Gallbladder Cancer - 2012 (Any Stage)

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Comments

  • Lily50
    Lily50 Member Posts: 209
    lirok said:

    Great Daughters
    Gotta agree here. You two are fantastic. It will go a long way to the success of your mothers treatments. I am lucky to have the most wonderful wife in all the world. She is there for me with everything. She has done things for me that I would never imagine anyone doing. I admire what you both are doing.

    As for me, I sit here tonight with my NEW port installed. I had my first treatment today and currently am connected to the 48 hour pump. Right now I feel terrific. No problems whatsoever. The incision for the port hurts a bit but thats it. We go back to Sloane on Friday to have them show us how to disconnect and flush so that we can do it at home and avoid the extra trip to the hospital.

    Best wishes to all of you and GOOD HEALTH to all of us.

    Rocky

    Rocky's Wife
    You are a very lucky man to have such love for your wife.
    I'm a very lucky woman to have such love from my husband. There were many times when I thought I might not make it but he helped me through. I'm sure you feel the same way.

    Glad that the first treatment went well and almost everyone states that the port incision hurts at first but that will soon go away. I never had a port for some warped reason in my own mind (sense of permanency). What a mistake that was for me, I took it directly into my veins and they soon became trash. Towards the end we were going to start in between my toes like addicts do. Thank goodness it never got that far. I would recommend a port to anyone facing chemo.

    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209
    Cynth89 said:

    Being There
    Hi Lily,

    It is wonderful that you have got through this disease and that you have been able to see your daughter grow up.
    This board has been such an inspiration to me.

    Yes Mum is a very independent person so we will see how she reacts to treatment but I am going to go ther and cook up meals for her so that she doesn't have to worry about anything like that.

    I will definately mix things up and still do things with her so that she still feels like she is able to do things,even if it is just getting something to eat and watching a movie at home:)

    Thanks again for all your information and helping me out,you are a wonderful person!

    Cynthia

    Cynthia's Mum
    Hi Cynthia,

    Yes it is wonderful. I was in the midst of treatment when she graduated from High School which was quite emotional. This December she graduated from the University and that was really emotional as I never knew if I would still be here to see it. Now the goal is to see her get married. Grandkids can wait awhile. It is always good to have goals!

    That is really great that you are going to cook for her. You are making sure that she won't have to deal with it. Just make sure that you do smaller portions for her, otherwise she might feel that she is being wasteful. If she wants more than it is already in another container for her. My husband lost weight right along with me as he really can't cook. He tried but he could really only cook a couple of things. The one thing he was good at (spaghetti) became a staple. After I got better and was cooking again I don't think we had spaghetti for about a year. LOL

    You are very welcome and we are all here to help each other on this journey.

    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209
    northa914 said:

    Lost Postings
    Just wanted to let you know I've had the same trouble with posts, and I figured out a solution. I write what I want to say in a Word document, then cut and paste it in the comment section of my reply. That way if it ends up not posting, I still have a copy of it and can cut and paste until it finally works. Hope this helps! :)

    Lost Postings Idea
    What a great idea!
    Sometimes the best ideas are the simple ones.
    I tried it and not only is it easier, but you can check for spelling mistakes!
    Thanks for sharing!

    Lily
  • Lily50
    Lily50 Member Posts: 209
    northa914 said:

    Lost Postings
    Just wanted to let you know I've had the same trouble with posts, and I figured out a solution. I write what I want to say in a Word document, then cut and paste it in the comment section of my reply. That way if it ends up not posting, I still have a copy of it and can cut and paste until it finally works. Hope this helps! :)

    Duplicate

    Duplicate
  • Lily50
    Lily50 Member Posts: 209

    It's good to hear....
    Hi All
    It's good to hear all the positive news being posted.
    Steve also had a port put in this week as it was getting difficult to get the IV access.
    He has had a bit of numbness in his toes and little fingers this week, I will remind him to ask the Oncologist about L Glutamine when he sees her as it sounds like that might help.
    Maudsie thanks for all the information you posted about your chemo, it helps to know what others have experienced.
    Just out of interest has any one had molecular profiling done?
    Ok last question, can someone tell me how to do a new post.......I only seemed to have worked out how to reply!! My 16 year old will roll his eyes if I ask him :)
    Debbie

