1

(7 replies, posted in Introductions!)

Melinda -
I've been on Gem/Cis, two weeks on/one week off/ for 7 months and am now in Cycle 13 - I've had very few side effects during this whole period - I've only had one round of Constipation/Diarrhea which lasted for a little over two weeks and moderate fatigue from time to time - No loss of appetite and no weight loss - So, as I'm sure you are aware, chemo affects everyone differently and everyone has to deal with their situation on an individual basis - Adequate hydration during chemo is, of course, absolutely paramount -
FYI, I'm 81 years old and was diagnosed with Stage IV ICC in August, 2013 - The chemo has apparently stabilized my tumors and they have not been reduced in size or enlarged as a result of all this chemo so liver resection has not been an option -
Good luck -
Don

2

(16 replies, posted in Chemotherapy)

Jason - Thanks very much for your suggestions - I thought I probably should get a second opinion and I guess I just needed someone to confirm it should be done -
I'll set up an appointment at Mayo as you suggested - Again, thanks for your input -

3

(16 replies, posted in Chemotherapy)

II'd eally appreciate it if someone could give me some input in response to my earlier post (No 7 on this string) in connection with my chemotherapy treatment - Thanks very much -

4

(63 replies, posted in Suggestions)

Amen to your comments regarding the Green Bar - It is annoying and doesn't seem to have any useful function -
Also - I've had difficulty with links from the previous site and it appears some links wither don't work at all on the new site or, as I've found with a couple of links, they take me to a different site from the one to which they originally connected - I do hope that issue can be corrected soon because I haven't been able to access several very useful sites -

5

(16 replies, posted in Chemotherapy)

Further to this Chemo discussion - I was diagnosed with unresectable Cholangiocarcinoma in September, 2013 and have been on a Gem/Cis regimen (Max dosae once a week for two weeks with third week off) for the past eight months; just started my 13th cycle - Liver tumors are 8 x 14 mm posteriorly in left lower lobe, 4 x 10 mm posteriorly in the right base, gastrohepatic nodes are 9 x 12 mm and low attenuation left renal lesion laterally is 14 x 21 mm - Dianosis also indicated there may also be a couple of lung mets floating around but that's not definite -
Just had my third CT scan followup a couple of weeks ago and it confirmed there have been basically no changes in tumor sizes and no new tumors since my diagnosis - Chemo has gone easily for me with basically no side effects except fatigue every now and then - I'm 81 years old and in basically good health - Inasmuch as my quality of life continues to be good I plan make no treatment changes always hoping my tumors remain stable - However, my ONC has suggested I consider a second opinion from Mayo or some such more experienced Cholangio group who might suggest a more aggressive treatment program although I suspect he feels we're doing just fine under the circumstances and is only making that suggestion because he feels it is his duty -
I''ve always been absolutely amazed by the knowledge and experience of those who post here and I'd appreciate any thoughts, comments or suggestions you'd care to care to make inasmuch as I'm having difficulty deciding how to proceed -

6

(3 replies, posted in General Discussion)

Marions - I appreciate your very kind response - Thanks -
Regards, Don M

7

(3 replies, posted in General Discussion)

I've been trying to find clinical trials for which I might be qualified - However, I'm 81 years old and it appears clinical trial age parameters basically end around 65 - I'm 81 years old and would appreciate it if anyone can either confirm this or, alternatively, point me towards where I should look -

Jason -
Excellent exposition - Beautifully written - I've only been in this game for six months or so and am still struggling to understand it - I am extremely positive by nature and, although I recently celebrated my 81st birthday, I'm convinced I can beat this beast!!!  Your article reinforces my positive outlook and will, I'm sure, do the same for others -
Life is good and we should all do our best to prolong it and enjoy it!!!
Best Regards

9

(23 replies, posted in General Discussion)

