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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

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

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's picture
westie66
Posts: 642
Joined: Jun 2010

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
Posts: 9
Joined: Mar 2012

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's picture
westie66
Posts: 642
Joined: Jun 2010

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
Posts: 9
Joined: Mar 2012

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

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

Hi Christina: There are many on this discussion thread (well, there seem to be 4 of them now!) that are struggling with gallbladder cancer, and we are still here. If your husband doesn't want to ask questions (it is hard to do), then ask your oncologist and doctor all the questions and take notes. I've found that checking in on this website regularly has helped me a lot - particularly in asking the right questions. There aren't any dumb questions that's for sure! It is both of your fight. Keep us posted!
Cheryl

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

Did anyone have any issues with low grade fevers 100-102 during chemo? I had to have my bile ducts reconstructed and I have 3 metal stents installed. Recent scans show them to be clear but my oncologist feels that this is what is causing the fever.

Thanks,

Rocky

Meg2003
Posts: 13
Joined: Jan 2012

Sorry for the delayed response. My dad was scheduled to have surgery on a Monday at the Cancer Treatment Centers of America in Illinois and they canceled it the Sunday before. After all the doctors consulted over the weekend they determined that they should try doing Chemo for a bit first. They are concerned about the recovery time (he had a very slow recovery with his last surgery) and did not want to run into any complications and then have to postpone chemo. He still has a tube from his original gallbladder surgery which is causes him a lot of pain so they are talking about going in and removing his gallbladder at a minimum but we won't know for sure until they do his next scan which will be in 4 weeks.

He is currently on chemo; he flies to IL every 2 weeks for his infusion and takes the xeloda. He did really well after the first treatment, but the long term ant nausea medicine was affecting his memory and concentration so they chose to go without it this time so he had 4 days of nausea. He's decided that the confusion was easier to deal with so next time he'll get the anti-nausea med. He does have neuropathy on his hands and feet which has been making him crazy and he's using some kind of utter cream.

My parents love the center they're at. They said everyone is amazing, the doctors and nurses pray with the patients before infusions and surgery and the patients all act like they're family and are very supportive. If you have private insurance, then your flight is usually covered, which is a huge plus. Medicare patients have to cover their own airfare due do the facility not receiving full reimbursements. Again, my parents love it and say they are glad they did not go anywhere else.

He also sees a herbalist at the facility and they have him on 2 types of mushroom supplements and are supposed to stop the growth of cancer in its tracks and help regulate your white blood cell count (prevent it from dropping).

My dad's mood has improved; he does have his down days. It all depends on how sick people were that he saw at the cancer center and how miserable he is feeling from the chemo. All in all, it's not as bad as we had pictured. I'm just thankful to find this site, I was desperate for some hope and I was not able to find it anywhere else.

christina55
Posts: 9
Joined: Mar 2012

It's been awhile but I had soooo many downs the last 2 weeks. We went in for the first tx. which was cancelled because of a temp. He got 2units of blood and went in for the tx. again it was cancelled due to high bil count. Then he was admitted to the Hospital , had his Stent redone, found out that during all this the tumor had doubled in size and was how in his lungs and stomach. They did the first tx. in the hospital because of his high white blood cell count. Well after the tx. he had to stay because he went into tumor lysis syndrome. this affects the kidneys which is bad. the good part is that it is prove that it is killing off the tumor. My husband is still in the hospital , and is 20lbs over his wieght because they are trying to flush the dead tumor particals through his kidneys, The bad thing is that they may not be able to do the next round sch. for monday. I'm hoping the the best. I hope they can do the chemo , and not risk the kidneys.

loridee11
Posts: 1
Joined: Mar 2012

Hi Lily,

Thank you for sharing your story and for helping connect those going through this.

My Dad was diagnosed with Stage 3 Gallbladder cancer last June. He had his Gallbladder removed and a portion of his liver where the cancer had spread. He then underwent chemo and Radiation. His 3 month scan looked good, but they found a large tumor in December (not on an organ). They removed that and he has been on chemo since (9 weeks both pill & IV). He is still on chemo and they just found another small tumor. It appears to not be in the organ or lymph system, but it is right next to a node, so they can't say for sure until surgery which should be soon.

The thing that is scaring him and all of us is that the cancer spread while he has been actively on chemo. They are going to try another treatment, but the oncologist is not very comforting (basically told him to start planning). My dad's a fighter, but it seems like we are running out of options.