    Steve's Numbness
    Hi Debbie,

    Good to hear from you and thanks for updating us. The port is just a good thing.
    L-Glutamine worked wonders for me. I highly recommend it. I took 1500 mg of L-Glutamin twice daily every day and still do. I found capsules at GNC(180) for $19.99
    I didn't have molecular profiling done.
    To post a new thread:
    Under Rare & Other Cancers
    Right before the Topic caption there is a small blue button
    . Post new discussion topic
    Select that and post.
    I know how you feel about looking at those rolling eyes, my 23 yr old did it to me this morning about a question regarding my cell phone.

    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209
    Cynth89 said:

    Latest News
    Hello,

    Yesterday Mum had her appointment with the specialist and he gave us some very bad news. He said it had spread to her liver,stomach and ovaries and is stage IV. I asked about if chemo can shrink it enough what about surgery at a later date and he said that wasn't possible because it has spread to distant parts of the body like the ovaries. He said that they would have to remove so many organs because the cancer has ''shed and just attached itself everywhere''.

    We have an appointment with the oncologist for chemo on wednesday and an appointment with the oncologist for radiation on friday. They are looking to do radiation on her belly button and chemo on the gallbladder but they said they weren't going to target the ovaries.
    If anyone has any information on different types of chemo and radiation and can give me an input into whethe you think they should also be doing something with the ovaries please let me know. They gave me a very short time frame for her yesterday and I can't imagine her not here.

    Thanks,
    Cynthia

    Cynthia's Mum
    Hi Cynthia,

    Okay so yesterday was a rough day, I so sorry but those types of days are a given when you are fighting this terrible disease. You can't let what one specialist tells you determine the course of action that you need to do. There are other specialists out there who might have a different opinion. You need to break down things into more manageable pieces. I was in stage IV and it had spread to my liver and stomach too but not my ovaries. Maybe with chemo and radiation you will have enough success for surgery later. You have to have Hope & Faith and don't let any doctor take that away from you.

    My original timeframe that I was given was 2 weeks, 2 months and at the longest 2 years. They aren't always right!

    I'm praying for you and your Mum.
    Take Care
    Lily
  • westie66
    westie66 Member Posts: 642
    Lily50 said:

    Cynthia's Mum
    Hi Cynthia,

    Okay so yesterday was a rough day, I so sorry but those types of days are a given when you are fighting this terrible disease. You can't let what one specialist tells you determine the course of action that you need to do. There are other specialists out there who might have a different opinion. You need to break down things into more manageable pieces. I was in stage IV and it had spread to my liver and stomach too but not my ovaries. Maybe with chemo and radiation you will have enough success for surgery later. You have to have Hope & Faith and don't let any doctor take that away from you.

    My original timeframe that I was given was 2 weeks, 2 months and at the longest 2 years. They aren't always right!

    I'm praying for you and your Mum.
    Take Care
    Lily

    More Cynthia's Mum
    Hi: I agree with Lily - she has mentored me for awhile. I was told the same thing yesterday in fact. I started out with Stage IV gallbladder cancer which spread to the liver so they cut out the gallbladder, the tumour, and part of the liver. Then it spread to the peritoneum and they gave me chemo (oxaliplatin + irenotecan + 5FU pump) for that, and then the latest scan said there is a small tumour on the liver. So when I said, but surely that can just be cut out right? they said, well, no, when it spreads then surgery would not be done. Huh? I said. I'm not about to give up because of a no. Unfortunately here in Canada we just can't go from one doctor to another and we don't have much private medical stuff. But, I'll not accept that! Nor should your mom.
    Cheryl
  • Monarch
    Monarch Member Posts: 36
    Cynth89 said:

    Latest News
    Hello,

    Yesterday Mum had her appointment with the specialist and he gave us some very bad news. He said it had spread to her liver,stomach and ovaries and is stage IV. I asked about if chemo can shrink it enough what about surgery at a later date and he said that wasn't possible because it has spread to distant parts of the body like the ovaries. He said that they would have to remove so many organs because the cancer has ''shed and just attached itself everywhere''.

