Gallbladder Cancer - 2012 (Any Stage)

hillaryjoRN

westie66 said:

Gallbladder Cancer
Yup, I agree with Lourdes!
Cheryl

Mom has decided to have
Mom has decided to have treatment here in Wisconsin, she feels comfortable with the oncologist and feels she will do better mentally and physically if she is home by us. She will have radiation with 5fu, (not sure how long) followed by Gemcitobine. That sounds like what most people here have gone through. She is in much better spirits today, as she feels we finally have a plan, and can start fighting! Her oncologist also said he would consult with a dr. In NYC, that made us feel better to. It's hard to imagine that the cancer can come back, and sometimes the worry consumes you, but we just keep praying! Hillary

hillaryjoRN

westie66 said:

Gallbladder Cancer
Yup, I agree with Lourdes!
Cheryl

Mom has decided to have
Mom has decided to have treatment here in Wisconsin, she feels comfortable with the oncologist and feels she will do better mentally and physically if she is home by us. She will have radiation with 5fu, (not sure how long) followed by Gemcitobine. That sounds like what most people here have gone through. She is in much better spirits today, as she feels we finally have a plan, and can start fighting! Her oncologist also said he would consult with a dr. In NYC, that made us feel better to. It's hard to imagine that the cancer can come back, and sometimes the worry consumes you, but we just keep praying! Hillary

hillaryjoRN

westie66 said:

Gallbladder Cancer
Yup, I agree with Lourdes!
Cheryl

Mom has decided to have
Mom has decided to have treatment here in Wisconsin, she feels comfortable with the oncologist and feels she will do better mentally and physically if she is home by us. She will have radiation with 5fu, (not sure how long) followed by Gemcitobine. That sounds like what most people here have gone through. She is in much better spirits today, as she feels we finally have a plan, and can start fighting! Her oncologist also said he would consult with a dr. In NYC, that made us feel better to. It's hard to imagine that the cancer can come back, and sometimes the worry consumes you, but we just keep praying! Hillary

hillaryjoRN

Monarch64 said:

Hillary...
Hi Hillary,

(This is the 3rd time I've tried to get this post written. I keep getting booted off so I'm going to type, save, edit, save, edit, save... until I get this complete so bear with me.)

There is good news in your post...the fact that you are confused/getting confusing info is a good thing. It means that your mom was diagnosed at an early stage. There isn't a lot of protocol developed for Stage 1 or Stage 2 as gallbladder cancer is usually caught at later stages.

My mom was diagnosed at T2N0M0 as well. The surgeon was very grim. The oncologist kept referring to it as "stage 4" because of the statistics associated with gbc. The radiation oncologist was happy as a clam - told us how blessed we were and that we had the best chance of a "cure" because of the stage. He kept referring to it as Stage 1.

The oncologist recommended continuous infusion 5FU (5 weeks) and 28 sessions of radiation. The radiation oncologist agreed 100%. So, that's what Mom did. After treament was complete and Mom got a clear follow-up scan, the oncologist recommended a course of Gem/Ox. The radiation onc suggested that Mom didn't need to proceed with the further treatment.

He printed a doc regarding treatment protocols for gbc. It was from the cancer division of the National Institutes of Health. It had definitive recommendations for Stage 3 and Stage 4. But, it said that there were no steadfast recommendations for Stage 1 or Stage 2. It said that while there were indications of an increased incidence of positive outcomes with chemo/radiation, there was not enough data to recommend any treatment beyond that. It stated that there were just not enough cases recorded of the treatment results of early stage treatment as more often than not, the cancer was caught beyond the early stages. It also had a note to doctors asking that if they had patients in early stages, that they report treatment, results, etc so that definitive recommendations could be developed for early-stage gbc. So, that's where the confusion in the medical community comes from. Frustrating? yes. But also a good thing in a round-about way.

fyi - Mom opted to not proceed with further treatment as she had had some problems during the first protocol. (blood clot, atrial fib.) The radiation onc was confident in her decision. And, the oncologist has has come to agree with it as well. Of course, if Mom were to need further chemo in the future, she would proceed with it.