I am looking for two things I guess. Hope for me, and feedback on how I can best support him. When we talk I try to be positive but I'm not sure if that's helping him, or makes him feel he has to be forced positive with me. Any advice and words of wisdom would be gratefully accepted.

~Lori

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

If I may ask, what type of chemo is he getting? Most here had had some success with Gemzat and or Folfox (5FU). I know it sounds difficult but every day is a new day with new opportunities. You all must stay positive. Giving in is not an option.

Prayers your way,

Rocky

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi Lori
I am not sure I have many words of wisdom accept to say never give up and keep asking your Dad's oncologist questions.
Tell him about the wonderful people on the board and how they refuse to give in.

My husband was diagnosed in May last year with stage 4 gallbladder cancer with livers mets. Surgery proved not to be an option and we were told maybe he had 8 months. He has been on chemo now for 9 months and is doing ok on it. He is still working and running and biking.

I am sure Dad gets down, that's natural and you need to acknowledge that and allow him to talk about how he feels but as Rocky so rightly said giving up isn't an option. You have to have hope!

Debbie

P.S Steve is currently on Gemzar and Cisplatin.

LucyDoodle
Posts: 22
Joined: Jan 2012

I am so sorry you and your husband have had to deal with so much lately. This board is a great place to come. I have found when I have been really down the advise and support I have got here has helped so much. It helps to know you are not alone.
I would second the asking question advise you were given. I always have loads of questions for the oncologist and they never mind me asking. Steve and I are a team and that's how we plan to tackle this monster!
I also have a folder with everything in it because I think something happens to your brain when someone you love has cancer and I forget things. This way I can look back and reassure my self.
I hope the next treatment goes ahead as planned.
Sending positive thoughts
Debbie

LucyDoodle
Posts: 22
Joined: Jan 2012

Thanks for the up date about Dad, it's good to know the chemo treatment is not as bad as you and he feared it might be.
Stay positive.
Debbie

LucyDoodle
Posts: 22
Joined: Jan 2012

My husband has been having scans every 9 weeks (after three rounds of gemzar and cisplatin). Does the length of time between scans ever lengthen or is that pretty much the norm? In someways its very reassuring to know they are looking to see what is going on but you read such bad stuff about the scans......maybe you just can't think about that!

christina55
Posts: 9
Joined: Mar 2012

Because, he had a high white count, the Drs. say it was because his tumor was emitting some sort of a hormone that caused him to produce a high number. When he was given the chemo, all the dead white blood cells and tumor cell went though his kidney and caused him to have kidney failure. Since cisplatin is hard on the kidneys they are no longer going to use this. This isn't the only problem, his platetts dropped from 400 the 39 very quickly so they may stop the chemo altogether. He is still in the hospital, being monitored. This is very hard. So my husband not only got a rare cancer but a rare syndrome called tumor lysis syndrome. I have kept copies of scans and procedures, they gave me a binder so that makes it easy. I 'm really greatful for all your comments. and encouraging words I too hope that this will come out ok.
thanks chris

christina55
Posts: 9
Joined: Mar 2012

Because, he had a high white count, the Drs. say it was because his tumor was emitting some sort of a hormone that caused him to produce a high number. When he was given the chemo, all the dead white blood cells and tumor cell went though his kidney and caused him to have kidney failure. Since cisplatin is hard on the kidneys they are no longer going to use this. This isn't the only problem, his platetts dropped from 400 the 39 very quickly so they may stop the chemo altogether. He is still in the hospital, being monitored. This is very hard. So my husband not only got a rare cancer but a rare syndrome called tumor lysis syndrome. I have kept copies of scans and procedures, they gave me a binder so that makes it easy. I 'm really greatful for all your comments. and encouraging words I too hope that this will come out ok.
thanks chris

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

Hi: I, too, have gallbladder cancer, stage IV, with mets to the peritoneum and liver. I had 12 treatments of gemcitibine + cisplatin after the surgery in April 2010 that removed the gallbladder, its tumour, and part of the liver. I then had 12 treatments of oxaliplatin + irenotecan + 5FU pump + leucovin to work on the mets to the peritoneum. I am still here and its been 3 years since diagnosis. The next stage is either more chemo or surgery to remove the liver met followed by surgery to remove the peritoneum mets.
Keep up the faith. All is possible.
Cheryl

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

On Thursday morning I woke up with a 103 degree fever. Naturally, doc said to go to Sloane Urgent Care immediately. They put me on an antibiotic drip right away. X-rays were clear, CT scan showed inflammation around stents in my bile ducts but no blockages. After 11 hours sitting/laying in UC, they admitted me and I got an isolation room at 11PM. Fever subsided and I spent the night. Next morning the GI Dept. head came in and said they tossed around changing the stents but my numbers were only mildly out of line so they did not think it should be done. I convinced her to let me go home with a pill antibiotic (1750mg) for 10 days. I have scheduled chemo on Tuesday but feeling much better.

