What a simple and much needed invention.  Thanks for sharing, dear crfisher.

Hugs
Marion

2

(3 replies, posted in Members' Cafe)

So nice to hear from you, dear Scott.  Spring has sprung and we enjoy it immensely.

Hugs
Marion

This trial also checks for somatic mutations, which are alteration in DNA that occurs after conception. Somatic mutations can occur in any of the cells of the body except the germ cells (sperm and egg) and therefore are not passed on to children. These alterations can (but do not always) cause cancer or other diseases.
https://www.cancer.gov/publications/dic … drid=46586

4

(0 replies, posted in Announcements)

Here you go: http://cholangiocarcinoma.org/misc/2017 … in-review/

Your feedback is greatly appreciated.

Enjoy!

Hugs
Marion

deadlift.....what were the reasons for the drop out of this trial?

Hugs
Marion

6

(3 replies, posted in Clinical Trials)

Vedic....results of Phase I rarely are published (if ever).  The best way to go about it is to discuss with your physician that prior of you signing up for this trial  you need answers to your questions. 

Also, investigate cost of transportation or hotel (or both) if indeed you are considering entering the trial.  Hospitals may be accommodating, but they won't offer unless they are asked.

Too many trials can't recruit, hence it's in the best interest of the Investigator to accommodate your needs.  Assert yourself dear Vedic, you have the power to do so.

Good luck and hugs and please keep us posted.
Marion

Totally agree with Billy.  There are some super surgeons, who take on cases most others refuse.

Hugs
Marion

8

(3 replies, posted in General Discussion)

Lourdes...not a soap box at all.  Your are bringing up valid points.  The majority of patients are tended to by their loved ones,  finally there is some recognition and support offered to those providing invaluable care to their most precious people in their lives.

Hugs
Marion

9

(11 replies, posted in Introductions!)

Lourdes....it seems that the VA is taking each  cholangiocarcinoma case individually.  If only they would admit the connection of VA Vets and this cancer.

Hugs
Marion

10

(78 replies, posted in Introductions!)

Dawn....a warm welcome from me as well.  Glad to hear your last treatment is nearing.  Make sure to mention the neuropathy to the treating physician.  Most likely you know to take precautions around hot and cold items.    The good news is that in the majority of cases the nerve endings affected have a tendency to regenerate.

Please keep us posted on the upcoming visit at MD Anderson. 

Hugs to you and your loving family,

Marion

It's important to recognize that helping the caregiver also helps the patient.

Family caregivers usually begin caregiving without training and are expected to meet many demands without much help and often neglect his or her own quality of life by putting the patient's needs first.

The family caregiver has many roles besides giving the patient hands-on care.
He/she faces the tough job of taking on new roles and challenges as the patient's needs change over time.
The caregiver takes on different roles so that the patient gets all the information, support, and treatment he or she needs.
Decision Maker
Advocate
Communicator
In addition to giving the patient hands-on care, caregivers also  manage the patient's medical care, insurance claims, and bill payments, be a companion to the patient,
accompany the patient to doctor appointments, run personal errands, cook, clean, and do other housekeeping chores.
They find doctors and specialists needed and get information that may be hard to find and help
the patient connect with family, friends, neighbors, and community members.

It's important for caregivers to ask for help when they need it. Many people who were once caregivers say they did too much on their own. Some wished that they had asked for help sooner. The best time to find out where to get help is when the patient is diagnosed with cancer. All through caregiving, it’s important to watch for signs of caregiver strain and get help right away. Caregivers who take care of their own needs have the strength to carry on and be a better caregiver.

Today, many health care providers watch for signs of caregiver distress during the course of the patient's cancer treatment because;  when caregiver strain affects the quality of caregiving, the patient's well-being is also affected.

Please read more and let's discuss:
https://www.cancer.gov/about-cancer/cop … section/_4

Hugs
Marion

12

(87 replies, posted in Clinical Trials)

This is the link to Melinda's trial - NIH - Steve Rosenberg, MD
https://clinicaltrials.gov/ct2/show/NCT01174121

13

(87 replies, posted in Clinical Trials)

This is the link to Melinda's trial - NIH - Steve Rosenberg, MD
https://clinicaltrials.gov/ct2/show/NCT01174121

14

(1 replies, posted in Websites)

TCGA (The Cancer Genome Atlas)  is a collaboration jointly supported and managed by the National Cancer Institute and the National Human Genome Research Institute, both parts of the National Institutes of Health. This program involves investigators aiming to improve the understanding of the molecular driver of specific tumor types.

TCGA has chosen cancers for study based on specific criteria that include:
Poor prognosis and overall public health impact

Availability of human tumor and matched-normal tissue samples that meet TCGA standards for patient consent, quality and quantity

We are fortunate, sufficient tumor tissue had been submitted and our cancer has been accepted in this program. 

This is the latest press release regarding cholangiocarcinoma:

Researchers with The Cancer Genome Atlas (TCGA) Research Network performed an integrated molecular analysis of 38 cholangiocarcinoma tumors, rare cancers that originate in the body’s bile ducts. Cholangiocarcinoma is associated with a poor prognosis because it is often diagnosed at an advanced stage and does not respond well to conventional chemotherapies. The new study, published in Cell Reports on March 14, 2017, reveals features of the disease that could lead to new therapeutic opportunities.

https://cancergenome.nih.gov/newsevents … inoma_2017

15

(3 replies, posted in General Discussion)

Ben....great.  Interested to see what mutations have been discovered  and most importantly, are there targeted agents available for treatment?

