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(167 replies, posted in General Discussion)

My heart breaks for you Pam and your family. R.I.P gorgeous girl. xxx

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(122 replies, posted in General Discussion)

Havnt had a chance to login lately but have been thinking of you both. so glad to hear the surgey went well and am praying for her speedy recovery. Lauren is such an inspiration to me and she is so blessed to have such an amazing Mom!!!! God Bless

Thankyou Willow for you kind words and as usual your wealth of knowledge PCL1029. I have made an appointment with my oncologist for tomorrow to discuss.

Hi everyone,
I am on day 4 of xeloda and radiation treatment (6wk cycle). So far its all going well with no side effects, touch wood it stays this way!
My question is this,  My Doctor has decided that I should be self injecting myself everyday with the blood thinner Clexane (enoxaparin sodium) as they are worried there is a risk of small blood clots in the portal and small veins around where my radiation is directed. I am worried about my platelet levels which are always very low and the risk of bleeding!  has anyone had any experience or heard of this?

Many Thanks in advance
Mandy

Yes there is always something!!! Thanks Guys, I will try the not thinking about it approach and save the energy for something productive!!

6

(18 replies, posted in Introductions!)

Thanks Tripleblessed,  I hope this post still finds you coping well with the chemo/radiation.  I had my appointments and planning scans a couple of days ago and was able to ask lots of good questions!

Hi everyone,
I am about to start chemo/radiation on my Radial R1 site. I have been told that it is possible the radiation could cause scar tissue build up in the remaining bile duct and could cause it to close up which could result in having to have procedures maybe every 6 weeks (worse case) to "pop" it back open perhaps for the rest of my life?
aaarrgh very scary!!! is there nothing more permanent?
Any experiences with this???

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(18 replies, posted in Introductions!)

TripleBlessed that is so good to hear that you are doing so well.  Could you tell me what the two drugs you are taking (campazine and prisolec) are for exactly? I go to see the oncologists tomorrow and want to be armed and ready to go with whatever information I can!! Also do you take the xeloda everyday or every other?
And Marion, Scanxiety is definently what I have!!! Thankyou for giving it a name!!!!  and as always Thankyou..

I am so happy to of logged on for the first time in awhile and been greeted with such fantastic news!!!!!!  You are both in my thoughts and prayers and I am forever grateful for the advice and support you have shown me Pam since my own journey began.  (as I am to all the other wonderful people on this site too).

Much Love
Mandy

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(18 replies, posted in Introductions!)

Hi There everyone, its been a while since Ive been on the site due to not being too well from chemo I guess and a little 'information overload' and felt the need to stop researching for a moment! It is exhausting.
I read with interest the posts from tripleblessed and wallsm. I was diagnosed and operated on in sept of last year. I had a Hilar cholangiocarcinoma on background of presumed intraductal papillary mucinous neoplasm (radial R1 margin) or in short terms I had a 6cm tumour removed along with 70% of my liver, bile duct and gall bladder and then a bilary reconstruction. They also took lymph nodes that tested negative. around 6wks after surgery I started gem/cis and am currently half way through the last cycle (total 6) woohoo!!!!
At first I was told that I couldnt have radiation but being stubborn I decided to get other opinions and now I am about to start chemoradiation (5FU) in about
4 weeks time. 
I should mention that I am 39 years old and am also triple blessed with 3 gorgeous boys!
I have so many questions about what Im about to go through!!  I am so nervous, I go for my first CT scan since the surgery on Tuesday and am terrified.  But am trying to stay positive. 
So any insights into both the chemo and the radiation would be wonderful. I am told that I will probably have the pill form of 5FU and compared to gem/cis its a walk in the park?
Thankyou for all of you insights in advance.  It truly is wonderful to find such an amazing group of people with such amazing stories.

Mandy

Thankyou so much, all very helpful and informative as always, I have so much to learn. I will will read and re-read all the above and go to the oncology meeting armed with questions and im sure feeling much more confident in my treatment.  One last question is the 2 weeks on and 1 week off quite commen? I have read somewhere that generally the regime is cis/gem day 1, only gem day 8 and then 2 weeks off? or is it that they start you off with all of it and then taper back as necessary depending how you cope.