Just another bump in the road. Stay positive and FIGHT no matter what the situation. God bless you all.

Rocky

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

Good for you, Rocky!
Cheryl

DiSiano
Posts: 3
Joined: Mar 2012

Help!
Hello. I am brand new to the site and need some assistance/advice. My 66-year-old mother was just diagnosed with adenosquamous carcinoma of the gallbladder following cholecystectomy for gallstones. She is very healthy and active, so you can imagine our shock. Her PET scan shows an area of high activity in the right lobe of the liver, which the doctors believe is metastasis. She is scheduled to have an exploratory laparotomy on April 10th. If there are no other visible lesions, the surgeon plans to resect the right lobe of the liver. They want to perform a portal vein Embolization on April 2nd. Apparently this will cut off the blood supply to the right lobe and make the left lobe "take up the slack.". Have any of you undergone this procedure? Would you recommend having it done? Is there any information you feel is vital for us to have? This news has knocked our entire family for a loop, and we're scrambling for answers while not being sure if we're asking the right questions! I am so glad I stumbled upon this site, though. Your stories have given me hope. I've shared some of them with my mom to encourage her to fight, to not give in to the statistics.
Thank you for any information you can provide.
Donna

P.S. I can't figure out how to post without replying--sorry. Also, my mom is being treated at Shands Hospital, University of Florida. Does anyone have any experience with that facility?

hillaryjoRN
Posts: 32
Joined: Apr 2012

In March my 52 year old mother was diagnosed with T2 N0 M0 adenocarcinoma of the gallbladder. she had surgery two weeks ago to remove the gallbladder, portion of the liver, bile duct, and 16 lymph nodes. margins were negative for cancer and so were all of the lymph nodes! thank the Lord! Her current oncologist ( who states that my mother will be his only patient with gallbladder cancer because it is so rare) wanted to start her with Chemo and radiation soon. We are taking her to the Mayo clinic next week for a second opinion ( hopefully they see more gallbladder cancer there). I know we need to treat this very aggressively! I am so scared... all the research I have done paints a pretty grim picture. terrible survival rates, high reaoccurance, ect. I just want to take her to the best place in the world, and do EVERYTHING we can to beat this!!! I need my mother!! I appreciate any information I can get, and would love some encouragement! I know that GOD is in control... I keep telling myself that:)

P.S. I dont' know how to post, just Reply...hope thats OK

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

HillaryjoRN, this sound EXACTLY like what I have. I underwent surgery in Feb. of 2011. I had chemo (Gemzat) through last summer. I underwent 28 consecutive days of radiation to the pelvic area. Had my bile ducts reconstructed and stents placed to keep them open. A year later I am still on chemo (Folfox 5FU) as I have a small amount of active cancer in some lymph nodes that are playing peek a boo. It is a very rare and aggressive cancer but I am doing well and we have it on the run.

Keep positive despite what you read. There are exceptions to EVERYTHING and this is one of them. Mom is young and can withstand an aggressive approach to therapy. My prayers are with you and we will BOTH overcome this.

Rocky

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

Hillaty,
I too was diagnosed 2 years ago in April with gallbladder cancer. T2 N0 M0 and also had a liver resection with negative margins and and negative lymph nodes at the age of 48. I was treated at UCLA and had a second opinion at UCLA. ALso my oncologist consulted with Cleveland clinic. It seems like each doctor had their own opinion on how aggressive to be. My surgeon recommended no follow-up chemo, but the team a Dana Farber and Cleveland Clinic did suggest follow-up chemo as an extra precaution. I did follow through and have 5 weeks of radiation and chemo, followed by 4 months of Gemzar. The few people that I have came in contact with that are survivors have all received some type of follow-up chemo. I think this disease is rare and it is important to travel to doctors that have treated gallbladder cancer and are similar with the best treatment options. I wish your mother the best, and please let her know there is much hope. I will be interested in hearing what the doctors at Mayo recommend and what they have to say.

