Those of you identified with the  epidermal growth factor receptor EGFR and undergoing treatment, please be so kind and share your information with Aussie.
Thanks a million.
Hugs,
Marion

Julie.......I think it is normal to fear recurrence and alright to accept it.  Your life it perfect in so many ways  especially with the caring and love you have for your little grandsons.  I think that the bigger part is finding ways to manage the anxiety of recurrence. 
I hope others will chime in and share some tips with us.
Hugs,
Marion

3

(5 replies, posted in Introductions!)

Great news, Kathy.  Cisplatin is harsher than Oxaliplatin, hence your side effects may very well be less than what you had been experiencing in the past.  Keeping my fingers crossed for everything good coming your way.
Hugs,
Marion

Caton.....hello and welcome to our site.  Although 7 of 10 oncologists recommend adjuvant (post surgery) therapy, but as of to date, clinical studies have not yet shown the benefit.   Two major clinical trails are conducted;
1.  France:  Gem/Ox
https://clinicaltrials.gov/ct2/show/stu … 7#contacts
2.  Germany:  ACTICCA-1 - Gem/Cis
https://clinicaltrials.gov/ct2/show/NCT02170090

I hope for others to chime in and share their viewpoints leading to making their own, personal decisions.

Hugs
Marion

Minzzi.......it is likely that the blocked stents caused the cholangitis.  Please take a look at our Action Alert asking patients to carry at all times the biliary card:
http://cholangiocarcinoma.org/biliary-e … tion-card/

I don't want to upset your more than already you are, but based on your reports to us, I find your husband's care substandard.  Where is the communication with the physicians?  Someone must have taken charge of your husband's care.

Hugs,
Marion

Jess....I agree with Lainy, a second opinion (or third) would be helpful.  Perhaps another solution can be found and if not so, then you are confirming the current recommendations. 
Hugs
Marion

Science is in the beginning stages of identifying cellular behavior, but it is moving forward with rapid speed. 
Marion

Great advice, Duke.  We will compile a list of steps to be taken.  Perhaps you can put it in order (you are so good at that.)
As we receive further information, the steps to be taken in Europe will be listed as well.  In general, they have socialized health coverage with different sets different guidelines. 
Much to figure out yet, but we will get there.

Katia.....when and if you have a chance to do so, would you please share your healthcare coverage issues with us.  I assume Netherland coverage carries over to patient care in Belgium as well.
Thanks a million.

Hugs,
Marion

Throughout the month of July, we will honor those we’ve lost but NOT forgotten, survivors, and caregivers.

Thanks to a generous matching gift grant, every contribution you make this year will be doubled, until we reach $35,000.

Please read more:
http://cholangiocarcinoma.org/campaign- … cure-2015/

Marion

Katia......so glad to hear of everything is falling into place nicely, bilirubin is dropping steadily and your Dad can continue to gain strength for the upcoming surgery.

I have reached out to an oncologist from Leuven regarding genetic testing however; due to his participation in the ESMO conference, Barcelona, I don't expect an immediate response.
http://www.esmo.org/Conferences/World-G … nal-Cancer

BTW:  Although I am not there in person (attended the 2008 conference) our brochures and other materials are displayed at ESMO.   This is part of our outreach to the global patient/physician/researcher community.  As we know, CCA is not an isolated disease.  It occurs world wide and must be addressed in unity amongst all stakeholders.

Hugs,
Marion

Jeannie....your loving gesture of chiming in on this board with kind and caring comments are very much appreciated.  Your twin has been diagnosed not too long ago and yet your first comments are that of support and gratefulness to Aussie on the loss of her dear Dad. 
If possible, dear Jeannie, would you consider sharing more information with us.  Perhaps it would be best to do so in the "Welcome" thread of our site. 
http://www.cholangiocarcinoma.org/punbb … .php?id=18

Thanks for considering,

Hugs
Marion

Ahotti....my most sincere condolences to you and your family.  You have given it your all and your Dad benefitted greatly from all your efforts and must have been very proud of you.
I wish for your heart to heal....one day at a time and for your upcoming new addition to your family to bring joy and happiness to all.
Hugs,
Marion

13

(44 replies, posted in General Discussion)

Nice and welcome progress, dear Carol.  Everyone is on top of the situation and your Dad has achieved the comfort level he deserves.
Hugs to you,
Marion

Aussie....I believe that non-response to your question is related to the fact that many don't know the exact name of the drug. 


