Gallbladder Cancer - 2012 (Any Stage)

westie66

westie66 said:

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

Gallbladder Cancer
Whoops - the message was supposed to be for Angi! Sorry Cynthia. but of interest to you too. Chemo brain!
Cheryl

LucyDoodle

westie66 said:

Gallbladder Cancer
Whoops - the message was supposed to be for Angi! Sorry Cynthia. but of interest to you too. Chemo brain!
Cheryl

Gall Bladder Cancer
Hi Cheryl
Sorry to read your post about the tumor in your liver. Have you spoken to the surgeon who did your original surgery? After all you have shown him you are one very determined lady!
Sending a hug your way.
Debbie

westie66

LucyDoodle said:

Gall Bladder Cancer
Hi Cheryl
Sorry to read your post about the tumor in your liver. Have you spoken to the surgeon who did your original surgery? After all you have shown him you are one very determined lady!
Sending a hug your way.
Debbie

Liver Mets
Hi Debbie: My oncologist apparently is checking for a liver surgeon to cut the little thing out (my original surgeon was a colorectal-gallbladder surgeon) - he is not positive because with mets to the peritoneum they may think all is lost! But the peritoneum surgeons won't do the surgery with mets to the liver! Chicken and egg thing. So I haven't heard anything yet. Then it has to be presented to the Ontario Cancer Board who can turn everything down. Even though I have gone at least 3 years (certainly over the 2-3 months they gave me originally!). That's one problem with a public medical system - cost cutting. Although everyone gets treated, no matter how poor you are, or if you're in jail, whatever, sometimes the treatment can't go far enough especially if there is a risk of no success.
Thanks for your thoughts Debbie.
Cheryl

Meg2003

Update on my dad
We finally got him into Cancer Treatment Centers of America, and we love it! He's stage 4 and they are scheduling surgery. There were no battles with the doctor, they just said,"Let's do it."

The procedure is called Hipec, I guess it's new and only 4 doctors in the country know how to do this. They will be removing his gallbladder, as much of the liver as possible, and any other tumors they see and then feed chemo directly to the area while he is open. Has anyone had this done?

We are very hopeful and supposedly they have had great results with this procedure. I'll keep you posted!

westie66

Meg2003 said:

Update on my dad
We finally got him into Cancer Treatment Centers of America, and we love it! He's stage 4 and they are scheduling surgery. There were no battles with the doctor, they just said,"Let's do it."

The procedure is called Hipec, I guess it's new and only 4 doctors in the country know how to do this. They will be removing his gallbladder, as much of the liver as possible, and any other tumors they see and then feed chemo directly to the area while he is open. Has anyone had this done?

We are very hopeful and supposedly they have had great results with this procedure. I'll keep you posted!

HIPEC Procedure
Hi: It is a fairly common procedure for peritoneal cancer either primary peritoneal cancer or as mets from ovarian cancer and appendix caner but patients with these cancers are few and far between. With those cancers, it is usually done following peritoneal stripping or debulking. I'll be very interested in the results because it hasn't been done as far as I know very often with gallbladder cancer. I am in line for it in Calgary, one of the few places it is done in Canada. A friend of mine had gallbladder cancer that had spread to the liver. His doctors in Saskatchewan told him to go home and prepare for the worst - he was only 38 at the time with two young children. He chose to go to the Mayo Clinic in Minnesota on his own money and they did all that you describe except for the HIPEC. He was up and around in no time and was home in about a week. He appears cancer free now and happy he made that choice. It is the surgery I should have had!
Could you let me know where his treatment centre is and who are the surgeons doing the surgery? Good luck with the surgery. He'll be fine.
Cheryl

lirok

westie66 said:

