CancerCompass message board discussion started by Pamngreenvillesc on 7/13/2007 http://www.cancercompass.com/message-board/message/all,14306,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ would love to hear from anyone (caregiver/patient?) who is dealing with bile duct cancer.  I am 55 years old and right now feeling very good.  In month number 2.  Oncologist said 3 to 6 months.  We'll see about that!People ask me "how did you get it?"  Why is it that I could care less how I got it anyway?I have home hospice.  Will pass away at home with my sons and special companion when the time comes.  We may not have a choice of how we enter this world but isn't it nice when you have a choice on how you leave?The mind is a powerful thing.  Remaining as positive as I can humanly muster.  A week long trip to the beach is coming up and that is what is keeping me going right now.  Have to feel the sand in between my toes and smell that ocean air.Gotta go now.  Social worker coming to visit in a while.pamngreenvillesc     Pamngreenvillesc Fri, 13 Jul 2007 00:00:00 GMT My husband has cholangiocarcinoma, unfortunately he doest have that great attitude. He is bitter and angry.  He has a tumor (Bob) about 14 cm that now has some company. Chemo no worky ! We were sent home with "enjoy the  rest of yyour life"  but went to U W which has all sorts of ideas, TACE and ressection etc. We will find out about these choices this week.  So now that you planned how to die with some control, consider fighting real hard for treatment.  MD Anderson hosptal in Tx on cutting edge, but in your area there are probably lots of centers to consult with. And no 2 oncologists think alike. That is frustrating at best. You need to go out on a limb and take some risks and find  oncologists that are willing to go there.  Good luck ! Robynh Fri, 13 Jul 2007 00:00:00 GMT  On 7/13/2007 Pamngreenvillesc wrote:would love to hear from anyone (caregiver/patient?) who is dealing with bile duct cancer.  I am 55 years old and right now feeling very good.  In month number 2.  Oncologist said 3 to 6 months.  We'll see about that!People ask me "how did you get it?"  Why is it that I could care less how I got it anyway?I have home hospice.  Will pass away at home with my sons and special companion when the time comes.  We may not have a choice of how we enter this world but isn't it nice when you have a choice on how you leave?The mind is a powerful thing.  Remaining as positive as I can humanly muster.  A week long trip to the beach is coming up and that is what is keeping me going right now.  Have to feel the sand in between my toes and smell that ocean air.Gotta go now.  Social worker coming to visit in a while.pamngreenvillesc    Hi there, brave, wonderful woman!My husband (we both are 61) was diagnosed with bile duct cancer in April. He is as strong as you are. No bitterness, we are aware that we had a wonderful life with two beautiful adult sons. We allways loved eachother and in September are married for 33 years.At this moment (with the stent) he is doing very well. Even went back to work for 3 full days a week. Doesnot want to receive his money as a gift, but work for it as long as he can. He started playing squash again. Maybe a little less than he did, but enjoying it. Though in my heart there is fear for what is to come, I am happy with the days we are having now. Opening my eyes in the morning and there he is beside me.Our doctors (we live in the Netherlands) told us that when the stent is working well, even if the cancer process is going on, we might have a while. We decided we will live these days, weeks, months and do the things we enjoy.I hope and wish for you that you can do the same. I am thinking of you and respect you for your brave will. I hope you can keep me up to date how things are going with you.Much love, Iris. Flower1 Sat, 14 Jul 2007 00:00:00 GMT  On 7/14/2007 Flower1 wrote: On 7/13/2007 Pamngreenvillesc wrote:would love to hear from anyone (caregiver/patient?) who is dealing with bile duct cancer.  I am 55 years old and right now feeling very good.  In month number 2.  Oncologist said 3 to 6 months.  We'll see about that!People ask me "how did you get it?"  Why is it that I could care less how I got it anyway?I have home hospice.  Will pass away at home with my sons and special companion when the time comes.  We may not have a choice of how we enter this world but isn't it nice when you have a choice on how you leave?The mind is a powerful thing.  