http://www.cholangiocarcinoma.org/punbb cholangiocarcinoma.org :: discussion boards en http://backend.userland.com/rss http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27966#p27966 27966@http://www.cholangiocarcinoma.org/punbb LD how incredibly difficult for you.I sounds as if you did amazingly well.I think those symptoms are the most difficult of all to deal with.You just have to try to remember him as he was.A lot of people do experience that confusion to some extent but it sounds as if it was a huge problem for your husband.It really is a sign that he was very unwell.    Of course you could only give him liquids if the food caused extreme pain,you did not starve him to death,the cancer did that.You did your very best under difficult circumstances but perhaps you need some counselling to talk things through a bit                                Janet Thu, 11 Mar 2010 14:47:22 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27965#p27965 27965@http://www.cholangiocarcinoma.org/punbb Thank you everyone for such a nice welcome, Its great that there is such and openness for discussion at this sight.  I do take my time getting my thoughts on paper please bear with me. There are a couple of things I'd like to share that Kathy and Lalupes have asked me. Why I'm not doing chemo.  It was presented as a way to buy time, a few months or so, nobody knew. They did know it was't a cure. Just as the PDT is not a cure. We believe  the body can not heal itself if its defenses are being killed off by chemo.  Diet being the change we made to strengthen the immune system and cleanse the whole body of toxins and chemicals making it easier to fight the cancer.  Another reason is my first wife and brother inlaw both died of cancer and both went through chemo therapy.  Their quality of life was poor and I want a better quaitly of life and have one.  As for a partially blocked stent, it usually shows me its getting blocked in 3-4 ways before I have the billirubin checked. 1) urine turns darker, 2) stool turns lighter, 3) my right side just above the liver aches off and on and 4) I usually get an infection which is a tightness across my abdominal area. Sometimes its just the infection symtom and they pull the stent and its full. When its just and infection symtom I start taking cypro and have kept things from getting worse for up to 5 weeks. Everytime is different and there is no order to the symtoms.  Just listen to your body, its talking to you. I hope I answered your questions for you.  I have a question for Kathy.  Can you give me any more information on the stent you spoke of 'metal wrapped in plastic' that lasts up to 6 months? I sure would like to see if that would work for me.  Its been 16 months and the tumor has had very little growth and this weekend was my first fever since last October.  I think we are making progress however slow.  Thank you all for your support and sharing its been great to see so many interested people.  Who knows where this site could lead, maybe to a cure.  Love you all,  Bill Thu, 11 Mar 2010 14:38:08 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27964#p27964 27964@http://www.cholangiocarcinoma.org/punbb It is a shock to get that kind of news but it needs to be taken seriously and prepared for because it might go that way and you and your dad need to be ready for that.On the other hand you can always hope for the best because cancer is an unpredictable disease and sometimes slows up without reason.     So be prepared for the worst but keep hoping if that makes sense and try and have some good times with your dad                     Janet Thu, 11 Mar 2010 14:34:53 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27963#p27963 27963@http://www.cholangiocarcinoma.org/punbb Hey Julie, My mom was diagnosed with this cancer back in august of 09. Her cancer started in the dile duct that starts in the liver also.  My mom's cancer wasn't diagnosed until it was in stage 4 and had spread to her liver.  It was inoperatable.  She's currently on a regiment of Gemzar every other week and a oral chemo drug (that's kinda new) called Tarceva.  She has to take the Tarceva everyday with specific times as to when she can eat.  It seem to be working.  We went for a CT scan today to see what the tumors are doing, but her energy level is up and she's moving more like her old self. the best of luck to you and the treatments that are used. Thu, 11 Mar 2010 14:30:11 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27962#p27962 27962@http://www.cholangiocarcinoma.org/punbb Does your mother numb her port before access is attempted?  I do this every time my port is accessed, with a cream I put on about an hour before and cover it with Glad Press & Seal wrap (it sticks to the skin but not like an adhesive).  There have been several times when the nurses were not able to get blood through my port, but it didn't affect the chemo going in.  They explained to me that cells build up at the port opening to the artery and then open and close like a flap, so that when they try to get a blood return it closes but fluid going in pushes it open.  I would just have them access a vein in order to do my initial blood work.  Sometimes they were able to get a blood return by putting me in one of the chemo recliners and tipping me a little backwards, they called it a positional thing.  Also, there is a drug called activase (I don't know how to spell it) that I have been given to dissolve the cell flap.  I used to get upset and really concerned when they couldn't get a blood return but the nurses told me it wasn't really an abnormal thing.  