If you have any questions from a daughter's perspective, please ask. I've walked this journey and would be happy to help you in your journey in any way I can. (Look a litte futher up this thread under posts by Monarch - my old screen name. I posted the tools I put together for documenting everything. I have approached this as a project. And, it has proven to be very helpful on my occasions.)

Best wishes to you and your family!

Charmi

Thank you for your words of
Thank you for your words of encouragement. I've heard many people had the continuous infusion 5fu, with radiation, I am going to ask about this at next appt. as I think the plan was oral 5fu twice a day with radiation, which doesn't seam as aggressive!monarch where is your mother being treated? I still worry that my mom wants to stay local for treatmen ( that's why I asked her oncologist to consult with a dr. In NYC) but I know how important good morale is as well. I was on the phone with NYC and the earliest we can get in is may 5, we feel that is too far to delay treatment! But it's frustrating! You just want the best! But treatment can't be delayed. We talked about going through the radiation, then going to NYC before starting chemo, that may be the best we can do. Also should the radiation oncologist also be one that "specializes" is gallbladder ca? Hillary

hillaryjoRN

Monarch64 said:

Hillary...
Hi Hillary,

(This is the 3rd time I've tried to get this post written. I keep getting booted off so I'm going to type, save, edit, save, edit, save... until I get this complete so bear with me.)

There is good news in your post...the fact that you are confused/getting confusing info is a good thing. It means that your mom was diagnosed at an early stage. There isn't a lot of protocol developed for Stage 1 or Stage 2 as gallbladder cancer is usually caught at later stages.

My mom was diagnosed at T2N0M0 as well. The surgeon was very grim. The oncologist kept referring to it as "stage 4" because of the statistics associated with gbc. The radiation oncologist was happy as a clam - told us how blessed we were and that we had the best chance of a "cure" because of the stage. He kept referring to it as Stage 1.

The oncologist recommended continuous infusion 5FU (5 weeks) and 28 sessions of radiation. The radiation oncologist agreed 100%. So, that's what Mom did. After treament was complete and Mom got a clear follow-up scan, the oncologist recommended a course of Gem/Ox. The radiation onc suggested that Mom didn't need to proceed with the further treatment.

He printed a doc regarding treatment protocols for gbc. It was from the cancer division of the National Institutes of Health. It had definitive recommendations for Stage 3 and Stage 4. But, it said that there were no steadfast recommendations for Stage 1 or Stage 2. It said that while there were indications of an increased incidence of positive outcomes with chemo/radiation, there was not enough data to recommend any treatment beyond that. It stated that there were just not enough cases recorded of the treatment results of early stage treatment as more often than not, the cancer was caught beyond the early stages. It also had a note to doctors asking that if they had patients in early stages, that they report treatment, results, etc so that definitive recommendations could be developed for early-stage gbc. So, that's where the confusion in the medical community comes from. Frustrating? yes. But also a good thing in a round-about way.

fyi - Mom opted to not proceed with further treatment as she had had some problems during the first protocol. (blood clot, atrial fib.) The radiation onc was confident in her decision. And, the oncologist has has come to agree with it as well. Of course, if Mom were to need further chemo in the future, she would proceed with it.

If you have any questions from a daughter's perspective, please ask. I've walked this journey and would be happy to help you in your journey in any way I can. (Look a litte futher up this thread under posts by Monarch - my old screen name. I posted the tools I put together for documenting everything. I have approached this as a project. And, it has proven to be very helpful on my occasions.)

Best wishes to you and your family!

Charmi

Thank you for your words of
Thank you for your words of encouragement. I've heard many people had the continuous infusion 5fu, with radiation, I am going to ask about this at next appt. as I think the plan was oral 5fu twice a day with radiation, which doesn't seam as aggressive!monarch where is your mother being treated? I still worry that my mom wants to stay local for treatmen ( that's why I asked her oncologist to consult with a dr. In NYC) but I know how important good morale is as well. I was on the phone with NYC and the earliest we can get in is may 5, we feel that is too far to delay treatment! But it's frustrating! You just want the best! But treatment can't be delayed. We talked about going through the radiation, then going to NYC before starting chemo, that may be the best we can do. Also should the radiation oncologist also be one that "specializes" is gallbladder ca? Hillary

a_prabhat

hillaryjoRN said:

