatment Centers of America in Tulsa, I have not found anyone who had a single bad thing to say about it (everyone raves about it). He would receive most of his treatments there and they offer complimentary services that include a nutritionist, counselers (for patient and family, homeopathic meds to help deal with the side effects of the chemo.

Right now we're just trying to get him out of the hospital because the longer he's in there, the more depressed he gets. We're hoping to submit the forms tomorrow so they can get him in next week. As of right now, we don't even know what stage he is or if it has spread to his lymph nodes.

Thanks for the info.

westie66

Monarch said:

Sorry you're here...but glad you joined us
Meg,

I hate that you've had to find us but I am so glad you did! This is a wonderful community where hope and knowledge is shared like nowhere else.

I was born and raised in the Chicago area. Mayo was always the go-to place for anything major.

From my research, there are 3 major cancer centers who have more experience with gallbladder cancer than other places - Sloan-Kettering in New York. MD Anderson in Houston. And, Dana-Farber in Boston. Some of the folks on this board go to Sloan-Kettering.

You dad is a fighter. He's proven that by being a 20-year survivor of colon cancer. All of you should take hope and strength from that!

There are a couple other GBC threads here on the "rare cancers" board. Both of them started by Lily. Page down until you find them. There is a lot of info in those. Print some of the posts off for your dad to read. He will see that there is always hope...and miracles do happen.

Best to you and your family. Please keep us updated...and ask any and all questions you have.

Charmi

Gallbladder Cancer
Likely a good choice Meg. We don't have those here in Canada. But I have heard of at least two that Charmi mentions. I have to correct something from my friend from Canada who went to Mayo. He did in fact have liver cancer as well as gallbladder cancer. And they apparently got it all. Amazingly they still go over scans done in Canada with him. That's good service!
Good luck for your husband. I've alerted Lily by email that you are asking for information.
Cheryl

westie66

Monarch said:

Sorry you're here...but glad you joined us
Meg,

I hate that you've had to find us but I am so glad you did! This is a wonderful community where hope and knowledge is shared like nowhere else.

I was born and raised in the Chicago area. Mayo was always the go-to place for anything major.

From my research, there are 3 major cancer centers who have more experience with gallbladder cancer than other places - Sloan-Kettering in New York. MD Anderson in Houston. And, Dana-Farber in Boston. Some of the folks on this board go to Sloan-Kettering.

You dad is a fighter. He's proven that by being a 20-year survivor of colon cancer. All of you should take hope and strength from that!

There are a couple other GBC threads here on the "rare cancers" board. Both of them started by Lily. Page down until you find them. There is a lot of info in those. Print some of the posts off for your dad to read. He will see that there is always hope...and miracles do happen.

Best to you and your family. Please keep us updated...and ask any and all questions you have.

Charmi

Gallbladder Cancer
Likely a good choice Meg. We don't have those here in Canada. But I have heard of at least two that Charmi mentions. I have to correct something from my friend from Canada who went to Mayo. He did in fact have liver cancer as well as gallbladder cancer. And they apparently got it all. Amazingly they still go over scans done in Canada with him. That's good service!
Good luck for your husband. I've alerted Lily by email that you are asking for information.
Cheryl

Meg2003

westie66 said:

Gallbladder Cancer
Likely a good choice Meg. We don't have those here in Canada. But I have heard of at least two that Charmi mentions. I have to correct something from my friend from Canada who went to Mayo. He did in fact have liver cancer as well as gallbladder cancer. And they apparently got it all. Amazingly they still go over scans done in Canada with him. That's good service!
Good luck for your husband. I've alerted Lily by email that you are asking for information.
Cheryl

Update
We finally got my dad out of the hospital (which was a complete nightmare) and he has fluid in his gallbladder which we are assuming is from the cancer, does that sound right? If that is the case, then it looks like this is going pretty fast because as of Monday, there was no fluid.

We are doing everything we can to get him into the cancer center ASAP because he still hasn't even seen an oncologist. Since he was in the hospital, shouldn't they have sent an oncologist in the moment they knew it was cancer? I'm rather frustrated. The center we're going to in 4 hrs away and we most likely won't get in until the end of the week and feel like we're making no progress in fighting this thing.

Can you tell me what to expect for the first few months of treatment. it look like it's 5 days a week for the first 6 weeks and then is it less?