Lourdes

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

Hi: Interesting to see another gallbladder cancer person having the FOLFOX treatment. I had 12 treatments at first of gemcibitine and cisplatin. No side effects but apparently didn't stabilize the mets to the peritoneum (I had the gallbladder and its tumour removed). I then did 12 treatments of FOLFOXFIRI (oxaliplatin + irenotecan + 5FU pump) and although it was a nasty combination it did seem to stabilize and even shrink some of the peritoneum nodules. I came off it Nov 4 but am back on it again next week. Unfortunately I have to pay for the oxaliplatin here in Ontario.
Cheryl

hillaryjoRN
Posts: 32
Joined: Apr 2012

Thank you both for your response. Just what I needed to hear today after meeting with Mom's current oncologist here in WI, who doesn't have experience with Gallbladder cancer (he didn't make us feel very optomisitic), we are scheduled to go to the Mayo clinic next week. I hear they have a phase 2 clinical trial, and am interested in the details.. is anyone else currently participating in a clinical trial? From Mayo we may seak a 3rd opinion..any recommendations?? a physician I work with suggested Ketteran Slon memorial in NY? Thank you all so much! You don't know how wonderful it feels to hear from other people going through this and SURVIVORS!! My prayers go out to you! God is in control!
Hillary

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

Hillary, I am being treated at Sloane Kettering in NYC. Fantastic hospital. My oncologist is Dr. Eileen O'Reilly. I would highly recommend her. Let me know if I can give you any other info.

All the best and STAY STRONG !!!!!!!!!!!!!!!!

Rocky

hillaryjoRN
Posts: 32
Joined: Apr 2012

called NYC to make an appointment today. we are faxing all her info right now! hopefully she can get in asap! Lirok, was your bile duct involved? why the stent?

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

Hillary,

My bile ducts were involved as the tumor grew over them. They were all removed when they did the liver resection. They took part of my large intestine and created new bile ducts. Shortly after the surgery for some reason they closed and they decided to place metal stents in all three of them. I have had them for a year now and no major problems.

My surgeon at Sloane who is BRILLIANT was Yuman Fung. He is a liver specialist. Let me know again if I can help.

Rocky

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

Hillary,

My bile ducts were involved as the tumor grew over them. They were all removed when they did the liver resection. They took part of my large intestine and created new bile ducts. Shortly after the surgery for some reason they closed and they decided to place metal stents in all three of them. I have had them for a year now and no major problems.

My surgeon at Sloane who is BRILLIANT was Yuman Fung. He is a liver specialist. Let me know again if I can help.

Rocky

maudsie
Posts: 54
Joined: May 2010

Hi Hillary, I haven't been here for a while and would like to give a shout out to Cheryl and Rocky and all the people participating on this thread......and to Lily, of course. I was diagnosed with GBC T3N0M0 almost four years ago. The T3 is due some of the GB cancer invading adjacent liver tissue, all successfully removed with surgery. I am doing fine now. At Mayo or Sloane Kettering or about ANYwhere it will be advised that your mom have radiation and chemo. Although she appears to be in a rare group that has caught this cancer early, and therefore has an EXCELLENT chance of beating this thing, with this aggressive cancer you can never be too sure, so you go for it! And it sounds like you are doing all the right things. BRAVO, and stay strong!

maudsie
Posts: 54
Joined: May 2010

Sorry, this got posted twice

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

Hi all: I would certainly echo Maudie's comments. Get the best gallbladder cancer person you can get (and I hear Sloane Kettering is one of the best - we even hear about it here in Canada!). I unfortunately did not have the most complete surgery I should have - only laparoscopic removal of the gallbladder, its tumour, and part of the liver bed. I was diagnosed in 2009 and had the surgery in April 2010. Unfortunately the cancer had already spread to the peritoneum and that couldn't have been removed anyways during regular surgery. I was told I couldn't have radiation as my liver was already compromised (whatever that means!). As Lily says time and again, you may have to fight for treatment because gallbladder cancer is kind of rare. But get it. Murray, another Canadian with gallbladder cancer, couldn't be treated where he lives and so went to the Mayo Clinic in Minnesota and has excellent treatment there (the "right" surgery) and still has excellent care as they assess his follow-up scans. Good luck!
Cheryl

