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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 11
I am on 5FU at the minute (I actually finish it tomorrow after 30 doses) It did make me quite sick at times, it was strange as some months were better than others. I also got:
Bad taste usually lasts about a week
Sore mouth i.e. gums etc you can get good mouth washes for this
Sore lips they seemed to blister and can be sore but you get a very good paste for this
Skin dried up on hands and fingers, not much of a problem a good hand cream sorts this out although the tips of my fingers sometimes get sore but all in all not a big issue.
You also tend to get an upset tummy and run to the toilet quite a bit this seems to get worse as the months progress but you can get very good tables to sort this out.
My hair thinned but I still have a good head of hair.
Tiredness is a big problem but you have deal with it as best you can again it gets worse as the time progresses, you just do what you can, if I have plans in the evening I tend to rest alot more during the day.
My Minister advised me that I needed to be selfish and to look after myself first, that is hard espically as I have a wife and 3 year old son, but at the end of the day you have to be selfish so to speak and take care of yourself first. 6 months seems along time but it does go in quicker than you might think. I hope this helps and does not put you off I am glad I went through with the treatment.
In october last year I had a whipples operation to remove my tumor. Doc's told me I am more or less qured. I had the option of chemo and took it more for peace of mind. It started in December (the week before Christmas) and lasts 6 months. It really took it out of me, I was ready to return to work if i was not getting the Chemo but it really knocked me for 6 it is hard going but probably worth it in the long term. The docs suggested another 3 - 6 months to fully recover.
I just though about what if the cancer comes back and I had refused the chemo would I blame myself? I my case I really wanted the treatment even though the Docters were more than happy if I decided not to go with it.
hope this helps - feel free to contact me
I am on 5fu and I get a 30ml injection each day for 5 days (every 28 days) Whats the 2 day IV? I was also told there was a tablet version maybe this is what the difference is, apparently the tablet is not the same as 5fu, but when taken the enzymes in your body convert the tablet into 5fu. In my case they would not give me the tablet as it costs more than the injections. Damm NHS!
Thats a really tough question, I am about to start my 6th month of chemo, and its been alot harder than I though. My life has stopped as the sickness and tiredness and other effects take their toll on the body. In my case I am young and the chemo was for piece of mind as the surgery removed all the cancer, so for me it was / has been worth the loss of 6 - 9 months of my life. But and this is only how I feel - if my cancer came back and had spread to various parts and was looking terminal I would not take chemo as the loss of quality of life is too great if you were only to get a year or so longer in return. But this is a decision everyone has to make for themselves. I just hope and pray I don't have to make that decision.
I hope all goes well for your family.
Hi all its been awhile since i have been on. Chemo started last december and they have given me 5FU its been really tough I have had lots of side effects but i start my last dose tomorrow and thats me finished. Docs are still really happy with my progress they have said they are really confident the cancer has been removed and they see no reason why it should return, probably as there is next to no bile duct left LOL! but seriously its been a long road since august but the end is in site.
Thanks all i will mention the chemo next week, I have been transfered to a hospital closer to home only about 2 miles from home how handy is that! I got an apointment to meet the doc next tuesday so i will mention the drugs then. I will keep you all updated.
That was a long message! Anyway I had a whipple in 2006 carried out in Belfast, I spend less that 2 weeks in Hospital and 3 weeks after the operation I was playing lawn bowls again! Its intreasting you say you have lost feeling around your scar so have I. My scar runs the full length of my tummy and below the scar in the middle 6-7 inches I can feel nothing, no touch, hot or cold or pain - its actually quite cool a wee party trick LOL - did your feeling ever come back? And you mention the bile juices I get that also, I have only been sick once it was 3 weeks after surgery boy was I scared I though all my internal stitches were going to burst but it was fine. I think the biggest problem is getting used to the 'bile taste' but to be honest its not that often and really not the worst thing that can happen. A Whipple sounds harsh and I guess it is but at the end of the day you can lead a perfectly normal life. I have read you post on other sites and although this sounds bad but it is so good to hear that you are still around to tell your story.
From what i have been told it is sometimes hard to tell as they are so close to each other. My cancer was in the bile duct but the surgeon could not be 100% sure until he sent my pancreas to the lab. It turns out it was in the bile duct but their was that doubt in their mind
I had a stent in place when I was diagnosed, it worked for a while but blocked and i turned yellow on a weekly basis, they talked about a drain for me but decided to try a bigger stent as the first stent shoud have stretched the ducts enough. The bigger stent worked although it was only in for about 4 weeks till I had the operation.
I have or should really say had bile duct cancer diagnosed in August of this year and operated on in October. My surgeon was Mr Diamond in the Mater hospital in Belfast all I can say is he is brilliant, he carried out a whipple on my and i have no problems i was home in less than 2 weeks. I was then sent to the new cancer centre in Belfast City hospital and I am due to start chemo in December they are giving me 5FU but there is very little info or trials done on bile duct cancer so this is their best guess.
My name is Andrew Morrow and I was told in August this year that I have cholangiocarcinoma or bile duct cancer (it's much easier to say and spell!) I was taken into hospial as I had really bad stomach pains and I turned jaundice, at this time the Doc's thought I have gall stones. After ultrasounds and MRI scans thay could not find any stones, so as I was still yellow and in pain they decided to do an ercp and put a stint in the bile duct. During the ERCP they took cell samples and they turned out to be cancer. I was they handed over to a Mr Diamond in the Mater hospital in Belfast and he carried out a Whipples procedure. My cancer had spread through the bile duct and into 1 lymph node, Mr Diamond removed 11 nodes so only 1 was infected. Thankfully the tumor was at the very bottom of the bile duct and my liver is clean. I had the op on the 2nd October and I have recovered very well. I spend less than 2 weeks in hospital. I then was sent to the Cancer centre in Belfast City Hospital were I was told the tumor was completly removed and the docters have every confidence that I will be fine. Its all down to time now to make sure it does not come back, I had very clear margins so God willing I will make a full recovery. I have been offered Chemo to mop up any lose cells and this is due to Start in the 4th December 2006, they are giving me 5FU.
I don't know too much about this illness except that its very rare, and information that I have read says that recovery is rare but I have every confidence that this cancer will not 'get' me as God has been with me every step of the way, infact because of my cancer I turned to God and committed my life to him, he has carried me every step of they way.
Posts found: 11