Gallbladder Cancer - 2012 (Any Stage)

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Lily50
Lily50 Member Posts: 209
in Rare and Other Cancers #1
Hi everybody!

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

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

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

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

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

Take Care
Lily
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Comments

  • westie66
    westie66 Member Posts: 642
    #7
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    Lily50 said:

    Your Welcome!
    Hi Charmi,

    Thanks for visiting the new thread!
    Take Care
    Lily

    Chemo Regime
    Hi: You will likely start with a regime of cisplatin + gemcitibine 2 wks on, 1 wk off. I had 12 treatments of this for gallbladder cancer stage IV but my tumour, gallbladder, and part of my liver were removed during surgery in 2010. Because the cancer had spread to the peritoneum (6 nodules), my chemo regime was changed to oxaliplatin + irenotecan + 5FU pump (42 hrs). This is a much tougher regime with more side effects but I completed 12 treatments with few problems after I learned what to do about the side effects. I have recently had several CT scans and am awaiting a PET scan to see if surgery is an option. The problem with gallbladder cancer is that it spreads, and often to the peritoneum. Tumours on the peritoneum don't react well to IV type chemo because it is not well connected to the blood system. So the usual treatment in the US is peritoneal stripping plus heated chemo directly into the abdominal cavity. In Canada, there is only one place that does this. Anyways, you want to keep on top of your surgery and treatment options.
    Good luck and keep us posted.
    Cheryl
  • lirok
    lirok Member Posts: 49
    #8
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    westie66 said:

    Chemo Regime
    Hi: You will likely start with a regime of cisplatin + gemcitibine 2 wks on, 1 wk off. I had 12 treatments of this for gallbladder cancer stage IV but my tumour, gallbladder, and part of my liver were removed during surgery in 2010. Because the cancer had spread to the peritoneum (6 nodules), my chemo regime was changed to oxaliplatin + irenotecan + 5FU pump (42 hrs). This is a much tougher regime with more side effects but I completed 12 treatments with few problems after I learned what to do about the side effects. I have recently had several CT scans and am awaiting a PET scan to see if surgery is an option. The problem with gallbladder cancer is that it spreads, and often to the peritoneum. Tumours on the peritoneum don't react well to IV type chemo because it is not well connected to the blood system. So the usual treatment in the US is peritoneal stripping plus heated chemo directly into the abdominal cavity. In Canada, there is only one place that does this. Anyways, you want to keep on top of your surgery and treatment options.
    Good luck and keep us posted.
    Cheryl

    Found the New Thread
    Thanks to all for their wishes on my recent results. Cheryl, yes, I want to know EVERYTHING about the oxaliplatin and 5 FU. I am having my mediport installed on Wed and go Wed afternoon for my 1st treatment. A little more chemo is small potatoes considering what we have all been through already.

    Say hi to your mother Charmi. Me and my wife were thrilled to hear her great results. She is proof that this illness in not a death sentence. You have to stay positive at all times and continue to fight.

    I'll post to this new thread from now on and pray that we won't need one for 2013 for any of us.

    Rocky
  • westie66
    westie66 Member Posts: 642
    #9
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    lirok said:

    Found the New Thread
    Thanks to all for their wishes on my recent results. Cheryl, yes, I want to know EVERYTHING about the oxaliplatin and 5 FU. I am having my mediport installed on Wed and go Wed afternoon for my 1st treatment. A little more chemo is small potatoes considering what we have all been through already.

    Say hi to your mother Charmi. Me and my wife were thrilled to hear her great results. She is proof that this illness in not a death sentence. You have to stay positive at all times and continue to fight.

    I'll post to this new thread from now on and pray that we won't need one for 2013 for any of us.

