Gallbladder Cancer - 2012 (Any Stage)

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  • skip10
    skip10 Member Posts: 6
    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). Would appreciate any feedback on the CTCA organization ??? Best wishes.......Skip
  • skip10
    skip10 Member Posts: 6
    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). Would appreciate any feedback on the CTCA organization ??? Best wishes.......Skip
  • maudsie
    maudsie Member Posts: 54

    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

    good plan, Hillaryjo!
    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!!!
  • maudsie
    maudsie Member Posts: 54

    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

    Xeloda
    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 !!!!!
  • maudsie
    maudsie Member Posts: 54
    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

    Ms Monarch
    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
  • maudsie
    maudsie Member Posts: 54
    skip10 said:

    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

    Hi Skip
    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.
  • maudsie
    maudsie Member Posts: 54
    westie66 said:

    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

    Cheryl
    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
  • skip10
    skip10 Member Posts: 6
    maudsie said:

    Hi Skip
    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.

    clarification
    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
  • westie66
    westie66 Member Posts: 642
    skip10 said:

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

    Gallbladder Cancer
    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
    lirok Member Posts: 49
    westie66 said:

    Gallbladder Cancer
    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

    Gallbladder Cancer
    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
    lirok Member Posts: 49
    westie66 said:

    Gallbladder Cancer
    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

    Gallbladder Cancer
    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
    hillaryjoRN Member Posts: 32
    lirok said:

    Gallbladder Cancer
    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

    Good news Rocky! Mom met
    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
    hillaryjoRN Member Posts: 32
    lirok said:

    Gallbladder Cancer
    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

    Good news Rocky! Mom met
    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
    lirok Member Posts: 49

    Good news Rocky! Mom met
    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

    Good News Rocky ! Mom met
    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
    westie66 Member Posts: 642
    lirok said:

    Good News Rocky ! Mom met
    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

    Excellent news!
    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
  • skip10
    skip10 Member Posts: 6
    westie66 said:

    Gallbladder Cancer
    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

    2nd opinion
    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
  • lirok
    lirok Member Posts: 49
    westie66 said:

    Excellent news!
    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

    Excellent news !
    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
    bjs Member Posts: 23
    lirok said:

    Gallbladder Cancer
    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

    Great news
    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
    lirok Member Posts: 49
    bjs said:

    Great news
    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

    Great News
    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
  • hillaryjoRN
    hillaryjoRN Member Posts: 32
    skip10 said:

    2nd opinion
    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

    I was reading moms
    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