    We have an appointment with the oncologist for chemo on wednesday and an appointment with the oncologist for radiation on friday. They are looking to do radiation on her belly button and chemo on the gallbladder but they said they weren't going to target the ovaries.
    If anyone has any information on different types of chemo and radiation and can give me an input into whethe you think they should also be doing something with the ovaries please let me know. They gave me a very short time frame for her yesterday and I can't imagine her not here.

    Thanks,
    Cynthia

    The fight is on!
    Cynthia,

    You and your Mum has just gone through round one. I know it feels like you've been knocked down - but the fight doesn't end in round one.

    Have you read Lily's full story? If not, look up tenacity in the dictionary because I'm sure they've posted her story there! Find her full story, print it off, and make sure your Mum reads it.

    I know you feel like you've been punched in the gut, too. Take a deep breath. It's hard. Make a plan - and push. If you're offered an appt in a week, ask them to work you in the next day.

    I can't tell you how many times I forged through the day - and cried myself to sleep at night. There is a time for tears - make sure you use it! The gal I see for accupuncture told me that tears are good. Let them flow. Tears are water - water is the shui in feng shui. Use the energy of those tears to regain your strength and move forward stronger.

    My family's thoughts and prayers are with you. Keep us posted.

    Prayers and positive thoughts for everyone here.

    Charmi
  • Monarch
    Monarch Member Posts: 36
    westie66 said:

    More Cynthia's Mum
    Hi: I agree with Lily - she has mentored me for awhile. I was told the same thing yesterday in fact. I started out with Stage IV gallbladder cancer which spread to the liver so they cut out the gallbladder, the tumour, and part of the liver. Then it spread to the peritoneum and they gave me chemo (oxaliplatin + irenotecan + 5FU pump) for that, and then the latest scan said there is a small tumour on the liver. So when I said, but surely that can just be cut out right? they said, well, no, when it spreads then surgery would not be done. Huh? I said. I'm not about to give up because of a no. Unfortunately here in Canada we just can't go from one doctor to another and we don't have much private medical stuff. But, I'll not accept that! Nor should your mom.
    Cheryl

    A second breath
    Hi Cheryl,

    I'm glad you've got the fighting attitude! I hate to hear that something showed up on the scan. Your spirit has gotten you to where you are today and I know that you'll take that second breath and charge into this fight.

    You are right. Do NOT accept the doc's word. There are so many people here - including you - who have taught a thing of two to the docs. Time for yours to learn another lesson.

    Sending you positive thoughts and lots of prayers.

    Charmi
  • LucyDoodle
    LucyDoodle Member Posts: 23
    Monarch said:

    The fight is on!
    Cynthia,

    You and your Mum has just gone through round one. I know it feels like you've been knocked down - but the fight doesn't end in round one.

    Have you read Lily's full story? If not, look up tenacity in the dictionary because I'm sure they've posted her story there! Find her full story, print it off, and make sure your Mum reads it.

    I know you feel like you've been punched in the gut, too. Take a deep breath. It's hard. Make a plan - and push. If you're offered an appt in a week, ask them to work you in the next day.

    I can't tell you how many times I forged through the day - and cried myself to sleep at night. There is a time for tears - make sure you use it! The gal I see for accupuncture told me that tears are good. Let them flow. Tears are water - water is the shui in feng shui. Use the energy of those tears to regain your strength and move forward stronger.

    My family's thoughts and prayers are with you. Keep us posted.

    Prayers and positive thoughts for everyone here.

