Topic: Good News

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!!!

Re: Good News

My husband has never had any symptoms either but his biopsy definitely confirmed  intrahepatic cholangiocarcinoma. I definitely recommend getting a second or third opinion even if it to just confirm that you are taking the right action at your current facility.

I'm sorry that I don't know anyone at the two facilities you mentioned to recommend.

Good luck and congratulations on being stable.

Re: Good News

Sounds like things are going good. Stable disease sounds pretty good to me. I also think that getting a very thorough second opinion is a wonderful idea. You can never have too many opinions.

My husband had very few symptoms until he jaundiced so bad then he had the fatigue and weight loss to go with it. His was a Klatskin's tumor but I understand that the symptoms can me more vague for intrahepatic if there are any at all.

Don't worry about overstaying you welcome here. That is what we are here for.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Good News

I agree that a second and maybe even third opinion are a good idea.  With  interhepatic CC  there are often no noticeable symptoms until it is greatly advanced.  The fact that you have no known symptoms is a good thing as that may mean it was found earlier than most and stable is always a good thing.

No posts are too long, the more information given the more help you will receive. 

I also am not familiar with the facilities you mentioned, but hope you are able to get some good insight on what is actually going on.

Take care and let us know what you find out and how things are going.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Good News

Stable is great news!
I'm repeating what others said about Intrahepatic CC. Not unusual to have no jaundice/duct blockage/itching with ICC. My sisters only symptom was temporary sharp pains in upper rt abdomen at night if she slept on the "wrong side". It's been 18 months since diagnosis and she has kept her weight up, has a good appetite and still only has intermittent very short lived pain but does have some fatigue (more when she was on day 3 after chemo). Unfortunately, the CC has advanced and she is finally ready for a 2nd opinion. Good that you're doing it soon. Knowledge and expert ideas are always welcomed with this cancer but I've read over and over that you should seek the opinions from the places that see the majority of cases of this rare cancer. Sometimes you can just send records and scans and get "remote" opinion before traveling.
Sincerely,
Willow

Willow

Re: Good News

Willow, I think you are terrific. I have not been on a lot lately due to some physical problems but I think you are the "cats meow". You give such good advice and are so kind.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Good News

Thanks, Lainey. Keeping you in my prayers too.

Willow

Re: Good News

I have received my treatment at The Cleveland Clinic by a multidisciplinary
team for the last three and a half years. I would highly recommend this group of doctors, Dr. John Fung(surgeon), Dr. Bassam Estfan(oncologist) and Dr. Kevin Stephans(radiologist). If you would like to talk please call me at 330-903-6868.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Good News

Hi Don,

Please, do not worry about overstaying your welcome on the board by writing a long post, that's simply not possible! No apologies are ever needed for the length of any tome!! So go ahead and post away as much as you want to.

Stable is a good word around here and we like that lots. And great also that you handled the chemo so well and that you are going to continue with it instead of taking a break. Hopefully you will continue to handle it equally well and that it works for you. Seeking a further opinion form those experienced in diagnosing this cancer is a great idea and Lisa has given you some contact there.

Good luck with that and please let us know how you get on.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Good News

Hello Don, we LOVE the word Stable! I am going to refer to Lisa Craine's post as she has been through a lot and I have heard about the team she is using and Dr. Fong seems to be one of the best! Like the others said we are big believers in 2nd and 3rd opinions. Best of luck to you, you are doing the right thing!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Good News

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 -

Re: Good News

Hi Adjuster11,

If you wish to seek yet another opinion, you might want to speak to a wonderful liver surgeon at University of Michigan named Dr. Chris Sonnenday. He is very approachable and would answer an e-mail from you. You can mention my name (Pam Kunklier) if you should decide to do so. I wish you all the best.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.