Remaining as positive as I can humanly muster.  A week long trip to the beach is coming up and that is what is keeping me going right now.  Have to feel the sand in between my toes and smell that ocean air.Gotta go now.  Social worker coming to visit in a while.pamngreenvillesc    Hi there, brave, wonderful woman!My husband (we both are 61) was diagnosed with bile duct cancer in April. He is as strong as you are. No bitterness, we are aware that we had a wonderful life with two beautiful adult sons. We allways loved eachother and in September are married for 33 years.At this moment (with the stent) he is doing very well. Even went back to work for 3 full days a week. Doesnot want to receive his money as a gift, but work for it as long as he can. He started playing squash again. Maybe a little less than he did, but enjoying it. Though in my heart there is fear for what is to come, I am happy with the days we are having now. Opening my eyes in the morning and there he is beside me.Our doctors (we live in the Netherlands) told us that when the stent is working well, even if the cancer process is going on, we might have a while. We decided we will live these days, weeks, months and do the things we enjoy.I hope and wish for you that you can do the same. I am thinking of you and respect you for your brave will. I hope you can keep me up to date how things are going with you.Much love, Iris.  Pamngreenvillesc Sat, 14 Jul 2007 00:00:00 GMT Iris,Thank u for your message!  Yes....I (and your husband) are in a good stage right now but we both know it can all come crashing down at any time.  I am not certain about what actual Stage I am in right now and frankly, really don't want to know!  All I know is right now, I am no longer yellow, with extreme fatigue and no longer itch.  I think back to how many months I would scratch just every part of my body especially in the middle of the night.  Awful itching.  If we count those months of itching, then I have had this beast for at least almost a year???I had to retire and now have just about the cleanest house around.  People see me on the street and marvel that I really am ill.  I guess the 2 metal stents are doing their job.  Doctors have told me that chemo is not in the cards.....just go home and get some of that quality of life.I cant imagine going this alone....as many have to do.Again, thanks and I will be on here from time to time.  PLease let me know how your husband is doing.  Wouldn't it be nice to see Christmas?pamngreenvillesc     Pamngreenvillesc Sat, 14 Jul 2007 00:00:00 GMT  On 7/14/2007 Pamngreenvillesc wrote:Iris,Thank u for your message!  Yes....I (and your husband) are in a good stage right now but we both know it can all come crashing down at any time.  I am not certain about what actual Stage I am in right now and frankly, really don't want to know!  All I know is right now, I am no longer yellow, with extreme fatigue and no longer itch.  I think back to how many months I would scratch just every part of my body especially in the middle of the night.  Awful itching.  If we count those months of itching, then I have had this beast for at least almost a year???I had to retire and now have just about the cleanest house around.  People see me on the street and marvel that I really am ill.  I guess the 2 metal stents are doing their job.  Doctors have told me that chemo is not in the cards.....just go home and get some of that quality of life.I cant imagine going this alone....as many have to do.Again, thanks and I will be on here from time to time.  PLease let me know how your husband is doing.  Wouldn't it be nice to see Christmas?pamngreenvillesc    Hello,Up till now my husband has never been on this message board. But your mail I wanted him to read and he recognized you as a drop of the same tap.He had this terrible itching for about 1 - 1,5 month. The stent (he has one) immediately brought relief. We were curious why you had your itching so long. Did you not see a doctor, or did they not recognize the problem?Last week he had a stent-control. And the specialist told us a thing that put a smile on our faces. The stents have an average lifetime of 3 months. But that differs per person. For one person the lifetime is 6 days, for another 1,5 years. So we (and I hope you too) are going for the 1,5 years and we will send each other Christmas greetings ..... as you mentioned.Enjoy your week on the beach. We'll be thinking of you.Kind regards and all the best, this time also from my husband Peter,Iris. Flower1 Mon, 16 Jul 2007 00:00:00 GMT Iris and Peter,Stent control?  