    Rocky

    Chemo Treatments
    Hi: Keep in mind the cisplatin/gemcitibine is the standard treatment for gallbladder cancer and my FOLFOXFIRI treatment was a follow-up for the peritoneum cancer nodules I have that seeded from the gallbladder tumour before it was removed. So it is likely they will start you on the regular cisplatin/gemcitibine chemo (I can't remember what stage you are and what had already been done as it is on the other "page"! sorry!). I had few side effects from that treatment just some constipation although I did end up in the hospital after the first treatment because it was too strong and it irritated my colon. The oncologist reduced the cisplatin and no more troubles after that. We get so many pills to treat nausea that that wasn't an issue. I had 12 treatments and felt good enough during them to drive myself to treatment. Because the MRIs showed peritoneum nodules (which had been tested during surgery and were malignant - why didn't they cut them out????), the oncologist tried something different - the oxaliplatin + irenotecan + 5FU pump (I have a PICC line for the pump) - and that did work in terms of stabilization and shrinkage. But it does have some nasty side effects like neuropathy (tingling in fingers and toes), cold intolerance (in terms of breathing and drinking), fatigue, diarrhea, sweating, first bite pain. For me, the oncologist reduced the amount of oxaliplatin and I took supplements to help with the neuropathy and cold intolerance - Vit B6, calcium/magnesium, L-Glutamine Fermented powder, alpha lipoid acid pills - and I had no problems with those two side effects after that. The diarrhea was a problem but nothing worked so I just let it go (so to speak). Ditto with the fatigue.
    Let us know how you make out!
    Cheryl
  • lirok
    lirok Member Posts: 49
    #10
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    westie66 said:

    Chemo Treatments
    Hi: Keep in mind the cisplatin/gemcitibine is the standard treatment for gallbladder cancer and my FOLFOXFIRI treatment was a follow-up for the peritoneum cancer nodules I have that seeded from the gallbladder tumour before it was removed. So it is likely they will start you on the regular cisplatin/gemcitibine chemo (I can't remember what stage you are and what had already been done as it is on the other "page"! sorry!). I had few side effects from that treatment just some constipation although I did end up in the hospital after the first treatment because it was too strong and it irritated my colon. The oncologist reduced the cisplatin and no more troubles after that. We get so many pills to treat nausea that that wasn't an issue. I had 12 treatments and felt good enough during them to drive myself to treatment. Because the MRIs showed peritoneum nodules (which had been tested during surgery and were malignant - why didn't they cut them out????), the oncologist tried something different - the oxaliplatin + irenotecan + 5FU pump (I have a PICC line for the pump) - and that did work in terms of stabilization and shrinkage. But it does have some nasty side effects like neuropathy (tingling in fingers and toes), cold intolerance (in terms of breathing and drinking), fatigue, diarrhea, sweating, first bite pain. For me, the oncologist reduced the amount of oxaliplatin and I took supplements to help with the neuropathy and cold intolerance - Vit B6, calcium/magnesium, L-Glutamine Fermented powder, alpha lipoid acid pills - and I had no problems with those two side effects after that. The diarrhea was a problem but nothing worked so I just let it go (so to speak). Ditto with the fatigue.
    Let us know how you make out!
    Cheryl

    Thanks Cheryl
    I had the Gemcitabine/Cisplatin last spring and summer followed by the radiation in the fall. They are trying the oxaliplatin 5FU to get rid of the small hot spots I have left. I was made aware of all the side affects you mentioned. They called today and my port will now go in on Wed afternoon and then I go back for my 1st round of chemo on Friday.

    Thanks,

    Rocky
  • maudsie
    maudsie Member Posts: 54
    #11
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    lirok said:

    Thanks Cheryl
    I had the Gemcitabine/Cisplatin last spring and summer followed by the radiation in the fall. They are trying the oxaliplatin 5FU to get rid of the small hot spots I have left. I was made aware of all the side affects you mentioned. They called today and my port will now go in on Wed afternoon and then I go back for my 1st round of chemo on Friday.

