Gallbladder Cancer - 2011
Comments
-
Debbie,LucyDoodle said:Chemo question and a bit more......
Steve has just started his 10th cycle of gemzar and cisplatin; our local oncologist is convinced that the cancer will shortly find a way around this chemo and I wondered what other regimes people tried.
As well as our local oncologist we see a wonderful doctor at Johns Hopkins who though realistic at least seems ready to do battle with the cancer! Our local oncologist does not give me the same impression, it's more like she has read the statistics and Steve is one of them (the dreaded 6 to 9 months numbers). I think more than anything it is a lack of empathy, I am sure she does care but it can be a real downer having a conversation with her! Has any one experienced this and if so how do you deal with it.
Sorry to ramble
Debbie
There are others who
Debbie,
There are others who can better answer your questions about various treatments. I know that they were talking about giving my mom gemzar and oxilaplatin - which several other here have had. I know that that is what the doc is keeping in his back pocket if it is needed in the future.
What I can address is the downer docs. When my mom was diagnosed last April, the doc told us 6 months. The next appointment (where we discussed the liver resection), the doc started going over statistics and my mom stopped him. She told him she appreciated all of the numbers he was reporting - but that was someone else, not her. She told him plainly that she was a person, not a statistic.
I began referring to us as “Team (last name)”. I’d tell him that I was so glad he was part of “Team (ln)”.
Mom had her liver resection and the doc went after a "questionable" lymph node next to her vena cava. He got it - and I believe that part of that was because he was looking at Mom as a person - and us as a family. We were blessed, and all of the pathology reports came back clear. He was amazed - and became Mom's biggest champion! That’s when I began thanking him for being part of our miracle.
On to the oncologist. Statistics, statistics, statistics. The oncologist started into the numbers - Mom, Dad, and I stopped him immediately. He is a great doc but is definitely a glass 1/2 empty type of guy. I told him from the get-go that he was part of Team (ln) and that we fully intended to win this battle. He still has a tendency to want to look at numbers, so I never go in there that I don't have a story about folks on these boards. He can give me a number and I'll give him many living, breathing human beings. Still, it is frustrating, and quite honestly frightening sometimes.
Radiation oncologist...from day one, he has been absolutely positive. At the end of our first appt, I thanked him for not pulling out stats. He said that that was “old news and other people”. It has never been a question with him. His glass has been 1/2 full from the start.
Keep in mind that you and your family are a team and make sure the docs know it. The docs are part of that team, make them invested in the outcome. And, be sure to thank them for their role on your team.
I wish you and your husband all the best.
Charmi0 -
Thank you CharmiMonarch said:Debbie,
There are others who
Debbie,
There are others who can better answer your questions about various treatments. I know that they were talking about giving my mom gemzar and oxilaplatin - which several other here have had. I know that that is what the doc is keeping in his back pocket if it is needed in the future.
What I can address is the downer docs. When my mom was diagnosed last April, the doc told us 6 months. The next appointment (where we discussed the liver resection), the doc started going over statistics and my mom stopped him. She told him she appreciated all of the numbers he was reporting - but that was someone else, not her. She told him plainly that she was a person, not a statistic.
I began referring to us as “Team (last name)”. I’d tell him that I was so glad he was part of “Team (ln)”.
Mom had her liver resection and the doc went after a "questionable" lymph node next to her vena cava. He got it - and I believe that part of that was because he was looking at Mom as a person - and us as a family. We were blessed, and all of the pathology reports came back clear. He was amazed - and became Mom's biggest champion! That’s when I began thanking him for being part of our miracle.
On to the oncologist. Statistics, statistics, statistics. The oncologist started into the numbers - Mom, Dad, and I stopped him immediately. He is a great doc but is definitely a glass 1/2 empty type of guy. I told him from the get-go that he was part of Team (ln) and that we fully intended to win this battle. He still has a tendency to want to look at numbers, so I never go in there that I don't have a story about folks on these boards. He can give me a number and I'll give him many living, breathing human beings. Still, it is frustrating, and quite honestly frightening sometimes.
Radiation oncologist...from day one, he has been absolutely positive. At the end of our first appt, I thanked him for not pulling out stats. He said that that was “old news and other people”. It has never been a question with him. His glass has been 1/2 full from the start.
Keep in mind that you and your family are a team and make sure the docs know it. The docs are part of that team, make them invested in the outcome. And, be sure to thank them for their role on your team.