I had a sore spot on the right upper side of my stomach which I discussed with the doctor during my annual physical examination in April, 2013 - No real pain or other issues involved so we completed the physical and thought no more about it - Additionally, the usual blood work was done and showed nothing unusual - Three months later I accidentally hit the spot with a golf club and suddenly realized the sore spot had developed into a fairly large, pronounced lump - Called the doctor who examined the lump the same day, immediately scheduled a CT scan which showed the tumor intertwined around my liver, and then immediately scheduled a biopsy which then resulted in the Stage IV unresectable Cholangiocarcinoma diagnosis - Diagnosis was made in August, 2013 and Gems/Cys chemotherapy (once a week for two weeks and third week off) was begun shortly thereafter and has continued on that schedule right through the present -  Two additional CT's (another CT is scheduled next Monday) have shown the tumor to be stable thus far and it is our plan to continue with the Chemo for the forseeable future -
I am 81 years old and have been as healthy as a horse my whole life - I have had no other symptoms, have had absolutely no Cholangio symptoms at any time, have had no side effects (with the exception of some occasional minor fatigue) from the chemo have had the wonderful care of my wife, five children and eight grandchildren -  Although I was obviously not thrilled with the Cholangio diagnosis it has brought home to our family the importance of counting our blessings and appreciating each other on a daily basis and for that I am truly grateful -

Marions - Thanks vey much - Your post was very helpful and very much appreciated -
Regards - Don

Gavin - Thanks for the post - However, it seems to me I saw a couple of posts  couple of weeks ago about several of the posters on went to a CC Seminar in San Francisco and were either going to post what hey learned there or waitfor more info (e.g., seminar session videos) that they were then going to put online for this site -
I wonder if you could tell me whether any of this has been forthcoming and, if so, where I might find it?
Thanks and Regards - Don M

Thanks Randigb and Gavin for your responses - I've tried your printing solutions and they've worked!!!  I've finally learned the entire "cut and paste" process, the file saving process connected therewith and have successfully printed the things I wanted to save!!!
Little old 81 year old CC guys really can learn something new every now and then if people are patient enough with them!!!
Thanks again for your kind assistance -
Best regards, Don M

Gavin - I hesitate to once again make public my computer ignorance but I have one other question -
I followed your "cut and paste" instructions and they worked!!!  However, when I tried to "save" the information I'd just put on the notepad I discovered I don't know how to save it and how to find it for printing after I've saved it so I'd really appreciate it if you'd be kind enough to provide me with that last piece of the puzzle -
Frankly, I'm embarrassed when I realize I'm so clueless about computer use that I'm obliged to go all the way to Scotland for instructions on how to accomplish a fairly basic computer function!!!
Once again, thanks so much for your help -
Rest Regards, Don

Hi to Lainey and Gavin -

Thanks so much for your responses to my inquiry - They are much appreciated!!!

Gavin, you anticipated my continuing problem after I got Lainey's input - I do not have Microsoft Word on my computer nor did I know how to Cut and Paste so your detailed instructions were a lifesaver for me!!!  Thanks again for your assistance -

I continue to be constantly surpised and amazed by the kindness of people on these discussion boards, their humanity and care, their ongoing willingness to share their considerable knowledge with others and, last but not least, their continuing availability to those who are confused and suffering and to those, such as myself, who need to be taught how to operate their computers!!!

What a blessing!!!

I joined this site last October after my September CC diagnoses and have spent a good deal of time since then trying to educate myself by reading the incredibly knowledgeable posts made by so many on these Discussion Boards - I've tried on several occasions to print various posts for my reference file but have been unable to do so -
I'm a little old 80 year old guy who's admittedly not very proficient with computers and I hesitate to waste everyone's time by asking for help with this trivial problem especially when considering the very important issues involved on these boards -
However, I'd really appreciate it if someone would be kind enough to tell me whether there is a way to print selected posts and, if so, how this can be accomplished -
Thanks for your help -
Don M

16

(11 replies, posted in Good News / What's Working)

Thanks to all of you for your responses to my inquiries - I've been reading posts on the Cholangio Foundation board since last November when I was fortunate enough to find this website - I am continually amazed at the kindness of so many very knowledgeable people who are so committed to providing positive encouragement and helpful answers and information to those such as myself who are lost and confused and need all the help they can get in trying to get their arms around CC - You are all an absolute Godsend!!!  Thanks for being here for people such as me -

Lisa - Thanks so much for the Cleveland Clinic information - If you don't mind I'd like to take advantage of your offer and call you - Please advise when it would be convenient for you - I'm available any time - Thanks again and I look forward to speaking with you in the near future -

17

(11 replies, posted in Good News / What's Working)

