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Gallbladder Cancer - 2012 (Any Stage)

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi everybody!

I'm starting a new discussion thread after having some frustrations posting today.
When the threads get too large we seem to have problems. Double posting, no posting, disconnect, etc. I don't know if you have experienced this or not, but it just drives me crazy.

Of course I will still check the other threads but if we all could move forward to this thread, it might be easier for us.

For those of you who don't know me I'm Lily and I am a six year survivor of Gallbladder Cancer Stage 4. I was given a very short time frame at time of diagnosis but everyone was wrong! You can read my story under my profile.
I have had the last laugh, continue to laugh and I'm doing well.

Post your story and let others know you have survived the battle, are in the midst of the battle, or are continuing on with your battle which may have changed from original diagnosis.

This is a terrible disease but you can beat it. Talk to us and we will try to help you.

Take Care
Lily

Monarch64
Posts: 22
Joined: Apr 2012

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

hillaryjoRN
Posts: 32
Joined: Apr 2012

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
Posts: 32
Joined: Apr 2012

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
Posts: 5
Joined: Apr 2012

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's picture
westie66
Posts: 642
Joined: Jun 2010

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
Posts: 5
Joined: Apr 2012

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's picture
lirok
Posts: 49
Joined: Jun 2011

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's picture
westie66
Posts: 642
Joined: Jun 2010

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's picture
lirok
Posts: 49
Joined: Jun 2011

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

maudsie
Posts: 54
Joined: May 2010

Hillary -- Maudsie here again. Let me underscore -- Xeloda is the pill form of 5FU. My oncologist at Duke and very much up with the latest, actually PREFERS the bill to the IV form. Some like one, some like the other, but just because one is IV and one "only" a pill is no reason to assume that the IV is more aggressive than the pill, just because a pill is so much easier to deliver. And, again, staying local is no problem -- it would be if they didn't know what they were doing or refused to check out up-to-date protocol, or were being totally negative or something, but her treatment sounds right on target. Go forward !!!!!

Monarch64
Posts: 22
Joined: Apr 2012

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

Charmi

Monarch64
Posts: 22
Joined: Apr 2012

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's picture
lirok
Posts: 49
Joined: Jun 2011

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
Posts: 22
Joined: Apr 2012

LOL! Rocky, you just tell 'em you're on a mission to wipe out cancer!

Charmi

hillaryjoRN
Posts: 32
Joined: Apr 2012

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
Posts: 32
Joined: Apr 2012

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
Posts: 22
Joined: Apr 2012

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's picture
westie66
Posts: 642
Joined: Jun 2010

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

maudsie
Posts: 54
Joined: May 2010

Sorry for your news......will your docs reconsider down the road? You have had good results with your chemo cocktail, will you go forward with that for now? Or will you take your case elsewhere? Cheryl you have come so very far....keep the faith!
Maudsie

maudsie
Posts: 54
Joined: May 2010

Charmi!!!!! I have read your latest posts, mostly responses to Hillary, with total delight!! YAY! I agree 100% with everything you have said. Just wanted to give you a pat on the back. I am sorry I have been away from this board and haven't been here sooner to get in on this discussion. But here I am for today anyway...

love around, Maudsie

skip10
Posts: 6
Joined: Apr 2012

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

maudsie
Posts: 54
Joined: May 2010

Hi Skip -- I just need a clarification -- have you not had the larger follow-up surgery? Not just laparoscopic, but an open procedure where a large wedge of liver (hopefully including all the cancer there) and a bunch of nearby lymph and ducts where necessary are removed (and ducts rebuilt and/or replaced with stent)? Seems like this is the step to take, by a very experienced hepato-biliary surgeon. ANd, if not, it is because your docs are hoping to reduce tumor mass with chemo first? I guess my real message here is that surgery, in the case of GBC, is usually the best way to get at the problem if if is an option.

I have had no direct experience with CTCA, but others have given good reports.

skip10
Posts: 6
Joined: Apr 2012

Hi Maudsie: Thank you for yor response. I did not have larger follow up surgery. Surgeon said there was "no sense" (since he cannot resect entire liver). I also got the impression that he would not do surgery post chemotherapy (even with the reduction in tumor size). Currently CTCA is reviewing my insurance and I expect to talk with thier intake coordinator TODAY! Kindest Regards......Skip

skip10
Posts: 6
Joined: Apr 2012

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). Would appreciate any feedback on the CTCA organization ??? Best wishes.......Skip

skip10
Posts: 6
Joined: Apr 2012

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). Would appreciate any feedback on the CTCA organization ??? Best wishes.......Skip

