1

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

Gavin, Kris, Karla and Sara (Willow)…Thank you SO much!  I am trying to convince myself that life is normal now
whatever normal is….:)

Marion..thank you for letting me know about Dr. C.  I truly miss him.  He had such a connection with his patients that is unique and goes beyond surgical skills and knowledge.  Thank you for encouraging me to write.  I have already looked up his address.  I am glad to hear he is happy in  his new position in spite of my trying to convince him that Texas was nowhere near as good a place to live as Maryland (sorry Texans!).  When you see him again, remind him of his fan club in Maryland who owe their lives to him.

2

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

Congratulations!  Just like you, I come and go on this site, but part of what brings me back are the messages of hope and success.  I always looked for those when I was feeling most down.  I, too, just passed the 4 year mark (diagnosis 4 years this month, surgery Sept 27, 2012)..and hope that people reading these messages know that there is indeed hope.  May you keep getting those great reports.
Kathy

3

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

Kris. Thank you!  It is so comforting to know there is a cheering section out there.  I love coming back to this site and recognizing familiar names over the four years.
Lainy. You are right. Time to get those innards under control and show them who's boss.  I am sorry to ear of this continuing struggle and  hope your August appointment gets you more relief.
Big hug,

Kathy

4

(15 replies, posted in Thought for the Day)

Hi Marion. Now I can as another name to my favorite people who have birthdays in July ( son 21st , daughter in law 20th, grandson 12th, mother 2nd as well as Adoption Day 16th for our two youngest).  I join with all the others in wishes for a wonderful new year. We owe you so much.

Kathy

5

(7 replies, posted in General Discussion)

Hello, Sharon,
I had surgery 4 years ago at Johns Hopkins for a Klatskin tumor and was given the choice of chemo or no chemo. At the time my doctor said there was not enough evidence that it was effective. I decided against it. It was nerve -wracking to face that decision.  Four years later I am so far clear. People who have had the chemo-radiation have had recurrences. People who did not have been cancer free and vice versa. It is a puzzle. I think every person's situation is different and their doctors suggest different things.  It makes the decision that much harder. It is a situation where you really don't ever know and that's what makes it hard to live with. In the end you have to do what feels right for you based on your research and doctor's opinions. Good luck and keep us posted.
PS several years ago a man posted that he was 16 years from
His cancer surgery and his doctor still didn't consider him out of the woods!  It's learning to live with that knowledge that is hard!

6

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

Marian..have you heard anything about  "my favorite surgeon?" I do miss him! I don't know if he does any more surgery for cholangiocarcinoma or Is too busy being head  of surgery  The girls are 14 and 15 so I do have to hang around a bit longer for them!  They are great!  The 15 year old just went on an international dance exchange to Europe for a
Month so we were groupies and followed her to Denmark then spent 3 more weeks, 2 with our son, his wife and three young children (who live in Ireland) in a chalet  in the Swiss Alps. Broke the bank but it was heaven. Life is good.
I was so pleased to hear about the new study being done on younger patients.

7

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

Dear Lainy…you have been such a support to all of us for so many years…..I hope you are doing well..last time I was on,  you had a scare..hope that is behind you….xxxxxoooo

8

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

Porter..what wonderful news!  It was good news that kept me going so keep posting.  I am so happy to hear this news.

9

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

4 years ago this month I was diagnosed with cholangiocarcinoma.  I had my scan yesterday and it was good.  The doctor said if I have clear scans for another year, I can go to yearly scans.  I have another one end of January and then one in July.  This will be the longest I have gone.  I know others have had doctors who are less conservative and have gone further apart before now, but in spite of scanxiety, somehow it's been reassuring to have good news more frequently! I hope to see many posts of good news!

10

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

NED is our best friend (No Evidence of Disease).  Keep up the good work!  So happy to hear your news~

11

(14 replies, posted in Introductions!)

These posts DO help those of by giving hope.  Wonderful..and keep posting.