    Thanks,

    Rocky

    Hi Everyone!!!!!
    Greetings to Lily, Debbie, Cheryl, Rocky, Charmi, and everyone else here! And a special shout-out to Lily -- YAY Lily...great to see you back here, and terrific idea to post a new thread for 2012! You did that last year, too, and here we are a year later, still posting, still surviving.
    I am going on 4 years since my diagnosis, and doing great. I did loose a few dear people last year, but I rejoice in the continued success of many others. This board is full of wonderful people who are a great resource, I'm happy (well, you know what I mean) to be on this road with you all.

    love around, Maudsie
  • Monarch
    Monarch Member Posts: 36
    #12
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    MRI vs CT vs PET
    Hey gang,

    Question for you. I have seen that some of you are having MRI's. When do they change over from CT to MRI? I would assume there would be huge advantages to and MRI (like the idea of avoiding the extra radiation).

    Mom has had 2 post-treatment CT scans. She has not had another PET scan (the one pre-resection showed no hot spots but I know she will still have to have one at some point in the fairly near future). They have not even mentioned MRI's at this point but I would love for her to switch over to those.

    Any insight you can give me into the scan decisions/reasons would be GREATLY appreciated!

    Best to everyone!

    Charmi
  • westie66
    westie66 Member Posts: 642
    #13
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    Monarch said:

    MRI vs CT vs PET
    Hey gang,

    Question for you. I have seen that some of you are having MRI's. When do they change over from CT to MRI? I would assume there would be huge advantages to and MRI (like the idea of avoiding the extra radiation).

    Mom has had 2 post-treatment CT scans. She has not had another PET scan (the one pre-resection showed no hot spots but I know she will still have to have one at some point in the fairly near future). They have not even mentioned MRI's at this point but I would love for her to switch over to those.

    Any insight you can give me into the scan decisions/reasons would be GREATLY appreciated!

    Best to everyone!

    Charmi

    CTs vs MRIs
    Hi Charmi: I had mostly MRIs because my first scan for some reason was an MRI and that then was my base. MRIs don't use radiation and that is a good thing (PET scans use a lot of radiation - isn't it injected right into you?). But oncologists disagree about which scan type - CT or MRI - provides the best information on tumours. My little cancerous nodules on the peritoneum were for some reason more detectable using a CT scan although the nodules were also visible on MRIs once the radiologists knew they were there. I just had two CT scans after 12 treatments of oxaliplatin + irenotecan + 5FU so maybe my oncologist is more in favour of CTs now. For sure they are easier and quicker! But there is the radiation issue. There is also the cost issue. Many doctors won't recommend MRIs for simply financial reasons. Here in Ontario PET scans are rarely done but I'm in line for one soon. They are expensive and most hospitals don't have the machine.
    Awhile back I googled the internet for a comparison of the two, CT vs MRI, and found quite a lot of good information. In the end though I think it depends on what the oncologist is comfortable with and what the base is - the two scan types provide slightly different information.
    Cheryl
  • northa914
    northa914 Member Posts: 100
    #14
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    westie66 said:

    CTs vs MRIs
    Hi Charmi: I had mostly MRIs because my first scan for some reason was an MRI and that then was my base. MRIs don't use radiation and that is a good thing (PET scans use a lot of radiation - isn't it injected right into you?). But oncologists disagree about which scan type - CT or MRI - provides the best information on tumours. My little cancerous nodules on the peritoneum were for some reason more detectable using a CT scan although the nodules were also visible on MRIs once the radiologists knew they were there. I just had two CT scans after 12 treatments of oxaliplatin + irenotecan + 5FU so maybe my oncologist is more in favour of CTs now. For sure they are easier and quicker! But there is the radiation issue. There is also the cost issue. Many doctors won't recommend MRIs for simply financial reasons. Here in Ontario PET scans are rarely done but I'm in line for one soon. They are expensive and most hospitals don't have the machine.
    Awhile back I googled the internet for a comparison of the two, CT vs MRI, and found quite a lot of good information. In the end though I think it depends on what the oncologist is comfortable with and what the base is - the two scan types provide slightly different information.
    Cheryl