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Skip: I guess I would agree with Maudsie on this. I had the laparoscopic surgery April 2010 to remove my gallbladder, its tumour, and the liver bed into which the tumour had grown. It should really have been the radical open surgery that has been shown to help a lot with gallbladder cancer (several on this board have had that done). I didn't have any involvement it seems with the bile duct or lymph nodes but do have mets to the peritoneum and one to the liver. It was my impression they could remove up to 70% of the liver as it grows back quickly. I would certainly get a 2nd opinion from Sloan Kettering in New York - known gallbladder cancer specialists there. We've even heard of them in Canada. I, too, am 68 years old. Will you have chemo? The standard is gemcitibine + cisplatin but that didn't work well for me. I'm on folfirinox (oxaliplatin + irenotecan + 5FU pump). Keep us posted.
Cheryl

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Saw my oncologist at Sloane today to review blood work and CT scan. CA 19-9 down to 75 from 101. Doc says cancer is basically stable. Some of the lymph nodes have shrunk. She is happy with results. We will continue with another six rounds of the Folfox chemo as it is working. There has been no new growth or spreading anywhere. Bile duct stents look clear. I know this a long term fight so I expect small, gradual improvements. Could not be happier.

Hope everyone has similar results. Stay the course, stay positive.

All the best,

Rocky

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Saw my oncologist at Sloane today to review blood work and CT scan. CA 19-9 down to 75 from 101. Doc says cancer is basically stable. Some of the lymph nodes have shrunk. She is happy with results. We will continue with another six rounds of the Folfox chemo as it is working. There has been no new growth or spreading anywhere. Bile duct stents look clear. I know this a long term fight so I expect small, gradual improvements. Could not be happier.

Hope everyone has similar results. Stay the course, stay positive.

All the best,

Rocky

hillaryjoRN
Posts: 32
Joined: Apr 2012

Good news Rocky! Mom met with the radiation oncologist today, tomorrow she is having a CT scan for "mapping" to begin radiation and chemo hopefully next week. she has decided to start treatment here ASAP, then after finishing a round of radiation/ chemo. Hopefully go to NYC to see what they have to say. Has anyone heard of this molecular testing? Wondering what it all involves?! Sincerely, Hillary

hillaryjoRN
Posts: 32
Joined: Apr 2012

Good news Rocky! Mom met with the radiation oncologist today, tomorrow she is having a CT scan for "mapping" to begin radiation and chemo hopefully next week. she has decided to start treatment here ASAP, then after finishing a round of radiation/ chemo. Hopefully go to NYC to see what they have to say. Has anyone heard of this molecular testing? Wondering what it all involves?! Sincerely, Hillary

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

That's great Hillary. The quicker the better. Do you know the name of the oncologist in NY? I have Dr. Eileen O'Reilly and she is fantastic. Specializes in gastro intestinal specifically the gall bladder and liver. She actually saved a close friend of mine 15 yrs ago with Ewings Sarcoma. You are getting some great advice here from some very good people. Take that plus your doctors advice and together with you and Mom you can make some sound decisions.

Good luck and STAY POSITIVE.

Rocky

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

for us gallbladder cancer people! Good going Rocky. What chemo regime did you have - chemo brain, I forget! Sloan Kettering is certainly one of the best places to be!
Cheryl

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Cheryl,

I am TOO familiar with chemo brain. I started last year with Gemzat (cisplatin and gemcitabene) for a total of 12 treatments. In October I had 28 radiation treatments to the abdomen and chest. Then in January I started the Folfox (5FU with pump) for 6 treatments and have now started another round of 6 treatments. Side affects have been getting worse but I am getting good results with affected areas.