Regarding nausea and other symptoms: don't let off.  As mentioned before, if it is related to a blockage then it should be addressed,  if not so then medications must be considered. 

This is one of my pet peeves, dear Ben, patients should not have to suffer with this cancer. 

I realize many patients and physicians don't like the idea of suppositories, but my feeling is that  those troubled by vomiting don't derive  much benefit from oral drugs.

This is my opinion based on my husband's experience and the feedback of many patients on this site 


Hugs,
Marion

16

(3 replies, posted in General Discussion)

grsharp....most importantly, have you received an explanation to your wife's significant nausea, vomiting and abdominal pain?  When did it start?  What are her latest scans showing? This is important to ask, because sometimes there are ways to bypass certain areas blocked by the tumor, if indeed that is the reason for her problems at this time. 

I think liquid biopsies have not yet fully been explored, but it provides an alternative for some tumor tissue sampling.  The idea behind is that tumors shed into the blood stream.

"The patterns of genomic changes identified by a liquid biopsy test  in a large collection of patient blood samples largely matched patterns of genetic changes seen in large tumor biopsy profiling studies.

Tumor biopsies are an essential part of cancer care. They can confirm a cancer diagnosis, identify the cell type of the tumor, and, increasingly, they are used to determine whether a patient’s tumor contains particular genetic alterations that may make them candidates for targeted therapies.

However, tumor biopsies require invasive procedures, including surgery, and some patients may not be candidates because of poor health or because of a tumor’s location in the body. In addition, after the initial testing and analyses of biopsy samples, not enough additional tissue may be left for comprehensive molecular profiling, or it may not be of sufficient quality for profiling.

In the matched blood ctDNA/tumor biopsy samples, the liquid biopsy also identified genetic alterations not present in tumor biopsy samples that are known to make tumors resistant to therapy. These included mutations in the EGFR, ALK, and KRAS genes that are known to cause resistance to currently available targeted agents.

Overall, the test identified these resistance mutations in 27% of patients, Dr. Mack said during an interview. In most cases, he continued, the mutations were likely not present at the time of the initial tumor biopsy, instead emerging as a patient’s disease progressed on therapy"

Read more: https://www.cancer.gov/news-events/canc … uid-biopsy

Sending tons of good wishes and crossing my fingers for a targeted drug to be identified with the blood test.

Hugs
Marion

That's the big question, dear Alikemal.  It's best to consult with a specialist as treatment is  based on patient's individual disease presentation.

This webinar is free and open to the public.

Meeting URL: https://dukemed.webex.com/dukemed/j.php … e690499fef
Meeting number (access code): 732 023 344
Meeting password: viewpoint


  During this webinar, Dr. Califf will address recent developments that have major implications for the clinical research enterprise in the United States.

19

(12 replies, posted in Introductions!)

Gail...we love to keep our independence, but also must realize that there are situations where others would like to be of help AND we must allow for the opportunity for this to happen. 

You may want to make note of what is needed most:

Meal Services - one person can organize a list.  Those that want to contribute may fill in their names and the day of delivery.

When my friend had breast cancer her family never lacked a meal.  In fact, it became fun for those of us providing it.    We tried to outdo each other and the most incredible, wonderful dinners were prepared.   Everyone was happy.

Already you covered the house work.

Gardening and lawn:  that too worked well for my friend.  Amazing how many men and various teenagers pitched in.  Again, everyone was happy.

Hugs
Marion

Caligirl....Your Dad is doing everything right and he has the perfect support team by his side (you and your Mom.)

Good luck with Dr. Selby's consultation.  He has operated on many cholangiocarcinoma patients and I would trust him wholeheartedly.

Whenever your Dad is done with your kitchen cabinets can I be next in line?

Hugs,
Marion

2nd line, first picture:
back row, left to right:

Dr. Javle, MD, MD Anderson, The Cholangiocarcinoma Foundation Vice Chair, Clinical Science Advisory Board, Chair, The  International Cholangiocarcinoma  Research Network
next to him: Sue Aquisto, PhD, Chair, The Cholangiocarcinoma Nursing Advisory Board
next to her:  Prof. John Bridgwater, UK
lady in pink:  Stacie Lindsey, President and Founder, The Cholangiocarcinoma Foundation
to her right:  Mitesh Borad, MD, Mayo Clinic, Scottsdale, and Vice Chair of the International Cholangiocarcinoma Research Network (ICRN)
http://cholangiocarcinoma.org/internati … h-network/
next to Dr. Borad:
Sean Turbeville, PhD, my eldest son,  The Cholangiocarcinoma Foundation Board Member

Hugs
Marion

22

(77 replies, posted in Introductions!)

Joe.....thanks for the wonderful update.  I share your joy.  I have  a question:  is your Mom receiving pain medication and if so, why is she still bothered by pain?

Hugs
Marion

This seminar is offered by the Cancer Legal Resource Center and it is free of cost.  I hope to attend and report back.  Perhaps someone else would like to do the same?

https://attendee.gotowebinar.com/regist … 1875143169

Hugs
Marion

24

(7 replies, posted in In Remembrance)

googily......Words can't express my sorrow for you.  Know that my heart is with you in this difficult time.

Hugs and love

Marion

25

(29 replies, posted in General Discussion)

wedge surgery for lung, dear Julie.