12

(75 replies, posted in Introductions!)

Matt…..it is a tough decision.  I was right where you are….feeling overwhelmed by the surgery and not up to doing chemo/radiation or a trial ( I had to make a decision about the trial within 5 weeks of surgery).  My doctor did not push one way or the other, but my GP leaned toward not doing it.  So I am one that did not do the chemo..but I did not have any invasion either.  There are people on this site with clean margins who did do the chemo and it still came back.  There does not seem to be any reason to why for some it does come back in spite of follow-up treatment and for others it doesn't.  It seems to be the nature of this beast.  It also took seemingly forever for the incision to heal…months really and that was the most bothersome.  I had an incisional hernia which was repaired two years after the initial surgery and it healed quicker.
It really is a tough decision.  Others have posted here who did do the follow-up chemo and many are saying it was the right decision.
We are here for you whatever you decide.  Hug those children tight! I have 14 and 15 year old girls who were only 10 and 11 when I was diagnosed.  I couldn't believe I would not be here for them to grow up.
Kathy
(I didn't know that MRI was a choice.  I always have had CTScans and have wondered about the radiation).

13

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

Waiting for tomorrow's news.  Please let us know.
X0 Kathy

Hi again,
I am so sorry you are having this concern and all the frustration of time elapsing!  It all feels so helpless.  PC = Politically correct…..but we should all be aware( I believe) of where we might bump up against walls and sharing these can be helpful to others.  My first doctor was Andrew Cameron whose father is John Cameron who is presented as the doctor who has done more whipples than anyone else in the world.  He certainly is well-known (John that is)..I have had several friends who have gone to him and not found him personable..but as I mentioned before, if he does the trick, forget the bedside manner.  I am not sure why I was given Dr. Andrew Cameron at the beginning…a very young guy and really specializing in liver transplant which was never presented as an option.  He had never done any surgery for bile duct cancer and therefore would not do anything without the cancer board directive and every time he came back, he said another ERCP…and it always took several weeks to get any news back and then there really was no news ..except not enough tissue to get a definitive answer..etc.  So if for some reason you got Dr. Andrew Cameron, my guess is he is not who you should have.  On the other hand, you might try Dr. Tim Pawlick.  Do you have access to records on line?  If not, sign up for them.  You can send a message for appointment or consult and so far, I have always gotten an answer from them in 24 hours.  There is also a number to call.  Request an appointment. 
Sorry I can't be of any help about relief for your son right now.  But others here who've had more experience will definitely help you. 
Sorry to be long-winded.  We are keeping you in our prayers.
Kathy

Have you tried contacting Dr. Shulick in Colorado?  My doctor whom I adore at JH also left this past fall and I felt abandoned! , but before he left, he reassured me that I could always contact him in Texas if the cancer returns.  I understand so well what it feels like to have the doctor who saved your life ..leave.  We were referred to Dr. Tim Pawlick at JH for continued follow up…he has quite a bio and the nurse practitioner whispered to me that that is the one to go to.  He is NOT Dr. Choti who was very warm, caring and an excellent listener but if he is competent, I guess that's what is important.  Maybe you were being PC to not mention who is doing the follow-up at JH.  If you did not go to Dr. Pawlick you might want to try him as he does have considerable experience and seems well respected in the larger community.  Marion may know of him.

Do NOT give up.  Call Dr. Shulick for advice or try Dr. Choti who is at U of Texas Hospital in Dallas or any of the other wonderful doctors people will recommend here.


Keep us posted.  I know you will hear from others who have much more knowledge than I do.  This is an amazing site.

Thinking of you,
Kathy
PS….I went to someone other than Dr. Choti at JH at first, but after 7 weeks of dallying around with NO progress and no decision, I switched and it made all the difference.  Do not hesitate a moment to switch doctors at JH.