    Scans
    I recently broached the subject of PET scans with my surgical oncologist, asking why he used CT scans vs PET scans for my case. He said that PET scans are not reliable for certain types of cancer (mine is cholangiocarcinoma). He also has found the PET less reliable in general than the CT and MRI. I didn't ask why he used the CT as opposed to the MRI for me. He also tends to use the PET as little as possible due to the irradiated "stuff" that is used for it. He looks at all scans and tissue samples himself, and doesn't just rely on the radiologists' and pathologists' reports. Apparently some oncologists - particularly ones that are newer to the field - rely solely on reports and don't look at scans, slides, etc. During my second opinion, the oncologist admitted that he really didn't know how to interpret my scan and relied solely on the radiologist's report (and this was at a renowned facility in Southern California). Pretty scary when you read about people who were misdiagnosed as not having cancer only to find out they really did and it's now too late. And then there are people who are diagnosed as having cancer that are administered a chemo regime only to find out that they never had it. Good reasons for us to advocate for ourselves!
  • haugy
    haugy Member Posts: 11
    #15
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    northa914 said:

    Scans
    I recently broached the subject of PET scans with my surgical oncologist, asking why he used CT scans vs PET scans for my case. He said that PET scans are not reliable for certain types of cancer (mine is cholangiocarcinoma). He also has found the PET less reliable in general than the CT and MRI. I didn't ask why he used the CT as opposed to the MRI for me. He also tends to use the PET as little as possible due to the irradiated "stuff" that is used for it. He looks at all scans and tissue samples himself, and doesn't just rely on the radiologists' and pathologists' reports. Apparently some oncologists - particularly ones that are newer to the field - rely solely on reports and don't look at scans, slides, etc. During my second opinion, the oncologist admitted that he really didn't know how to interpret my scan and relied solely on the radiologist's report (and this was at a renowned facility in Southern California). Pretty scary when you read about people who were misdiagnosed as not having cancer only to find out they really did and it's now too late. And then there are people who are diagnosed as having cancer that are administered a chemo regime only to find out that they never had it. Good reasons for us to advocate for ourselves!

    scans
    In my case all i have had is ct scans. i asked my surgical oncologist and my chemo oncologist and they both responded saying that they felt a ct scan showed better definition for this type of tumour /cancer . i have also inquired about the amount of radiation from the ct scans and have been told they feel the benefits outweigh the risks.
  • Cynth89
    Cynth89 Member Posts: 15
    #16
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    New
    Hi my name is Cynthia
    My mum was diagnosed with gallbladder cancer about a month ago and it has spread to the stomach and ovaries. They say it is inoperable and are looking to do chemo on her ovaries and gallbladder and radiation on her stomach. Since reading all of your posts it has given me hope that maybe surgery can be done at a later date and that the outcome may not be so horrible. I am her only child and I love her so much so am willing to try anything that can help. She is already very small and only weighs about 42 kg and they haven't even started chemo yet so I am very worried about her losing more weight. I was wondering if anyone can tell me what chemo cocktails have worked for them and what haven't and the same for radiation. Also, as far as foods go what does she need to avoid now and what should she be eating?
  • Lily50
    Lily50 Member Posts: 209
    #17
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    Monarch said:

    MRI vs CT vs PET
    Hey gang,

    Question for you. I have seen that some of you are having MRI's. When do they change over from CT to MRI? I would assume there would be huge advantages to and MRI (like the idea of avoiding the extra radiation).

    Mom has had 2 post-treatment CT scans. She has not had another PET scan (the one pre-resection showed no hot spots but I know she will still have to have one at some point in the fairly near future). They have not even mentioned MRI's at this point but I would love for her to switch over to those.

    Any insight you can give me into the scan decisions/reasons would be GREATLY appreciated!

    Best to everyone!

    Charmi

    MRI vs CT vs PET
    Hi Charmi,

    I guess it just depends on what the doctor's want to use. I have had all three at some point in time. Started out with CT scans, surgeon didn't like them so had to have MRI scans, had surgery then got a PET scan. When the tech that was administrating the PET scan came in to give me the injection and he had full body armor and a metal box with tongs to remove it from the box I felt like I was in a science fiction movie. More chemo and CT scans every three months for 2 years, and then every 6 months, I’m hoping this year I will only have to have one (fingers crossed).

