Forum Replies Created
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 –
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 –
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 –
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 –
Marions – I appreciate your very kind response – Thanks –
Regards, Don M
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!!!
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 –
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!!!
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 –
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 –