They always told me they have lots of tricks they could try to get blood return before having to check the port function.  But do check with your doc about your concerns. Thu, 11 Mar 2010 13:48:50 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27961#p27961 27961@http://www.cholangiocarcinoma.org/punbb Hi Munchkin! Fellow UK member here. I too stated with 'gall stones'. Well, I certainly had inflammation of the gall bladder, but also a tumour in the cystic duct. Fortunately I was eligible for surgery (although the tumour wasn't confirmed until the surgery) & am currently counting my blessings! My treatment was in Plymouth. Good luck with your treatment at the Royal Marsden, I have no personal knowledge of their services but they do have a great reputation. Helen is right, the Penny Brohn site does have some excellent info, definitely worth a look, as is her AMMF site. There is a huge amount of info on this site, even for the UK, particularly from fellow ccr's & carers, I think treatment options are improving here but there would seem to be great differences depending on where you are seen. Take care, very best wishes, Val Thu, 11 Mar 2010 13:40:17 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27960#p27960 27960@http://www.cholangiocarcinoma.org/punbb Hi Amr, Welcome back. Not sure if 'Movicol' is available in Eygypt, it is a very gentle laxative that may help your Dad's symptoms. ''Each sachet of this medicine contains macrogol (polyethlene glycol '3350'), which is a type of medicine known as an osmotic laxative. Each sachet also contains sodium bicarbonate, sodium chloride and potassium chloride. The contents of the sachets are mixed with water to make a drink.Macrogol is an inert substance that passes through the gut without being absorbed into the body. It relieves constipation because it causes the water it is taken with to be retained in the bowel instead of being absorbed into the body. This increases the water content and volume of the stools in the bowel, making them softer and easier to pass''. Katie Thu, 11 Mar 2010 13:39:49 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27959#p27959 27959@http://www.cholangiocarcinoma.org/punbb Hi again all! Thanks for your lovely comments! Lainey - I shall be 50 on April 22nd  - hence the need to relive my youth! just to show there's life in the old dog yet - or should that be lamb in the mutton? Marion - Thanks, I was very interested to see your post on the 'mini-epidemic of cc on the Humber Estuary - there has to be a link with something in that area, I'm sure it'll become clear in the fullness of time. Gavin & Julia - Thanks & bring on the shopping & the night out! Back on Facebook for the time bring but promise to look in on here every so often! Val x Thu, 11 Mar 2010 13:17:00 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27958#p27958 27958@http://www.cholangiocarcinoma.org/punbb My spleen is also enlarged, though only slightly, and my platelets are up and down.  My doctors have told me that my spleen is "harboring" the platelets and releasing them sporadically, so that's part of the reason my spleen is enlarged and my platelets are kind of all over the place.  Last week my platelets were 56 and this week they're 46.  Hopefully they'll be high enough next week for chemo (my last treatment was 2 weeks ago), which is annoying to me because you would think the further away from chemo my platelets would go up but instead they bounce around.  My docs have given me chemo with my platelets at 59, but they prefer 70.  I don't know of anything to try at home that will help boost my counts, but maybe someone else knows of something. Thu, 11 Mar 2010 13:16:39 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27957#p27957 27957@http://www.cholangiocarcinoma.org/punbb Lainy,    I think we just have too many Drs. involved. The goal was to first get rid of the prostate cancer so in three years , if it is still possible he could have a liver transplant. I already agreed to share half my liver. Now they are so convinced that the cc is back that maybe he should just have hormone therapy, but that doesn't offer any "cure". He might as well not bother because the cc will get him before the prosate cancer. Anyway, we are kind of taking things into our own hands here locally and he is going to get the seeding done by his original urologist. They can sort things out at OSU in the mean time re: the cc. He says at least he knows he won't die from prostate cancer! Tom's been tired too so he's going to his primary doc tomorrow and getting a blood count done. They didn't do that on Monday even though his platelets were really low when he was sick.  I think it may be mental too. Who knows? I don't blame him.  Take care, Mary Thu, 11 Mar 2010 12:01:13 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27956#p27956 27956@http://www.cholangiocarcinoma.org/punbb LD, Don't feel that you are being negative.  You are just expressing how you feel.  My feelings and experiences are similar to yours although it only lasted for less than 2 months, which at the time was almost impossible to accept & deal with, but knowing what I have learned here, for my husband it was a blessing, as his suffering was over.  Jim has been gone 1 1/2 years and the memories still haunt me.  This is an experience no one should have to go through,  but we did and coming here helps me to deal with it.  It will never go away, but I am trying to learn how to live with it and go on.  