Thank you for your words of
Thank you for your words of encouragement. I've heard many people had the continuous infusion 5fu, with radiation, I am going to ask about this at next appt. as I think the plan was oral 5fu twice a day with radiation, which doesn't seam as aggressive!monarch where is your mother being treated? I still worry that my mom wants to stay local for treatmen ( that's why I asked her oncologist to consult with a dr. In NYC) but I know how important good morale is as well. I was on the phone with NYC and the earliest we can get in is may 5, we feel that is too far to delay treatment! But it's frustrating! You just want the best! But treatment can't be delayed. We talked about going through the radiation, then going to NYC before starting chemo, that may be the best we can do. Also should the radiation oncologist also be one that "specializes" is gallbladder ca? Hillary

New member - My father's treatment
Hello everyone, I am so glad I found this place.
Here is my dad's story:

We are from India.About 5 weeks ago, my dad has been diagnosed with stage 4 gall bladder cancer with secondaries on liver. It has spread to his lymph nodes as well. Doctors say surgery is not an option and unfortunately surgery option does nt even exist across India.He started his chemo couple of weeks ago, expected treatment is for 6 cycles with 3 injections in each cycle.Each cycle lasts a month.

His dose is:

First week:
Gemcitabine - 1.8 mg iv
Oxaliplatin - 150mg iv

Second week, dose decresed as his platelets reduced to 88000.
Gemcitabine 1.4mg iv

He is due for another dose in 4th week of the month which is Apr 16. He is scheduled for some scans, I m praying for signs of improvements.

His Side effects:

First 3 days : Severe diaheria
Rashes and itching - gradually reducing
Nosal bleeding - Gone
Swollen feet - started 3 days ago, still there
Jaundice - still there(we are hoping this is a side effect, and not caused by actual disease)

We called cancer hospital help line about swollen feet and they asked us to go to a local clinic who gave some medication. Hope it works.
His PET Scan CT says : Gall bladder Mets (2.1cm),liver mets(7.5cm),lymph nodes(4.6cm). I m not sure how bad these numbers are. I was out of country for last few years, flew down last week. I will be meeting his oncologist on Monday. We need to drive for 6 hrs to meet him each time. This community seems to have a lot of knowledge about this disease than my local doctors. Can you suggest if surgery is an option based on the numbers of PET scan? and what questions I should ask him. I am willing to go all the way, whatever it takes to fight this. Is Gezmar same as Gemcitabine?

I m so surprised that such a beast comes with no symptoms until it reaches this far. It was a shock for all of us and we are now starting to come
to terms with it. My dad is showing a lot of positive energy and I hope that will help him along side with the treatment.

Kudos to the person starting this community, I can not think of what I wd have done to share what I am going through.

Anil

westie66

a_prabhat said:

New member - My father's treatment
Hello everyone, I am so glad I found this place.
Here is my dad's story:

We are from India.About 5 weeks ago, my dad has been diagnosed with stage 4 gall bladder cancer with secondaries on liver. It has spread to his lymph nodes as well. Doctors say surgery is not an option and unfortunately surgery option does nt even exist across India.He started his chemo couple of weeks ago, expected treatment is for 6 cycles with 3 injections in each cycle.Each cycle lasts a month.

His dose is:

First week:
Gemcitabine - 1.8 mg iv
Oxaliplatin - 150mg iv

Second week, dose decresed as his platelets reduced to 88000.
Gemcitabine 1.4mg iv

He is due for another dose in 4th week of the month which is Apr 16. He is scheduled for some scans, I m praying for signs of improvements.

His Side effects:

First 3 days : Severe diaheria
Rashes and itching - gradually reducing
Nosal bleeding - Gone
Swollen feet - started 3 days ago, still there
Jaundice - still there(we are hoping this is a side effect, and not caused by actual disease)

We called cancer hospital help line about swollen feet and they asked us to go to a local clinic who gave some medication. Hope it works.
His PET Scan CT says : Gall bladder Mets (2.1cm),liver mets(7.5cm),lymph nodes(4.6cm). I m not sure how bad these numbers are. I was out of country for last few years, flew down last week. I will be meeting his oncologist on Monday. We need to drive for 6 hrs to meet him each time. This community seems to have a lot of knowledge about this disease than my local doctors. Can you suggest if surgery is an option based on the numbers of PET scan? and what questions I should ask him. I am willing to go all the way, whatever it takes to fight this. Is Gezmar same as Gemcitabine?