hillaryjoRN
Posts: 32
Joined: Apr 2012

well, mom said they just confused her at the Mayo clinic today. basically said... its up to you what kind of treatment you want. stating there is NO research to prove that chemo or ratiation makes any difference in the outcome! We definatley want to have aggressive treatment, you cant look back a year or so from now and wonder if things would have worked out differently if you had treatment. but now we just don't know what kind of treatment to persue! The oncologist said he was going to give my parents some "sobering statistics" and my dad stopped him and said "don't please, we are focusing on the positive!" good for him! I guess they said they disagreed with the other pathology report and call is a T2 N0 M0, stage 3. I know stage 3 is not good, but am hopeful that surgery remmoved all of the cancer!! is anyone else stage 3?? what does this mean?? how do we decide what to do??

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

Hi Hilary,
Why are they calling your mom's cancer stage 3? That doesn't correspond to T2 M0 N0? Stage 3 usually means it has gone through the wall or has gone into the nearby lymph nodes? I had T2 M0 N0 R0 and was told it was stage 2 and it used to be stage 1b according to the older version of the cancer manual used for staging. I also hated hearing those survival numbers from doctors, they spitted it out like it meant nothing. One oncologist told me it ALWAYS comes back. My surgeon said I had a 70 percent chance and Dana Farber said 50/50. It seems like they all say something diffferent. I have spent alot of time on the internet and I have seen many studies that report increased survival for T2 M0 N0 if a liver resection is done as opposed to just gallbladder removal. My case was presented to a tumor board and I also sought other opionions and no one seemed to agree on whether chemo/radiation was a good option. However, Dana Farber doctors did suggest I have chemo./radiation because there were no data to prove it didn't help. My local oncologist also said she felt it was best to do something , rather than nothing and have regrets later. I do know a lady that went to Mayo for T2 M0 N0 gallbladder cancer and was recommended that she hasve chemo. , but not radiation. She is almost two years cancer free and is doing well. I am glad to hear that you and her husband are advocating for her. This is a lonely disease and it is hard to find others who have experienced this type of cancer. I wish more survivors of gallbladder cancer would share their stories.
Take care,
Lourdes

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

Sorry posted twice :}

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

Hi: I have stage IV gallbladder cancer (but no lymph node involvement so far - but mets to the liver and peritoneum). Don't let them give you those stats that say you have only 2-3 months, no one survives, blah blah blah. Get the best treatment you can from a noted gallbladder oncologist. Surgery to remove the gallbladder, its tumour, and adjacent tissues is paramount. The real controversial thing is the follow-up treatment. I couldn't have radiation because my liver was compromised whatever that means. The standard chemo treatment seems to be cisplatin + gemcitibine. Getting other kinds of chemo is difficult, at least here in Canada. I have had and am having again folfirinox (oxaliplatin + irenotecan + 5FU). There are too few of us for a clinical trial so the chemical people simply don't care. Problems start with peritoneum seeding. Difficult to detect and hard to treat. Make sure they check that.
Cheryl

hillaryjoRN
Posts: 32
Joined: Apr 2012

I read the Path report from here in wausau and it said T2 N0 M0 stage 2. however we sent to slides to Mayo and they said it is T2 but stage 3! I don't know??!! I wish I could have been at her appt. but I will question it. The margins were negative and there is no metastisis so I don't know how you can change the stage?? We are still wondering if we should go to NYC. appt is set for the 20th. however we are worried to delay treatment any longer. she had surgery on the 16th. so it's been almost a month with no treatment?? do you think it would be ok to wait till the 20th? how long did you all wait before you started treatment??? thank you all so much for your support and HOPE... you all are so helpful!! and I pray for everyone of you! -Hillary

hillaryjoRN
Posts: 32
Joined: Apr 2012

She did have radical surgery to remove the gall bladder, margin of the liver and surrounding lymphnodes (16 of them). nodes were hegative and liver margin was negative, so I thought that was good news, however the mayo oncologist told her that "it comes back" and people who recommend treatment don't understand the disease and its progression! I think he's wrong! you all are proof that treatment helps!!

