http://www.cholangiocarcinoma.org/punbb cholangiocarcinoma.org :: discussion boards en http://backend.userland.com/rss http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19396#p19396 19396@http://www.cholangiocarcinoma.org/punbb mahipal33 wrote: Dear Asif as per your letter the way it looks your brothere might have diffuse metastasis in the liver and lymphnodes which might have been the reason for aborted attempt of surgery at chennai. if you can send me the reportsof  ct /mri /mrcp/ any biopsy with HPE reports  then i can comment on the case . any way  my good wishes r with your brother in this dark arena of the disease . i hope for a good light  of hope at the end of the tunnel of cc Dr.Mahipal reddy Dr.Mahipal reddy, Thanks for reply and prayer for my brother. I can send you all the reports through email. Kindly contact me through email at theasifiqbal@gmail.com or send me your email. Thanks Regards Asif Sat, 04 Jul 2009 00:27:09 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19395#p19395 19395@http://www.cholangiocarcinoma.org/punbb Dear Asif as per your letter the way it looks your brothere might have diffuse metastasis in the liver and lymphnodes which might have been the reason for aborted attempt of surgery at chennai. if you can send me the reportsof  ct /mri /mrcp/ any biopsy with HPE reports  then i can comment on the case . any way  my good wishes r with your brother in this dark arena of the disease . i hope for a good light  of hope at the end of the tunnel of cc Dr.Mahipal reddy Sat, 04 Jul 2009 00:16:10 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19394#p19394 19394@http://www.cholangiocarcinoma.org/punbb Hi Kay As per Internet searches and my docotrs advices me CA 19-9 test never come eaxctly and very help full some time for a infection the level can be increase you can search it in internet and you can find lot of things about CA 19-9. But here is good news you dad has passed 2 years. Asif Sat, 04 Jul 2009 00:13:38 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19393#p19393 19393@http://www.cholangiocarcinoma.org/punbb marions wrote: Asif.....Phone: (781) 744-2500  Fax.: (781) 744-5743.  You will be in touch with Julie Doyle, the administrator for Dr. Jenkins.  Good luck, Marion Thanks Sat, 04 Jul 2009 00:08:40 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19392#p19392 19392@http://www.cholangiocarcinoma.org/punbb Mario and other members. I want also one thing that here in Pakistan and India Doctors are saying the life of Cholangiocarcinoma patient is 12 to 18 months maximum and my brother has passed 12 months after first diagnosed so they are are saying its enough now your brother life is not more than 4 to 6 months. So I requested all of you can you let me know exactly or atleast as per your expereince and knowledge how much is life expected of cholangiocarcinoma patient and specially after reading my brother case for him. Thanks all of you. Regards Asif Sat, 04 Jul 2009 00:06:56 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19391#p19391 19391@http://www.cholangiocarcinoma.org/punbb I've dealt with cholangiocarcinoma for over 2.5 years and have been unable to find much on the web except some pretty scary info. This site seems to be tailored to people who are actively dealing with our specific type of cancer. I am relieved. Fri, 03 Jul 2009 21:23:56 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19390#p19390 19390@http://www.cholangiocarcinoma.org/punbb Hello Roger....and welcome to our site.  No new growth always is good news.  You seem to be doing so well by being as active as you are; another scan in Otober may be just as positive.  As Lainy said, no one knows.  You are being watched carefully.  Enjoy your golf.  As you have mentioned; the prediction of eight months already has passed and it would make no sense to speculate otherwise.  I am so glad that you have joined us and if I would love to hear more about your golf game. Best wishes coming your way, Marion Fri, 03 Jul 2009 16:29:34 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19389#p19389 19389@http://www.cholangiocarcinoma.org/punbb Hi Roger. No one was born with an expiration date on the bottom of their foot and with CC it is very difficult to give a time frame. We have family here who were given months and have survived years. All we know for sure about CC is that everything about it is different. Teddy will be 77 in October and  next month is 4 years since his Whipple. CC returned a year ago where his duodenum used to be but we zapped it with cyber knife and he too is golfing and wants to go back to work part time. Enjoy your good news and take advantage of every wonderful day you have. Good luck and it sounds like it has already come your way. Fri, 03 Jul 2009 16:03:11 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19388#p19388 19388@http://www.cholangiocarcinoma.org/punbb I have had my second CAT scan following 2 SIRT procedures at Abbott-Northwestern Hospital.  