    Charmi

    The fight is on
    Cynthia,
    I am sorry you had bad news but like every one else says take a deep breath and start working on a plan.
    Steve was told he had anything from 3 months to 8 months to a year and that surgery wasn't possible! Well here we are 8 months later and he ran 8 miles with me today and felt great.
    We have good days and less good days, knowing he may need to change his chemo regime in the near future is scary because he has felt so well on his current regime. Like Charmi says there are some days that you have no idea how you get through but you do (I have also found the shower is a very good place to have a cry!).
    I understand that all of this seems so scary and maybe even hopeless but take heart from all the wonderful people on this board and their stories which show so much determination and courage. It has helped me so much.
    If chemotherapy is going to be a large part of Mums treatment it might be worth asking her oncologist about molecular profiling. Whilst they will undoubtedly start Mum on the standard treatments it is thought to be useful if and when they need to change regimes. Steve had it done and it has given our oncologist at Johns Hopkins some useful information.
    I am thinking of you and your Mum.
    Debbie
  • LucyDoodle
    LucyDoodle Member Posts: 23

    The fight is on
    Cynthia,
    I am sorry you had bad news but like every one else says take a deep breath and start working on a plan.
    Steve was told he had anything from 3 months to 8 months to a year and that surgery wasn't possible! Well here we are 8 months later and he ran 8 miles with me today and felt great.
    We have good days and less good days, knowing he may need to change his chemo regime in the near future is scary because he has felt so well on his current regime. Like Charmi says there are some days that you have no idea how you get through but you do (I have also found the shower is a very good place to have a cry!).
    I understand that all of this seems so scary and maybe even hopeless but take heart from all the wonderful people on this board and their stories which show so much determination and courage. It has helped me so much.
    If chemotherapy is going to be a large part of Mums treatment it might be worth asking her oncologist about molecular profiling. Whilst they will undoubtedly start Mum on the standard treatments it is thought to be useful if and when they need to change regimes. Steve had it done and it has given our oncologist at Johns Hopkins some useful information.
    I am thinking of you and your Mum.
    Debbie

    Thanks for the information
    Hi Lily and Cheryl

    Thanks for the information on L Glutamine and B6. Steve has started taking it so hopefully it will help. He is also going to try the B6 as his oncologist mentioned that as well.

    Thank you both for helping me work out how to do a new post so that now I don't have to ask a teenager :)

    Cheryl, I am sorry your scan wasn't as good as you hoped but from your posts I know the fight goes on! Sending positive thoughts your way.

    Debbie
  • lirok
    lirok Member Posts: 49
    Lily50 said:

    Rocky's Wife
    You are a very lucky man to have such love for your wife.
    I'm a very lucky woman to have such love from my husband. There were many times when I thought I might not make it but he helped me through. I'm sure you feel the same way.

    Glad that the first treatment went well and almost everyone states that the port incision hurts at first but that will soon go away. I never had a port for some warped reason in my own mind (sense of permanency). What a mistake that was for me, I took it directly into my veins and they soon became trash. Towards the end we were going to start in between my toes like addicts do. Thank goodness it never got that far. I would recommend a port to anyone facing chemo.

    Take Care
    Lily

    Port and First Round of Oxaliplatin
    Lily, you are 100% correct about my wife. I have told her endless times that I would not be here today if it weren't for her. She wanted me to mention to everyone here on this board how inspiring all of these stories are. She has read through many of the posts and it has given her some additional hope and strength. Normally you tell people to avoid the internet in cases like this so that you don't work yourself into a frenzy of worry but we both cannot tell you how much help this particular forum has been for us. Its about knowing you are not alone and that there IS hope.

    I had my port installed Wed and went through my first treatment of oxaliplatin and the 5FU. The port incision is still quite tender. I have experienced alot of nausea (have not gotten sick) and I have slept since Friday as I am extremely tired. This is now my off week and I don't go back until next Tuesday. Having the port with the pump was so easy. They showed my wife how to disconnect so that I won't have to make an additional trip after it is finished.

    Well, glad to hear from everyone and keep your head up. Positive thinking is the key along with strong support which is in GREAT supply right here. From both me and my wife, we thank all of you for helping us.

