Ali...I understand he is buys, but as as your Mom's physician he must answer questions as well.  I may be that you need your Mom to give him permission to speak with you.  In any case, you should have important questions clarified by him.

Hugs
Marion

Ali...there are many reasons for the colored ascities; however only her doctor can give you the explanation. 
Hugs
Marion

3

(16 replies, posted in General Discussion)

Fantastic....can't wait for the hugs.

Marion

4

(13 replies, posted in Introductions!)

Victoria.....we don't have current statistics for this cancer.   Those we have to await in the years to come.  I like to think of this cancer as that of a chronic disease, you move forward with treatment of choice and when and if drug resistance occurs, the next step will come into play. There is hope, dear Victoria.  Presently I am attending GI ASCO and I am in awe of the increase of research for cholangiocarcinoma.  Only a few years ago we were fortunate to witness a handful of abstracts and poster sessions, but this year the presentations are multifold. 
As you mentioned, molecular testing may reveal DNA alterations for which a targeted drug is applicable.  So, you go from there.

I am thrilled that Patrick is home.  He will thrive in this environment. 

Hugs,
Marion

Ali..... So sorry, they do not advice patients.  We are fortunate to have this team working with the Foundation. 

Hugs
Marion

Fatigue can be a common side effect of almost any type of cancer treatment, including chemotherapy and radiation therapy, and can occur weeks or months after treatment ends. Cancer itself can also cause fatigue.
http://www.cancer.net/blog/2017-01/8-wa … id=fatigue

7

(7 replies, posted in Introductions!)

Bev...good luck with the upcoming appointment.  Most likely you know already that opioids cause constipation, hence a vicious cycle begins.  Have you discussed stool softeners prior to meal intake? 

Some of the advice given by Percy:
"This is for informational purpose only.
For gas,I will take simethicone(Mylicon) 80mg-an antiflatulent,four times daily"

And JeffG:  "Stool softener ½ hour prior to meal
Followed by Laxatives after consumption of meal."

Fingers crossed that a solution is found and your husband can rid himself of the nagging nausea and pain.

Hugs
Marion

JES15228....not everyone responds favorably to an immune checkpoint inhibitor such as Opdivo.  There still is much to learn about the body's immune response and that is the focus of today's research. 
I wish for your sister to do well with irinotican.  It's been used as single agent, but most often we see it in a combination with other drugs. How is she fairing?

Hugs,
Marion

Ali....I am notifying Karen, Oncology Nurse and member of our Nursing Advisory Board. 

Hugs
Marion

Thanks, Ali, ......this is a single case study of one patient treated with Gem/Cis and the added Epidermal Growth Factor, called (EGFR).  EGFR is a type of protein found on the surface of cells in the body. However, when this protein is mutated and becomes too active, it can lead to cancer growth. Some cholangiocarcinoma patients have this particular mutation identified with molecular testing. 

Molecular testing involves a biopsy.

Hope this helped,

Hugs
Marion

Ali....tough question to answer as this disease is so individual.  Some patients have terrific responses to the very same treatment that others don't.
These are the NCI recommended guidelines:
Unresectable, Recurrent, or Metastatic Intrahepatic Bile Duct Cancer

Treatment of unresectable, recurrent, or metastatic intrahepatic bile duct cancer may include the following:

Stent placement as palliative treatment to relieve symptoms and improve quality of life.

External or internal radiation therapy as palliative treatment to relieve symptoms and improve the quality of life.

Chemotherapy.

A clinical trial of external radiation therapy combined with hyperthermia therapy, radiosensitizer drugs, or chemotherapy.
Check the list of NCI-supported cancer clinical trials that are now accepting patients with stage III intrahepatic bile duct cancer, stage IV intrahepatic bile duct cancer and recurrent intrahepatic bile duct cancer. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. Talk with your doctor about clinical trials that may be right for you. General information about clinical trials is available from the NCI website.
Bile Duct Cancer (Cholangiocarcinoma) Treatment (PDQ®)–Patient Version
Treatment Options for Bile Duct Cancer
Updated: December 22, 2016

Hugs
Marion

You are welcome.

Hugs
Marion

Ali...our medical advisory board is comprised of some of the top physicians in this field:
http://cholangiocarcinoma.org/the-chola … ry-boards/

Additionally, you may want to take a look at our patient/caregiver driven thread:
http://www.cholangiocarcinoma.org/punbb … hp?id=3126

and the non-US physician list provided by our members:
http://www.cholangiocarcinoma.org/punbb … p?id=13913

You are a great advocate for your Mom. 

Wishing for a great response to treatment

Hugs
Marion

14

(5 replies, posted in General Discussion)

positivity.....In addition to Gavin's comments I though to mention that metal stents are flexible and should they occlude can be cleaned or, an additional plastic stent can be inserted. 
Here is a great article with more information you may want to know, but it is comprehensive and skimming through the article may help you understand a bit more.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1855334/

On another note and this pertains to plastic or metal stent, we advise for anyone to carry on hand the biliary emergency card:
Patients with cholangiocarcinoma (bile duct cancer) are at risk for a serious complication called ascending cholangitis; a bacterial infection of the biliary system, which can be fatal.   The risk of this complication is highest in patients with biliary stents, biliary drainage tubes and/or patients who have had an ERCP or other medical procedure on the biliary tree.