I was diagnosed with CC last August with fairly large Tumors (which I described in prior posts last November) involving both the Left and Right Liver lobes and also some nodule mets indicated in my lungs - I began Chemo Gem/Cis in September and completed Cycle 6 (once a week for two weeks and every third week off) a week ago -
I've now done four CT scans - The original done in August, the second done in early October, the third done in late November and the last done last Friday - The second scan showed very minor changes and a couple of small new mets when compared with the original scan - The third and fourth scans showed no new nodules and no growth but also no shrinkage either -
My oncologist is thrilled because my condition is now considered STABLE - He originally planned to have me take a month or two break from the Chemo schedule to give my body a rest - However, inasmuch as I have tolerated the Chemo extremely well (no nausea, loss of appetite, no loss of weight, etc - only a little fatigue for a day or so after each treatment) he agreed we should continue the schedule for the foreseeable future -
So, I guess this is good news!!!
At the risk of overstaying my welcome on this board by writing an overlong post I'd really appreciate a little advice -
I'm in the process of setting up arrangements to get a second opinion because I've never really gotten a detailed first opinion - Frankly, although the CT scans clearly show tumors and nodules I'm not entirely sure my condition has been properly diagnosed - It appears to me that everyone diagnosed with CC has experienced some of the classic symptoms (fever, itching, jaundice, back pain, pain in abdomen, etc) but I have never experienced any of these symptoms now or ever so I wonder about the diagnosis - I'd appreciate any comments anyone might have about this -
My intention is to set up a multidisciplinary second opinion appointment in the near future - I'd really like to set it up at Case/University Hospitals and/or Cleveland Clinic in Cleveland - I'm wondering if anyone can recommend a knowledgeable specialist at either of those facilities -
I apologize for the length of this post and want to herewith thank those of you who have had the stamina to persevere through this tome!!!

18

(6 replies, posted in General Discussion)

Percy - Thanks again for your kind advice - Unfortunately, some family issues arose a few days ago (involving my wife's family and having nothing to do with my CC) and I'm now back to moving forward with getting second opinions -
     As I indicated in a prior post my daughter in Chicago personally took my records to the Northwestern Hospital Interventional group a few weeks ago and they wanted to move forward with a Y-90 procedure - Apparently several doctors in the group looked at my records but the only way I learned what they recommended was from my daughter who got the information from one of their nurses who was very helpful and very knowledgeable but I never saw anything in writing -
     I'm now going to send all my records to MD Anderson with a request that they do an interdisciplinary review but I'm confused as to how this should be done - I'm going to mail all my records (including PET, CT scan discs) and request that they do a second opinion but I don't plan to personally go see them at this point - Can I expect them to give me an opinion on this basis or must I be there in person?  Also, will they give me a written opinion?  Additionally, are these second opinions done on a pro bono basis or should I provide them will my insurance information when I send the records?  I realize I should probably know the answers to these issues by now but I don't know the proper protocol -
     I'd really appreciate it if you'd give me a little guidance on how to proceed - Thanks so much -
PS - I have, as you suggested, sent my records off to my son who is  Radiology Manager at University Hospitals in Cleveland - Don't know why I didn't think of doing it months ago!!!

19

(6 replies, posted in General Discussion)

Hello Percy - I've been reading many posts since I joined this site last September and have noticed that many of the long term participants refer to you by name so I hope you don't mind if I do also -
Thanks for responding to my post - I was hoping you would do so - I've reviewed many of your incredibly informative posts (including your personal very detailed treatment chronology) during the past few months and will immediately review all the links to which you referred in your post yesterday -
Here are my responses to your specific inquiries:
1 - I was unaware of the ROAD MAP post so haven't reviewed it but I will get that done as soon as I finish this post - Thus far, my Oncologist and Dr Ahmed (surgical Oncologist associated with the OHC group)  both agree liver surgery should be ruled out - Reasons for this are the extent of my tumors and my age (80) -
2 - Gem/cis started, as you guessed, on 9/27/13 and you are correct in that my situation after three cycles is STABLE - My Oncologist is very pleased with everything at the moment -
3 - The information you provided in this paragraph was exactly what I was looking for and I will thoroughly discuss this with my Oncologist when I go in on Friday for chemo (2nd treatment of the 5th cycle) - I will also discuss systemic chemotherapy,  targeted therapy and clinical trials with him - 
4 - My tumor marker is, as you surmised, CA19-9 - Also, the first date done should be 8/27/13 and not 3/27/13 - Your excellent suggestion that time is not on my side is well taken and I will send off a 2nd opinion request this week to Dr Jalve at MD Anderson - I will also begin the discussion on Friday with my Oncologist as to beginning planning of viable treatment plans to be used in the event my situation does not show improvement when we do the next CT and Tumor Marker in early February -
5 - I know nothing about the procedures you mentioned in this paragraph but I fully intend to educate myself about them forthwith - Fortunately, one of my sons is Manager of the Radiology department at one of Cleveland's newer hospitals and he tells me they're doing a lot of Chemoembo,  Radiembolization and Cryoablation in his department so I'll get him to explain all that to me!!