Chemo brain ---- forgot my name. LOL

Rocky

bjs
Posts: 23
Joined: Apr 2011

Hi Rocky,
I have had great trouble trying to post for the past few months so i hope that you see this one! I was diagnosed with gallbladder cancer when my gallbladder was removed in March, 2011. I was given the usual dire prognosis that we have all heard. But I found an oncologist here in Seattle with experience treating my cancer and I continue to do well. In fact, I feel better than I did a year ago when I was receiving six weeks of radiation. Like you, I have a bile duct stent. Orginally, I had a plastic stent but it frequently clogged causing high fevers, violent chills etc. I had several emergency stent changes last year and in September the doctors decided that a metal stent was better for me. It clogged once earlier this year so we have decided on a regular ERCP schedule to check it and clean it if necessary. I also take a pill to thin my bile after each meal that may help to prevent blockages. I hesitated to get a metal stent because I had read that they are permanent and I still hope to get enough shrinkage to have surgery. The doctors assured me that surgery is still possible witht he metal stent. My remaining cancer is in lymph nodes in the bile duct and are on the wall of the major vein making surgery impossible. I am getting great chemo results. My cancer has not grown since it was diagnosed and my CA19-9 is down to 11. when i was first diagnosed, it was over 400. I still hope that the lymoh nodes will actually shrink so that the surgery is possible. My oncologist has a patient with a similiar cancer and a stent who has also beem unable to have surgery but is doing well after over five years on my chemo regimen. I have two weeks of oral Xeloda combined with two infusions of Gemzar followed by one week off chemo. I have been doing this since last June. Before that I had the six weeks of radiation and took oral Xeloda daily during that treatment. I have been very lucky and have few side effects. I have occasional redness and soreness in my hands or feet from the Xeloda and the Gemzar has caused drops in both my white and red blood counts. I have had three tranfusions of red cells and get a Neulasta shot every three weeks to stimulate my bone marrow.
My husband and I have been able to travel a bit on my off chemo weeks. I frequently go to DC to visit my grandchildren and we went to Napa Valley on my last off week. I do Pilates once a week and have a genrally good energy level. My oncologist is amazed at well I have responded so far.
You are right about the need to stay positive!
Betty

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Betty,

That is fantastic news. We sound like we are traveling a similar path. I am so overwhelmed when I hear a POSITIVE result from someone with our illness. I will need to have the stents replaced pretty soon because I am still getting the occasional low grade fever with chills. I know I will be on this chemo regimen for quite some time but as long as it works at keeping the monster at bay, I am fine with it. Some of nodes have shrunk while others have stayed the same.

Glad to hear your great results. It gives hope to alot of people.

Be well and best wishes,

Rocky

skip10
Posts: 6
Joined: Apr 2012

Dear Cheryl: I have committed to having an evaluation with CTCA in Philadelphia. But, I will keep your advice in mind about Sloan Kettering (as possible next step). I assume I will have chemo once I get to the oncologist. I have follow up appointment with HB surgeon this Friday. On Friday, I assume HB surgeon will recommend me to a local oncologist. I really appreciate your advice................Skip

hillaryjoRN
Posts: 32
Joined: Apr 2012

I was reading moms physicians notes from Mayo. They say she had a T2 NO M0 but a stage 3. I don't understand the stage thing! She has no mets or no liver involvement. Online I found something about the staging means how the cells look like compared to normal gallbladder tissue. Just wondering if anyone else was "staged" And what it means

lourdes726's picture
lourdes726
Posts: 15
Joined: Apr 2010

Hillary,

How the cells looked compared to normal gallbladder cells usually refers to the grading of the cancer, such as well differianted, etc.
Everythng I have read points to T2N0 M0 as stage 2, the AJCC Cancer Staging Manul has T2 N0 M0 gallbladder cancer as stage 2 in the current manual. I wonder if it it was just a mis ake in the report. Without liver involvement or spread to nodes it doesn't add up to stage 3. I wonder if you could leave a message with the doctor at Mayo or an email and ask them why this is stage 3 and not stage 2? They should be able to answer your question or maybe your mom's local oncologist can answer this question. I would be interested in knowing why they are calling it stage 3, doesn"t seem correct.

Lourdes

hillaryjoRN
Posts: 32
Joined: Apr 2012

I think the dr. Ment grade, not stage, or maybe I read it wrong. I know it did not invade the serosa or any surrounding tissue so it is a stage 2. But what does the grade really mean? Just that it doesn't look like normal gallbladder tissue? ( well no kiddin it's cancer!) mom starts treatment on Tuesday!! Keep the prayers going!! Hope everything is going well for everyone! Tomorrow we celebrate my daughter Amelia's 1st birthday, and I trust that God will let her grandma "rara" be around to celebrate many more with her! Hillary

haugy
Posts: 9
Joined: Sep 2010

I was treated at the Mayo Clinic, and my cancer was staged like this
ajcc T3 N1 M0 stage 3B with an invasive grade 3(of 4) adenocarcinoma
Murray

hillaryjoRN
Posts: 32
Joined: Apr 2012

Invasive grade 3. I just read the report. It is stage 2 T2N0M0. mom is doing great with radiation and chemo so far! one week in. she is on her second week and still able to watch her granddaughters!!

curriewalla
Posts: 9
Joined: Apr 2012

I am not a medical professional. I know someone with gallbladder cancer.

hillaryjoRN asked about tumor grade. Her April 2 post said that the tumor is an adenocarcinoma. The grade is determined after looking at the cells under a microscope. I think that the grade ranges from 1 - 4. Look in the Mayo doctor's notes for something like "invasive grade 3 (of 4) adenocarcinoma".