    Rocky
  • Lily50
    Lily50 Member Posts: 209

    Thanks for the information
    Hi Lily and Cheryl

    Thanks for the information on L Glutamine and B6. Steve has started taking it so hopefully it will help. He is also going to try the B6 as his oncologist mentioned that as well.

    Thank you both for helping me work out how to do a new post so that now I don't have to ask a teenager :)

    Cheryl, I am sorry your scan wasn't as good as you hoped but from your posts I know the fight goes on! Sending positive thoughts your way.

    Debbie

    Information

    Hi Debbie,

    You are welcome!
    I’m so impressed that Steve ran 8 miles. Good for him! I’m glad that this chemo regime isn’t beating him up too much.
    The secret is now out; crying in the shower was something I did for quite awhile. It can be very therapeutic. It is such a release of many emotions that I always felt better afterwards and felt like I could keep going.

    Take Care
    Lily
  • westie66
    westie66 Member Posts: 642
    Lily50 said:

    Information

    Hi Debbie,

    You are welcome!
    I’m so impressed that Steve ran 8 miles. Good for him! I’m glad that this chemo regime isn’t beating him up too much.
    The secret is now out; crying in the shower was something I did for quite awhile. It can be very therapeutic. It is such a release of many emotions that I always felt better afterwards and felt like I could keep going.

    Take Care
    Lily

    Scan Results
    Hi all: If there is one thing I've now learned about having cancer - don't trust all of the scan results. I just went through about 15 scan reports (Cts and MRIs) and put the data on a spreadsheet. One spreadsheet is for the peritoneum cancer and the other spreadsheet is for the unidentified mass (or masses I should say) on the liver. Well, that was an eye opener! I noted so many inconsistencies and omissions. One radiologist even got the dates wrong in his/her comparison of one scan against past scans! The correct scan date was in 2010 but he/she used 2011 and that showed an increase in a mass when in fact there was a decrease! I presented one spreadsheet to my oncologist and he agreed with my analysis (as surprised he was at being presented with a spreadsheet!). Today I presented the liver scan information to my GP (who doesn't request the scans but should get copies - although she didn't!). We were horrified when we started going through them! The problem is - one needs a business manager, one person who oversees all of the others on your team and makes sure that all of the meaningful results are known to those that need to know! I have a science background so I can go through lots of numbers but even I didn't do that and it's my life. So, don't want to scare you all out there, but be very conscientious about going through your results completely (and there are likely lots of results to go through) and then make sure your doctors have done the same.
    I'll keep you posted on my test results on Thursday. I think that is what keeps me going - anger at the system!!!!! I think a lot of it is because gallbladder and peritoneum cancers are so rare - you'd think that would be exciting to a doctor!
    Cheryl
  • Cynth89
    Cynth89 Member Posts: 15
    Thank you all
    Hello All,
    Thanks so much for all of your support! We are going have a chemo appt tomorrow morning with the chemo oncologist about different types of treatments so I was wondering if anyone could give me any information of chemo treatment that thehy had and what the side effects were.

    i asked about if chemo shrinks the cancer enough surely surgery can be an option later on down the track but he said it's not because it has spread to the ovaries,if it had of stayed within the ballbladder,liver and stomach surgery may have been an option but because it has spread to distant parts of the body they can't operate.

    I am hopefull that with chemo and possibly radiation to the stomach it can shrink the cancer and keep it from spreading.

    Cheryl it is the same here in Australia, Mum is a public patient and we can't just go to different doctors and she doesn't have the money to go privately.I also aggree that you can't trust them. The cancer showed up in scans Mum had in March 2011 and it was never picked up until December 2011:(

    Thank you all and will keep you's posted

    Cynthia
  • Meg2003
    Meg2003 Member Posts: 13
    My dad was just diagnosed with gallbladder cancer
    Hello Lily,

    My dad is a colon cancer survivor (for over 20 yrs now) and was having digestive issues so he was scheduled to have his gallbladder removed yesterday. Once the surgeon got in there he found spots on my dad's liver and abdominal wall so they changes their plans and did a biopsy.