You have no idea how much I appreciate your kindness in providing me with all this wonderful information and guidance - You have obviously spent a lot of time and effort accessing and compiling all this and over the past four months I've read many of your posts wherein you've helped many such as myself who are in serious need of help in trying to find their way through bewildering and heartbreaking situations -
Your caring attitude and charitable willingness to assist strangers is truly inspiational - Thanks so much -

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!!!

21

(11 replies, posted in General Discussion)

Thanks for your responses - I followed your suggestions and, of course, they worked - I got the CD's and sent them on to my daughter -
I apologize for not acknowledging your very helpful posts sooner -

22

(11 replies, posted in General Discussion)

I've recently obtained copies of my medical file from my oncologist and have sent them on to my daughter in Chicago - The file contained reports in connection with my two CT scans but did not contain actual CT scan CD's so I'm wondering whether the medical file iis incomplete without them - I also noted the file did not contain blood and lab test results done each time I had chemo treatments -
I''m wondering if the medical file is complete without that data - Also, I'd really appreciate it if someone could tell me how one might go about obtaining CT scan CD's -
I'm sure this is very basic information that everyone should know but, as I've indicated in past posts, I knew nothing about Cholangiocarcinoma or any other kind of cancer until I was diagnosed three months ago so I'm still struggling with learning the things I need to know!!!
Thanks and God Bless -

23

(3 replies, posted in General Discussion)

I've only recently been diagnosed with Cholangiocarcinoma and have only very recently begun to participate in your boards and am sill trying to educate myself so I apologize if my question today is very basic -
It appears to me that most CT report posts on these boards refer to tumor sizes as being in the cm ranges - However, my two CT reports refer to my tumor sizes as being in the mm ranges - It's been a long time since I finished college but I assume mm still refers to millimeters and cm still refers to centimeters - When I first started reading these boards I assumed the mm measurements were smaller than the cm measurements but I'm now confused and would appreciate it if soneone would be kind enough to clarify the situation for me -
Also, there are a couple of references to mL measurements in my reports and I don't understand that term either - Any help you can give me in understanding these terms would be most helpful -
Finally, I am taking the advice of those who suggested I get other opinions and am today picking up copies of my medical files to be used in getting those second and third opinions -
Thanks to you all for your kind acceptance of newbies such as myself and for your wonderful encouragement and assistance in helping me understand the things I need to know in dealing with this new development in my life -

I'm new to these forums (have only been approved to post for a week) so have been surveying all the incredible information available -
I've seen references on other posts indicating CholangioCarcinoma is more widespread in the Middle East and Far East and your post shows shows important research is being done in thos areas - I personally find this interesting because I lived/worked and travelled extensively in Europe, Middle East and Far East during the 1950's, 1960's and 1970's so I'm curious as to whether I may have picked up some of the referenced liver flukes out there!!! 
Thanks so much for your information -
Best Regards, Don

Thanks so much for your very helpful responses to my questions of yesterday evening - As I indicated in my prior posts, I knew nothing about cancer until being diagnosed in September and  will undoubtedly be seeking lots of help from this very knowledgeable community in the future -
I have one other process question - I (along with my daughter) have now outlined my history on the Introductions Board - Neither of us knew anything about cancer before my diagnosis in September and we're now in the process of trying to educate ourselves with the wonderful assistance of those participating on these boards which means we'll be asking lots of questions in the future - Should we put future posts on the Introductions Board or should we now move to the Discussion Board?
Again, thanks so much for your kind responses and for allowing us to participate in your cancer community -
Regards, Don