HIPEC Procedure
Hi: It is a fairly common procedure for peritoneal cancer either primary peritoneal cancer or as mets from ovarian cancer and appendix caner but patients with these cancers are few and far between. With those cancers, it is usually done following peritoneal stripping or debulking. I'll be very interested in the results because it hasn't been done as far as I know very often with gallbladder cancer. I am in line for it in Calgary, one of the few places it is done in Canada. A friend of mine had gallbladder cancer that had spread to the liver. His doctors in Saskatchewan told him to go home and prepare for the worst - he was only 38 at the time with two young children. He chose to go to the Mayo Clinic in Minnesota on his own money and they did all that you describe except for the HIPEC. He was up and around in no time and was home in about a week. He appears cancer free now and happy he made that choice. It is the surgery I should have had!
Could you let me know where his treatment centre is and who are the surgeons doing the surgery? Good luck with the surgery. He'll be fine.
Cheryl

Had to Share This With Everyone
The link below is a story in today's NY Post about my son Chris and newly elevated Cardinal Timothy Dolan in NYC.

http://www.nypost.com/p/news/local/manhattan/answered_prayers_1v9yTzsFIQrscpOQruavrM


Rocky

lirok

Meg2003 said:

Update on my dad
We finally got him into Cancer Treatment Centers of America, and we love it! He's stage 4 and they are scheduling surgery. There were no battles with the doctor, they just said,"Let's do it."

The procedure is called Hipec, I guess it's new and only 4 doctors in the country know how to do this. They will be removing his gallbladder, as much of the liver as possible, and any other tumors they see and then feed chemo directly to the area while he is open. Has anyone had this done?

We are very hopeful and supposedly they have had great results with this procedure. I'll keep you posted!

My surgery involved removal of the gallbladder and 40% of my liver including the bile ducts. They had to cut part of my large intestine and create new bile ducts sewn into the liver to move the bile from the liver to my intestinal tract (due to the gall bladder removal). The liver will regenerate itself in about 8-12 weeks depending on how much they take. My surgery was successful.

Just stay positive and pray. Everything will be fine.


Regards and good health to all,

Rocky

Monarch

lirok said:

Had to Share This With Everyone
The link below is a story in today's NY Post about my son Chris and newly elevated Cardinal Timothy Dolan in NYC.

http://www.nypost.com/p/news/local/manhattan/answered_prayers_1v9yTzsFIQrscpOQruavrM


Rocky

Beautiful, Rocky!
Thank you so very much for sharing the story about your sweet son, Chris! It moved me to tears. May I post a link to the story on my blog? (If you prefer not, I completely understand!)

I know you are proud...and you definitley have cause to be!

I have a question for you, are you still experiencing leg pain? My mom's knees are just giving her fits. She's had a really hard time getting around the last couple days. I ended up taking today off to go stay with her as she needed help getting up and down. I'm hoping you've found some relief from your joint pain and that you'll share what worked for you.

Again, thank you for sharing the story about Chris!

Charmi

lirok

Monarch said:

Beautiful, Rocky!
Thank you so very much for sharing the story about your sweet son, Chris! It moved me to tears. May I post a link to the story on my blog? (If you prefer not, I completely understand!)

I know you are proud...and you definitley have cause to be!

I have a question for you, are you still experiencing leg pain? My mom's knees are just giving her fits. She's had a really hard time getting around the last couple days. I ended up taking today off to go stay with her as she needed help getting up and down. I'm hoping you've found some relief from your joint pain and that you'll share what worked for you.

Again, thank you for sharing the story about Chris!

Charmi

Monarch
You can absolutely use the story in your blog. As for my pain, yes it is still causing me problems. I have issues with all joints, especially my hips and legs. I also now have balance issues when walking. I am close to using a cane. They tell they see nothing but talking to the nurses during chemo it is definitely a by product the treatment.

Continued best wishes to mom.

Rocky

LucyDoodle

lirok said:

My surgery involved removal of the gallbladder and 40% of my liver including the bile ducts. They had to cut part of my large intestine and create new bile ducts sewn into the liver to move the bile from the liver to my intestinal tract (due to the gall bladder removal). The liver will regenerate itself in about 8-12 weeks depending on how much they take. My surgery was successful.

Just stay positive and pray. Everything will be fine.