Tell me more.  What is done at this time or is it just scans?  I suffered with the intense itching for way too long due to stupidity on my part.  I have asthma/allergies and always did seem to suffer with dermatitis or excema......I never (nor did my skin doctor) see it as anything other than that.  Only when I turned yellow did I go down that different road!  My job was stressful and figured maybe that had something to do with it.....my stubborness and insistency in seeing it as being caused by something else has a lot to blame.one more week till I feel the sand in between my toes.Pam    Pamngreenvillesc Mon, 16 Jul 2007 00:00:00 GMT  On 7/16/2007 Pamngreenvillesc wrote:Iris and Peter,Stent control?  Tell me more.  What is done at this time or is it just scans?  I suffered with the intense itching for way too long due to stupidity on my part.  I have asthma/allergies and always did seem to suffer with dermatitis or excema......I never (nor did my skin doctor) see it as anything other than that.  Only when I turned yellow did I go down that different road!  My job was stressful and figured maybe that had something to do with it.....my stubborness and insistency in seeing it as being caused by something else has a lot to blame.one more week till I feel the sand in between my toes.Pam   Hi Pam,The stent control is mainly a blood control matter and a talk afterwards with the specialist. They can see the stent gets blocked when the blood changes. In Peters case the blood was better than before. He also had the feeling that things are quit well at the moment, since he has more appetite. After the week in hospital doctors had told us he would not gain weight anymore (he lost 10 kilo's on a weight of 68 kilo's), because his body would take all the energy by fighting the cancer. But today he weighs 64 kilo's, so he (we) gained 5 kilo's back.The Netherlands has a couple of small islands north of the country. We too look forward to spending a week there, on the beach and in the small villages. Only we wait till the weather gets nicer. When our feets are in the sand we will greet you :)Love, Iris and Peter. Flower1 Tue, 17 Jul 2007 00:00:00 GMT Hi here, don't worry how long the oncologist says you have... 2 years ago John my husband was diagnosed with Bile Duct Cancer and they told me not to expect him to live more than 6 months...we had the best Christmas ever, loads of friends and a huge party thinking it would be his last...it was hard to try and better the party last Christmas - he was still going strong, eating drinking and partying.. now we are in July and up until a few weeks ago he has been doing wonderfully - tired maybe - but okay - then suddenly he has developed a problem with his intestines not working properly and he's currently in hospital - don't know what they will do as hard to get answers sometimes - still feel confident he'll be bouncing back home soon and I'm already planning this Christmas party hajaris Wed, 18 Jul 2007 00:00:00 GMT Hello everyone, My name is Christina.  I have been coming on this site for about 2 months and enjoy hearing other peoples stories.  Sometimes the stories make me burst into tears and sometimes they make me want to jump for joy.  I do in one sense understand people who accept this disease as a death sentence and enjoy the rest of their time with their family but for me I say fight as hard as you can.  When we found out my boyfriend had Cholangiocarcinoma with a tumor 8.6 CM, they told us there was nothing they could do for him and sent him home with one internal stent on the left side of the liver and one external stent on the right and a bag of pain medication and told us to enjoy the rest of his life with his family.  He was only 29 years old and has a daughter 6 at the time.  We could not accept this and contacted every hospital to get different opinions.  We did finally find a doctor Nicholas Nissen, M.D. at Cedars- Sinai hospital in L.A. that was able to help us and took a chance with him and performed a 16 hour surgery removing all cancer.  Anyway, what I am saying is do what you feel.  If you feel this is your time, then do so and I pray for everyone of you patients and caregivers but if you don't fight for your life, who will. Don't just pray for a miracle, Expect one. WITH ALL MY LOVE AND PRAYERS GOING OUT TO ALL OF YOU. CHRISTINA. Christina23 Wed, 18 Jul 2007 00:00:00 GMT Christina~How wonderful a story!!!!I want to expect a miracle for my Mom!!! Thanks for the encouragement!Beth Njtwinmom Wed, 18 Jul 2007 00:00:00 GMT Thanks Beth.  