1

(0 replies, posted in Clinical Trials)

The below link highlights research studies submitted to the Cholangiocarcinoma Foundation as well as a rolling feed to cinicaltrials.gov
Submitted studies are presented in a patient friendly version, can be downloaded, printed and discussed with treating physician.
http://cholangiocarcinoma.org/professio … al-trials/

2

(6 replies, posted in General Discussion)

No mucking up the plans, we want you, we need you and we can't do without you at the next conference. 
Hugs,
Marion

3

(4 replies, posted in Pain Management)

Mruccci....make sure to speak with the physician.  He/she may recommend a stool softener or other digestive aid.
Hugs
Marion

4

(4 replies, posted in Pain Management)

Mrucci....know that this is a common problem; some issues are related to the disease,  treatments or prescribed drugs.  It may help to eat small, high protein portions throughout the day. The digestive process is slowed due to inactivity, hence it may be helpful to move around following intake of food.  Not that your husband should exert  himself, but small walks aid  a better functioning digestive process.  Others may have additional tips to share with you.
Hugs,
Marion

5

(314 replies, posted in Introductions!)

Matt......fantastic news.  The enclosed chart leaves nothing to imagination, it clearly supports your comments of continuous success with your treatment.
So happy to have met you in person.  Are you planning on attending next year's conference as well?
Hugs
Marion

6

(2 replies, posted in Introductions!)

Karolm.....congratulations on your successful surgery.  I hope that your healing continues in a steady and uneventful way. 
Liver resections are complex; surgery techniques vary and are dictated by tumor size, locations and other variables.  Ultimately the goal is to remove the  tumor invaded tissue while preserving enough life sustaining liver volume.   Based on what I understand, it appears that in your case the surgeon utilized portal vein embolization to help the left side of your liver re-grow prior to resecting the right side of your liver. 
I hope for others to chime in on this conversation and help support your through the healing process.

Hugs
Marion

Lorraine........agree.  You deserve a clear answer and no one seems to give it to you.  There are clinical reasons for Donnie's condition i.e. increased bilirubin levels and whether it is related to liver cirrhosis or other causes.  Not necessarily does this demand a CT or MRI because; a patient's  medical chart contains the information needed for physician interpretation of health status.    Donnie has a right to know the underlying causes of the present  conditions.
Personally I experienced a similar situation with my mother's physicians in Germany.  We were told that she had suffered  a stroke and no further information was given.   I am used to and appreciate American physician's openness in re: to clinical information sharing with patients and their requested loved ones.  Unfortunately, that's not always the case in other countries.   So, I waited it out and stood by the door while medical personnel (doctors and nurses) had to pass by me to tend to my mother.  My sister was aghast by my behavior, but eventually it paid off and the leading physician  asked to speak with us in private.   

I would not give up, Lorraine, people throughout the world read or participate on this forum and all of us want to be assured that Donnie is treated humanely and kind  and tended to with expert care.
Hugs,
Marion

Is developed by President Obama.  This initiative is to accelerate progress towards prevention, treatment, and a cure -- to double the rate of progress in the fight against cancer -- and put ourselves on a path to achieve in just 5 years research and treatment gains that otherwise might take a decade or more.

The White House Cancer Moonshot Task Force (Task Force) will focus on making the most of Federal investments, targeted incentives, private sector efforts from industry and philanthropy, patient engagement initiatives, and other mechanisms to support cancer research and enable progress in treatment and care. The Vice President shall serve as Chair of the Task Force.

To learn more about this important initiative use this link:
http://www.cancer.gov/research/key-init … initiative

Lorraine......has anyone given you an explanation re: tumor progression and why MRI and drain change will not change the situation?  What exactly have you been told regarding dear Donnie's clinical state?
Hugs and love,
Marion

10

(5 replies, posted in General Discussion)

Julie....you talked sense into me as well and I am with you, all the way.
Hugs
Mrion

Porter....not sure whether it helps to know, but I recall a poster mentioning 6 surgeries for removal of lung nodules.  Similar to you, other than the lung metastases he reported of no other problems.
Expect a tidal wave of good wishes heading your way on the 23rd of this month.  Can't wait to read your posting soon thereafter.

