CancerCompass message board discussion started by DWsLittleGirl on 3/13/2008 http://www.cancercompass.com/message-board/message/all,21955,0.htm Wed, 09 Jul 2008 00:00:00 GMT Wed, 09 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Everything we've read and been told tells us that this is a rare cancer... if that's the case - does it seem unusual to anyone that at least 3 people within a 10 block radius in a town of 1400 people would come down with these type of tumors?  Has anyone else heard or experienced this type of frequency??There seem to be an extraordinary amount of cancers for such a small town... and not just Cholangiocarcinoma.  In my family alone, my mother is fighting her second cancer (Bone; first time was Breast Cancer 25 years ago), my dad was just diagnosed with Cholangiocarcinoma and I had Leukemia (ALL) 23 years ago.Dad has his first treatment today... actually in about 30 minutes or so.  He'll be taking Gemzar too (seems like that is one of the drugs of choice per other posts I've read).  We haven't been given much hope for him... but I'm still praying for a miracle. DWsLittleGirl Thu, 13 Mar 2008 00:00:00 GMT Hi,I was stunned when i read that 3 in a small redius that you described.  Amazing and also worth having someone in research look at.  I see where your dad will have gemzar.  My husvband had that too and had no results .  Our onocologist sent us on to fox chase in phila.  To a clinical trial.  Again no  turmor shrinkage.  I then searched at all the major hospitals for someone to help.  From johns hopkins to mayo.  No help or hope for anything.  Ed was in good health and working then,.  We then got the call from dr. T. Clark gamblin from umpc, in pittsburg, pa.  Great hospital and excellent care.  We could at least breath.  They had ed receive chem embolization every 8 weeks.  Slowed the growth,.  I would suggest you look into this place.  Ed was diagnosed 2o months ago.  He is having a tough time . Had fluid drained from his stomach 2 days ago. 8.2 liters.  Twenty pounds,  this disease has crushed our lives.  He is now 58 and just retired .  God bless  maxamillion Thu, 13 Mar 2008 00:00:00 GMT  On 3/13/2008 DWsLittleGirl wrote:Everything we've read and been told tells us that this is a rare cancer... if that's the case - does it seem unusual to anyone that at least 3 people within a 10 block radius in a town of 1400 people would come down with these type of tumors?  Has anyone else heard or experienced this type of frequency??There seem to be an extraordinary amount of cancers for such a small town... and not just Cholangiocarcinoma.  In my family alone, my mother is fighting her second cancer (Bone; first time was Breast Cancer 25 years ago), my dad was just diagnosed with Cholangiocarcinoma and I had Leukemia (ALL) 23 years ago.Dad has his first treatment today... actually in about 30 minutes or so.  He'll be taking Gemzar too (seems like that is one of the drugs of choice per other posts I've read).  We haven't been given much hope for him... but I'm still praying for a miracle.Hello...You are very correct...this cancer is very rare.  I noticed you did not discuss anything of what the doctors had to say.So lets start off with this question...where on earth do you live.  They really don't know the specific cause, but water may be the problem.I think you can get some input if we knew a little more about the situation.Thanks and good luckLeonard from Alamo, California Solutions Thu, 13 Mar 2008 00:00:00 GMT Sorry to hear about the incredible rate of cc in your area. I read on this website of veterans who served in vietnam having a very high rate of cc compared to the general public and it was ascribed to parasites that were in that climate. Sometimes when there is cancer clustering it really can be from the water or some other environmental factor. Another very good website dealing specifically with cc is cholangiocarcinoma.org. I have found the members there (as well as here) helpful, well informed and incrediblely compassionate. Be well and good luck. Bayla Thu, 13 Mar 2008 00:00:00 GMT  On 3/13/2008 DWsLittleGirl wrote:Everything we've read and been told tells us that this is a rare cancer... if that's the case - does it seem unusual to anyone that at least 3 people within a 10 block radius in a town of 1400 people would come down with these type of tumors?  Has anyone else heard or experienced this type of frequency??There seem to be an extraordinary amount of cancers for such a small town... and not just Cholangiocarcinoma.  In my family alone, my mother is fighting her second cancer (Bone; first time was Breast Cancer 25 years ago), my dad was just diagnosed with Cholangiocarcinoma and I had Leukemia (ALL) 23 years ago.Dad has his first treatment today... actually in about 30 minutes or so.  He'll be taking Gemzar too (seems like that is one of the drugs of choice per other posts I've read).  We haven't been given much hope for him... but I'm still praying for a miracle.Thank you for your post.My sister has Cholangiocarcinoma, but I am still not convinced that it is not Pancreatic Cancer-just my non-medical opinion. I understand this cancer is rare, and to have found several cases in a small area is more rare. In the area where my sister lives, less than 2 tenths of a mile, my sister-in-law had ovarian cancer and passed, my sister bileduct cancer, still living, and a neighbor in between the two with breast cancer- (mastectomy) still living.My sister was unable to complete the 7-week Gemzar treatment, and was able to get 4 out of the seven. Her white blood count was too low, and then her strength was gone and could not continue. She had her plastic stent replaced in her bile duct with a metal one. She ended up in the hospital at week 7 and could not continue with chemo due to weakness. The docs say the chemo was not effective for her as her CA-19-9 has increased rather than decreased. So......more prayers and more HOPE!Hope is a must and miracles a possibility, as it is with your father.God be with you, your dad and your family during this trial.Blessings,My sister's voiceeaglessoar   eaglessoar Fri, 28 Mar 2008 00:00:00 GMT