I wish you and your husband all the best.
Charmi
Thank you for the positive reply, I am going to try and be more positive with her and stop her like your Mum did when she starts on numbers. It has got to the point where I dread having to talk to her because she makes the pair of us feel so down! I will try the new approach like you suggest, if nothing else it will make us feel better even if I can't change her thinking!
Debbie0 -
Good News!Monarch said:Update
Wanted to give you a quick update...and an excellent one.
Mom had her second post-chemo CT scan. It came back clear. No recurrence. Her CA 19-9 is 20. They've decided to not do any more chemo at this time. The doc had been advocating a round of Gem/Ox but has agreed that we should hold off on that. The hope is that Mom will never had to have it - but if she does, she will. Next scan scheduled for April.
Mom's port has stopped working. So, on 2/2, they will remove it. There was discussion about replacing it but again, since there are no current chemo plans, they decided to hold off on a new port, too.
We have been blessed.
My family continues to pray for everyone on this board, all of your families, and for your medical teams as well.
Charmi
Hi Charmi,
What wonderful news to hear of her success! I'm so happy for you and your Mom! Big sigh of relief for you both. I bet she will be real happy to have the port taken out.
We are all blessed to have found each other to make this journey a little easier.
Daily prayers are going out for everyone.
Take Care
Lily0 -
Deb's QuestionLucyDoodle said:Chemo question and a bit more......
Steve has just started his 10th cycle of gemzar and cisplatin; our local oncologist is convinced that the cancer will shortly find a way around this chemo and I wondered what other regimes people tried.
As well as our local oncologist we see a wonderful doctor at Johns Hopkins who though realistic at least seems ready to do battle with the cancer! Our local oncologist does not give me the same impression, it's more like she has read the statistics and Steve is one of them (the dreaded 6 to 9 months numbers). I think more than anything it is a lack of empathy, I am sure she does care but it can be a real downer having a conversation with her! Has any one experienced this and if so how do you deal with it.
Sorry to ramble
Debbie
Hi Deb,
Your oncologist has done part of her job to stabilize the tumors, but shrinkage is what is needed. Many oncologists who have never treated a patient for GB Cancer tend to be conservative instead of aggressive. If you and Steve are willing to go to the edge, she should be willing to go there with you. If not, you might have to find an oncologist that will be willing to roll the dice with you. Maybe the doctor at John Hopkins will have a suggestion for you. Ask him.
I feel that oncologists do get jaded as they don't always have success and therefore fall back into the statistics. It makes it easier for them. My chemo cocktail after a time wasn't doing much for me and my oncologist stated that we needed to find a surgeon that could be the artful hands for this disease since oncology is the science and we needed to move on. You need to find a good hepatobiliary surgeon that has experience with this type of cancer and may be willing to help you. You have to be your own advocate with doctors and never ever let them take away your hope. If you are willing to fight then the doctor's are more receptive to fighting with you. As Charmi stated, you have to become a team in order to beat this nasty disease. The doctor's will become vested in Steve's success if you make them a part of your team.
Stay positive.
Take Care
Lily0 -
Great News CharmiMonarch said:Update
Wanted to give you a quick update...and an excellent one.
Mom had her second post-chemo CT scan. It came back clear. No recurrence. Her CA 19-9 is 20. They've decided to not do any more chemo at this time. The doc had been advocating a round of Gem/Ox but has agreed that we should hold off on that. The hope is that Mom will never had to have it - but if she does, she will. Next scan scheduled for April.
Mom's port has stopped working. So, on 2/2, they will remove it. There was discussion about replacing it but again, since there are no current chemo plans, they decided to hold off on a new port, too.
We have been blessed.
My family continues to pray for everyone on this board, all of your families, and for your medical teams as well.
Charmi
That is some FANTASTIC news right there. You couldn't ask for more. As for me, I had my appt yesterday to review the scans. The bone scan came back fine. They said I have some arthritis and found some trauma from an old injury. As for the PET scan, I still have some very small residual cells in the stomach and chest area (lymph nodes). There are no new growths. All of my major organs are clear. We are going to go ahead with some additional chemo to try and clear things up. I am having a port installed Tuesday and then start immediately on oxiaplatin and 5FU for the next 2-3 months. I will have the 5FU pump so I will wear it for 48 hrs. They trained my wife on how to disconnect so I won't have to make another trip to the city. As the doctor said, it is very small and we need to continue to manage it. My 19-9 went from 116-114 so that was somewhat better news.
