1

(7 replies, posted in Members' Cafe)

Like it too.  Looking forward to a picture of the newly revised Duke.
Hugs,
Marion

2

(51 replies, posted in Introductions!)

Aiste....seems that your Dad's recovery is right on par.  Great news.  Remember, each day brings along a bit more progress.
Hugs,
Marion

Agree with Lainy.  Please continue to fill up the "good news" section.  We love it, we need it and we hold each posting deep in our hearts.
Hugs,
Marion

4

(3 replies, posted in General Discussion)

Nancy....so nice to see you back on this site, but baffled as well by the recurrence of this cancer.  I think the majority of us have a tendency to focus on the CA 19-9 tumor markers, as it provides something "concrete", but it can be misleading as the rise can be related to other factors as well.  But, then you know that already.
I am wishing for total success with the completed treatment and that you can put this behind you again.
Hugs,
Marion

5

(188 replies, posted in Introductions!)

Matt....hang in there...fingers are crossed for the best news heading your way
Hugs,
Marion

6

(14 replies, posted in Introductions!)

Liz.....looking forward to hearing from you real soon.  Good luck and count on many special vibes heading your way. 
Tons of hugs,
Marion

7

(16 replies, posted in Members' Cafe)

Duke...my heart is with you and your family. 
Hugs,
Marion

Mguaragna.....a tidal wave of good wishes for a quick, consistent recovery.  My thoughts are with you. 
Hugs,
Marion

9

(11 replies, posted in General Discussion)

Kris......this relentless cancer!  We have had thousands of reports and yes, Mark's case is the first on this site in regards of this sort.  Hoping and wishing and for the chemo to eradicate it once and for all.
Hugs are heading your way,
Marion

Thanks, Gavin.  Interestingly enough, patients from other countries are allowed to send blood samples if  "they sign the consent forms."   
Well, we will find an answer.  This is an important study and I hope for it to be successful.
Hugs,
Marion

Thanks, Gavin.  I am aware of the developments so far and participate in the e-mail conversations mentioned by Helen.   We will discuss further at upcoming ASCO when we meet in person.     Ironically though, one UK patient received the kit and was able to mail back the blood sample.   Hoping that if it works for one, it will work for others as well.
Hugs,
Marion

Please take a look at the participating institutions by scrolling down:
http://cholangiocarcinoma.org/professio … nic-study/

Various institutions from many different countries, UK included.

13

(51 replies, posted in Introductions!)

Ice Tea.....I too am trilled to hear of the positive outcome of the surgery and wish for a speedy recovery.  In addition to all the wonderful responses already received I wanted to mention for your Dad to gently hold a pillow against the abdomen while coughing.  He will be asked to frequently clear his lungs  and the pillow helps with the discomfort of doing so. 
Hugs,
Marion

14

(11 replies, posted in General Discussion)

sandy.....seems that you are doing everything right other than elevating is legs as often as possible.  You might also want to speak with the physician re: your husband's fluid intake and to what amount.
Hugs,
Marion

Thought to revive this thread.  Thank you to all the volunteers participating so far and hope to encourage others to do the same.

http://cholangiocarcinoma.org/professio … nic-study/

Thanks a million
Marion

Agree with Duke. Perhaps at some time, you may want to have access to the paraffin preserved tissue for additional pathology studies.
Hugs,
Marion

Hi Abby....gladly we will help you with your cutting and posting.  I have mailed you a personal e-mail. 
Hugs,
Marion

You may want to take a look at our home page for important information pertaining to your diagnoses:

http://cholangiocarcinoma.org/newly-dx/

and an informative video designed to help you understand and how to treat the three types of Cholangiocarcinoma :

http://cholangiocarcinoma.org/three-typ … oma-treat/

Hugs,
Marion

19

(24 replies, posted in General Discussion)

Fred.....a big, huge congratulations on the surgery and tons of good wishes for the recovery.  Although it is an extensive surgery, each and every day will be better for you son (and you.)
Being that your son's digestive tract is re-routed, some foods will agree with him better than some of the others.  It is likely that fats may be more difficult to tolerate.  When ready for regular food, high protein meals, spread throughout the day, will allow him to regain his strength, but much of it is trial and error and each and everyone experiences different symptoms.  Perhaps some of our members will share their thoughts as well. 
You will have to await the outcome of the pathology report, but the depending on the results of the "margins" further treatment may be recommended.  Even with "clear margins" the discussion (most likely) will lead to adjuvant therapy and whether it should be applied (or not.)
For the time being though, enjoy the fortitude of a great surgery and everything else will fall in place.
Tons of loving wishes heading your way.
Hugs,
Marion

20

(11 replies, posted in General Discussion)

Sandy.....Thought to pull up the link to the clinical trial:
https://clinicaltrials.gov/ct2/show/NCT02071862
and realized that the drug is in pill form.  That's great; it eliminates the lengthy infusion time.   You mentioned 5 completed treatments, but nothing in regards to side effects.  I assume that side effects (if any) are tolerable.  Thinking of you and sending a tidal wave of good wishes your way.
Hugs,
Marion

aa....I too am sorry to hear of all your dear Dad has endured.  Agree with Lainy in that you should be informed about his current condition.  Perhaps the medications are causing the sleepiness.
Tons of good wishes are heading your way.
Hugs,
Marion

I would be sure to speak with the physician beforehand followed by watching closely the waivers to be signed prior to admittance and definitely prior to surgery. 
Hugs,
Marion

AnneS....a warm welcome from me as well.  Thank you for sharing this important development and "miracle" in your husband's progress with this disease.  We know that Lynch Syndrome can lead to the development of Cholangiocarcinoma.   I wonder about the  genetic alteration caused by Lynch  and whether, in some way, it influences your husband's fantastic response to the immunotherapy drug?  With time we will have more answers.
So glad you have joined us and look forward to your continuous interaction with this fantastic group of people. 
Wishing for the absolute best.
Hugs,
Marion

There always is more to a story or to what we think to understand.  This article is focused on the limitations of tumor gene sequencing:
http://www.dddmag.com/news/2015/04/tumo … er-therapy

Interesting, Melinda.  The mechanism of cancer development is so very complex and continuously eludes the rational of our thought process.  The absolute good news is that research moves forward.