    Yes, I do glow in the dark (my daughter scratched her cornea and when I took her to the doctor and they used a black light to look at her eye there I was there next to her glowing). We all had a good laugh about that.

    Yes, I do set off those pesky sensor bars when I'm are walking out of a store, I have been stopped many a time to check my bags for stolen merchandise. In the beginning I would get angry, but now I just laugh about it and don't let it ruin my day.

    So the bottom line is whatever the doctor's want is what your mom will have to do. I have had all my diagnostic testing done at the same facility and I have requested that the same doctor read my scans for consistency. I get in and out of there quite quickly; I don’t even have to wear the lovely fashion gowns. As long as I wear sweats, t-shirt and a sports bar I’m good to go. The standard joke at my facility is here comes Lily the frequent scanner (wish I would get frequent scanner miles to somewhere).

    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209
    #18
    Options
    Cynth89 said:

    New
    Hi my name is Cynthia
    My mum was diagnosed with gallbladder cancer about a month ago and it has spread to the stomach and ovaries. They say it is inoperable and are looking to do chemo on her ovaries and gallbladder and radiation on her stomach. Since reading all of your posts it has given me hope that maybe surgery can be done at a later date and that the outcome may not be so horrible. I am her only child and I love her so much so am willing to try anything that can help. She is already very small and only weighs about 42 kg and they haven't even started chemo yet so I am very worried about her losing more weight. I was wondering if anyone can tell me what chemo cocktails have worked for them and what haven't and the same for radiation. Also, as far as foods go what does she need to avoid now and what should she be eating?

    Cynthia's Mum
    Welcome Cynthia to our discussion board!

    I'm Lily and I've been a survivor for 6 years with Stage IV GBC. I'm so sorry that this disease has entered your mum and your life. It is a terrible disease but don't believe in all of the outdated statistics. We need new statistics and for doctor's to realize that there are survivors. What Stage has she been diagnosed at? How old is she?
    Inoperable doesn't mean Never just Not Now.

    My chemo cocktail was Gemzar/Cisiplatin which even though it can be difficult, worked for me. I couldn't have radiation as my liver was compromised.
    Treatments are very similar but depending upon the stage can determine what the course of treatment will be.

    Your mum needs to eat even if she doesn't feel like it. I found that smaller meals throughout the day worked better for me.
    No caffeine, processed foods or sugar. Fruits, vegetables, lean protein, chicken, tuna, turkey and smoothies worked well. Supplements can help but only if her oncologist is in agreement. Some supplements can interfere with the chemo.
    Again we are glad you are here and we will try to help you with any questions, to the best of our abilities and experience.

    Take Care
    Lily
  • Cynth89
    Cynth89 Member Posts: 15
    #19
    Options
    Lily50 said:

    Cynthia's Mum
    Welcome Cynthia to our discussion board!

    I'm Lily and I've been a survivor for 6 years with Stage IV GBC. I'm so sorry that this disease has entered your mum and your life. It is a terrible disease but don't believe in all of the outdated statistics. We need new statistics and for doctor's to realize that there are survivors. What Stage has she been diagnosed at? How old is she?
    Inoperable doesn't mean Never just Not Now.

    My chemo cocktail was Gemzar/Cisiplatin which even though it can be difficult, worked for me. I couldn't have radiation as my liver was compromised.
    Treatments are very similar but depending upon the stage can determine what the course of treatment will be.

    Your mum needs to eat even if she doesn't feel like it. I found that smaller meals throughout the day worked better for me.
    No caffeine, processed foods or sugar. Fruits, vegetables, lean protein, chicken, tuna, turkey and smoothies worked well. Supplements can help but only if her oncologist is in agreement. Some supplements can interfere with the chemo.
    Again we are glad you are here and we will try to help you with any questions, to the best of our abilities and experience.