My onc says that the good news is that the scans show no growth after 4 months, but very little reduction in size.  However since I am exercising, playing golf 3 times a week, age 75 so I can do it, and walking regularly that he will wait until early October to do another cat scan and check it out.  Says there is no reason to make me feel bad with chemo treatments at this time.  Curious to know from you CC patients what your time frame was in seeing reduction in tumor.  My largest was 10 cm.  Many small through 5 of the 8 liver sections.  Also I find that onc's are reluctant to discuss life expectancy.  My first diagnosis was 8 months.  I have passed that now with the SIRT procedures. Any comments gratefully received New member Roger Howe Fri, 03 Jul 2009 15:30:46 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19387#p19387 19387@http://www.cholangiocarcinoma.org/punbb Karen...I just read thorugh the posting and realized that I did not address you.  Your comment is important and well received.  Thank you so very much. Fri, 03 Jul 2009 13:40:41 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19386#p19386 19386@http://www.cholangiocarcinoma.org/punbb Tess...hug to you, also. mahipal....anything is possible.  India is not out of the question.  We might see you there. Fri, 03 Jul 2009 11:51:57 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19385#p19385 19385@http://www.cholangiocarcinoma.org/punbb Dear Janet,   We can all agree - the paperwork SEEMS endless, and the emotional struggles we go through every time we have to deal with these things are SO difficult.  Rest assured, though - there IS an end to it - I just kept plugging along, one thing at a time. It has been almost 9 months now, and something came last week from my 403B through my employer - I had to send them a copy of Butch's death certificate (AGAIN), so that I could take him off as my beneficiary, and put my daughter on. That was a setback for me, as I don't like to do it - it just reminds me of something that I don't want to think about! But you will eventually get through the bulk of it. No wonder we're grumpy sometimes! Love - joyce Fri, 03 Jul 2009 09:37:17 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19384#p19384 19384@http://www.cholangiocarcinoma.org/punbb God Bless you and your family. One more angel to watch over the rest of us. I pray God gives you peace and healing in the days to come. Charlene Fri, 03 Jul 2009 08:49:26 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19383#p19383 19383@http://www.cholangiocarcinoma.org/punbb Dear Danielle, You don't need to apologize for your posts.  It is what you are feeling & you need to let it out.  You are right, it is all so new & you can't be expected to feel any differently than you do.  I still keep a radio or TV on almost 24/7 as the quiet is just too much to handle.  Crying is good.  It seems to give some relief & release.  Try to keep busy.  Even getting out for a short walk sometimes helped me.  It is still hard to have to come home alone, but it is what it is. We can't change what has happened to turn our lives upside down and inside out.  We just need to try to go on one day at a time. There are many times I have said I wished we both would have gone together, but I know there is a reason that did not happen and why I am here & he is gone. I just don't know what it is and maybe we will never understand why these things happen. Just remember that you are not alone.  We are all here for you whenever you need us. I will keep you in my thoughts & prayers. Love & Hugs, Darla Fri, 03 Jul 2009 06:15:11 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=19382#p19382 19382@http://www.cholangiocarcinoma.org/punbb Hi Kay, Wonderful news about your Dad & an upcoming 2 yr. anniversary of being cancer free! Great to hear! Someone was just talking about this same thing yeserday on another thread. Per our experience, my Dad's oncologist told him that the three primary diagnostic tools that he looked at to monitor the status of the cc included the bili levels, tumor size and the CA-19 marker.  There are so many unknowns with this cancer!  I'd say continue to keep a close eye and make sure the docs. stay on it. Best wishes to you and your Dad. Tess Fri, 03 Jul 2009 05:39:36 -0700