As of right now, my dad is extremely down and out. Anytime the nurses mentioned the words 'make you comfortable' he took that as he was going home to die. How do I encourage him to fight because as of right now I feel like he's giving up. He's worried about feeling even worse once treatment starts. We need him to fight (which is completely selfish) but we just can't give up on him.

Meg2003

westie66 said:

Gallbladder Cancer
Likely a good choice Meg. We don't have those here in Canada. But I have heard of at least two that Charmi mentions. I have to correct something from my friend from Canada who went to Mayo. He did in fact have liver cancer as well as gallbladder cancer. And they apparently got it all. Amazingly they still go over scans done in Canada with him. That's good service!
Good luck for your husband. I've alerted Lily by email that you are asking for information.
Cheryl

Update
We finally got my dad out of the hospital (which was a complete nightmare) and he has fluid in his gallbladder which we are assuming is from the cancer, does that sound right? If that is the case, then it looks like this is going pretty fast because as of Monday, there was no fluid.

We are doing everything we can to get him into the cancer center ASAP because he still hasn't even seen an oncologist. Since he was in the hospital, shouldn't they have sent an oncologist in the moment they knew it was cancer? I'm rather frustrated. The center we're going to in 4 hrs away and we most likely won't get in until the end of the week and feel like we're making no progress in fighting this thing.

Can you tell me what to expect for the first few months of treatment. it look like it's 5 days a week for the first 6 weeks and then is it less?

As of right now, my dad is extremely down and out. Anytime the nurses mentioned the words 'make you comfortable' he took that as he was going home to die. How do I encourage him to fight because as of right now I feel like he's giving up. He's worried about feeling even worse once treatment starts. We need him to fight (which is completely selfish) but we just can't give up on him.

Cynth89

Lily50 said:

Cynthia's Mum
Hi Cynthia,

Yes it is wonderful. I was in the midst of treatment when she graduated from High School which was quite emotional. This December she graduated from the University and that was really emotional as I never knew if I would still be here to see it. Now the goal is to see her get married. Grandkids can wait awhile. It is always good to have goals!

That is really great that you are going to cook for her. You are making sure that she won't have to deal with it. Just make sure that you do smaller portions for her, otherwise she might feel that she is being wasteful. If she wants more than it is already in another container for her. My husband lost weight right along with me as he really can't cook. He tried but he could really only cook a couple of things. The one thing he was good at (spaghetti) became a staple. After I got better and was cooking again I don't think we had spaghetti for about a year. LOL

You are very welcome and we are all here to help each other on this journey.

Take Care
Lily

amazing
HI Lily,

That's wonderful that you have been here to see her graduate from university as well and it sounds like you will be here to see her get married and eventually have children. Yes I believe that having goals is a good way to stay positive and to have something to aim for.

Yes I'll do smaller portions and that way she doesn't have to worry about cooking. Did you lose a lot of weight during chemo? I'm concerned about that because my Mum only weighs 44kg and she hasn't started treatment yet so she can't afford to lose much weight.

Ha ha that's funny about the spaghetti, I'm not the best cook either but I have bought some cook books so I'll give it a go and hopefully will be able to cook a few things( fingers crossed).

Take care,
Cynthia

Cynth89

Chemo regime
Hi All,

We have spoken to the chemo oncologist and the radiation oncologist and they have decided to start Mum on chemo and no radiation to begin with. They said this will help to show us if the chemo is working.

Her chemo cocktail is Carboplatin and Gemcitabine. She has both of these on the first Friday and then only gemcitabine on the second friday and the third friday she has off. She then starts her cycle over again for the next three weeks. They said if she responds well to the chemo they will do this for 6 cycles and then she will have scans to see how she is going. She is having a PICC line put in to have the chemo through so they don't have to find a vein every time as she is already really hard to find veins on.

I asked about molecular profiling and the oncologist didn't seem to think that would help at all but they aren't very interested in doing a lot of things in the public health system in Australia unfortunately.