To read more, please use this link:
http://cholangiocarcinoma.org/biliary-e … tion-card/

Hugs
Marion

15

(7 replies, posted in Introductions!)

Bhilton....hello and welcome to our special group.  What an incredible story you shared with us!

I don't know referrals work in the UK, but I would do my absolute best to consult with Prof. Juan Valle, who is based in the Department of Medical Oncology at The Christie NHS Foundation  Trust within the Gastrointestinal Disease Group. And, would do it soon, as he will be traveling to the US for our conference within the next 3 weeks.
Here is his information:  http://cholangiocarcinoma.org/juan-valle/

Regarding the flatulence:  not sure this is the case with your husband, but my husband as well as many others complaint of pain post surgery and well beyond.  In our case as well as hundreds of others, dietary enzymes were recommended and turned out to be of great value. We were told that following these type of surgeries, there is a problem with production of excretion of digestive enzymes in the intestine.   We used Creon (pancrelipase), but your physician may recommend another brand. 

I hope your husband get's some relieve, your consult goes well. Please stay in touch.  We care and we are in this together.

Best wishes and hugs,
Marion

Alikemal....welcome to our site and sorry for the reasons to find us, but we are glad you are here.

I can't comment on chemo dosage, perhaps someone else is able to do so.

The type of treatment is based on the individual disease presentation and the patients overall health as well as accessibility to the various treatment options.

Is it possible for you to speak with the physicians?  You mentioned Ascites and I wonder how this is being addressed.

I think that your Mom should eat whatever her heart desires and doesn't cause any digestive problems.  High protein meals spread throughout the day are recommended, but often times and due to chemotherapy side effect (metallic taste or lack of desire to eat) some foods don't appeal to patients, hence I believe to get in the calories any way you can. 

I hope for others to chime in and share their thoughts with us.

Hugs
Marion

17

(41 replies, posted in Introductions!)

Joe....there is a good chance that your Mom is not able to tolerate this particular chemo regimen.  I hope you can speak with the oncologist and ask whether this regimen is simply too harsh, what other regimen could be used and perhaps revisit the clinical trials solution.

Crossing my fingers for the platelets to rise to an acceptable level real soon.

Hugs
Marion

Thanks, Beatriz....thanks for summing it up.  I am using your letter as introduction in one of my  power point presentation.

Hugs,
Marion

Debbie.....touching and heartfelt.  You raised a fine son.

Hugs
Marion

20

(5 replies, posted in Introductions!)

GHIguy2016....congratulations on the success of your surgery with a qualified surgeon and a rural doctor, who recognized and acted on something that needed special attention.  Interesting to know that your particular area of Canada has a higher rate of CCA occurrence.  I believe that we are not too far off from understanding the genetics of a rare disease such as this.  I agree with you, your care has been excellent and the fact that all physicians communicate is another plus.

You have everything going for you, GHIguy2016.  How are you feeling at this time?  Still sore?  How is your digestion?

Hugs
Marion

21

(16 replies, posted in General Discussion)

We always record the event.  Most likely already you know, that you can view the 2016 conference with this link:

http://cholangiocarcinoma.org/misc/2016 … in-review/


We have outgrown our original  venue (University of Utah) and have moved this year's conference to the Salt Lake City downtown Marriott.  All in all we expect 300 plus people to attend.  This includes researchers, physicians, Pharmaceutical Industry, patients and caregivers. 


More soon.

Hugs
Marion

Beatriz...I agree on all points.  FMLA has not been on my radar though.  Thanks for bringing it up. 

Hugs
Marion

Beatriz....all valid points and all are in discussions with FDA and other Government Agencies.

1.  Community Oncology....there is a big push for greater inclusion of this group.  There are barriers though

a.  The majority of community oncologists are not up to date with clinical trials
b.  often times they are resistant to recommending a clinical trial.  Reason:  patient may suffer, quality of life diminishes, financial burden too great,
An exception and perhaps the beginning of a new era  is the NCI MATCH trial in where nearly all patients are tended to in community settings.  The ASCO  TAPUR study is similar. 

The financial burden of cancer care is well recognized as is the burden placed on family members.  Where is the solution?  Know that us advocates are working hard with pushing for changes.

A portion of my presentation at the upcoming  cholangiocarcinoma foundation conference will include a section on "Financial Toxicity"
You may also want to take a look at this:
https://www.cancer.gov/about-cancer/man … ity-hp-pdq

Beatriz, I am wondering:  would you grant me permission to include your posting in my presentation?

Hugs
Marion

Vtkb....So sorry you can't make it.  Our  annual conference continues to grow and Industry takes on a greater role each year.

I will make sure to ask the questions on your behalf.

Hugs
Marion

25

(16 replies, posted in General Discussion)

We are excited too, dear Lainy.  It will be an awesome event.

Hugs
Marion