Hugs,
Marion

This study is open for enrollment in several centers throughout the US as well as:
Canada
Israel
Japan
Korea
Norway
https://clinicaltrials.gov/ct2/show/NCT02628067

13

(9 replies, posted in Chemotherapy)

Yeah, Scott.  You did it. 
Hugs
Marion

grsharp.....we had three days with different intent:
Patient and Caregiver Sessions - Day 1
Basic, Translational and Clinical Research Sessions - Day 2 and 3
Poster Session:  Day 2 and 3

Presentations  have been recorded and will be presented for view within the next few days. We will make sure that is highlighted on this site.   It's unlikely for day 2 and 3 to reveal new treatment option rather, I prefer to think of it as a "Think Tank" in where some of the brightest physicians and researchers share information and study results pertaining to the disease of cholangiocarcinoma. 
Good luck tomorrow and please share with us the outcome of your meeting with the oncologist.
Hugs
Marion

15

(7 replies, posted in Introductions!)

David.... Thank you for sharing this inspiring story with us.  Your weight gain and increased energy are  nothing but remarkable.  Not sure that I would look at it as a small victory, but rather that all things are working in your favor.  Congratulations to you, your wife and everyone else standing by you.
Hugs,
Marion

SMG......you have some valid questions. Drastic weight loss and increasing nausea (reported in your previous posting) are concerning.  Regardless of the upcoming scan, I would discuss with the physician the issues at hand.  Why your Dad experiences alternating "feeling good" versus "not so good" days are somewhat acceptable to me, as he is ill and some days  simply are better than others.   
Hoping for others to chime in on this conversation as well.  Collectively there is a quite a bit of knowledge on this site.
Hugs
Marion

17

(7 replies, posted in Introductions!)

David....I too am thrilled to welcome you on this site and to know for you and Scott had the ability to meet. How cool is that?
Hugs,
Marion

18

(8 replies, posted in General Discussion)

Hello Pj......welcome to our site.  The Mayo website offers information pertaining to Pruritus (severe itching of skin)   
Take a look:
http://www.mayoclinic.org/diseases-cond … n-20028460
Hugs,
Marion

19

(9 replies, posted in Chemotherapy)

Scott.....I hope for others to chime in and share their thoughts.  But, I don't think you need to be scared.   This is a common procedure performed thousands of times.  I was with my husband throughout each facet of treatments and  this was one of the least troublesome procedures for him.   
Hugs,
Marion

20

(9 replies, posted in Introductions!)

Robert....happy you have found us and look forward to many more postings on this site.
Hugs,
Marion

21

(9 replies, posted in Announcements)

Agree, Jason.  Industry is very interested as well.  I expect that within five years we will see some incredible advances with this cancer.
Hugs,
Marion

22

(5 replies, posted in General Discussion)

Julie....my husband had an incisional hernia, which had to be repaired.  Although I am not the patient, but based on my observance, he recovered quickly.    Abdominal surgeries are known to cause hernias; our site has many postings on this.   Now, if only you could stop these little ones  from kicking grandma!
Agree with you trying to move up the Mayo date.  Hope it works out for you.
Hugs,
Marion

23

(9 replies, posted in Chemotherapy)

Scott.....I assume that "wearing home" means that you will be using a pump for continuous infusion of 5-FU?   Wondering what the other drugs are?
My husband had a PIC line as well.
Few things I remember:  ask to have a warm cloths applied to area prior to inures accessing the port.  A competent nurse should be able to access the port without causing pain.

My husband continued to exercise, but he did not play football and avoided  any possible physical impact on the site. 

Karen, our nurse, explained more on this link:
http://www.cholangiocarcinoma.org/punbb … 35#p100035
Hugs
Marion

24

(3 replies, posted in Members' Cafe)

Scott.....my favorite part are the commercials and half-time entertainment.  BTW:  As I returned from Salt Lake City to San Francisco, I was worried about possible traffic. Fortunately, I headed North and everyone else was going the opposite direction at about 2:00 pm. 
Hugs
Marion

25

(9 replies, posted in Announcements)

Gary....so nice to see you on this board.  Much work is going on behind the scene, but expect a formal write-up and other information within the next few days.  Pictures, links to sessions and much more will be posted soon.
Hugs to everyone touched by this cancer,
Marion