Thank you all for your support and encouragement and I hope everyone is doing well,keep me updated on your stories:)

Cynthia

parthgovil

westie66 said:

Gallbladder and liver cancer
HI LIly and Meg: It was me, Lily, who recommended she talk to you on this discussion thread. I recommend an aggressive chemo treatment like you had, LIly, and perhaps check out the Mayo Clinic (is Minnesota in the mid-west? I'm a CAnadian so am hopeless!). A friend of mine with gallbladder cancer went there from CAnada and had wonderful aggressive treatment. But his cancer had not spread to the liver or rib cage. Mine may have spread to the liver, it certainly has spread to the peritoneum.
Cheryl

Cheryl
Dear Cheryl,

Please try few things,
1. First thing in morning ( without cleansing ur mouth) drink about 1-1.5 ltrs of lukewarm water
2. Try taking in about 2-3 tsps of turmeric along with milk / pineapple juice during the day pref one tsp after each meal
3. Do pranayama ( yogic breathing - kapalbhati and anuloma vilom) start with 20-30 mins per day try taking to 4 hrs per day. This leads to improved oxygenation of the body at the cellular level. Cancer cells can't survive inan oxygenated environment.

Try these it certainly helps.

Regards

Parth

Cynth89

Meg2003 said:

Update
We finally got my dad out of the hospital (which was a complete nightmare) and he has fluid in his gallbladder which we are assuming is from the cancer, does that sound right? If that is the case, then it looks like this is going pretty fast because as of Monday, there was no fluid.

We are doing everything we can to get him into the cancer center ASAP because he still hasn't even seen an oncologist. Since he was in the hospital, shouldn't they have sent an oncologist in the moment they knew it was cancer? I'm rather frustrated. The center we're going to in 4 hrs away and we most likely won't get in until the end of the week and feel like we're making no progress in fighting this thing.

Can you tell me what to expect for the first few months of treatment. it look like it's 5 days a week for the first 6 weeks and then is it less?

As of right now, my dad is extremely down and out. Anytime the nurses mentioned the words 'make you comfortable' he took that as he was going home to die. How do I encourage him to fight because as of right now I feel like he's giving up. He's worried about feeling even worse once treatment starts. We need him to fight (which is completely selfish) but we just can't give up on him.

Hello
Hi Meg

I'm sorry you have had to come to this board but I'm glad you have found it as the people on this board are such an inspiration!

I'm not sure about the fluid on the gallbladder as my Mum hasn't had that. You would think that when someone is diagnosed with cancer they would see an oncologist but my Mum had to wait over a month to see one which I think is terrible.

The treatment you talk about sounds like radiation treatment because that is every day for 6 - 8 weeks at a time.

Try and tackle one thing at a time with him as this will be so overwhelming for him and for all of you. I know when Mum looks at it all together she gets so overwhelmed so I try and brake it down to one thing at a time and that seems to be easier.

Keep in touch and take care.
Cynthia

westie66

Cynth89 said:

Chemo regime
Hi All,

We have spoken to the chemo oncologist and the radiation oncologist and they have decided to start Mum on chemo and no radiation to begin with. They said this will help to show us if the chemo is working.

Her chemo cocktail is Carboplatin and Gemcitabine. She has both of these on the first Friday and then only gemcitabine on the second friday and the third friday she has off. She then starts her cycle over again for the next three weeks. They said if she responds well to the chemo they will do this for 6 cycles and then she will have scans to see how she is going. She is having a PICC line put in to have the chemo through so they don't have to find a vein every time as she is already really hard to find veins on.

I asked about molecular profiling and the oncologist didn't seem to think that would help at all but they aren't very interested in doing a lot of things in the public health system in Australia unfortunately.

Thank you all for your support and encouragement and I hope everyone is doing well,keep me updated on your stories:)

Cynthia

Not Seeing An Oncologist
Hi Meg: I had the same problem. I had my gallbladder and its tumour plus part of my liver cut out but didn't see the surgeon until one month later when he told me I had cancer (apparently they didn't tell me right away as I was in intensive care for 10 days and I needed my spirits high!). And then I didn't see an oncologist until several weeks later - I couldn't start on chemo because the incision from the surgery hadn't yet healed; that took 4 months. I think in my case it wasn't a regular diagnosis of cancer as they didn't know I had cancer until they took my gallbladder out (happens a lot with gallbladder patients as you usually go in for gallstones as there are no cancer symptoms).

I haven't heard of fluid in the gallbladder; however, mine was full of a jelly like substance and lots of gallstones plus the tumour which had already grown out of the gallbladder and across to the liver.