I fully expected the additional chemo. The doc also said we have "tons" of options so we shouldn't worry or panic. We will manage it. I gotta say, I have one of the best oncologists around. I am doing some reading on the side affects of these new drugs. All in all, I am very upbeat. Its just a small bump in the road.
Hope everyone is feeling well.
Rocky0 -
Chemo Regimelirok said:Great News Charmi
That is some FANTASTIC news right there. You couldn't ask for more. As for me, I had my appt yesterday to review the scans. The bone scan came back fine. They said I have some arthritis and found some trauma from an old injury. As for the PET scan, I still have some very small residual cells in the stomach and chest area (lymph nodes). There are no new growths. All of my major organs are clear. We are going to go ahead with some additional chemo to try and clear things up. I am having a port installed Tuesday and then start immediately on oxiaplatin and 5FU for the next 2-3 months. I will have the 5FU pump so I will wear it for 48 hrs. They trained my wife on how to disconnect so I won't have to make another trip to the city. As the doctor said, it is very small and we need to continue to manage it. My 19-9 went from 116-114 so that was somewhat better news.
I fully expected the additional chemo. The doc also said we have "tons" of options so we shouldn't worry or panic. We will manage it. I gotta say, I have one of the best oncologists around. I am doing some reading on the side affects of these new drugs. All in all, I am very upbeat. Its just a small bump in the road.
Hope everyone is feeling well.
Rocky
Hi Rocky: I too have gallbladder cancer stage 4 with spread to the peritoneum. My gallbladder, its tumour, and part of my liver were removed April 2010. We are now working on the peritoneum nodules (6 in total so far). I started with cisplatin/gemcitibine (12 treatments) and as that didn't do much for the peritoneum nodules I did a further 12 treatments of oxaliplatin + irenotecan + 5FU pump. A tougher regime but no major problems. We are now waiting to see what is next after scans I had a week ago. A PET scan is in the offing and maybe surgery.
Hope all goes well for you. If you need info on how to control oxaliplatin's often nasty side effects, let me know. I had bad reactions at the first treatment, took adv antage of advice on this website, took various supplements, and only had a problem with diarrhea after that.
Cheryl0 -
Rocky's additional chemolirok said:Great News Charmi
That is some FANTASTIC news right there. You couldn't ask for more. As for me, I had my appt yesterday to review the scans. The bone scan came back fine. They said I have some arthritis and found some trauma from an old injury. As for the PET scan, I still have some very small residual cells in the stomach and chest area (lymph nodes). There are no new growths. All of my major organs are clear. We are going to go ahead with some additional chemo to try and clear things up. I am having a port installed Tuesday and then start immediately on oxiaplatin and 5FU for the next 2-3 months. I will have the 5FU pump so I will wear it for 48 hrs. They trained my wife on how to disconnect so I won't have to make another trip to the city. As the doctor said, it is very small and we need to continue to manage it. My 19-9 went from 116-114 so that was somewhat better news.
I fully expected the additional chemo. The doc also said we have "tons" of options so we shouldn't worry or panic. We will manage it. I gotta say, I have one of the best oncologists around. I am doing some reading on the side affects of these new drugs. All in all, I am very upbeat. Its just a small bump in the road.
Hope everyone is feeling well.
Rocky
Hi Rocky,
Great news on the bone scan. I think that arthritis just comes with getting older. I too have osteoarthritis in my back, which is giving me fits this week.
Having additional chemo to get rid of any of those little nasties isn't news to most of us. You will be able to go through this next course of treatment easier since you are becoming a seasoned chemo veteran. Cheryl (Westie) is the best person to talk to about how she managed the side effects since she just completed her treatment with oxiaplatin. It is still fresh in her mind.
Small bumps in the road are better than huge friggin hills!
Take Care
Lily0 -
Good news for you too, Rocky!lirok said:Great News Charmi
That is some FANTASTIC news right there. You couldn't ask for more. As for me, I had my appt yesterday to review the scans. The bone scan came back fine. They said I have some arthritis and found some trauma from an old injury. As for the PET scan, I still have some very small residual cells in the stomach and chest area (lymph nodes). There are no new growths. All of my major organs are clear. We are going to go ahead with some additional chemo to try and clear things up. I am having a port installed Tuesday and then start immediately on oxiaplatin and 5FU for the next 2-3 months. I will have the 5FU pump so I will wear it for 48 hrs. They trained my wife on how to disconnect so I won't have to make another trip to the city. As the doctor said, it is very small and we need to continue to manage it. My 19-9 went from 116-114 so that was somewhat better news.