PPS…I am just rereading your posting.  That was exactly my first experience..two endoscopies, a stent which they removed for the second endoscopy and although I had protested the second endoscopy because I didn't want the stent to be removed and replaced, I was told "a piece of cake."  End result…it couldn't be replaced !  Then the same doctor wanted a THIRD endoscopy and a stent put in from the outside.  I switched doctors as this was now 7 weeks from my first appointment and I was getting panicked at letting it go/grow so long.  When I went to Dr. Choti, he was very professional but reassured me that whoever I chose, it was entirely up to me and to not worry about the other doctor. He operated within 5 days and no further endoscopies smile   SO….it really does depend who you get.  Call Dr. Shulick and ask for a referral to one of the other doctors at JH…or who he would recommend as you felt so much confidence in him in the first place.

16

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

Wonderful relief!  Such good news~
Kathy

17

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

So glad that you are feeling more comfortable. It's great when moving your ankles is a big step:). Continues progress please!!!  Keep us posted.

18

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

Thanks again. And to add to my good news. The CA19-9 marker came back yesterday at 16.5. Somehow that relieves me even more as in my naïveté perhaps I think it might catch something before the scan does!  Maybe not:)

19

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

Fantastic news!  I had gone to every 6 months and new doctor has it at 4 months. I see from others that after two years they go to once/year!  I guess every doctor has their own wishes. But good news an keep
It coming!

20

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

Thank you all for your cheers of support.  It is so wonderful to have a group who know the fear and challenges of this disease!  Celebrated 49 years of marriage today!  On to the big one next year smile

21

(43 replies, posted in Surgery, Resection & Transplant Treatment Options)

Porter..Thanks for your post on my site.  I tried to access your caring bridge and my poor computer skills didn't get me there.  Somewhere I have missed what the results of your surgery were.  You mentioned clear margins.  Was that your situation?  That was for me, too, and I know there is a debate about this and the last I heard, (correct me Marion if I'm wrong here), they are leaning toward doing chemo.  I did not have any chemo after my surgery 3 1/2 years ago as my doctor said at that time that the jury was out on the effectiveness.  I was not keen on it either (but who is??)So far so good.
I am wondering myself what the studies are for why it comes back for some and not for others?  Are there different characteristics?  Is it different whether it is extra hepatic or intraheptic or hilar? (sorry if I'm using wrong terms).  I had a klatskin tumor which had been growing for quite awhile (Should have been picked up 1 1/2 years before, but masked by the statin I was taking for high cholesterol). My CA-19-9 was 88 at the time of surgery..I have read here of extremely high counts. Is that any indicator of how virulent the tumor is?
I am so happy to hear that you are back in the swing of things with your family. You are remarkable.  Let us hear what the future plan is for you.
Hugs
Kathy

22

(43 replies, posted in Surgery, Resection & Transplant Treatment Options)

I have been away from the board and just catching with people. Is there any word on how Porter is doing?  Would like to hear the latest leg if her journey as I don't have the Caring Bridge info. Thanks!

23

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

Had my CT Scan today at Hopkins.  Clear!  41 months!  This offsets a lot my sadness that our wonderful Dr. Choti has left Johns Hopkins to head Dept. of Surgery at U of Texas at Dallas. Grateful for
Life !

24

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

Lisa. That is wonderful
News!  We had our surgeries at the same time and both ended up with incisional hernias. I am so happy to hear that you are ready to get that taken care of. With your spirit, you will get through this and move on. You have been an inspiration to me and so
Many others!
Kathy

25

(26 replies, posted in General Discussion)

Hi lisa...
We had our surgeries (first) about the same time.  Last summer my CA-19 marker went from the usual 15/16 to 40 and I was panicked.  Marian told me at the time it was too soon to tell what it meant.  The next test it was 29 and the last two have been back around 15 again.  I ask my doctor why it had gone so high and he said sometimes there is no known reason.  I read somewhere that heat sometimes caused it and other times contamination.  I am praying for you that the answer is one of those.....it is wonderful that the scan is clear!
Love, Kathy