Good question, Mike, and one that I am not qualified to answer.  I think that molecular targeted agents as well as immunotherapy biological drugs are embarking on a not yet substantiated area.  In fact, this came up in todays AAADV workshop.  FDA representatives remarked on the fact that 5 different immunotherapy drugs are under review and yet no one knows the efficacy of these agents.   I think that we are caught in a whirlwind of new and unknown scientific research. These clinical trials are investigational and provide us with the best achievable answers to day.
I spoke with ASLAN representatives last year.  Perhaps I can reach out to them again, sometime next week;  in the meantime though don't let this hold you back from investigating further by making personal contact. with ASLAN.
Hugs,
Marion

2

(77 replies, posted in Clinical Trials)

Maria....Melinda had mentioned the difficulties with lab space.  Additionally, I was made aware of another problem related to the molecular testing lab, which should resolve soon.  There is a chance that I can address this issue with Dr. Rosenberg, tomorrow.  He will be presenting at the AAADV  meeting (https://www.acceleratingworkshop.org/)  I am participating as well and will keep you posted on the outcome.
Hugs,
Marion

3

(5 replies, posted in Introductions!)

Who tested the tissue?  Had it been sent to a lab such as Foundation One, Perthera or Carris, etc?
Reason for my asking:  institutions test a minimal amount of alterations whereas other labs perform large panel genomic testing, which may reveal a  DNA alteration (fault) for which a targeted drug is tested in clinical trials.
Hugs,
Marion

I wish I knew as much as Gavin thinks I do, but I will try my best.

ASLAN  is basing their  hypothesis on the fact that:

Cancer begins when normal cells begin to change and grow uncontrollably, forming a mass of cells called a tumor. In a cancer cell, genes mutate (change) in ways that are harmful. In a healthy cell, EGFR allows cells to grow and divide. When there are too many receptors caused by a mutation, as happens in cancer, the cancer cells continue to grow and divide.


TKIs are a type of targeted therapy. Targeted therapy is a treatment that targets specific genes, proteins, or the tissue environment that help cancer cells grow and survive. Specifically, some TKIs block EGFR from working, which can help stop or slow tumor growth.
http://www.cancer.net/research-and-advo … ung-cancer

As all Phase I clinical trials, the study predominantly is testing toxicity levels with the hope that patients may benefit as well.

Hope I have been of help to you.

Hugs
Marion

5

(5 replies, posted in Introductions!)

Tim and Julie....I agree with Lainy and Debbie in that you had made a wise decision and Sean has been rewarded with excellent results.  How is he fairing with the latest TACE procedure?
I wonder: had molecular testing been discussed as well?

All my best,
Marion

6

(9 replies, posted in Members' Cafe)

Scott.....thanks for allowing us to share the momentous moment of your celebrity.  You are super.
Hugs
Marion

7

(2 replies, posted in General Discussion)

Sharon....your husband will feel significantly better post paracentesis and he should regain energy as well.  Is there something in particular he likes to eat?  If so, then I would try to entice him with whatever he prefers.  Small meals at a time are good; ultimately the total day calorie count is of importance.  Tons of good wishes are heading your and Phil's way.
Hugs,
Marion

8

(1 replies, posted in Introductions!)

Renee....hello and welcome to our very special club.  This foundation formed in 2006 for the reasons you mentioned:  little was known about this cancer.  Although many questions are still unanswered, we do however benefit from increased research focused on this cancer and witness some incredible, positive responses to presently available treatments.  I feel very hopeful for you as well.
Please share more with us, dear Renee, such as stage of your cancer,  which center you are working with and whatever else you can help us understand about your particular case.
Hugs,
Marion

Brian....correct, adjuvant therapy follows surgery.  The reason for my mentioning the questions re: adjuvant chemotherapy was based on the fact that I assumed you had clean margins i.e.  no cancer cells are seen at the outer edge of the tissue that was removed (the tumor along with the rim of surrounding tissue.)  If indeed this was the case, then follow-up with chemotherapy is not proven in clinical trials, but the majority of physicians recommend it regardless.  This pretty much coincides with what we see on this board.  We do however have a clearer answer with release of data of the 2 clinical trials mentioned in my previous posting.

Should the upcoming CT/MRI prove otherwise then of course, a next course of action must be considered. 

I must congratulate you on the speedy recovery; walking 3 miles, 16 days post surgery,  is pretty incredible. Given the reduced dosage you may just sail right through the gem/cis treatment, but I hope for others to chime in and share their thoughts with you as well. 

Hugs,
Marion

10

(5 replies, posted in Clinical Trials)

Cindy....fantastic news about the shrinkage, but as Katherin mentioned, the side effects should be addressed.  Biotene  products are excellent for mouth sores and cotton mouth.  Chewing Biotene gum through the day helped my daughter fight the side effect of her cancer treatment.
Hugs,
Marion

Brian....welcome to our site.  Congratulations on your successful surgery with clean margins. That is fantastic news.  I can understand your reluctance of receiving adjuvant therapy, but the majority of physicians recommend some sort of treatment in post-surgery settings. 