I m so surprised that such a beast comes with no symptoms until it reaches this far. It was a shock for all of us and we are now starting to come
to terms with it. My dad is showing a lot of positive energy and I hope that will help him along side with the treatment.

Kudos to the person starting this community, I can not think of what I wd have done to share what I am going through.

Anil

Your father's gallbladder cancer
I am not sure why he isn't eligible for gallbladder surgery and removal of the tumour and that liver tumour. My tumour when it was finally found was 3.5 x 2.1 x 3.3 cm - it protruded from the gallbladder and into the liver. I had the gallbladder, tumour, and liver bed where the cancer had penetrated with laparoscopic surgery on APril 2010. Don't get a laparoscopic surgery though as it cannot be aggressive enough - must do open incision and lots of things need to be taken out. Others on this board have had the surgery needed. For example, one fellow I know had a 7.5 cm tumour into the liver and he had open incision surgery to remove the gallbladder, tumour, part of liver, many lymph nodes, bile duct, etc. There is a protocol for this in the USA. I'm in Canada and it seems hit or miss!

I did not have lymph node involvement apparently but do have mets to the liver (2 cm) and the peritoneum (6 mets about 1 cm in size). I am awaiting possible surgeries to get rid of these but it may be tough.

I had 12 treatments of gemcitibine + cisplatin (GEMZAR) which may have stopped further cancer spread and had few side effects but it did not stabilize the liver or peritoneum mets. I then had 12 treatments of folfoxfiri (oxaliplatin + irenotecan + 5Fu pump + leucovin) and this did work somewhat but with some nasty side effects. I am now starting this treatment regime again (started today).

With gallbladder cancer you must be very proactive as oncologists tend to view it as terminal - it isn't but you must fight for treatment! The stats are old and outdated.

Talk to Lily50, a 6 year survivor of stage IV gallbladder cancer and what she had to do to get treated.

Keep us posted.

Cheryl

a_prabhat

westie66 said:

Your father's gallbladder cancer
I am not sure why he isn't eligible for gallbladder surgery and removal of the tumour and that liver tumour. My tumour when it was finally found was 3.5 x 2.1 x 3.3 cm - it protruded from the gallbladder and into the liver. I had the gallbladder, tumour, and liver bed where the cancer had penetrated with laparoscopic surgery on APril 2010. Don't get a laparoscopic surgery though as it cannot be aggressive enough - must do open incision and lots of things need to be taken out. Others on this board have had the surgery needed. For example, one fellow I know had a 7.5 cm tumour into the liver and he had open incision surgery to remove the gallbladder, tumour, part of liver, many lymph nodes, bile duct, etc. There is a protocol for this in the USA. I'm in Canada and it seems hit or miss!

I did not have lymph node involvement apparently but do have mets to the liver (2 cm) and the peritoneum (6 mets about 1 cm in size). I am awaiting possible surgeries to get rid of these but it may be tough.

I had 12 treatments of gemcitibine + cisplatin (GEMZAR) which may have stopped further cancer spread and had few side effects but it did not stabilize the liver or peritoneum mets. I then had 12 treatments of folfoxfiri (oxaliplatin + irenotecan + 5Fu pump + leucovin) and this did work somewhat but with some nasty side effects. I am now starting this treatment regime again (started today).

With gallbladder cancer you must be very proactive as oncologists tend to view it as terminal - it isn't but you must fight for treatment! The stats are old and outdated.

Talk to Lily50, a 6 year survivor of stage IV gallbladder cancer and what she had to do to get treated.

Keep us posted.