Regards and good health to all,

Rocky

Rocky
Rocky,
Thanks for sharing the story about your son:)
Debbie

LucyDoodle

lirok said:

My surgery involved removal of the gallbladder and 40% of my liver including the bile ducts. They had to cut part of my large intestine and create new bile ducts sewn into the liver to move the bile from the liver to my intestinal tract (due to the gall bladder removal). The liver will regenerate itself in about 8-12 weeks depending on how much they take. My surgery was successful.

Just stay positive and pray. Everything will be fine.


Regards and good health to all,

Rocky

Meg2003
You must be so pleased to find a surgeon who is prepared to do surgery. Please let us know how Dad does ( I assume they are planning to do surgery soon).
Debbie

parthgovil

westie66 said:

Dealing with Gallbladder Cancer
Hi Cynthia: I too have gallbladder cancer (diagnosed Oct 2009). I have had 24 treatments now and am awaiting meeting with my oncologist to see what the next step is. I did not have radiation but surgery removed my gallbladder, its tumour, and part of my liver. I have 6 cancerous nodules on my peritoneum which is what we are trying to get rid of now. Anyways, you ask about how your mom may react to the chemo (I can't talk to radiation as I didn't have it). I am now 68 years old and like your mom live alone (with my sweet dog Charlotte). I have lots of friends who kind of looked after me during the worst times (like after the surgery and during some periods of the last chemotherapy treatment) but no one stayed with me all the time. I had a daily nurse for awhile when I was recovering from the surgery but not during the first chemo tre atment (cisplatin/gemcitibine). However, during the last 12 treatments I had a PICC line put in (for the oxaliplatin + irenotecan + 5FU pump) and a nurse comes once a week to flush the line, take off the pump, and give me a Neulasta injection (these treatments stopped Nov 4 but I still have the weekly nurse to flush the PICC line). I had no problems with the first treatments (cisplatin/gemcitibine) but the latest treatments (oxaliplatin + irenotecan + 5Fu) had a lot more side effects, like cold intolerance, neuropathy, sweating, fatigue, diarrhea. Nevertheless, I managed on my own as long as I knew friends were close by and available if/when I needed them.

However, it all depends on how your mom will react to the chemotherapy and the radiation and it may take a few treatments to find that out. I'm sure she would love your company as it a rough disease to have. I didn't have children but I know I would have loved to have them with me or at least close by if I had.

Keep us posted on how it goes. You sound like a wonderful daughter!

Cheryl

24 treatments
Dear Cheryl,

When u say 24 treatments it means what ! In my fathers case he has got one round of chemo which was of 6 cycles.

Regards

Parth

lirok

LucyDoodle said:

Rocky
Rocky,
Thanks for sharing the story about your son:)
Debbie

How is Everyone Doing ?
Haven't seen any posts from anyone. Hope all are doing well with their respective treatments. I have now had 3 (#4 tomorrow) treatments of the Folfox and it has really taken its toll. It takes about 4 days after the treatment and I hit bottom. Neuropathy is constant in my hands and feet. My sensitivity to anything cold is also troubling. Nausea is a constant companion though the meds given help to get through it. My old pal constipation has also paid a visit. I have a reduced appetite and have dropped 20 pounds so far. Hopefully this will all result in a positive result from my next scan in a couple of months. My port has finally healed and it makes everything so much easier though I am still running some low grade fevers that made my doc put me back on antibiotics for a few weeks.

No complaints though. There are those worse off with far greater obstacles than mine. I hope you are all doing well and look forward to hearing from you.