I couldn't have radiation as that would compromise the liver apparently. Don't know why.

My first chemo treatment was 12 treatments of cisplatin + gemcitibine administered together once a week for two weeks, and then the 3rd week off. I, too, have a PICC because trying to find a vein after chemo treatments was a nightmare. My second round of treatments was 12 treatments of oxaliplatin + irenotecan + 5FU pump.

I've never had molecular profiling and don't know what that is. My oncologist doesn't believe in blood tests for CA19, CA125, CEA even though I would love to have a number to talk about!

I had MRI scans every 3 months.

Cheryl

aklitz

Lily50 said:

Cynthia's Mum
Hi Cynthia,

Yes it is wonderful. I was in the midst of treatment when she graduated from High School which was quite emotional. This December she graduated from the University and that was really emotional as I never knew if I would still be here to see it. Now the goal is to see her get married. Grandkids can wait awhile. It is always good to have goals!

That is really great that you are going to cook for her. You are making sure that she won't have to deal with it. Just make sure that you do smaller portions for her, otherwise she might feel that she is being wasteful. If she wants more than it is already in another container for her. My husband lost weight right along with me as he really can't cook. He tried but he could really only cook a couple of things. The one thing he was good at (spaghetti) became a staple. After I got better and was cooking again I don't think we had spaghetti for about a year. LOL

You are very welcome and we are all here to help each other on this journey.

Take Care
Lily

My Mom's cancer journey
Hi Lily,
Hi Everyone,

My mom was diagnosed with stage IV gall bladder cancer last January. She is 61 years old and in otherwise good health.

This diagnosis was after she thought she had beat stage II gall bladder cancer in 2008. She had her gall bladder removed and a liver resection at that time. No chemo or radiation, no further scans even! She was then told to go live her life. We thought she was cured.

Then, with some symptoms we learned of the recurrence in Jan. of 2011. We were not given a lot of hope at that particular time. Her doctor said she'd be surprised if she was still around in three years. Needless to say, this was a big blow. My mom had 16 weeks of chemotherapy 3 on one off with cisplatin / gemcitabine. She tolerated it well and to the doctor's surprise all signs of cancer disappeared. My mom also had radiation last fall as a further safeguard against the return of her cancer. She just had a scan a few days ago that show a suspicious lymph node in her abdomen / back area. We are very scared to face the next round of treatment, as I know that the cancer keeps fighting harder against the chemotherapy. Any encouragement for this next chapter would be so appreciated. We are not ready to give up at all!

Angi

aklitz

Lily50 said:

Cynthia's Mum
Hi Cynthia,

Yes it is wonderful. I was in the midst of treatment when she graduated from High School which was quite emotional. This December she graduated from the University and that was really emotional as I never knew if I would still be here to see it. Now the goal is to see her get married. Grandkids can wait awhile. It is always good to have goals!

That is really great that you are going to cook for her. You are making sure that she won't have to deal with it. Just make sure that you do smaller portions for her, otherwise she might feel that she is being wasteful. If she wants more than it is already in another container for her. My husband lost weight right along with me as he really can't cook. He tried but he could really only cook a couple of things. The one thing he was good at (spaghetti) became a staple. After I got better and was cooking again I don't think we had spaghetti for about a year. LOL

You are very welcome and we are all here to help each other on this journey.

Take Care
Lily

My Mom's cancer journey
Hi Lily,
Hi Everyone,

My mom was diagnosed with stage IV gall bladder cancer last January. She is 61 years old and in otherwise good health.

This diagnosis was after she thought she had beat stage II gall bladder cancer in 2008. She had her gall bladder removed and a liver resection at that time. No chemo or radiation, no further scans even! She was then told to go live her life. We thought she was cured.

Then, with some symptoms we learned of the recurrence in Jan. of 2011. We were not given a lot of hope at that particular time. Her doctor said she'd be surprised if she was still around in three years. Needless to say, this was a big blow. My mom had 16 weeks of chemotherapy 3 on one off with cisplatin / gemcitabine. She tolerated it well and to the doctor's surprise all signs of cancer disappeared. My mom also had radiation last fall as a further safeguard against the return of her cancer. She just had a scan a few days ago that show a suspicious lymph node in her abdomen / back area. We are very scared to face the next round of treatment, as I know that the cancer keeps fighting harder against the chemotherapy. Any encouragement for this next chapter would be so appreciated. We are not ready to give up at all!