Cheryl

My father's gallbladder cancer
Thanks for your quick reply Cheryl. This is a lot of information. Yesterday he developed some red spots in his eye and there is swelling in his legs. We immediately rushed to a local hospital where he was tested for blood count, his platelets increased from 88000 tp 1.63. His himoglobin level is 7.3 which is low, he will be infused more blood on Monday when we go for his chemo. Doctor asked us not to worry, and today the redness and swelling had gone slightly.
As far as the tumor size goes, with chemo the can we reduce the tumor size or it will only stop the progression of cancer? From the scan about 85% of liver looks damaged. I will discuss the surgery options as well with the oncologist.
I have emailed Lily50 as well. Thanks again for your time.

lirok

a_prabhat said:

My father's gallbladder cancer
Thanks for your quick reply Cheryl. This is a lot of information. Yesterday he developed some red spots in his eye and there is swelling in his legs. We immediately rushed to a local hospital where he was tested for blood count, his platelets increased from 88000 tp 1.63. His himoglobin level is 7.3 which is low, he will be infused more blood on Monday when we go for his chemo. Doctor asked us not to worry, and today the redness and swelling had gone slightly.
As far as the tumor size goes, with chemo the can we reduce the tumor size or it will only stop the progression of cancer? From the scan about 85% of liver looks damaged. I will discuss the surgery options as well with the oncologist.
I have emailed Lily50 as well. Thanks again for your time.

Great News
Finished the first 6 of my 5FU treatments. Had my CT scan and bloodwork done yesterday at Sloane. Will find out about the scan on Tuesday when I see my oncologist but I have access to my labs online and my Antigen 19-9 which had gone back up to 116 in November is back down to 75 so I KNOW the Folfox is working. I expect 6 more treatments but we got this dog on the run. Remember all, don't pay attention to negativity from anyone ESPECIALLY your doctor. It all starts with you. Stay positive and remain upbeat. Negative thoughts breed negative results. There is tons of support out here.

Best to all,

Rocky

westie66

lirok said:

Great News
Finished the first 6 of my 5FU treatments. Had my CT scan and bloodwork done yesterday at Sloane. Will find out about the scan on Tuesday when I see my oncologist but I have access to my labs online and my Antigen 19-9 which had gone back up to 116 in November is back down to 75 so I KNOW the Folfox is working. I expect 6 more treatments but we got this dog on the run. Remember all, don't pay attention to negativity from anyone ESPECIALLY your doctor. It all starts with you. Stay positive and remain upbeat. Negative thoughts breed negative results. There is tons of support out here.

Best to all,

Rocky

Great News
For sure Rocky! And I certainly agree - there is so much negativity out there you just can't believe it. I was told 3 years ago I had 2-3 months but here I still am. Interesting you are on 5FU only for gallbladder cancer. I am on 5FU but with oxaliplatin + irenotecan + leucovin + 5FU (pump for 42 hrs).
Cheryl

lirok

westie66 said:

Great News
For sure Rocky! And I certainly agree - there is so much negativity out there you just can't believe it. I was told 3 years ago I had 2-3 months but here I still am. Interesting you are on 5FU only for gallbladder cancer. I am on 5FU but with oxaliplatin + irenotecan + leucovin + 5FU (pump for 42 hrs).
Cheryl

Great News
Cheryl, I am also on 5FU with oxaliplatin, leucovin plus the pump. I am just too lazy too type it out over and over. At Sloane they simply call it Folfox. I also wear the pump for 2 days. That is why I needed the port installed.

Rocky

Monarch64

Yeah, Rocky!
Excellent, excellent news! You just keep kicking those cancer markers to the curb!!! I'm so happy to see your wonderful news!

Charmi

Monarch64

Hillary...
Hi Hillary,

Okay...here's the process we went through with decisions. First and foremost, we (as a family) always went with Mom's wishes for treatment.

We live in the upstate region of South Carolina. And, we're about 4 hours from Duke (in NC). All of Mom's friends kept pushing her to go to Duke. Mom was adamant that she wanted to stay home for treatment. There were many reasons for this. The first was that she simply wanted to be home. The second was that she trusted all of her docs. She was comfortable with them. They knew her as a person - not just a "visitor". That was so important - made them more vested in the outcome.

We also wanted to be immediately available to the docs in case of emergencies, etc. Example - Mom got very sick and was taken to the ER via ambulance. The chemo caused afib. Her oncologist was there within a 1/2 hour to make decisions on proceeding with/pausing the infusion.