All the best,

Rocky

westie66

LucyDoodle said:

Meg2003
You must be so pleased to find a surgeon who is prepared to do surgery. Please let us know how Dad does ( I assume they are planning to do surgery soon).
Debbie

FOLFOX
hi Rocky: I have just finished 12 treatments of FOLFOXIRI (oxaliplatin + irenotecan + 5FU). Previous to that I had 12 treatments of cisplatin + gemcitibine. The FOLFOXIRI treatments are rough, indeed, but after the first treatment I started taking the following: 5-10 grams of L-Glutonate powder in glass of juice every day, alpha lipoic acid tablets 3 times a day, calcium-magnesium tablet once a day, and Vit b6 once a day. That seemed to get rid of the neuropathy, the cold intolerance, first bite syndrome, and the aches. I still take these supplements because the neuropathy can last a long time after your last chemo. I could drink ice cold drinks right after chemo! We get a lot of meds for nausea so I was OK there but diarrhea was terrible (the irenotecan and 5FU) - just went with it as it only lasted 3-5 days after 5FU pump came off. The fatigue was a factor too but just went to bed or walked my little dog.
Keep us posted on how you do.
Cheryl

rayofhope24

Here for my best friend
Hi I'm here for my best friend who's father has been recently diagnosed with gall bladder cancer stage 4. We reside in India and I'm a health professional myself. I request everyone to provide me with the best knowledge about the surgeons and hospitals specialised for the same in the U.S. so that we can provide for the best care for my friend's father. She's broken and I really want to help her somehow. At the time of diagnosis, expecting 7-8 months, maximum.
Thanks in advance.

Dr. Parijat.

Amazed by the strength you all beam through your brave stories. Hats off!

lirok

rayofhope24 said:

Here for my best friend
Hi I'm here for my best friend who's father has been recently diagnosed with gall bladder cancer stage 4. We reside in India and I'm a health professional myself. I request everyone to provide me with the best knowledge about the surgeons and hospitals specialised for the same in the U.S. so that we can provide for the best care for my friend's father. She's broken and I really want to help her somehow. At the time of diagnosis, expecting 7-8 months, maximum.
Thanks in advance.

Dr. Parijat.

Amazed by the strength you all beam through your brave stories. Hats off!

Ray of Hope
I was diagnosed with gall bladder cancer in Jan of 2011. My surgeon was Yuman Fong at Sloane Kettering here in NYC. He was spectacular. My oncologist is Eileen O'Reilly, also at Sloane. They both are experts in gastro intestinal cancers specializing in gall bladder and liver.

I wish your friend the best and applaud you for what you are doing.


Rocky

westie66

lirok said:

Ray of Hope
I was diagnosed with gall bladder cancer in Jan of 2011. My surgeon was Yuman Fong at Sloane Kettering here in NYC. He was spectacular. My oncologist is Eileen O'Reilly, also at Sloane. They both are experts in gastro intestinal cancers specializing in gall bladder and liver.

I wish your friend the best and applaud you for what you are doing.


Rocky

Ditto that
Hi: Lily50 posts on this discussion thread (she is the first one way way way at the top). She would be a good one to talk to as well as she is a 6 year survivor of stage IV gallbladder cancer. She had surgery in Los Angeles. I've also heard good things about Sloane Kettering - lots of Canadians have gone there. Good luck and it is a wonderful thing you are doing.
I, too, have Stage IV gallbladder cancer - was given 2-3 months and here it is 3 years later. I had my surgery in April 2010 to remove the gallbladder, its tumour, and part of my liver but it had spread to my peritoneum. I've been approved for liver surgery and that could lead to peritoneum surgery.
Cheryl

christina55

westie66 said:

Ditto that
Hi: Lily50 posts on this discussion thread (she is the first one way way way at the top). She would be a good one to talk to as well as she is a 6 year survivor of stage IV gallbladder cancer. She had surgery in Los Angeles. I've also heard good things about Sloane Kettering - lots of Canadians have gone there. Good luck and it is a wonderful thing you are doing.
I, too, have Stage IV gallbladder cancer - was given 2-3 months and here it is 3 years later. I had my surgery in April 2010 to remove the gallbladder, its tumour, and part of my liver but it had spread to my peritoneum. I've been approved for liver surgery and that could lead to peritoneum surgery.
Cheryl