Angi

aklitz

Cynth89 said:

Hello
Hi Meg

I'm sorry you have had to come to this board but I'm glad you have found it as the people on this board are such an inspiration!

I'm not sure about the fluid on the gallbladder as my Mum hasn't had that. You would think that when someone is diagnosed with cancer they would see an oncologist but my Mum had to wait over a month to see one which I think is terrible.

The treatment you talk about sounds like radiation treatment because that is every day for 6 - 8 weeks at a time.

Try and tackle one thing at a time with him as this will be so overwhelming for him and for all of you. I know when Mum looks at it all together she gets so overwhelmed so I try and brake it down to one thing at a time and that seems to be easier.

Keep in touch and take care.
Cynthia

My Mom's cancer journey
Hi Everyone,

My mom was diagnosed with stage IV gall bladder cancer last January. She is 61 years old and in otherwise good health.

This diagnosis was after she thought she had beat stage II gall bladder cancer in 2008. She had her gall bladder removed and a liver resection at that time. No chemo or radiation, no further scans even! She was then told to go live her life. We thought she was cured.

Then, with some symptoms we learned of the recurrence in Jan. of 2011. We were not given a lot of hope at that particular time. Her doctor said she's be surprised if she was still around in three years. Needless to say, this was a big blow. My mom had 16 weeks of chemotherapy 3 on one off with cisplatin / gemcitabine. She tolerated it well and to the doctor's surprise all signs of cancer disappeared. My mom also had radiation last fall as a further safeguard against the return of her cancer. She just had a scan a few days ago that show a suspicious lymph node in her abdomen / back area. We are very scared to face the next round of treatment, as I know that the cancer keeps fighting harder against the chemotherapy. Any encouragement for this next chapter would be so appreciated. We are not ready to give up at all!

Angi

aklitz

Cynth89 said:

Hello
Hi Meg

I'm sorry you have had to come to this board but I'm glad you have found it as the people on this board are such an inspiration!

I'm not sure about the fluid on the gallbladder as my Mum hasn't had that. You would think that when someone is diagnosed with cancer they would see an oncologist but my Mum had to wait over a month to see one which I think is terrible.

The treatment you talk about sounds like radiation treatment because that is every day for 6 - 8 weeks at a time.

Try and tackle one thing at a time with him as this will be so overwhelming for him and for all of you. I know when Mum looks at it all together she gets so overwhelmed so I try and brake it down to one thing at a time and that seems to be easier.

Keep in touch and take care.
Cynthia

My Mom's cancer journey
Hi Everyone,

My mom was diagnosed with stage IV gall bladder cancer last January. She is 61 years old and in otherwise good health.

This diagnosis was after she thought she had beat stage II gall bladder cancer in 2008. She had her gall bladder removed and a liver resection at that time. No chemo or radiation, no further scans even! She was then told to go live her life. We thought she was cured.

Then, with some symptoms we learned of the recurrence in Jan. of 2011. We were not given a lot of hope at that particular time. Her doctor said she's be surprised if she was still around in three years. Needless to say, this was a big blow. My mom had 16 weeks of chemotherapy 3 on one off with cisplatin / gemcitabine. She tolerated it well and to the doctor's surprise all signs of cancer disappeared. My mom also had radiation last fall as a further safeguard against the return of her cancer. She just had a scan a few days ago that show a suspicious lymph node in her abdomen / back area. We are very scared to face the next round of treatment, as I know that the cancer keeps fighting harder against the chemotherapy. Any encouragement for this next chapter would be so appreciated. We are not ready to give up at all!

Angi

aklitz

Cynth89 said:

Hello
Hi Meg

I'm sorry you have had to come to this board but I'm glad you have found it as the people on this board are such an inspiration!

I'm not sure about the fluid on the gallbladder as my Mum hasn't had that. You would think that when someone is diagnosed with cancer they would see an oncologist but my Mum had to wait over a month to see one which I think is terrible.

The treatment you talk about sounds like radiation treatment because that is every day for 6 - 8 weeks at a time.

Try and tackle one thing at a time with him as this will be so overwhelming for him and for all of you. I know when Mum looks at it all together she gets so overwhelmed so I try and brake it down to one thing at a time and that seems to be easier.