I know that because Mom wanted to stay home for the treatment, and that's what she did, that she was more comfortable with all that was going on. And, I think this greatly aided her recovery. (Likewise, if a person believes that they will do better by going elsewhere for treatment, they will probably respond better as they will have an additional comfort level of their own. I believe it really is about the patient and their desires.) I think the fact that your mom's doc is consulting with the NYC doc is the best of all worlds!

Chemo and radiation - 5FU and radiation go hand-in-hand. The 5FU enhances the radiation. If your mom is scheduled for the 5FU/radiation protocol, they will want to do both at the same time so that the synergistic effects are maximized.

5FU coninuous infusion pump vs the pill - If Mom had it to do over again, she'd push for the pill. The pump runs 24 hrs a day/7 days a week with this protocol. It is carried in a fanny pack made specially for the pump. It is not hard to monitor/run (the family is taught how to do this, too) BUT it is a constant reminder of the cancer. It made Mom crazy as she could not get away from it, not even for a moment. I know that she would have been more comfortable with the pill but it was not offered to her and we did not know to ask about it. Our onc prefers the pump so that is what he presented to us for treatment.

Radiation onc - I think you're going to have a hard time finding one who specializes in gbc. What is important is having one who is experienced with abdominal radiation so that everything is calibrated correctly avoiding other organs, etc. They did not tattoo my mom. They marked her with Shapies and covered the marks with clear stickers so that the marks wouldn't wash off. They did it this way because every week or so, they recalibrated the radiation points to account for swelling, etc.

Another thing to consider...Mom did not get IV saline from the start. We wish she had - and the doc wishes he would have started it weekly (at minimum) as well. Mom got dehydrated. Not from vomitting as she never did get sick in that way, but from just being unable to take in all the fluids she needed - especially as treatment progressed. Towards the end of the 5 weeks, she started having to have 1 to 2 bags of saline every 3 days. This continued for 6 weeks after chemo ended. Talk to the doc about this and starting out early with making sure your mom remains hydrated. (btw - this problem is more associated with the radiation than the 5FU - but it's the onc who typically orders the IV for hydration.

Charmi

lirok

Monarch64 said:

Hillary...
Hi Hillary,

Okay...here's the process we went through with decisions. First and foremost, we (as a family) always went with Mom's wishes for treatment.

We live in the upstate region of South Carolina. And, we're about 4 hours from Duke (in NC). All of Mom's friends kept pushing her to go to Duke. Mom was adamant that she wanted to stay home for treatment. There were many reasons for this. The first was that she simply wanted to be home. The second was that she trusted all of her docs. She was comfortable with them. They knew her as a person - not just a "visitor". That was so important - made them more vested in the outcome.

We also wanted to be immediately available to the docs in case of emergencies, etc. Example - Mom got very sick and was taken to the ER via ambulance. The chemo caused afib. Her oncologist was there within a 1/2 hour to make decisions on proceeding with/pausing the infusion.

I know that because Mom wanted to stay home for the treatment, and that's what she did, that she was more comfortable with all that was going on. And, I think this greatly aided her recovery. (Likewise, if a person believes that they will do better by going elsewhere for treatment, they will probably respond better as they will have an additional comfort level of their own. I believe it really is about the patient and their desires.) I think the fact that your mom's doc is consulting with the NYC doc is the best of all worlds!

Chemo and radiation - 5FU and radiation go hand-in-hand. The 5FU enhances the radiation. If your mom is scheduled for the 5FU/radiation protocol, they will want to do both at the same time so that the synergistic effects are maximized.

5FU coninuous infusion pump vs the pill - If Mom had it to do over again, she'd push for the pill. The pump runs 24 hrs a day/7 days a week with this protocol. It is carried in a fanny pack made specially for the pump. It is not hard to monitor/run (the family is taught how to do this, too) BUT it is a constant reminder of the cancer. It made Mom crazy as she could not get away from it, not even for a moment. I know that she would have been more comfortable with the pill but it was not offered to her and we did not know to ask about it. Our onc prefers the pump so that is what he presented to us for treatment.