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

Hillary,
Sounds like your mother had an excellent outcome to her surgery. She had negative margins and negative lymph nodes. That is the best news a person can receive with this diagnosis. I had the same T2 diagnosis and was staged at stage 2 by several doctors. Did the doctors at Mayo see something else in the slides? Seems way strange and the doctor seems very discouraging. I think he is wrong as well and it DOES NOT ALWAYS COME BACK! T2 M0 N0 has a good chance of survival. My surgeon was very optimistic about my chances after my liver resection and did much research about my stage. He definitely said it does not always come back and that a liver resection can be curative surgery for gallbladder cancer. I started chemo. pump/radiation about 51/2 weeks after my resection, followed by 4 more months of iv chemo. I know you don't want to delay starting treatment, but perhaps a doctor who is more positive will lift your mother's spirits. I never went back to the first doctor that told me it always comes back and I felt much better after traveling to Dana Farber for another opinion as they were very kind and positive. My current oncologist in my town is not too touchy feely, but she doesn't give grim statistics either. Although it is hard to find GB survivors they are out there. I correspond with others who have more years cancer free than I do. Sounds like your mom wants to be aggressive, so she should find a doctor that will work with her and be positive. I have heard they have excellent doctors in NY and I would go if at all possible. Most of us have had GEMZAR with or without Cisplatin for chemo and radiation with 5fu or xeloda following liver resection. This cancer is rare and there is little interest in the medical community in research or treatment options so you have to advocate for the best treatment options. I think your mother should feel very encouraged, she has had the tumor removed , she is free of cancer and her lymph nodes were all clear. Bless you for helping your mother, this is a frightening experience and without family I don't think I could of faced those initial months. Lourdes

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

Yup, I agree with Lourdes!
Cheryl

hillaryjoRN
Posts: 32
Joined: Apr 2012

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

maudsie
Posts: 54
Joined: May 2010

Hi, this is Maudsie, and I think my GBC is pretty much identical to your mom's in terms of staging. I am a T3N0M0 -- spread (direct invasion, this is not metastasis) to liver but not lymph or anywhere else, and the liver spread was (hopefully) entirely resected since my margins were negative. You want to be well-healed following this surgery before you start treatment, so don't stress that you mom hadn't started for some weeks. She will be having exactly the same as my treatment: radiation with 5FU (or Xeloda, the pill form) at the same time. Following that, some IV chemo (I had gemzar, she might have that or they might add one of the platins). I'm glad she decided to stay local for these treatments, since they would probably not differ much if she went anywhere else in the world anyway. Good to be comfortable and around good support and familiar surroundings.
Lastly, Hillary, let me tell you that your Mom has an EXCELLENT chance to beat this thing. Lourdes and I are doing just that. For a few years she will be always on alert, yes, but she will get through this part. For me, it has been 4 years since diagnosis, I am doing GREAT, and I have what will probably be my very last CT scan in July. Then my oncologist will be "graduating" me. It's a long road, bumpy for a while, but then, life goes on!!!

hillaryjoRN
Posts: 32
Joined: Apr 2012

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
Posts: 32
Joined: Apr 2012

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
Posts: 32
Joined: Apr 2012

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

maudsie
Posts: 54
Joined: May 2010

..

maudsie
Posts: 54
Joined: May 2010

Lourdes, you rock!!!!!! I have known you from early in your diagnosis, and how far you have come! You now have not only vastly increased knowledge about GBC, but ...best of all... increased confidence in the FACT that this disease is SURVIVABLE. Yes it is, and your comments to Hillary were right on the money.
Bravo!
xox Maudsie

Monarch64
Posts: 22
Joined: Apr 2012

Hi gang,

Don't know what happened by my old username was locked out. So, after several days (weeks) of trying to get it resolved, I just decided to go with a new name as close to my "old" name as I could.

It's still me...Charmi...just with a new name.

Now, where were we? LOL

Rocky - you have such a wonderful spirit. You and your family are in my family's prayers every day. Sorry you've had some setbacks but sounds like things are moving in the right direction. Remember...you and Mom...winning this battle!

More in a minute, need to reread some posts because I know there's lots I want to comment on.

Charmi

Monarch64
Posts: 22
Joined: Apr 2012

Welcome to all the new members. I'm sorry you've had to come here. But, I'm sure glad you found us.

Donna - How'd you mom's surgery go yesterday? Did they do the resection? Positive thoughts and prayers being sent your family's way. (And to everyone here!)

Lucy - not sure if anyone answered your question about scans. My mom was diagnosed with T2N0M0. She had a scan a few weeks post-treatment. She's had 2 scans at 3-month intervals since then. We got excellent news today so her next scan will be in 6 months. After that, she will wait 12 months before the next scan. And, when that one comes back good (and we absolutely believe it will!), she will only have scans on an as-needed basis.

Charmi

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