* grade 1 (low grade) cancer cells look more like normal gallbladder tissue, and are less likely to grow fast and spread quickly.
* grade 4 (high grade) cancer cells look really abnormal, and are more likely to grow fast and spread quickly.
* grade 2 and grade 3 are in-between.

When you read about grade, you may see the terms "well-differentiated" and "poorly differentiated". "Differentiation" refers to how closely the cancer cells look like normal gallbladder tissue cells under a microscope. Well differentiated is usually a lower grade (looks more normal), while poorly differentiated is usually a higher grade (looks more abnormal).

It is preferable to have low grade, well-differentiated cancer cells because they are believed to have less aggressive behaviour. High grade, poorly differentiated cancer cells are believed to have more aggressive behaviour.

Kristina916
Posts: 3
Joined: Apr 2012

Hi All! I hate to have to be here, but I am overjoyed to come across this group! My 54-year old mother was recently diagnosed with gallbladder cancer…. seems to have spread to her bile duct and there are “flecks” all across the surface of her liver… so no surgery for her. My mom is super healthy, fit and, like all of you, the news came as a great shock. The GI doc has put in a stent and we are now waiting for her bilirubin levels to get down so we can start chemo. Since we are waiting anyways, I am coping with the shock but researching like a madwoman. We were told surgery would never be an option and she would be on chemo forever…. but my mom is my best friend and she is one strong, determined woman- we do not take “no” as an answer. Your stories have given me the hope I was searching for the past few weeks. I couldn't thank you all enough.
We are in the Chicago area and I feel like I am having a hard time finding someone to guide me to places I should go or people I should talk to. I have met two oncologists, who do specialize in GI and are lovely people, but I feel like I am interviewing for a CEO for my mom’s life and I would like to find someone as relentless as I am. Does anyone have any recommendations for the Chicago area? Or are from Chicago and found they were better off at another location? Any guidance for this daughter is greatly appreciated.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: I can't answer your question about where to go for advice/treatment as I'm a Canadian. Gallbladder cancer isn't that common. I know the surgeons at the Mayo clinic in Rochester did a wonderful job on a fellow canadian with gallbladder cancer. I also hear rave reviews about Sloan kettering in New York. I think because this cancer is rare that your mom may be fine in the Chicago area (after all it is a huge city) but could benefit from a second opinion at the known "experts" in this field (e.g. at Sloan Kettering). I'm sure others on this discussion board will help there.

But I just wondered if your mom had her gallbladder and its cancer out during surgery? or that the surgeons wouldn't do the surgery because she already has mets to other places? or if the tumour is too big (i.e. extends out of the gallbladder to say the liver)? Those that have survived the longest did have the gallbladder, its tumour, and a lot of other things surgically removed before chemo began. It can be difficult convincing a surgeon to do this if there are already mets; but as Lily50 says, you just have to be persistent and aggressive. There aren't a whole bunch of surgeons in the States that will do the complete surgery that is needed. I didn't have it unfortunately but did have the gallbladder and its tumour removed. Your mom is only 54 so should have a good chance.

The standard chemo treatment for gallbladder cancer is gemcitibine + cisplatin (or carboplatin if cisplatin can't be tolerated). That didn't work for me as I have mets to the peritoneum and liver but what might be working is something called folfirinox (thinking outside the standard chemo box for sure!).

Anyways, keep us posted. I'm sure you'll get a flood of responses re treatment centres and
options.