    Take Care
    Lily

    My mum
    Hi Lily,
    Thanks for getting back to me.Your story has been an inspiration to me as well as everyone else on this board. I am positive that we can beat this now after reading everyones story.
    My mum is only 58 years old. They haven't told her what stage,only that it's spread from the gall bladder to the stomach and ovaries and it'/ not good and they can't do surgery.We have an appointment on Friday with the specialist.
    Thanks so much,i'll run that past the specialist on friday and find out exactly what treatment they ae going to try.
    Ok we'll start making sure we cut out the bad foods and only have the right stuff.
    Thank you again
    Cynthia
  • Monarch
    Monarch Member Posts: 36
    #20
    Options
    Cynth89 said:

    My mum
    Hi Lily,
    Thanks for getting back to me.Your story has been an inspiration to me as well as everyone else on this board. I am positive that we can beat this now after reading everyones story.
    My mum is only 58 years old. They haven't told her what stage,only that it's spread from the gall bladder to the stomach and ovaries and it'/ not good and they can't do surgery.We have an appointment on Friday with the specialist.
    Thanks so much,i'll run that past the specialist on friday and find out exactly what treatment they ae going to try.
    Ok we'll start making sure we cut out the bad foods and only have the right stuff.
    Thank you again
    Cynthia

    Me too, Cynthia
    I'm an only child too, Cynthia. When I found out about my Mom's diagnosis, my whole world stopped and sped up at the same time. I thought I was going to pass out.

    I am sorry that you have been introduced to this disease. But, I'm glad you have found this board. The people here are wonderful.

    Make sure that your medical providers know that you are a team. Let them know you as a family. Thank them for being part of your team and let them know you are going to push forward with a positive attitude and good expectations. You Mum is not a statistic - she is a person.

    Let me know if you have any caregiver questions. I've walked in your shoes for the last 10 months. I will be happy to help you in any way possible.

    Tell your Mum she has a whole host of people cheering her on!

    Charmi
  • Monarch
    Monarch Member Posts: 36
    #21
    Options
    Lily50 said:

    MRI vs CT vs PET
    Hi Charmi,

    I guess it just depends on what the doctor's want to use. I have had all three at some point in time. Started out with CT scans, surgeon didn't like them so had to have MRI scans, had surgery then got a PET scan. When the tech that was administrating the PET scan came in to give me the injection and he had full body armor and a metal box with tongs to remove it from the box I felt like I was in a science fiction movie. More chemo and CT scans every three months for 2 years, and then every 6 months, I’m hoping this year I will only have to have one (fingers crossed).

    Yes, I do glow in the dark (my daughter scratched her cornea and when I took her to the doctor and they used a black light to look at her eye there I was there next to her glowing). We all had a good laugh about that.

    Yes, I do set off those pesky sensor bars when I'm are walking out of a store, I have been stopped many a time to check my bags for stolen merchandise. In the beginning I would get angry, but now I just laugh about it and don't let it ruin my day.

    So the bottom line is whatever the doctor's want is what your mom will have to do. I have had all my diagnostic testing done at the same facility and I have requested that the same doctor read my scans for consistency. I get in and out of there quite quickly; I don’t even have to wear the lovely fashion gowns. As long as I wear sweats, t-shirt and a sports bar I’m good to go. The standard joke at my facility is here comes Lily the frequent scanner (wish I would get frequent scanner miles to somewhere).

    Take Care
    Lily

    Thank you!
    I appreciate everyone's input regarding scans.

    We met with the radiation oncologist today. The schedule that was set today is a CT scan every 6 months for the next 2 years. We discussed all the various scans and he said his recommendation was the CT scan. So, that's what we're going with.

    Like you, Lily, Mom has had all of her scans done at the same facility. I'm not sure if they've been read by the same doc - but the radiation oncologist always reads them too. Thank you for mentioning it, as I will request that the same doc in the radiation dept read the scans each time, too.

    Mom jokes about glowing in the dark. I told her I was going to get a "glowing" button from choosehope. I'm warmed by the fact that you have such a positive attitude.

    Again, thanks to all!

    Charmi
  • Cynth89
    Cynth89 Member Posts: 15
    #22
    Options
    Monarch said:

    Me too, Cynthia
    I'm an only child too, Cynthia. When I found out about my Mom's diagnosis, my whole world stopped and sped up at the same time. I thought I was going to pass out.

