Hi from NZ all is well!

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RE: Hi from NZ all is well!

by Maudsie on Thu Feb 07, 2013 10:00 PM

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Hi Lucy --  Like you, my GB was removed laparascopically for pretty benign reasons....the cancer found was a complete surprise.  My tumor was classified as T3 (Stage IIb) after they went back in a few weeks later and did the larger surgery that included removing and examining area lymph and neaby piece of liver.  I am guessing that your docs will recommend this same follow-up surgery, and I encourage you to get that surgery as soon as you heal from the laparascopy.

Keep in touch as you move along!!!!

RE: Hi from NZ all is well!

by Maudsie on Thu Feb 07, 2013 10:07 PM

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Hi.  You ask aoubt appetite and eating while on chemo and radiation.  Is your husband getting xeloda with his radiation like I did?  And I didn't have too bad a time with the regimen.  My appetite did decrease somewhat, but it really wasn't too much of a problem in my case.  The xeloda got a bit harder to tolerate toward the end for me, the last week or two....sort of low aching stomach pain.  Everything DID resolve after I was finished, however.  Everyone's side-efects are a bit different, but I think for most, after the course of treatment is over......normal appetite resumes.

Good luck, I wish him the best -- keep in touch!

Maudsie

RE: Hi from NZ all is well!

by Carolynnz on Thu Feb 07, 2013 11:00 PM

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Hi there Libby and Maudsie!!!! Yes I am still going along ok!!! Coming up to the 4 year mark inAugust!!!! I am really sorry its taken me so long to reply.......and still havent got time to write much now but will make some time on the weekend!!! I feel for you being in this beginning stage of you journey but I know how much it helped me when Maudsie got in touch with me after my first post as I thought everyone who had GBC didnt survive so even though yes it is an agressive cancer and all that stuff, the combination of early detection, surgery and chemo seem to be getting a few of us along a way so thats good news....will write more  soon....Carolyn

RE: Hi from NZ all is well!

by Carolynnz on Thu Feb 07, 2013 11:03 PM

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On Feb 07, 2013 11:00 PM Carolynnz wrote:

Hi there Libby and Maudsie!!!! Yes I am still going along ok!!! Coming up to the 4 year mark inAugust!!!! I am really sorry its taken me so long to reply.......and still havent got time to write much now but will make some time on the weekend!!! I feel for you being in this beginning stage of you journey but I know how much it helped me when Maudsie got in touch with me after my first post as I thought everyone who had GBC didnt survive so even though yes it is an agressive cancer and all that stuff, the combination of early detection, surgery and chemo seem to be getting a few of us along a way so thats good news....will write more  soon....Carolyn

Sorry I meant to include Lucy in that as well, so Hi to Lucy, libby and Maudsie of course!!!!! Carolyn

RE: Hi from NZ all is well!

by lucynz on Thu Feb 07, 2013 11:09 PM

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Hi Maudsie, I'm so glad to hear from you, I am getting a CT scan and see the liver specialist next week, I do hope the surgery will follow quickly. I am just over 3 weeks post op ( since the GB removal) now.

RE: Hi from NZ all is well!

by lucynz on Thu Feb 07, 2013 11:14 PM

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Thankyou Carolyn for responding, it is hugely encouraging to me to find someone is still around almost 4 years later, I hope and pray that I have the same experience.

As I just posted before, I am just at the beginning pf this journey, I have CT scan and meet with liver surgeon next week. Hopefully the OP will happen quickly. I have noticed a big change in my thinking since finding oout about the cancer, I really appreciate every day now, and I have so much love for my family and appreciate any little kindness so much more. I also don't sweat the small stuff.  Thats a positive.

RE: Hi from NZ all is well!

by Minmin on Fri Feb 08, 2013 03:09 AM

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On Feb 07, 2013 10:07 PM Maudsie wrote:

Hi.  You ask aoubt appetite and eating while on chemo and radiation.  Is your husband getting xeloda with his radiation like I did?  And I didn't have too bad a time with the regimen.  My appetite did decrease somewhat, but it really wasn't too much of a problem in my case.  The xeloda got a bit harder to tolerate toward the end for me, the last week or two....sort of low aching stomach pain.  Everything DID resolve after I was finished, however.  Everyone's side-efects are a bit different, but I think for most, after the course of treatment is over......normal appetite resumes.

Good luck, I wish him the best -- keep in touch!

Maudsie

Thanks for getting back to me Maudsie. My husband George is having 5FU chemo. The low aching stomach pain is exactly what he's describing. The specialist reduced his dose of chemo by 20% this week, cos he has been developing broader symptoms in response - nose bleeds, ulcerated lips, penile ulcers. While reducing the dose hasn't stopped the effects, we are hoping that things don't continue to get worse so that he can get get thought the last week of radiation. Being able to read throughout the dialogue between all of you has been really good for us. I agree that seeing that there are people who have survived for long periods is giving us hope. Like some in this blog, George's cancer was detected by chance as a result of having a gall bladder attack - so we thought. I hope we can continue to keep in touch as we progress. Thanks heaps - Kathy

RE: Hi from NZ all is well!

by Maudsie on Fri Feb 08, 2013 12:05 PM

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Kathy, all those effects sound like a fairly typical response to the chemo. Xeloda is 5FU in pill form, so the 5FU is basically the same thing in IV form.  Both really help magnify the effects of the radiation.  I think your specialist is right on top of it.  If it become untolerable, it is not the end of the world to have to stop it.  But so far, just hang in there!

been there,  Maudsie

RE: Hi from NZ all is well!

by Maudsie on Fri Feb 08, 2013 12:14 PM

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Lucy, it sounds like you are right on schedule and your course of treatment is porgressing just as it should.  Your liver surgeon will explain the surgery that he/she plans, it will include taking several lymph nodes in the area and a big wedge of nearby liver and he will look to see what the bile ducts are like and if they are invloved he will deal with that.  You'll be in the hospital for at least 4 days depending.  Yes!  You are moving forward!  And yes! Your perspective on life definitely DOES make a shift after receiving this sort of diagnosis.  I am a different person today.

I saw my oncologist last week for blood tests (all normal) and a chat.  He will order one more CT scan in 6 months, in July,  my 5 year anniversary, and that will be the end of it for me.  End of my cancer story, but FAR from the end of my life.  I am very very grateful.  And I will stick around this board.

Maudsie

RE: Hi from NZ all is well!

by LibbyH on Fri Feb 08, 2013 08:40 PM

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Hi there Lucy and Carolyn, It is nice to be in touch with people with this cancer in NZ as I have been told that GB cancer is quite rare. You both have been very lucky to have caught this awful disease early and you both have had your gallbladder out - the chances of a good recovery is good for you both and I wish you both all the very best, especially you Lucy who is just starting her journey. Good for you too Carolyn, you have done well. Unfortunately, mine is inoperatable as mine has spread to my liver and my bile ducts and I am stage 4. That is not stopping me from being positive though! I look forward to hearing from you, all the best Libby
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