Introduction
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Posts
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Dave,
Glad you found this board. It’s alway good to hear from fellow Utah folks. I’m actually kind of jealous in a way……..in that you are operable and are on the transplant list. My CC in inoperable.
Just want you to know that my thoughts and prayers are with you.
Dave,
First, welcome to the best little discussion board. Second, I think it was pretty cruddy of the doctor to give you 6-9 months, I think you should ask him if he can see the winning lotto numbers in his crystal ball. We have many people on this board who were told the same and they are still here and kicking so take what he said with a grain of salt.
It’s great you are on the trial, we will all be hoping and praying for you on your path to a brand new (well, actually, I guess a used model) liver!
Patty
Dear David,
I would like to welcome you to this site. I am sorry you had to come here but I am very happy to hear you are on the transplant list. That is so great. My daughter Lauren who is 25 has CC. She is on Gemcitabine, Cisplatin and 5-Fu. Quite a bit of chemo, right. Anyway, she handles it all very well. She gets anti nausea meds in her IV before chemo. She also takes compazine and ativan. She keeps up on the compazine for a few days after chemo and then doesn’t really need it unless she eats something that doesn’t agree with her. She only takes the ativan before bed. She mostly takes it to calm her down and help her sleep. She also has Zofran, but we discovered it caused her really bad headaches. So she doesn’t take it anymore. I think it depends on the person as how you will be able to handle it. Lauren is lucky that she does well. I hope everything goes well for you. Take care.
-Pam
Dave….for e-mail please scroll to bottom of box, left side, under name of person you would like to reach.
Cathy, thank you for your post. I have read your story at The Telegraph and have the butterflies in my stomach. Since my post yesterday I have had a huge feeling of support. Eventhough I have a wonderful support group of friends and family, I have at times felt a little alone since my diagnosis. I am a little lost for words right now but I so look forward to emailing and talking to you soon. How do I get your email address?
Thank you so much.
Dave
Dave-Welcome and sorry you had to find us. I am a CC survivor, I am cancer free 2 years thanks to 2 liver transplants!! I have a remarkable story to share with you. I am alive because of God, 2 strangers and Dr. William Chapman st Barnes-Jewish Hospital in St. Louis MO.
Dave, like you I was basically healthy, just itchy. I was diagnosed by an ERCP (I ended up having 9 total while waiting.) My trial was intravaneous gemcidabene for 8 weeks and then 6weeks of 5 days a week radiation, while wearing a chemo pump with 24 hour a day 5FU chemo for the same 6 weeks of radiation. I then has surgery to make sure it hadn’t spread and was placed on transplant list Jan29,2009 I took mega doses of XELODA (24 pills a day) while waiting.I received my first liver May 24, 2009. I had two “fake liver” calls during that time, one time I was actually being wheeled into the operating room. My MELD score kept increasing because the longer we wait the sicker we are supposingly. I never had the “lifetime movie” expierence, I managed all my naseau with 3 types of meds (Adavan, Compazine and Zofran). I also “crawled into my recliner” at the end of radiation and that was pretty much where I stayed. I was hospitalized several times because of the stents. Fatigue was the main sympton amd the longer I waited the more tired, but I was never bed ridden.
I would love to talk to you and help answer any questions. Please feel free to email me or call 618-567-3247. You can also read my story at thetelegraph.com under christmas miracle. (I also keep it posted on my FB page Catherine Sims Dunnagan, I also have another CC transplant story posted). I have so much to share with you about being a transplant patient I look forward to hearing from you.
Dave there is HOPE, and you are truly lucky to be able to qualify for this trial.
Lots of prayers-CathyHi Dave,
I had 6 months of Gemzar chemo (1x a week for 3 weeks and then 1 week off). I did get tired and we had to switch up my nausea meds, but finally settled on Ativan, which works for nausea and also for anxiety..double goodness! Try and stay hydrated and if you need to, baby yourself. I worked through all but the last round and a half of chemo at my sedentary desk job (no hard labor for me!) and went on a cruise 2 weeks after my last chemo.It’s not a picnic, but I found that the side effects were manageable.
Hang in there!! May 2012 bring everything you need for good health!!
Happy new year.
-Randi-Hi Dave….a warm welcome and a Happy New Year to you.
Our jathy will be around real soon as she has lot’s to tell about her liver transplantation, but I also wanted to point out a few others who have blogged about it on our site. In fact, another Dave has received his transplant at the very same institution you are being treated at. I am glad that you have found us – no one should have to be touched by this disease without the support system on hand….our site.
Good luck and all my best wishes,
Marionhttp://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3729
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4886
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4993
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5631
What ever you like to do. We have a ‘Good News Section’ and a ‘Members Cafe’ (I use that one mostly) just look at the choices on the home page and what ever fits works. Oh and ‘General Discussion’. We are glad to hear from you any way you choose. My concern is that the posts don’t get lost in a thread they may not be seen in. You have found the place with us as we really care and you are not alone here.
Thank you Lainy. Support is a great RX as well. Thanks again. Do I keep posting to this post with updates or do I start other posts?
Thanks
DaveHello Dave and welcome to our awesome family! How exciting that you are on the transplant list! My goodness that is the best news ever! We get very excited around here when we hear surgery or transplant! You have a wonderful attitude and that is better than any RX. In case you get any itching of any kind again, we used a cream called Sarna and you can get it at Walgreen’s or CVS. Worked great for Teddy’s itching. Please keep us posted and I am wishing for the transplant and a healthier year for you in 2012!
Gavin, I have been taking Ativan and Zofran. They have been working fairly good. I think the aggressive double treatment of the radiation and the chemo has made it a little more uncomfortable than just one or the other. Yeah the itch was maddening, and so far probaly the most worst side effect of anything to date.
Thanks
Dave
Hi Dave,
Glad to hear that the stent is working and that the jaundice and the itching is gone now. I know that my dad felt so much better once his stent started working and his itching stopped. The itching drove him mad and I’m sure you can relate to that. Are you taking anything for the nausea? If you need them, there are a load of meds out there that can help with nausea.
Best wishes,
Gavin
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