    I am sorry that you have been introduced to this disease. But, I'm glad you have found this board. The people here are wonderful.

    Make sure that your medical providers know that you are a team. Let them know you as a family. Thank them for being part of your team and let them know you are going to push forward with a positive attitude and good expectations. You Mum is not a statistic - she is a person.

    Let me know if you have any caregiver questions. I've walked in your shoes for the last 10 months. I will be happy to help you in any way possible.

    Tell your Mum she has a whole host of people cheering her on!

    Charmi

    Hi Monarch
    Hi Monarch,
    Thanks for replying to my post.
    my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
    I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

    When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

    How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

    Thanks,
    Cynthia
  • Cynth89
    Cynth89 Member Posts: 15
    #23
    Options
    Monarch said:

    Me too, Cynthia
    I'm an only child too, Cynthia. When I found out about my Mom's diagnosis, my whole world stopped and sped up at the same time. I thought I was going to pass out.

    I am sorry that you have been introduced to this disease. But, I'm glad you have found this board. The people here are wonderful.

    Make sure that your medical providers know that you are a team. Let them know you as a family. Thank them for being part of your team and let them know you are going to push forward with a positive attitude and good expectations. You Mum is not a statistic - she is a person.

    Let me know if you have any caregiver questions. I've walked in your shoes for the last 10 months. I will be happy to help you in any way possible.

    Tell your Mum she has a whole host of people cheering her on!

    Charmi

    Hi Monarch
    Hi Monarch,
    Thanks for replying to my post.
    my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
    I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

    When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

    How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

    Thanks,
    Cynthia
  • westie66
    westie66 Member Posts: 642
    #24
    Options
    Cynth89 said:

    Hi Monarch
    Hi Monarch,
    Thanks for replying to my post.
    my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
    I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

    When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

    How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

    Thanks,
    Cynthia

    Dealing with Gallbladder Cancer
    Hi Cynthia: I too have gallbladder cancer (diagnosed Oct 2009). I have had 24 treatments now and am awaiting meeting with my oncologist to see what the next step is. I did not have radiation but surgery removed my gallbladder, its tumour, and part of my liver. I have 6 cancerous nodules on my peritoneum which is what we are trying to get rid of now. Anyways, you ask about how your mom may react to the chemo (I can't talk to radiation as I didn't have it). I am now 68 years old and like your mom live alone (with my sweet dog Charlotte). I have lots of friends who kind of looked after me during the worst times (like after the surgery and during some periods of the last chemotherapy treatment) but no one stayed with me all the time. I had a daily nurse for awhile when I was recovering from the surgery but not during the first chemo tre atment (cisplatin/gemcitibine). However, during the last 12 treatments I had a PICC line put in (for the oxaliplatin + irenotecan + 5FU pump) and a nurse comes once a week to flush the line, take off the pump, and give me a Neulasta injection (these treatments stopped Nov 4 but I still have the weekly nurse to flush the PICC line). I had no problems with the first treatments (cisplatin/gemcitibine) but the latest treatments (oxaliplatin + irenotecan + 5Fu) had a lot more side effects, like cold intolerance, neuropathy, sweating, fatigue, diarrhea. Nevertheless, I managed on my own as long as I knew friends were close by and available if/when I needed them.

    However, it all depends on how your mom will react to the chemotherapy and the radiation and it may take a few treatments to find that out. I'm sure she would love your company as it a rough disease to have. I didn't have children but I know I would have loved to have them with me or at least close by if I had.

    Keep us posted on how it goes. You sound like a wonderful daughter!

    Cheryl
  • Monarch
    Monarch Member Posts: 36
    #25
    Options
    Cynth89 said:

    Hi Monarch
    Hi Monarch,
    Thanks for replying to my post.
    my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
    I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

    When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

    How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

    Thanks,
    Cynthia

    The project piece of my family's journey
    Cynthia,

    Your Mum is lucky to have you on her side.