To help us understand efficacy in adjuvant settings,  we are awaiting the outcome of two clinical research studies:

BiLCAP trial conducted in the UK is comparing surgery and capecitabine  (Xeloda)  (with surgery alone. 
http://www.cancerresearchuk.org/about-c … allbladder

PRODIGE12. conducted in Germany, is comparing observation only to extrahepatic patients treated with gemcitabine and oxaliplatin (GEMOX)
https://clinicaltrials.gov/ct2/show/NCT01313377

I was hoping for the results of the BILCAP study to be announced at the upcoming ASCO meeting, but it appears that we have to wait until fall of this year. 

Based on the outcome of BILCAP, PRODIGE12 may have to be adjusted accordingly.

How many doses of reduced gem/cis are you expecting to receive and will you have a port?

Collecting and analyzing numerical data in large quantities is vital however; I agree with Lainy in that statistics can be problematic for patients trying to comprehend the odds of longevity related to a particular disease.  We must remember that equation defines the mid-range of maximum and minimum values, is retrospective and reflects the outcome of passed results; perhaps those of many years ago. 

If ever one is touched by this cancer, this is the best time.  Cholangiocarcinoma patients are benefitting from previously not applicable treatments and we witness the positive outcomes more than ever before.

Hugs,
Marion

Hi Annie.....and welcome.  I assume you are looking for accrual in the NIH trial:  Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients With Metastatic Cancer
https://clinicaltrials.gov/ct2/show/NCT01174121
Our Melinda had spectacular results and I wish the same for you.  When will you restart gem/cis?
Hugs,
Marion

Susan....thank you for the offer.  I lived in Santa Rosa for 40 years....good likelihood for our path to have crossed sometime in the past.  Kathi will respond to you and I hope to meet you sometime soon.
Hugs
Marion

14

(2 replies, posted in Introductions!)

Jill.....welcome to our special group. Can you share a bit more with us?  Who diagnosed your husband and which tests have confirmed the cancer?  Has surgery been ruled out? 
Hugs,
Marion

Jim......Mary and you consistently adapt to the ever changing landscape of this cancer and move forward in the most admirable way. In this most precious time, adding additional help will be of great benefit to you both.  Appears that pain  is controlled and I wish for the breathlessness to ease off as well.  I am wondering; would Mary benefit from  additional  oxygen? 
In regards Afinitor, I wish for Mary to have a great response.  Some have had great luck with targeted drugs and the same may come true for Mary.  My fingers are crossed.
Hugs,
Marion

Sharon....you would want to confirm this with the physician, but there is a good chance that Phil's fluid build-up is related to "ascites," an accumulation of fluid in the peritoneal cavity (the space within the abdomen that contains the intestines, the stomach, and the liver. It is bound by thin membranes.)  Fluid also likes to accumulate in the extremities i.e. feet or hand.  Elevating  Phil's feet will help.   The physician may prescribe diuretics and recommend reducing the salt intake and perhaps order draining of the abdominal fluid as well.  This should make Phil much more comfortable. 
Don't hesitate from informing the physician of the recent physical and emotional changes prior to Friday's visit.
Stay strong, dear Sharon.  A tidal wave of good wishes are heading your way.
Hugs
Marion

Nice visual.  A cancer cell (white) being attacked by two cytotoxic T cells (red).  The immune response system triggering a response. 
https://visualsonline.cancer.gov/detail … geid=10486

18

(17 replies, posted in General Discussion)

You are welcome, Darla

19

(17 replies, posted in General Discussion)

Here is the much awaited update from Robin, Lainy's daughter:  Good news.

"Hello Everyone,
Mom just got out of surgery, the doctor came out and talked to me, she is doing just fine! He said it was not as large as the first one so the surgery went just as expected and also the MRI before surgery showed no new tumors at all and she will be checked in 6 months or so with a scan to see if anything had developed although he doesn't expect to find any.

If everything is good in the next 24 hours she should be going home by Tuesday afternoon. She is in the ICU right now which is standard care for neurosurgery and will be moved to a regular room by tomorrow morning."

Hugs
Marion

Sirena.....such good news.  Thrilled for you.
Hugs
Marion

bgmat....congratulations, a fantastic response to treatment.  I am happy right along with you.  I believe that the majority of patients use a port and hopefully share some of their own thoughts with you.
In the meantime I am enclosing a link leading to pictures and postings of ports provided by our very own nurse, Karin D.   http://www.cholangiocarcinoma.org/punbb … p?id=13917

I think you will do very well, dear Bridget.

Hugs,
Marion

Accelerating the progress in cancer includes increasing the number of patients in clinical trials

Vice President Biden's speech at the Annual Association for Cancer Research Annual Meeting:

https://medium.com/@VPOTUS/here-s-what- … .t9z1tpayu

You may also enjoy a taped version of AARC's conference:
http://webcast.aacr.org/console/player/ … Video&

Hugs
Marion

Sherri....I hope for others to chime in on your question and to share first-hand experience.

From what I know, Avastin and Irinotecan and 5-FU is approved for colon. kidney and lung cancer  but oftentimes prescribed off-label for other cancers as well. Avastin slows the growth of  new blood vessels by reducing oxygen and nutrients necessary for tumor survival.

Hoping and wishing for one of our experts (patient, caregiver) to add additional info.
Tons of good wishes are heading your way.
Hugs,
Marion

Sirena....we have reports of nausea, diarrhea follow and extreme tiredness following radiation.  Perhaps someone else can chime in on your question?
Most likely they will run a culture for determination of the bacteria causing the fever.  Try to relax, they will have answer.
Hugs,
Marion