Radiation onc - I think you're going to have a hard time finding one who specializes in gbc. What is important is having one who is experienced with abdominal radiation so that everything is calibrated correctly avoiding other organs, etc. They did not tattoo my mom. They marked her with Shapies and covered the marks with clear stickers so that the marks wouldn't wash off. They did it this way because every week or so, they recalibrated the radiation points to account for swelling, etc.

Another thing to consider...Mom did not get IV saline from the start. We wish she had - and the doc wishes he would have started it weekly (at minimum) as well. Mom got dehydrated. Not from vomitting as she never did get sick in that way, but from just being unable to take in all the fluids she needed - especially as treatment progressed. Towards the end of the 5 weeks, she started having to have 1 to 2 bags of saline every 3 days. This continued for 6 weeks after chemo ended. Talk to the doc about this and starting out early with making sure your mom remains hydrated. (btw - this problem is more associated with the radiation than the 5FU - but it's the onc who typically orders the IV for hydration.

Charmi

Hillary
Not to make light of anything but I thought I might give everyone a chuckle about the pump. I absolutely refuse to wear a fanny pack. I have a light jacket I wear that I simply place the pump(looks like a large capsule) in my pocket. When you look at me you can see the plastic tube coming out from under my jacket and going into the pocket. I have to take the NYC subway from midtown to downtown where I catch my bus. With all of the changes for security as a result of 9-11, I have been stopped at least 5 times by police officers and searched. I now carry a card given to me by Sloane explaining everything. One time they had a bomb sniffing dog check me out.

Just thought it would give people a chuckle.

Rocky

Monarch64

lirok said:

Hillary
Not to make light of anything but I thought I might give everyone a chuckle about the pump. I absolutely refuse to wear a fanny pack. I have a light jacket I wear that I simply place the pump(looks like a large capsule) in my pocket. When you look at me you can see the plastic tube coming out from under my jacket and going into the pocket. I have to take the NYC subway from midtown to downtown where I catch my bus. With all of the changes for security as a result of 9-11, I have been stopped at least 5 times by police officers and searched. I now carry a card given to me by Sloane explaining everything. One time they had a bomb sniffing dog check me out.

Just thought it would give people a chuckle.

Rocky

Laughter is the best medicine!
LOL! Rocky, you just tell 'em you're on a mission to wipe out cancer!

Charmi

hillaryjoRN

Monarch64 said:

Laughter is the best medicine!
LOL! Rocky, you just tell 'em you're on a mission to wipe out cancer!

Charmi

I totally hear what you are
I totally hear what you are saying Charmi, I now feel bad for pushing mom so hard to go to NYC, I just want thebest for her. Today she actually told me to just stop talking about it to her! it's just that this has consumed me... My mom is my Best friend and I will do anything for her. But I think I need to just be supportive of her choice, at least this way I can go to all of her appt. and ask lots of questions! I still think the pump infusion sounds more aggressive than oral 5fu, so I will ask. Too funny Rocky! Glad to hear all is going well with everyones treatments. Also I am interested in this folfox(sp?) treatment.... Is this combination of drugs used for the initial treatment of gallbladder ca? Or only with metastasis?
Thanks again for everyone's support and help! Hillary .

hillaryjoRN

Monarch64 said:

Laughter is the best medicine!
LOL! Rocky, you just tell 'em you're on a mission to wipe out cancer!

Charmi

I totally hear what you are
I totally hear what you are saying Charmi, I now feel bad for pushing mom so hard to go to NYC, I just want thebest for her. Today she actually told me to just stop talking about it to her! it's just that this has consumed me... My mom is my Best friend and I will do anything for her. But I think I need to just be supportive of her choice, at least this way I can go to all of her appt. and ask lots of questions! I still think the pump infusion sounds more aggressive than oral 5fu, so I will ask. Too funny Rocky! Glad to hear all is going well with everyones treatments. Also I am interested in this folfox(sp?) treatment.... Is this combination of drugs used for the initial treatment of gallbladder ca? Or only with metastasis?
Thanks again for everyone's support and help! Hillary .