Cheryl

mrookard2011
Posts: 1
Joined: Apr 2012

Hello Everyone,

May 2011 at the age of 31 years old I was diagnosed with stage IV gallbladder cancer and it already spread to my liver. I've been on chemo from June to Feb 2012. Things were looking well. MRI showed the tumors shrunk over 50%. March 2012 I have cancer in my lungs now. I'm starting Y-90 on Wednesday May 2, 2012 to treat my liver. Doctor inform me that is my liver goes than I won't be able to have chemo. Doctor gave me 7 months to live and his goal is to get me to December. I go to Emory Winship Cancer Institute in Atlanta, Georgia. I want to live and I want to make sure my husband and I are getting all the iinformation. I have a 6year old daughter name Madison and a 3 year old daughter Myla. Any suggesstions!!!!!!!!!!!!!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: As you can see from my last post, I too have Stage IV gallbladder cancer that spread to my liver and the peritoneum. I did have surgery to remove the gallbladder and its tumour and where the tumour had entered the liver. I'm not sure if your gallbladder and its tumour were removed right at the beginning (that would have been a good time to remove the liver thing but I didn't get that done either). Some people on this board have had radiation to treat the liver tumour with gallbladder cancer. Remember that it is still gallbladder cancer if it spread from the gallbladder tumour. I am not familiar with Y-90 as I live in Canada. My advice is to get the best advice you can get. There aren't a lot of gallbladder cancer specialists in North America it seems but there are good ones for sure at Sloan Kettering in New York. It would hurt to get a second opinion re treatment and you'll like have to be pretty aggressive to get that (read Lily50's bio). Your doctor's goal should be to get you beyond that. I was given 2-3 months in April 2010 but here I am. I had the standard chemo regime of cisplatin + gemcitibine for gallbladder but that didn't work well. I've now finished 12 treatment of something called folfirinox and am starting that regime again. It did seem to help in shrinking or at least stabilizing the tumours. I am inoperable so chemo is palliative.
Cheryl

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: As you can see from my last post, I too have Stage IV gallbladder cancer that spread to my liver and the peritoneum. I did have surgery to remove the gallbladder and its tumour and where the tumour had entered the liver. I'm not sure if your gallbladder and its tumour were removed right at the beginning (that would have been a good time to remove the liver thing but I didn't get that done either). Some people on this board have had radiation to treat the liver tumour with gallbladder cancer. Remember that it is still gallbladder cancer if it spread from the gallbladder tumour. I am not familiar with Y-90 as I live in Canada. My advice is to get the best advice you can get. There aren't a lot of gallbladder cancer specialists in North America it seems but there are good ones for sure at Sloan Kettering in New York. It wouldn't hurt to get a second opinion re treatment and you'll likely have to be pretty aggressive to get that (read Lily50's bio). Your doctor's goal should be to get you beyond that. I was given 2-3 months in April 2010 but here I am. I had the standard chemo regime of cisplatin + gemcitibine for gallbladder but that didn't work well. I've now finished 12 treatment of something called folfirinox and am starting that regime again. It did seem to help in shrinking or at least stabilizing the tumours. I am inoperable so chemo is palliative.
Cheryl

hillaryjoRN
Posts: 32
Joined: Apr 2012

Kristina

We live in Wisconsin, while doing research for my mother I found a Dr. Leslie at Rush in Chicago, I believe he "speacializes" in Gallbladder cancer. we had an appt. with him but never went as mom decided to have treatment locally. I too wanted my mother to go where ever to see "the best" our local oncologist was more than willing to consult with other "specialists" in gallbladder cancer. so you have that as an option too. I've found that the treatment for gallbladder cancer is pretty much the same wherever you go, as far as chemo/radiation goes. but surgery is another issue and you may have to travel to find someone willing/able to due the surgery. I know what you are going through! I'm so sorry and will pray for your family! Hillary

hillaryjoRN
Posts: 32
Joined: Apr 2012

Kristina

We live in Wisconsin, while doing research for my mother I found a Dr. Leslie at Rush in Chicago, I believe he "speacializes" in Gallbladder cancer. we had an appt. with him but never went as mom decided to have treatment locally. I too wanted my mother to go where ever to see "the best" our local oncologist was more than willing to consult with other "specialists" in gallbladder cancer. so you have that as an option too. I've found that the treatment for gallbladder cancer is pretty much the same wherever you go, as far as chemo/radiation goes. but surgery is another issue and you may have to travel to find someone willing/able to due the surgery. I know what you are going through! I'm so sorry and will pray for your family! Hillary

Kristina916
Posts: 3
Joined: Apr 2012

Thanks hillaryjoRN- I will make sure to look into that doctor. I have been researching any and all possible treatment options- I have even looked into alternative herbal therapies. I am pretty desperate to find whatever I can out there.

To westie66- thank you for replying as well. My mom has not had her gallbladder removed. She was scheduled for a whipple procedure, but they found mets on the surface of her liver and did not operate. She now has a stent in her bile duct- we need to wait for her bile to cooperate before we can start any treatment- very frustrating! I believe she will be starting on the same regime you are on currently- I believe there are 3 chemo drugs and hope the effects will not be too hard on her.

I guess my next step will be to find a surgeon who is able and willing to help us. Thank you for all your advice and you are all in my prayers.

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