I fully expected the additional chemo. The doc also said we have "tons" of options so we shouldn't worry or panic. We will manage it. I gotta say, I have one of the best oncologists around. I am doing some reading on the side affects of these new drugs. All in all, I am very upbeat. Its just a small bump in the road.
Hope everyone is feeling well.
Rocky
I'm so glad that the bone scan came back clear. Mom and I were talking about that today. Her legs are so sore and get so stiff very quickly. She said that she thinks part of the problem is that she's been so inactive post-surgery, during chemo, etc that her legs are just protesting. LOL The problem is, when you've had something like cancer, everything scares you at first. (I was the same way after I had a prescription medicine induced stroke a few years ago...any new pain or odd feeling could send me into a frightened tizzy.)
You PET scan results are excellent, too! No new growths. Major organs clear. And a falling 19-9! That is just awesome! I hate that you're going to have to have more chemo but if that's what it takes, then full speed ahead!
Your doc sounds fabulous. I like his attitude. And YOURS!
Mom, Dad, and I are right there with you, Rocky. You and your family are in our prayers every night.
Best wishes to everyone!
Charmi0 -
Had to Share This With EveryoneMonarch said:Good news for you too, Rocky!
I'm so glad that the bone scan came back clear. Mom and I were talking about that today. Her legs are so sore and get so stiff very quickly. She said that she thinks part of the problem is that she's been so inactive post-surgery, during chemo, etc that her legs are just protesting. LOL The problem is, when you've had something like cancer, everything scares you at first. (I was the same way after I had a prescription medicine induced stroke a few years ago...any new pain or odd feeling could send me into a frightened tizzy.)
You PET scan results are excellent, too! No new growths. Major organs clear. And a falling 19-9! That is just awesome! I hate that you're going to have to have more chemo but if that's what it takes, then full speed ahead!
Your doc sounds fabulous. I like his attitude. And YOURS!
Mom, Dad, and I are right there with you, Rocky. You and your family are in our prayers every night.
Best wishes to everyone!
Charmi
http://www.nypost.com/p/news/local/manhattan/answered_prayers_1v9yTzsFIQrscpOQruavrM
Had to share this with everyone. I am so proud of my son. You won't believe it.
Rocky0 -
Good news is greatMonarch said:Good news for you too, Rocky!
I'm so glad that the bone scan came back clear. Mom and I were talking about that today. Her legs are so sore and get so stiff very quickly. She said that she thinks part of the problem is that she's been so inactive post-surgery, during chemo, etc that her legs are just protesting. LOL The problem is, when you've had something like cancer, everything scares you at first. (I was the same way after I had a prescription medicine induced stroke a few years ago...any new pain or odd feeling could send me into a frightened tizzy.)
You PET scan results are excellent, too! No new growths. Major organs clear. And a falling 19-9! That is just awesome! I hate that you're going to have to have more chemo but if that's what it takes, then full speed ahead!
Your doc sounds fabulous. I like his attitude. And YOURS!
Mom, Dad, and I are right there with you, Rocky. You and your family are in our prayers every night.
Best wishes to everyone!
Charmi
Hello All,
I have not posted for a while, mainly because I cannot figure out how to post unless it is a "reply." I am obviously not very computer literate.
I was diagnosed at the beginnning of March, 2011. I had my gallbladder removed but the surgeon could not remove the cancer that had spread to my bile duct. I had a stent installed to allow my bile to drain properly and had several replacements of the plastic stent last year. Last September, a metal stent was installed and it has only blocked once a month ago. My doctors and I are going to establish a regular schedule to do ERCPs to clean it and prevent the blockages and resulting liver infections.
My cancer has not changed since my diagnosis. My oncologist thinks that at least some of it may be dead. Additionally, my CA 19-9 tests have been well within normal limits for many months. I also feel much better than I did a year ago even with my intense chemo. My oncologist says that it is incredible that I am doing so well. He hopes that we can continue to treat this as a chronic disease for a long time. I still hope for eventual shrinkage to permit surgery.
I have had some chemo related problems. I take oral Xeloda for 14 days with an infusion of Gemzar on day 1 and day 8. I have chronic anemia from the chemo and have a Neulasta shot every cycle and need occasional transfusions. But I have no digestive problems, my appitite is great and I feel well most of the time. I think that I am extremely lucky and fortunate to have such a great oncologist with experience treating this disease.