    Today we learned that it is in fact gallbladder cancer and it spread to his liver and rib cage and they say it's inoperable. He has not yet seen the oncologist, but will be doing so this week (we hope).

    I was on a colon cancer discussion forum and someone there referred me to you. Can you give me some guidance as to what my parents should be asking the oncologist? Does anyone know what cancer centers specialize in this? We are located in the midwest and actually just moved here from the CA and are unaware of hich Cancer Centers are the best.

    For a little background info; he had a liver panel done in November and all his levels were normal and a PET and CT Scan done a year ago which were clear.

    My dad is only 62 and we need to give him some hope so he'll fight. He has grandkids (6-infant) who need him around as to my mom and I.

    Thank you!
  • westie66
    westie66 Member Posts: 642
    Cynth89 said:

    Thank you all
    Hello All,
    Thanks so much for all of your support! We are going have a chemo appt tomorrow morning with the chemo oncologist about different types of treatments so I was wondering if anyone could give me any information of chemo treatment that thehy had and what the side effects were.

    i asked about if chemo shrinks the cancer enough surely surgery can be an option later on down the track but he said it's not because it has spread to the ovaries,if it had of stayed within the ballbladder,liver and stomach surgery may have been an option but because it has spread to distant parts of the body they can't operate.

    I am hopefull that with chemo and possibly radiation to the stomach it can shrink the cancer and keep it from spreading.

    Cheryl it is the same here in Australia, Mum is a public patient and we can't just go to different doctors and she doesn't have the money to go privately.I also aggree that you can't trust them. The cancer showed up in scans Mum had in March 2011 and it was never picked up until December 2011:(

    Thank you all and will keep you's posted

    Cynthia

    The System
    HI Cynthia: Much the same words I heard - once it spreads to other parts of the body ...! Then when you read posts on this website, you realize that many cancer patients do get more surgery for those distant bits. I guess some surgeons/oncologists are more aggressive than others. One woman on the colon cancer board has only had surgery (once a year) - no chemo and another one has had 18 surgeries no chemo. I'm missing something here and wonder if it is the difference between public and private plans. I know here in Canada they will send you to the States if a treatment isn't available here and you can get insurance for the Mayo Clinic but I wouldn't be eligible as I already have cancer. That would be difficult in Australia given your closest neighbours are Papua New Guinea and New Zealand and they are far off.
    It will be interesting what kind of chemo they use given the variety of organs. For ovarian cancer they usually use carboplatin and taxol but for gallbladder cancer they use cisplatin and gemcitibine and for stomach cancer - don't know maybe 5Fu pump.
    I guess in the end I'd still rather have socialized medicine - I also have a private plan from my university whereby even dental work is covered until I die. So, there are upsides and downsides.
    Please keep in touch on your mom.
    Cheryl
  • westie66
    westie66 Member Posts: 642
    Meg2003 said:

    My dad was just diagnosed with gallbladder cancer
    Hello Lily,

    My dad is a colon cancer survivor (for over 20 yrs now) and was having digestive issues so he was scheduled to have his gallbladder removed yesterday. Once the surgeon got in there he found spots on my dad's liver and abdominal wall so they changes their plans and did a biopsy.

    Today we learned that it is in fact gallbladder cancer and it spread to his liver and rib cage and they say it's inoperable. He has not yet seen the oncologist, but will be doing so this week (we hope).

    I was on a colon cancer discussion forum and someone there referred me to you. Can you give me some guidance as to what my parents should be asking the oncologist? Does anyone know what cancer centers specialize in this? We are located in the midwest and actually just moved here from the CA and are unaware of hich Cancer Centers are the best.

    For a little background info; he had a liver panel done in November and all his levels were normal and a PET and CT Scan done a year ago which were clear.

    My dad is only 62 and we need to give him some hope so he'll fight. He has grandkids (6-infant) who need him around as to my mom and I.

    Thank you!

