1

(8 replies, posted in Introductions!)

Izabella......other chemo agents are available.  I assume that the oncologist will meet with you and discuss.  Your Dad may very well respond favorably. 
I realize that your are fearful (who wouldn't be?) but I don't believe that that all options have been exhausted as of yet.  And, no, the liver won't collapse, but you are a long way off from thinking in these terms. 
Please try to relax and await the physicians next course of action and most importantly await your Dad's response.

Hang in there, dear Izabella.  This disease likes to throw curveballs our way, but we have learned to rely on our boxing gloves.   
Hugs,
Marion

2

(12 replies, posted in Introductions!)

You have done everything right.  Dr. Valle will be in the US for ASCO, beginning Friday, and it should give much hope to you that he will see Mary upon his return to the UK.  Stay strong and hopeful, dear Judith.  Mary does not have an expiration stamp on her feet.
Hugs,
Marion

Abbie........was the recommendation for gemcitabine infusion or had the physician recommended Xeloda a similar formula in oral form?  Also, has your Dad had molecular testing for possible biomarkers for which some drugs have been approved for treatment?
Hugs,
Marion

4

(201 replies, posted in Hospitals)

Please be so kind and add names of physicians/treatment centers you have personal experience with.  This is especially important for those patients living outside the US searching for treatment facilities and/or physicians within their own countries.
Thank you from the bottom of my heart. 
Hugs,
Marion

5

(15 replies, posted in Introductions!)

Krassi....Degan is the same as Regan in the US.  Is your sister holding down foods and liquids?  If not so, then oral administration of any drug is highly questionable.
Stay strong, dear Krassi, you have a tidal wave of support on this site.
Hugs,
Marion

Duke...there a plenty of statistics and small scale studies, but I am not sure about conditional (mathematical) studies for non-resected CCA patients. 
You have been missed on this board; you have created a dependency on a "daily" dose of Duke.

Hugs,
Marion

Debbie....you are welcome. 
Hugs,
Marion

Louie....incredible, wonderful news.  I wish for a quick and speedy recovery and for the word "cholangiocarcinoma" to never appear in your life again.  Since inception of this discussion board in 2006,  your husband good fortune is one of two similar reports ultimately disproving clinical suspicion of this disease.  I assume that the other smaller lesions through his bile ducts are in included in the resected portion of the  liver. 
Life is good.  Enjoy.
Hugs,
Marion

9

(15 replies, posted in Introductions!)

Krassi....my heart goes out to your family in this so very difficult time.  I wish for your dear sister to be free of pain and for the vomiting to be controlled.  Based on my experience with my husband and that of others, it is unlikely for the vomiting to disappear on it's own.  It must be treated aggressively because; with disease progression even saliva can back up.  Don't hesitate from addressing this with the tending physicians. 
I wish for strength and peace to come your way.
Hugs,
Marion

This articles explains that the longer a intrahepatic patient survives, the longer he/she is expected to live. 


http://www.healio.com/hematology-oncolo … ocarcinoma

Hugs,
Marion

Lorraine......I hope for well stocked stores carrying this chocolate, as I anticipate a big run on this welcome product.  Happy to hear that you are fairing rather well with the treatment and that you have eliminated the most bothersome issue so far.   

I wonder, dear Lorraine, would you please repeat this posting in our "Managing Side Effects" thread?  We want to make sure to for everyone to have the opportunity to eat chocolate "for the right reason."

Hugs,
Marion

12

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

Nancy ....enjoy your holiday.  Wishing for Ron's recurrence of this cancer to baffle us all over again and retreat as quickly as it reappeared. 
Hugs,
Marion

13

(39 replies, posted in General Discussion)

Fred....so happy to hear that your son has made a turnaround for the better.  I recall santineerp  posting mentioning gram-negative e-coli in one of her threads. BTW:  e-coli is a gram negative bacteria.  You may want to enter the keywords: "gram negative bacteria" in the Search function in order to retrieve her posting. 
Hoping for others to chime in on this as well.
Hugs,
Marion

14

(8 replies, posted in Introductions!)

Izabella….welcome to our special, courageous, caring and kind group of people touchéd by the disease of Cholangiocarcinoma.   

Although scans and other testing allow for the most accurate diagnostics available however: as you have learned, the surgeon’s eyes and hands are irreplaceable in identifying the true extent of a disease.  For example:  the plate of a CT measures 1 cm in thickness, hence nodules less than 1 cm in size are not detectable.

It appears that your Dad’s blood was tested for chemo sensitivity and for that reason FOLFOX had been recommended with excellent results so far. 
Has your Dad’s tumor been tested for possible targeted treatments? 
Perhaps the physician will want to complete the 6 cycles of chemotherapy while keeping an eye on the CA 19-9 and then switch to another agent. 


Hugs,
Marion

Hoping for additional, larger studies to present conclusive answers.

16

(29 replies, posted in Introductions!)

faisal....I hope you have more answers soon and much understand your urgency of obtaining immediate answers.  Stay strong, your father must be so proud of you.
Hugs,
Marion

17

(29 replies, posted in Introductions!)

faisal.......it is likely for the stent to be blocked again; if so, the ERCP will give more conclusive answers.  The fever may very well be related to an infection, which has to be treated.  Has a blood culture been done?   Treatment options such as additional radiation or systemic chemotherapy can only be addressed after the ERCP procedure provides more conclusive answers. 
Hugs,
Marion

18

(29 replies, posted in Introductions!)

faisal.......what do you mean by locally advanced?  Is he obstructed and where?  Does he have a stent? 
Hugs,
Marion

carmel....we had few discussion on this problem, but I recall a conversation about proton pump inhibitors  i.e. Prevacid, etc..  You might want to discuss with the physician.

Hugs,
Marion

20

(2 replies, posted in General Discussion)

Catherine....my husband's CA 19-9  post-resection trended upward and indicated disease progression albeit clean scans and good liver function values.   The question arose:  no visible evidence of disease - do we treat or not?  We awaited to additional CA 19-9 test results (continued rise of markers) and then proceeded with treatment. 
Hugs,
Marion

21

(211 replies, posted in Introductions!)

Matt......I agree with the others' you have options for treatment.   A tidal wave of good wishes are heading your way.
Hugs,
Marion

Agree with Debbie.  We have reports of cysts and scar tissue.  Perhaps one or the other may be the case with your Mum as well.  Try to stay positive and try to relax. 
Hugs,
Marion

23

(6 replies, posted in Introductions!)

Flowerlover........I believe it is a control issue and it is justified.  It is easy to feel betrayed by our bodies when it impairs our daily lives.  Although you feel left out, I think your FIL wants to control his illness as best he can.  You are doing everything right by supporting him in whatever he chooses to do.  It is unlikely for the ascities to recede and I don't believe it is advisable to recommend a second or more opinions from additional specialists.  Dana Faber is an excellent institution treating a high volume of Cholangiocarcinoma patients.  Your FIL is in good hands.
Hugs,
Marion

Thanks, Gavin.  Love these killer T-cells.

Lee.... Some things are unexplainable, but with this good news - who cares? Enjoy.
Hugs,
Marion