Keep in touch and take care.
Cynthia

My Mom's cancer journey
Hi Everyone,

My mom was diagnosed with stage IV gall bladder cancer last January. She is 61 years old and in otherwise good health.

This diagnosis was after she thought she had beat stage II gall bladder cancer in 2008. She had her gall bladder removed and a liver resection at that time. No chemo or radiation, no further scans even! She was then told to go live her life. We thought she was cured.

Then, with some symptoms we learned of the recurrence in Jan. of 2011. We were not given a lot of hope at that particular time. Her doctor said she's be surprised if she was still around in three years. Needless to say, this was a big blow. My mom had 16 weeks of chemotherapy 3 on one off with cisplatin / gemcitabine. She tolerated it well and to the doctor's surprise all signs of cancer disappeared. My mom also had radiation last fall as a further safeguard against the return of her cancer. She just had a scan a few days ago that show a suspicious lymph node in her abdomen / back area. We are very scared to face the next round of treatment, as I know that the cancer keeps fighting harder against the chemotherapy. Any encouragement for this next chapter would be so appreciated. We are not ready to give up at all!

Angi

westie66

aklitz said:

My Mom's cancer journey
Hi Everyone,

My mom was diagnosed with stage IV gall bladder cancer last January. She is 61 years old and in otherwise good health.

This diagnosis was after she thought she had beat stage II gall bladder cancer in 2008. She had her gall bladder removed and a liver resection at that time. No chemo or radiation, no further scans even! She was then told to go live her life. We thought she was cured.

Then, with some symptoms we learned of the recurrence in Jan. of 2011. We were not given a lot of hope at that particular time. Her doctor said she's be surprised if she was still around in three years. Needless to say, this was a big blow. My mom had 16 weeks of chemotherapy 3 on one off with cisplatin / gemcitabine. She tolerated it well and to the doctor's surprise all signs of cancer disappeared. My mom also had radiation last fall as a further safeguard against the return of her cancer. She just had a scan a few days ago that show a suspicious lymph node in her abdomen / back area. We are very scared to face the next round of treatment, as I know that the cancer keeps fighting harder against the chemotherapy. Any encouragement for this next chapter would be so appreciated. We are not ready to give up at all!

Angi

Your Mom's Gallbladder Cancer Journey
Hi Angi: Most of us with gallbladder cancer were given a few months at best, that is how little is really know about the disease, but we're still here. Gallbladder cancer is a tough sneaky one to have as it seeds cancer cells to the abdominal area and there are few symptoms. I was diagnosed with gallbladder cancer in October 2009, had my gallbladder, its tumour, and part of the liver out in April 2010, and started chemo in September 2010 (cisplatin + gemcitibine) to get at the cancerous nodules on my peritoneum (quite common with gallbladder cancer). Like your mom's surgery, this was likely not an aggressive enough treatment (see Lily50's story), but this cancer is rare and so not all surgeons are aware of what should be done like examining all of the adjacent organs and cutting out suspicious things like lymph nodes. I did 12 treatments of cisplatin + gemcitibine and tolerated this regime very well, even drove myself to and from chemo. But it didn't get rid of the peritoneum nodules so I did 12 treatments of oxaliplatin + irenotecan + 5FU - a more aggressive treatment with lots of side effects. This treatment stabilized the peritoneum nodules. Not sure where we will go next - surgery perhaps or more chemo.

Never give up! Are they sure that the lymph node is cancerous (how can they tell? Usually only PET scans can tell that)? If it is, can they cut out that lymph node through laparoscopic surgery (and have a look around at the same time)? Can it be zapped with radiation? (I can't have radiation apparently as I have a "compromised liver", whatever that means!

Sorry that you mom has this awful disease.