Here is a summary of my cancer treatment so far:
Six weeks of radiation and Xeloda from April through May last year. I believe that the radiation was very beneficial to me.
One month off to recover then I commenced my present reigimen of two weeks on Gemzar and Xeloda followed by one week off. I started that last June and it will continue as long as it continues to work. I will try other chemo if my cancer grows again.
I live in the Seattle area and go to Swedish Cancer Institute. Everyone is very positive in dealing with me and my husband although also realistic that I have a very serious cancer, as all of you know.
If anyone has a stent and has questions about how to cope with it, I am happy to share my experiences. I often read everyone's comments and get so much positive energy. when I was initially diagnosed, i received the same grim statistics that many of you have shared. But I always believed that I could overcome this, at least for a long time.
I wish everyone well and thnak you for sharing your experiences.
Betty0 -
Rocky's proud momentlirok said:Had to Share This With Everyone
http://www.nypost.com/p/news/local/manhattan/answered_prayers_1v9yTzsFIQrscpOQruavrM
Had to share this with everyone. I am so proud of my son. You won't believe it.
Rocky
Hi Rocky,
What a great story. I'm a little late in reading it but you have every right to be so proud of your young son. He will become a good man just like his Dad!
Hope you are doing well!
Take Care
Lily0 -
Good Newsbjs said:Good news is great
Hello All,
I have not posted for a while, mainly because I cannot figure out how to post unless it is a "reply." I am obviously not very computer literate.
I was diagnosed at the beginnning of March, 2011. I had my gallbladder removed but the surgeon could not remove the cancer that had spread to my bile duct. I had a stent installed to allow my bile to drain properly and had several replacements of the plastic stent last year. Last September, a metal stent was installed and it has only blocked once a month ago. My doctors and I are going to establish a regular schedule to do ERCPs to clean it and prevent the blockages and resulting liver infections.
My cancer has not changed since my diagnosis. My oncologist thinks that at least some of it may be dead. Additionally, my CA 19-9 tests have been well within normal limits for many months. I also feel much better than I did a year ago even with my intense chemo. My oncologist says that it is incredible that I am doing so well. He hopes that we can continue to treat this as a chronic disease for a long time. I still hope for eventual shrinkage to permit surgery.
I have had some chemo related problems. I take oral Xeloda for 14 days with an infusion of Gemzar on day 1 and day 8. I have chronic anemia from the chemo and have a Neulasta shot every cycle and need occasional transfusions. But I have no digestive problems, my appitite is great and I feel well most of the time. I think that I am extremely lucky and fortunate to have such a great oncologist with experience treating this disease.
Here is a summary of my cancer treatment so far:
Six weeks of radiation and Xeloda from April through May last year. I believe that the radiation was very beneficial to me.
One month off to recover then I commenced my present reigimen of two weeks on Gemzar and Xeloda followed by one week off. I started that last June and it will continue as long as it continues to work. I will try other chemo if my cancer grows again.
I live in the Seattle area and go to Swedish Cancer Institute. Everyone is very positive in dealing with me and my husband although also realistic that I have a very serious cancer, as all of you know.
If anyone has a stent and has questions about how to cope with it, I am happy to share my experiences. I often read everyone's comments and get so much positive energy. when I was initially diagnosed, i received the same grim statistics that many of you have shared. But I always believed that I could overcome this, at least for a long time.
I wish everyone well and thnak you for sharing your experiences.
Betty
Hi Betty,
Welcome back! I'm so glad that you are doing so well. You are another testament to how far you can come with a positive attitude. You are an inspiration to all of us.
There is a new discussion thread that I started this year Gallbladder Cancer 2012 (Any Stages) since this one is so very long. Check it out if you haven't.
Take Care
Lily0 -
Good NewsLily50 said:Good News
Hi Betty,
Welcome back! I'm so glad that you are doing so well. You are another testament to how far you can come with a positive attitude. You are an inspiration to all of us.
There is a new discussion thread that I started this year Gallbladder Cancer 2012 (Any Stages) since this one is so very long. Check it out if you haven't.
Take Care
Lily
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,
Rocky0 -
Help!lirok said:Good News
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
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.
Donna0 -
Help!lirok said:Good News
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
BTW, Mom is being treated at Shands Hospital, University of Florida. Does anyone have any experience with that facility?
Donna0
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