Four months ago I asked my family doctor about a funny lump on my stomach - She ordered a CT scan which resulted in my lump being diagnosed as ICC - None of my family or friends had any idea what we should do next so my youngest daughter started doing intense research and found your wonderful resource - We signed on and got lots of very good advice, which we've followed, as to what we needed to do to begin to get our hands around the situation - However, it appears to me we have not yet developed a definitive treatment plan so I hope the many knowledgeable members of this board will be kind enough to provide me with some leadership -
My Oncologist, Dr Edward Crane, is affiliated with OHC which is a large multifaceted medical group here in Cincinnati - My wife does hospital revenue cycle coding audits here and aound the country and advises me that the OHC group and Dr Crane are highly thought of in this area - He is very pleasant, knowledgeable and professional but I don' know how much experience he has with ICC -
My treatment, thus far, has consisted of four Gem/Cis cycles (once a week for two weeks followed by one week off) and we started the fifth cycle last Friday - I have had absolutely no side effects from the Chemo at any time - It appears to me that Dr Crane plans to complete 6 Chemo cycles and then discontinue the Chemo treatment - We haven't discussed what will be done after that -
My original CT scan (done on 8/30/13) briefly contained the following descriptions - "...extensive infiltrative mass involving the liver which is associated with nodular lestions extending throughout much of the left hepatic lobe and involving the anterior segment of the right hepatic lobe - Multiple borderline to mildly enlarged lumph nodes have developed within the left gastrohepatic ligament , porta hepatis and portacaval region whih are compatible with nodal metastases -"
CT scan done on 11/11/2013 - ".....Subpleural nodule located posteriorly within the left lower lobe 8 x 14 mm previously 6 x 10 mm - Nodule located posteriorly in the right base is 4 x 10 mm previously 6 mm - Enlarged gastrohepatic nodes are present - 13 x 14 mm node previously approximately 9 x 12 mm - Low-attenuation left renal lesion laterally is 14 x 21, unchanged -
Mildly enlarged periportal nodes are present - Overall, gastrohepatic and periportal mild adenopathy, slightly increased from last CT - Small lower lobe pulmonary nodules, slightly increased from last CT - Extensive confluent low-atenuation masses throughout the liver most prominent anteriorly - Overall slightly increased from prior study "
CT scan done on 12/26/2013 - "Overall, no significant interval change in appearance of the liver compatible with known biliary neoplastic process - Sigmoid diverticulosis - Unchanged small bilateral pleural-based lower lobe pulmonary nodules -"
In addition to the foregoing we've done three Tumor markers since August - Results were as follows: 3/27/13 - 356; 10/22/13 - 333; 12/13/13 - 450 -
Finally, my blood tests over the past four months have all been excellent with
no noteworthy poblems -
My daughter submitted my medical file, including discs, to the Interventional Radiology group at Northwestern Hospital in Chicago - This was done three or four weeks ago - They felt we should do a Y-90 procedure right away - We didn't do it immediately because I felt the Chemo was working and I wanted to see where it would go before embarking on a new treatment - Also, my wife was not sanguine about the Y-90 procedure because in her coding audits she has reviewed the results of many such pocedures and has seen some really unfavorable outcomes - I am, after all, 80 years old and although I am completely positive that I can handle anything I must admit I am somewhat reluctant to begin new treatments before completing ongoing treatments that appear to be working -
So, I must admit I am confused and somewhat uncertain as to what should come next - I am not terribly enthusiastic about stopping Chemo and waiting to see what happens without treatment of any sort - I'm also confused about the reults of the Chemo since the tumors don't seem to have gotten either larger or smaller - I've read about all sorts of treatments that are being tried but I don't seem to be able to determine what, if anything, should be tried first and what upsides or downsides are connected to each treatment -
As I indicated elier, I have always been as healthy as a horse, I am very positive, I feel great and have no pain of any kind (which makes me wonder at times whether I have been correctly diagnosed) and I am willing to do whatever needs to be done to prolong my health and my life so I can enjoy my great grandchildren (which I don't have yet!!) -
Sorry I've gone on so long with this tome - If anyone has had the stamina o read through this whole thing and have any suggestions, I'd really appreciate it if you'd pass them along to me -
Thanks to all and Happy New Year!!!