Cheryl

aklitz

westie66 said:

Your Mom's Gallbladder Cancer Journey
Hi Angi: Most of us with gallbladder cancer were given a few months at best, that is how little is really know about the disease, but we're still here. Gallbladder cancer is a tough sneaky one to have as it seeds cancer cells to the abdominal area and there are few symptoms. I was diagnosed with gallbladder cancer in October 2009, had my gallbladder, its tumour, and part of the liver out in April 2010, and started chemo in September 2010 (cisplatin + gemcitibine) to get at the cancerous nodules on my peritoneum (quite common with gallbladder cancer). Like your mom's surgery, this was likely not an aggressive enough treatment (see Lily50's story), but this cancer is rare and so not all surgeons are aware of what should be done like examining all of the adjacent organs and cutting out suspicious things like lymph nodes. I did 12 treatments of cisplatin + gemcitibine and tolerated this regime very well, even drove myself to and from chemo. But it didn't get rid of the peritoneum nodules so I did 12 treatments of oxaliplatin + irenotecan + 5FU - a more aggressive treatment with lots of side effects. This treatment stabilized the peritoneum nodules. Not sure where we will go next - surgery perhaps or more chemo.

Never give up! Are they sure that the lymph node is cancerous (how can they tell? Usually only PET scans can tell that)? If it is, can they cut out that lymph node through laparoscopic surgery (and have a look around at the same time)? Can it be zapped with radiation? (I can't have radiation apparently as I have a "compromised liver", whatever that means!

Sorry that you mom has this awful disease.

Cheryl

Thanks, Cheryl
Hi Cheryl,

My mom had a biopsy on the area of the lymph node in her messentary / peritoneum (sp?) last Thursday; we will get results tomorrow afternoon. I will post more at that time. She hasn't tried the second round of chemo, we are thinking that may be next. We are all pretty nervous about the many side effects, but she is tough and ready to fight. They are saying they cannot operate as the lymph node is wrapped in blood vessels.

It sounds to me like the two of you have quite a lot in common and I hope to be corresponding with you for a long time into the future about these issues.

I'll say a prayer for you and all cancer victims. I appreciate your reply to my post. I have no idea why my information posted so many times, will have to work on that, as well.
Take care,
Angi

aklitz

westie66 said:

Your Mom's Gallbladder Cancer Journey
Hi Angi: Most of us with gallbladder cancer were given a few months at best, that is how little is really know about the disease, but we're still here. Gallbladder cancer is a tough sneaky one to have as it seeds cancer cells to the abdominal area and there are few symptoms. I was diagnosed with gallbladder cancer in October 2009, had my gallbladder, its tumour, and part of the liver out in April 2010, and started chemo in September 2010 (cisplatin + gemcitibine) to get at the cancerous nodules on my peritoneum (quite common with gallbladder cancer). Like your mom's surgery, this was likely not an aggressive enough treatment (see Lily50's story), but this cancer is rare and so not all surgeons are aware of what should be done like examining all of the adjacent organs and cutting out suspicious things like lymph nodes. I did 12 treatments of cisplatin + gemcitibine and tolerated this regime very well, even drove myself to and from chemo. But it didn't get rid of the peritoneum nodules so I did 12 treatments of oxaliplatin + irenotecan + 5FU - a more aggressive treatment with lots of side effects. This treatment stabilized the peritoneum nodules. Not sure where we will go next - surgery perhaps or more chemo.

Never give up! Are they sure that the lymph node is cancerous (how can they tell? Usually only PET scans can tell that)? If it is, can they cut out that lymph node through laparoscopic surgery (and have a look around at the same time)? Can it be zapped with radiation? (I can't have radiation apparently as I have a "compromised liver", whatever that means!

Sorry that you mom has this awful disease.

Cheryl

Thanks, Cheryl
Hi Cheryl,

My mom had a biopsy on the area of the lymph node in her messentary / peritoneum (sp?) last Thursday; we will get results tomorrow afternoon. I will post more at that time. She hasn't tried the second round of chemo, we are thinking that may be next. We are all pretty nervous about the many side effects, but she is tough and ready to fight. They are saying they cannot operate as the lymph node is wrapped in blood vessels.

It sounds to me like the two of you have quite a lot in common and I hope to be corresponding with you for a long time into the future about these issues.