Hi everyone,  I am currently on cis/gem combo chemo. I have a 3 week cycle, day 1 cis/gem, day 8 cis/gem then 1 week off. I have managed one full cycle, I had pretty much all the side effects from nausea to ringing in the ear and mild hair loss. The next cycle, 5 days after the first treatment I ended up in hospital for 5 days with sepsis so the oncologists cancelled the next session and said they would wait and start a new cycle. I feel like I just can't do it anymore, chemo really sucks!!! Im so sick of being sick. I have an appointment with the oncologist next week to discuss where we go from here. I guess my question is, is this a fairly normal regime to be on? any advice? also I have just found out that I had clear transection margins but an R1 radial margin along the left bile duct.  What does this mean???

God Bless
Mandy

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(19 replies, posted in Introductions!)

Hi Alla,
Thankyou so much for your post. It is good to hear it from the spouses point of view. I have set up some counselling sessions for us both to try and open up the lines of communication.

Marion, It certainly did bring a smile to my face, a good bit of humour really is great stress relief!!!!   And It also adds to the list of things to talk to my Doctor about!

15

(19 replies, posted in Introductions!)

Thankyou so much, I will make some enquiries today about counselling, I hope I am able to find someone to help us as we are in a fairly small town. Also I will make an appointment with my Doctor and see what she can suggest.
Much Love to you all.

Hi all, I also had a Roux-en-Y when they did my surgery. I have had terrible problems with my digestion and find myself bloated and windy and generally have a lot of pain in my stomach.  I take 40mg of omeprazole morning and night which does help a bit. Should I be asking for something else?

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(19 replies, posted in Introductions!)

Thankyou Everyone,you are all amazing people. 
I am really struggling with the depression at the moment, I am taking Lorazapam but I think it may not be doing a good job. I do have wonderful people around me. But My Husband, who I feel I need the most, is also not coping well.  He is so busy, we run our own business, and between the children and work there doesnt seem much time for me.  I feel Im left to deal with my problems and the side effects of the chemo, which this cycle have definently been worse, as he is not able to deal with it himself. It must be so hard for him to one day have a healthy wife an children and a pretty good life to having all this to deal with.  He does not come to any appointments with my doctors or take me to chemo or anything anymore. He pretty much just finds any excuse to be busy with other things.  I guess my question to you all is this, How do I help him and myself at the same time, I feel that once my treatment is finished and Im on the recovery side, there may not be much of a marraige left. I feel resentful that he does not want to be there. I know he loves me but I think this is too much for him to deal with.  Any advice?

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(19 replies, posted in Introductions!)

Thankyou for all your kind words, and it is good to know that there are people as close as Australia to talk too!
I was operated on in Christchurch Hospital by an amazing surgeon Mr Saxon Conner.  I have been told he is extremely good in his field and I found him to be fantastic. I do Know he decided to take the aggressive approach as he felt that considering my age and health, I had a good chance for a cure as the only cancer found was in the Tumour itself, I think he decided to take the whole bile duct and do a bypass because it was blocking the bile duct. I am currently on cisplatin and gemcitbine, which seems fairly standard?

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(19 replies, posted in Introductions!)

Hi There. My name is Mandy and I live in New Zealand.  I am a 39 year old mum of three.  I was diagnosed with CC in September. I have had surgery and they removed My bile duct, a 5cm tumour growing on my bile duct, gall bladder, 8 lymph nodes, 70% of my liver and did a biliary bypass.
Fortunately the cancer had not spread beyond the Tumour and I am told they aggressively removed all the other bits as a precaution.  I am currently on my second cycle of chemo, again Im told this is a precaution just in case some cells got loose and I believe they plan on doing another 5-6 cycles.  I am so greatful to have found this website as I have not been able to find much information here in New Zealand. Is there anyone else out there in a similar situation as me? From reading alot of other posts so far I am thinking that I might sound pretty lucky.....or is this the calm before the storm. This whole thing is so Daunting. 2 months ago I thought I was as healthy as the next person, my how life can change in an instant.