Some days are harder than others, but we have to try.  Please keep reading and posting when you can.  It does help. Love & Hugs, Darla Thu, 11 Mar 2010 10:05:39 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27955#p27955 27955@http://www.cholangiocarcinoma.org/punbb Hi Courtney, Good to hear from you.  I think another opinion would be a good idea, too, since there is so much confusion.  I do know how you feeling about the remark that if insurance covers it do it.  My parents are both 83 and although their health issues are unrelated to CC, there have been a few times when things were recommended and they had already checked if insurance would cover it before they recommended it.  Valid or not, my sisters and I wondered if it was about the money.  In one case a second opinion proved that what was recommended was not necessary as my Mom didn't even have what the first doctor claim she had!  So, yes get another opinion and if you are still confused get another.  They more information you get, willl help you to make a more educated decision.  Hoping for the best for your Dad, you and your family. Darla Thu, 11 Mar 2010 09:47:52 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27954#p27954 27954@http://www.cholangiocarcinoma.org/punbb Hi all, I often receive e-mails and phone calls asking for financial assistance.  I remember very well looking over Mark's bills and frequently being shocked.  The foundation is not set up to assist in this way right now, but we hope as we grow we will be able to do this.  I'm wondering if any of you have received financial assistance through any of the national cancer foundations or any other source?  I'm not looking for information on local assistance that you have received, unless the organization does so in all of the states. There is a lot of information posted on our site and other sites about different organizations you can look to for assistance.  However, I'm wondering if anyone has actually received financial assistance specifically for their medical care with cholangiocarcinoma. I would like to be able to pass on specific information when patients contact me. Thanks, Stacie Thu, 11 Mar 2010 09:18:09 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27953#p27953 27953@http://www.cholangiocarcinoma.org/punbb Though I am opposed to considering suicide for a person with cc, I think more discussion and information for care givers would be helpful as far as what to expect might happen.  It appears that this horrible disease affects everyone a little differently.  I come to this discussion board often and it has helped me in a lot of ways, but I have never heard anyone discuss how this disease can affect the mind. My husband went from a very mild mannered, loving husband and father to a very hard to deal with patient.  He was demanding and said very cruel things to all of us.  It was a nightmare of the worst kind and though I know that his mind was affected by toxins (as explained by a Doctor) in his brain, it is still very dificult for me even though he has been gone 2 1/2 years.  Nothing was ever the same after his first severe attack of pain that sent him to emergency where a prelimary diagnosis of pancreatic cancer was made which then after more testing was determined, in reality, to be bile duct cancer.  He was an extremely difficult pattient, especially towards the end.   He litterally starved to death and because solid food of any kind caused him horrendous pain, I was told to only give him liquids.  This still haunts me, did I starve him to death?   As he grew weaker, he refused to use a walker even though he would fall.  When he absolutely could not hold himself ip, he fought us constantly to get out of bed and was always trying to climb over the rails.  Right up until he died, he fought to get up, the last three days of his life, he was in a semi-coma, he would lay guietly for 2-3 hours and then he would fight to get out of bed for about 10 minutes and then he would lapse back into a coma and this repeated itself 24 hours a day for three days.  He was under hospice care and we had the morphine to give him, which we did.  When it was all over, I felt so guilty at the relief I felt. We had been married nearly 45 years and I loved him dearly,  but I am plagued by my memories of our final year together.  It was very much a nightmare. I am sorry to be so negative, but I would not wish the experience I had on my worst enemy. Your board id a good thing, keep up the good work. Thu, 11 Mar 2010 08:43:49 -0800 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27952#p27952 27952@http://www.cholangiocarcinoma.org/punbb Hello Rosieinbelair and Welcome to our Wonderful and Caring Family. Nobody can say how long anyone has to live because we were not born with expiration dates. John Hopkins is an excellent Hospital but sometimes it does not hurt to get another opinion. An MRI is really one of the few ways to see what is going on and perhaps they are waiting for those results to give you more of an answer. I know the waiting is awful. I question why they are waiting a week or 2 to do the MRI? You might want to make a list of questions and never be afraid to insist on knowing what is actually going on. Lovely that your dad has so many caring daughters but is one of you holding the Power of Attorney for him so you can make decisions? There is so much to learn and read and do but once you are armed and once a plan is in place, everything will calm down. It really does. Please keep us posted. Thu, 11 Mar 2010 08:38:14 -0800