    Gallbladder and liver cancer
    HI LIly and Meg: It was me, Lily, who recommended she talk to you on this discussion thread. I recommend an aggressive chemo treatment like you had, LIly, and perhaps check out the Mayo Clinic (is Minnesota in the mid-west? I'm a CAnadian so am hopeless!). A friend of mine with gallbladder cancer went there from CAnada and had wonderful aggressive treatment. But his cancer had not spread to the liver or rib cage. Mine may have spread to the liver, it certainly has spread to the peritoneum.
    Cheryl
  • Monarch
    Monarch Member Posts: 36
    Meg2003 said:

    My dad was just diagnosed with gallbladder cancer
    Hello Lily,

    My dad is a colon cancer survivor (for over 20 yrs now) and was having digestive issues so he was scheduled to have his gallbladder removed yesterday. Once the surgeon got in there he found spots on my dad's liver and abdominal wall so they changes their plans and did a biopsy.

    Today we learned that it is in fact gallbladder cancer and it spread to his liver and rib cage and they say it's inoperable. He has not yet seen the oncologist, but will be doing so this week (we hope).

    I was on a colon cancer discussion forum and someone there referred me to you. Can you give me some guidance as to what my parents should be asking the oncologist? Does anyone know what cancer centers specialize in this? We are located in the midwest and actually just moved here from the CA and are unaware of hich Cancer Centers are the best.

    For a little background info; he had a liver panel done in November and all his levels were normal and a PET and CT Scan done a year ago which were clear.

    My dad is only 62 and we need to give him some hope so he'll fight. He has grandkids (6-infant) who need him around as to my mom and I.

    Thank you!

    Sorry you're here...but glad you joined us
    Meg,

    I hate that you've had to find us but I am so glad you did! This is a wonderful community where hope and knowledge is shared like nowhere else.

    I was born and raised in the Chicago area. Mayo was always the go-to place for anything major.

    From my research, there are 3 major cancer centers who have more experience with gallbladder cancer than other places - Sloan-Kettering in New York. MD Anderson in Houston. And, Dana-Farber in Boston. Some of the folks on this board go to Sloan-Kettering.

    You dad is a fighter. He's proven that by being a 20-year survivor of colon cancer. All of you should take hope and strength from that!

    There are a couple other GBC threads here on the "rare cancers" board. Both of them started by Lily. Page down until you find them. There is a lot of info in those. Print some of the posts off for your dad to read. He will see that there is always hope...and miracles do happen.

    Best to you and your family. Please keep us updated...and ask any and all questions you have.

    Charmi
  • Monarch
    Monarch Member Posts: 36
    lirok said:

    Port and First Round of Oxaliplatin
    Lily, you are 100% correct about my wife. I have told her endless times that I would not be here today if it weren't for her. She wanted me to mention to everyone here on this board how inspiring all of these stories are. She has read through many of the posts and it has given her some additional hope and strength. Normally you tell people to avoid the internet in cases like this so that you don't work yourself into a frenzy of worry but we both cannot tell you how much help this particular forum has been for us. Its about knowing you are not alone and that there IS hope.

    I had my port installed Wed and went through my first treatment of oxaliplatin and the 5FU. The port incision is still quite tender. I have experienced alot of nausea (have not gotten sick) and I have slept since Friday as I am extremely tired. This is now my off week and I don't go back until next Tuesday. Having the port with the pump was so easy. They showed my wife how to disconnect so that I won't have to make an additional trip after it is finished.

    Well, glad to hear from everyone and keep your head up. Positive thinking is the key along with strong support which is in GREAT supply right here. From both me and my wife, we thank all of you for helping us.

    Rocky

    Thinking about you
    Hi Rocky,

    I've been thinking about you and hoping that you are doing well. Your port incision should be on its way to healing.

    Mom had her port removed today. The surgery went well. We are in the Lovanox bridge period. Her INR was perfect (meaning what they wanted it to be for the surgery - not where it needs to be at the therapuetic level) so the bleeding was minimal.

    Keeping you and your wife in our thoughts and prayers.

    Charmi