I hope it helps.  Also read Keep the Faith to read all of what he went through and how everyone told us to expect the worse.  Chances of survival were slim. I didn't.  I expected my miracle and I truly feel blessed. I will expect a miracle for your mom.  My love are prayers are with you. Christina Christina23 Wed, 18 Jul 2007 00:00:00 GMT Thanks and continued blessings to both of you.Beth Njtwinmom Wed, 18 Jul 2007 00:00:00 GMT  On 7/18/2007 Njtwinmom wrote:Thanks and continued blessings to both of you.BethWe all have a common thread...bile duct cancer...but we are all so different at the same time....Bile duct cancer is one bad boy....and that's the bottom line.  I cant allow to get my hopes up.  My plan for this journey is to keep on making my plans to "getaway" and be with the ones I love.  I will remain as positive as I possible can.Regards,Pam  Pamngreenvillesc Wed, 18 Jul 2007 00:00:00 GMT What is TACE?  My husband will start on Xoleda next week, orally, then after radiation he will have IV chemo.  Thanks for any info.On 7/13/2007 Robynh wrote:My husband has cholangiocarcinoma, unfortunately he doest have that great attitude. He is bitter and angry.  He has a tumor (Bob) about 14 cm that now has some company. Chemo no worky ! We were sent home with "enjoy the  rest of yyour life"  but went to U W which has all sorts of ideas, TACE and ressection etc. We will find out about these choices this week.  So now that you planned how to die with some control, consider fighting real hard for treatment.  MD Anderson hosptal in Tx on cutting edge, but in your area there are probably lots of centers to consult with. And no 2 oncologists think alike. That is frustrating at best. You need to go out on a limb and take some risks and find  oncologists that are willing to go there.  Good luck !  ranchbara Sat, 21 Jul 2007 00:00:00 GMT Hello Everyone,   This is Pam's son David and I just wanted everyone to know that My mother has now passed away of the Bile Duct Cancer.  It was short lived and for any of you that have it spend as much time with love ones as you can.  My Mom was basically fine one day and a few days later she was bed bound and then couldnt talk and passed away on 08/24/2007. She made it 3 months 1 day from being told she had Bile Duct.  I thank you all for responding to my Mothers messages.  I remember she was thrilled that there were others out in this world with the rare Bile Duct Cancer. If any of you would like to talk with me please feel free to email me--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--   I do not know her login information for this website and I will be donating her computer soon. So I will not have access. David Pamngreenvillesc Sun, 26 Aug 2007 00:00:00 GMT  On 8/26/2007 Pamngreenvillesc wrote:Hello Everyone,   This is Pam's son David and I just wanted everyone to know that My mother has now passed away of the Bile Duct Cancer.  It was short lived and for any of you that have it spend as much time with love ones as you can.  My Mom was basically fine one day and a few days later she was bed bound and then couldnt talk and passed away on 08/24/2007. She made it 3 months 1 day from being told she had Bile Duct.  I thank you all for responding to my Mothers messages.  I remember she was thrilled that there were others out in this world with the rare Bile Duct Cancer. If any of you would like to talk with me please feel free to email me--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--   I do not know her login information for this website and I will be donating her computer soon. So I will not have access. DavidDavid, I am so sorry to hear your mum passed away so soon. She was so full of spirit and strength. I have mailed to her a couple of times, as my husband Peter fights the same cancer. And I came to respect her for her attitude.I hope you will keep loving memories of your very brave mother and wish you strength and all the best,Iris.  Flower1 Mon, 27 Aug 2007 00:00:00 GMT My wife 48 is diagnosed with cholangio/gall bladder cancer one month ago at stage iv. consulted many surgeons and body would perform surgery secondary to large tumor masses in liver and local lymph nodes. I have not consulted Dr. Nissan at cedars-sinai yet. she is getting chemotherapy for three weeks. Please respond with any suggestions or thoughts. mehndiratta Sat, 22 Sep 2007 00:00:00 GMT