Monarch64

hillaryjoRN said:

I totally hear what you are
I totally hear what you are saying Charmi, I now feel bad for pushing mom so hard to go to NYC, I just want thebest for her. Today she actually told me to just stop talking about it to her! it's just that this has consumed me... My mom is my Best friend and I will do anything for her. But I think I need to just be supportive of her choice, at least this way I can go to all of her appt. and ask lots of questions! I still think the pump infusion sounds more aggressive than oral 5fu, so I will ask. Too funny Rocky! Glad to hear all is going well with everyones treatments. Also I am interested in this folfox(sp?) treatment.... Is this combination of drugs used for the initial treatment of gallbladder ca? Or only with metastasis?
Thanks again for everyone's support and help! Hillary .

Take a deep breath, Hillary!
And don't be so hard on yourself. You've "pushed" your mom because you love her so much. There were plenty of times I had to stop and say to myself "this is about Mom, not about me!". Still, sometimes, I pushed and dragged my parents into my crazed worry despite my best intentions. Love does conquer all. And, your mom knows you just want the best for her. You just have to reach the point where you trust her and her decisions.

Take one day at a time and look for joy in every day. I know how hard this past year has been on me. I wish I could make it easier for you. Just trust that you will get though whatever each day brings...not without tears and fear...but always with love. You are absolutely right about the benefit of going to you mom's appts with her. You are a team! And your mom has chosen to opt for home field advantage. It's important to her and it will make a positive difference in her reaction to treatment. Lots of good wishes and prayers for your family - and for everyone here!

Charmi

westie66

Monarch64 said:

Take a deep breath, Hillary!
And don't be so hard on yourself. You've "pushed" your mom because you love her so much. There were plenty of times I had to stop and say to myself "this is about Mom, not about me!". Still, sometimes, I pushed and dragged my parents into my crazed worry despite my best intentions. Love does conquer all. And, your mom knows you just want the best for her. You just have to reach the point where you trust her and her decisions.

Take one day at a time and look for joy in every day. I know how hard this past year has been on me. I wish I could make it easier for you. Just trust that you will get though whatever each day brings...not without tears and fear...but always with love. You are absolutely right about the benefit of going to you mom's appts with her. You are a team! And your mom has chosen to opt for home field advantage. It's important to her and it will make a positive difference in her reaction to treatment. Lots of good wishes and prayers for your family - and for everyone here!

Charmi

Gallbladder Cancer Spread to Peritoneum and Liver
Hi all: I had bad news today but not unexpected. Neither the liver surgeon nor the peritoneum surgeons here in Canada will undertake the removal of one small tumour on my liver combined with the peritoneal stripping/HIPEC surgery. I had had my gallbladder, its tumour, and part of the liver removed during surgery in April 2010 and have been on chemo ever since (first cisplatin + gemcitibine; then 12 treatments of folfirinox = oxaliplatin + irenotecan + 5FU pump). The latter treatment did result in shrinkage of both the liver tumour and some of the periotoneum nodules. Which put me in line for a maybe surgery to strip the peritoneum and apply HIPEC. But these surgeries are major major and for gallbladder haven't resulted in any success here in Canada. They just don't want to risk it with no successful outcome. Tough, but there it is!
Cheryl

skip10

new to dicussion thread 4/16/12
On 3/7/12 was admitted local hospital for gall bladder infection (high white count). During admission, I had CT scan, MRI, ERCP. Brushing/washing from ERCP showed cancer cells. General surgeon transferred my care to hepatobiliary surgeon. New surgeon ordered CT scan with dye. After reviewing CT, new surgeon said I had mass on gall bladder with bile duct involvement and right sided liver involvement (also mass close to vital veins and or arteries). However, the new surgeon would attempt surgery. But, he would do diagnostic laparoscopy first. If there was no left sided liver involvement, he would proceed with the radical procedure. On 4/12, biopsy thru scope was positive for left sided liver involvement. I still have gall bladder mass. I will see surgeon this Friday for his referral to oncologist for chemo. On line, I found info on the SIR procedure or theraspheres. A local doctor does this procedure (Albany NY).Upon calling his office, I was told that I needed a referral from the oncologist (have not seen yet). I am 68 years old. On 4/13, I had stent placed (via ERCP) to drain my bile. **currently contemplating 2nd opinion from Cancer Treatment Center of America (philadelphia). Wold appreciate any feedback on the CTCA organization ??? Best wishes.......Skip