    Okay, here's what I did. I approached the whole thing as a project from the outset. I bought a binder, clear sleeves for paper (lots of them), a spiral notebook, and a planner.
    I broke the binder into several sections - blood test results, oncologist documents, radation oncologist documents, a section for each of the individual doctors, and a section for hospital info (scheduled stays and emergency room visits). Every piece of paperwork has gone into the binder. It has come in very handy as we take it to every appt. The docs have referred to it, I've been able to answer questions, show test results, etc on the spot. (Note that all our docs willingly gave us copies of their notes from each visit. I keep those in the binder as well.)

    In the notebook, I took notes at every appt. I also noted any questions we had going into the appt so that we wouldn't get caught up in the emotions and forget to get answers to things we wanted to know. I recorded Mom's blood pressure, weight, pulse, etc for every appt. When Mom was in the hospital for her liver resection, I kept detailed notes of drugs, when they were given, names of the nurses on duty, etc. Again, this information has been referred to many times.

    The planner was Mom's responsibility. I bought one in her favorite color - and then "decorated" it before giving it to her. I wrote things on every page (We love you! You are a fighter! etc) - and on the bottom of EVERY page, I wrote Hope...Faith...Love. I put stickers of flowers throughout the calendar pages. And, I gave Mom a new pen. I asked her to keep up with it every day. Write down how she felt, what her temperature was, what her bp was, what made her feel better, what made her feel worse, what she ate, what she drank. It was a project in and of itself. It has been a valuable resource of info - and it also gave Mom something to do. She had visual proof that she'd not had enough to drink or that she felt better on the days she had an egg or two for breakfast, etc.

    I bought a pretty bag to carry all books with us to appts.

    That as the project portion of our journey. (btw - we still keep all the books up to date)

    I'm going to post this so I don't lose it. And then I will address your other questions.

    Love,

    Charmi
  • Monarch
    Monarch Member Posts: 36
    #26
    Options
    Cynth89 said:

    Hi Monarch
    Hi Monarch,
    Thanks for replying to my post.
    my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
    I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

    When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

    How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

    Thanks,
    Cynthia

    Being there...
    Okay, Cynthia, on to the next part of your post.

    My mom has a liver resection and was in the hospital for 10 days. Shortly thereafter, she had her port installed and then started chemo (continuous infusion 5FU) and radiation. I took 5 weeks off work starting with the day before her liver resection. I went back to work with intermittent leave after the first week of her chemo/radiation. The intermittent leave allows me to be gone from work when Mom needs me and to go to all the doc appts.

    My dad took a full 12-week leave and then went on intermittent leave.

    We never let Mom go to an appt without one (or both!) of us there. Mom has been very brave throughout. But, I know she was comforted by having us there to hold her hand and dry her tears. (Unfortunately, sometimes there is pain...being stuck with needles for tests, etc.) This also allowed her to always be dropped off at the door rather than having to walk across the parking lots.

    Mom did not get sick with her chemo. (No throwing up, etc) She was nauseous quite regularly. She tired easily. Mom could not shower without help as her chemo pump was always attached. So, she required assistance. Could she have gotten by on her own? Probably. But I felt better knowing that there was someone with her.

    You will see how your Mum reacts to the chemo and radiation. Take her lead. Don't be surprised if she tells you "no, it's alright...I can manage" because she doesn't want to be a bother. But I can bet she will be comforted if you are close at hand. The key is to also give her some space - let her have some alone time while you're in another room or running errands, etc - so that she feels control over something.

    One of Mom's biggest hurdles was that she felt she had no control over anything. Someone was always telling her what to do, where to go, when to be there, etc. So, around the house, we made sure she made decisions and felt empowered. (I don't live with my parents but am only about 10 minutes away. However, I was at their house a lot of the time.)

    When you find out what the chemo/radiation protocol is, the folks on this board will be able to give you a bit more insight into what your Mum might experience.

    Again, posting before I lose this. I'll address your last question in the next post.

    Charmi

    (I just lost my post about dealing with the news and the future. I'll put another version of it together in the morning. Darn computer!)

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