I'll say a prayer for you and all cancer victims. I appreciate your reply to my post. I have no idea why my information posted so many times, will have to work on that, as well.
Take care,
Angi

aklitz

westie66 said:

Your Mom's Gallbladder Cancer Journey
Hi Angi: Most of us with gallbladder cancer were given a few months at best, that is how little is really know about the disease, but we're still here. Gallbladder cancer is a tough sneaky one to have as it seeds cancer cells to the abdominal area and there are few symptoms. I was diagnosed with gallbladder cancer in October 2009, had my gallbladder, its tumour, and part of the liver out in April 2010, and started chemo in September 2010 (cisplatin + gemcitibine) to get at the cancerous nodules on my peritoneum (quite common with gallbladder cancer). Like your mom's surgery, this was likely not an aggressive enough treatment (see Lily50's story), but this cancer is rare and so not all surgeons are aware of what should be done like examining all of the adjacent organs and cutting out suspicious things like lymph nodes. I did 12 treatments of cisplatin + gemcitibine and tolerated this regime very well, even drove myself to and from chemo. But it didn't get rid of the peritoneum nodules so I did 12 treatments of oxaliplatin + irenotecan + 5FU - a more aggressive treatment with lots of side effects. This treatment stabilized the peritoneum nodules. Not sure where we will go next - surgery perhaps or more chemo.

Never give up! Are they sure that the lymph node is cancerous (how can they tell? Usually only PET scans can tell that)? If it is, can they cut out that lymph node through laparoscopic surgery (and have a look around at the same time)? Can it be zapped with radiation? (I can't have radiation apparently as I have a "compromised liver", whatever that means!

Sorry that you mom has this awful disease.

Cheryl

Thanks, Cheryl
Hi Cheryl,

My mom had a biopsy on the area of the lymph node in her messentary / peritoneum (sp?) last Thursday; we will get results tomorrow afternoon. I will post more at that time. She hasn't tried the second round of chemo, we are thinking that may be next. We are all pretty nervous about the many side effects, but she is tough and ready to fight. They are saying they cannot operate as the lymph node is wrapped in blood vessels.

It sounds to me like the two of you have quite a lot in common and I hope to be corresponding with you for a long time into the future about these issues.

I'll say a prayer for you and all cancer victims. I appreciate your reply to my post. I have no idea why my information posted so many times, will have to work on that, as well.
Take care,
Angi

westie66

westie66 said:

Not Seeing An Oncologist
Hi Meg: I had the same problem. I had my gallbladder and its tumour plus part of my liver cut out but didn't see the surgeon until one month later when he told me I had cancer (apparently they didn't tell me right away as I was in intensive care for 10 days and I needed my spirits high!). And then I didn't see an oncologist until several weeks later - I couldn't start on chemo because the incision from the surgery hadn't yet healed; that took 4 months. I think in my case it wasn't a regular diagnosis of cancer as they didn't know I had cancer until they took my gallbladder out (happens a lot with gallbladder patients as you usually go in for gallstones as there are no cancer symptoms).

I haven't heard of fluid in the gallbladder; however, mine was full of a jelly like substance and lots of gallstones plus the tumour which had already grown out of the gallbladder and across to the liver.

I couldn't have radiation as that would compromise the liver apparently. Don't know why.

My first chemo treatment was 12 treatments of cisplatin + gemcitibine administered together once a week for two weeks, and then the 3rd week off. I, too, have a PICC because trying to find a vein after chemo treatments was a nightmare. My second round of treatments was 12 treatments of oxaliplatin + irenotecan + 5FU pump.

I've never had molecular profiling and don't know what that is. My oncologist doesn't believe in blood tests for CA19, CA125, CEA even though I would love to have a number to talk about!

I had MRI scans every 3 months.

Cheryl

Gallbladder Cancer
Hi Cynthia: I've answered you down here as a reply is hard to find if you reply anywhere except at the bottom of the discussion thread. I think your discussion has appeared three times because you hit the "post comment" button 3 times. Usually in frustration as nothing happens when you hit it the first time! or the second time! Very slow sometimes.

I hope your mom's results were better than mine. I now have a tumour (small 2cm) on my liver that actually was detected as a possible tumour in January 2010 before I even had the surgery that removed my gallbladder, its tumour, and part of the liver. I'm frustrated that the surgeon didn't look at it during the surgery because afterwards it was identified as a benign hemangioma until January 2012 when it was interpreted as a possible tumour. I had nuclear tests which confirmed that it is in fact a tumour. Don't know where we go from here because once a tumour has spread it is usually game over for further treatment like surgery to cut things out. At least here in Canada. I think gallbladder cancer has this terrible reputation of not being treatable, which is wrong of course, that no one wants to touch you!

Anyways, let me know what happens.

Cheryl