For example:  IDH1 is reported on in various ways.  Keytruda
http://www.cholangiocarcinoma.org/punbb … p?id=12515

ERBB2:
Pertuzumab, Docetaxel (Taxotere) Lapatinib (Tykerb), Bevacizumab, Paclitaxel (Abraxane)

Basically, anyone having experience with molecular inhibitor treatment would be helpful in offering information to you.

You may also want to take a look at the "Clinical Trial" section on our site:
http://www.cholangiocarcinoma.org/punbb … .php?id=14

Hugs,
Marion

15

(4 replies, posted in Clinical Trials)

Thanks, Diane. 
This is the study identifier:
https://clinicaltrials.gov/ct2/show/NCT01828034

My heart goes out to you and your family.  Please accept my most sincere condolences on the passing of your dear husband.  His suffering had ended;  he is in a better place. 
I wish for your heart to begin to heal ....one day at a time.
Hugs and love,
Marion

rarebreed......would you be so kind and repost your info in the clinical trials category?
http://www.cholangiocarcinoma.org/punbb/post.php?fid=14
This allows us to highlight it and perhaps others participating in this particular trial will be able to communicate with you.
You may want to add  MEK162 to the topic headline.
Thanks for considering,
Hugs,
Marion

So glad you had the opportunity to meet in person.  Nothing beats the personal contact.  Hope you can do this again and if you do then please send us a picture.
Hugs,
Marion

Katia......incredible...other than no cancer, Stage I is about as good as it gets.  So glad you became proactive in searching out other institutions. 

Regarding tissue collection:
Larger Cancer Institutions preserve retrieved tumor tissue. 

However; in order to obtain molecular testing certain steps need to be taken in advance.  You need to discuss with the surgeon your intent of sending tumor.  Instructions are in this link:
http://foundationone.com/order.php#1

download a task requisition form to be signed by the ordering physician:

http://foundationone.com/docs/Foundatio … =196914911

A sample with pathology report needs to be sent to:
Foundation One
150 Second Street
Cambridge, Mass. 02140
USA

For a more detailed overview: http://foundationone.com/order.php#1

You may call or e-mail for further instructions:
Client.services@foundationmedicine.com

Good luck and tons of good wishes,
Marion

20

(3 replies, posted in General Discussion)

Darlene...so sorry to hear of the latest development.  As mentioned by you, many others have had similar experiences; nothing can compare to the surgeon's eyes for accurate disease diagnoses. 
We know that Stage IV patients tumors cannot  be removed completely by surgery, as the cancer may have spread to other parts of the abdominal cavity.  Having said that, Darlene, once recovered from the abdominal incision, other options should become available to you.  You may want to discuss molecular blood testing or the possibility and advantage of a more comprehensive testing of your tumor tissue.    Perhaps a specific biomarker can be identified useful in a treatment protocol specifically geared to you. Also you would want to discuss with the oncologist participation in a clinical trial.
I wish for a quick recovery and a positive outcome with the upcoming meeting with the oncologist.

I am not a physician, hence all information provided by me must be validated by an expert.

Hugs,
Marion

21

(3 replies, posted in Members' Cafe)

Beautiful picture, thanks for sharing.  Happy Birthday to your Mom.
Hugs
Marion

Beverly.....you may want to consider participating in the GWAS study:
http://cholangiocarcinoma.org/professio … nic-study/
Hugs,
Marion

berverly......thanks for chiming in.  I think all of us touched by this cancer live in fear of contracting this disease as well.  Although there have been some isolated cases of CCA occurrence within families, a genetic link has not been established.  I assume that further testing will be done in your case. 
Hugs,
Marion

The most fantastic news is the attention given to our cancer; a far cry from what we experienced when your Dad or my husband had been diagnosed. 
Hugs,
Marion

25

(44 replies, posted in General Discussion)

Carol....fantastic, Carol.  Agree with the roller coaster statement, it's best to hold on to seats.  Wishing for all good things to continue.
Hugs,
Marion