Found out feb 2012, that husband has stage 4 gb cancer
Hi I'm new to this post and just need to share my experence so far. My husband went to the ER because he had blood in his urine ,come to find out he also had a very high bil. count in his urine so they did an ultrasound of his GB and found a mass coming from his gb.into his liver. I have access to his records so I knew right away it wasn't good. They did a ct and a petscan and a Bio. and confirmed the stage 4. His is unusal because he also has a very high white blood cell count, which they think is his reaction to the tumors. He has gone as high as 65 normal runs 6-10. so his was critical. today we went to have his first tx and couldn't because of his temp and his hbg. being low the dr. wants to double check to make sure he doesn't have leukemia. He doesn't think so ,but he will have to have a bone marrow bio .I'm upset, he was dia. feb 6 and I understand that with having to have a stent put in his bile duct they had to wait, but all this set back just means that cancer is growing. they now plan to do his tx. march 16 post bone marrow bio, and a transfusion 2 units of blood. thanks for letting me vent.

westie66

christina55 said:

Found out feb 2012, that husband has stage 4 gb cancer
Hi I'm new to this post and just need to share my experence so far. My husband went to the ER because he had blood in his urine ,come to find out he also had a very high bil. count in his urine so they did an ultrasound of his GB and found a mass coming from his gb.into his liver. I have access to his records so I knew right away it wasn't good. They did a ct and a petscan and a Bio. and confirmed the stage 4. His is unusal because he also has a very high white blood cell count, which they think is his reaction to the tumors. He has gone as high as 65 normal runs 6-10. so his was critical. today we went to have his first tx and couldn't because of his temp and his hbg. being low the dr. wants to double check to make sure he doesn't have leukemia. He doesn't think so ,but he will have to have a bone marrow bio .I'm upset, he was dia. feb 6 and I understand that with having to have a stent put in his bile duct they had to wait, but all this set back just means that cancer is growing. they now plan to do his tx. march 16 post bone marrow bio, and a transfusion 2 units of blood. thanks for letting me vent.

Vent away Christina!
Hi: I know how you feel. I had a rocky start to this whole gallbladder thing too. I had to wait 4 months after gallbladder/liver surgery before I started treatment (cisplatin/gemcitibine) and you feel so frustrated as you can't do much to battle this beast. I never had a problem with high white blood cell counts but rather chemo-induced low counts so had to have injections. I also lost a lot of blood when I first started the cis/gem treatment so had to have 2 transfusions. It is definitely an up and down road. Gallbladder cancer is problematic because not a whole bunch is known about it and it is usually discovered too late for surgery because there are no real symptoms. My symptom was high liver enzymes caught during a regular annual physical exam. Luckily the gallbladder, its tumour, and part of the liver were cut out during surgery in 2010 but it had still spread before that. I wish you both luck in getting treatment underway.
Cheryl

christina55

westie66 said:

Vent away Christina!
Hi: I know how you feel. I had a rocky start to this whole gallbladder thing too. I had to wait 4 months after gallbladder/liver surgery before I started treatment (cisplatin/gemcitibine) and you feel so frustrated as you can't do much to battle this beast. I never had a problem with high white blood cell counts but rather chemo-induced low counts so had to have injections. I also lost a lot of blood when I first started the cis/gem treatment so had to have 2 transfusions. It is definitely an up and down road. Gallbladder cancer is problematic because not a whole bunch is known about it and it is usually discovered too late for surgery because there are no real symptoms. My symptom was high liver enzymes caught during a regular annual physical exam. Luckily the gallbladder, its tumour, and part of the liver were cut out during surgery in 2010 but it had still spread before that. I wish you both luck in getting treatment underway.
Cheryl

Westie66
I'm so very glad you responded, My husband's cancer at this point can't be resected just hoping that it shrinks. He starts on the chemo this friday, I hope, its same stuff you took. His Dr. states his high white blood counts are very rare, but have been noted in a few pts.We are having his tx. done at the Huntsman Cancer hospital in Salt Lake City, Utah. Today he gets the bone marrow Bio.I just hope that its neg, and we can just move on from here, My husband doesn't say much but ,he never has , he just excepts things and moves on without much questions. I on the other hand have all the questions. I don't know if he will truely fight this, I guess its really up to him. Thanks again for responding it has been very good for the soul. christina