cholangio......I understand what you are saying and therefore recommend the  option of gaining access to this drug  by enrolling in a clinical trial.   Chances of off-label use increase if a Phase II data is released, but at present we are far removed from that. 

Investigational use is another (remote) possibility.  Here is the information:
http://www.fda.gov/newsevents/testimony/ucm115209.htm

Regarding insurance coverage: I hope for someone to come forward and share experiences with us.
Personally, I recall the year 2008 and Avastin ( Bevacizumab.) This angiogenesis inhibitor had not been tested on CCA patients and yet some were approved by their insurance companies whereas others were denied by their individual carriers. In the approved cases a physician contacted the pharmaceutical company directly and then followed up with the insurance carrier.

Hugs,
Marion

2

(5 replies, posted in General Discussion)

jess....It is nice to hear for your physician to support the decision for additional opinions.   I also located some of the postings related to the Hepatic Arterial Infusion pump:
http://www.cholangiocarcinoma.org/punbb … =185770465
and
the clinical trial you had eluded to:
http://clinicaltrials.gov/show/NCT01862315
Hernias unfortunately, are a byproduct of hepatobiliary surgeries, but can be corrected.  In fact, our Lisa just recently corrected this unwanted problem. So, with time, you too will be able to have corrective surgery.
In the meantime, tons of good wishes are heading your way for your upcoming visit with the John Hopkins team.   Please keep us posted - we care and we are in this together.
Hugs,
Marion

Reacher....please take a look at the Cholangiocarcinoma Foundation Medical Advisory Board: 
http://cholangiocarcinoma.org/the-chola … ry-boards/

Hugs,
Marion

cholangio.....agree, the drug cannot be prescribed unless it receives FDA approval   To obtain that, pharmaceutical companies must conduct clinical research studies (Phase I, II, and Phase III.)  Once successful the drug can be prescribed "off label" for any disease.
At present, the only way for your Dad to "potentially" benefit from the discussed drug, he must enroll in a clinical trial.
Hugs,
Marion

This is an important trial for our UK residents.  Please note centers participating in this study:

http://www.cancerresearchuk.org/about-c … setValue=1

Serena....constipation is a major issue post surgery (and beyond) and one of the most discussed subjects on this site. 
Most often enzymes are necessary to aid the digestive tract and assist the digestion of fat, carbohydrates and proteins. Some physicians automatically prescribe "Creon'.  Additionally stool softeners may be necessary.
Additionally, medications are prone to cause constipation and stool softeners (Lactulose or something of this sort) might be helpful.  Warm prune juice has been mentioned as well.
Definitely talk to the physician about this as you don't want to delay intervention on this troublesome issue.
The search function provided these postings:
http://www.cholangiocarcinoma.org/punbb … 1347339463
Hugs,
Marion

supermom....absolutely, keep fighting.  Great response to the current chemo regimen and tons of good wishes for all good things to continue.  Good luck on the upcoming visit with in Belgium and please keep us in the loop.
Thanks and hugs,
Marion

8

(8 replies, posted in Members' Cafe)

You and Aimee are way ahead of me.  Congratulations. 
Hugs,
Marion

9

(1 replies, posted in Chemotherapy)

Duke....this is what I have learned.  Chemo attacks the cells at a particular stage.

The cell cycle is important because many chemotherapy drugs work only on cells that are
actively reproducing (not cells that are in the resting phase, G0). Some drugs specifically
attack cells in a particular phase of the cell cycle (the M or S phases, for example).
Understanding how these drugs work helps oncologists predict which drugs are likely to
work well together. Doctors can also plan how often doses of each drug should be given
based on the timing of the cell phases.
Chemotherapy drugs cannot tell the difference between reproducing cells of normal
tissues (those that are replacing worn-out normal cells) and cancer cells. This means
normal cells are damaged and this results in side effects. Each time chemotherapy is
given, it involves trying to find a balance between destroying the cancer cells (in order to
cure or control the disease) and sparing the normal cells (to lessen unwanted side effects).

The Cell Cycle
G0 phase (resting stage): The cell has not yet started to divide. Cells spend much
of their lives in this phase. Depending on the type of cell, G0 can last from a few
hours to a few years. When the cell gets a signal to reproduce, it moves into the
G1 phase.
G1 phase: During this phase, the cell starts making more proteins and growing
larger, so the new cells will be of normal size. This phase lasts about 18 to 30
hours.
S phase: In the S phase, the chromosomes containing the genetic code (DNA) are
copied so that both of the new cells formed will have matching strands of DNA.
The S phase lasts about 18 to 20 hours.
G2 phase: In the G2 phase, the cell checks the DNA and gets ready to start
splitting into 2 cells. This phase lasts from 2 to 10 hours.
M phase (mitosis): In this phase, which lasts only 30 to 60 minutes, the cell actually splits into 2 new cells.
Source:  cancer/org

10

(5 replies, posted in General Discussion)

Jess...Perhaps this latest "bugger" can be radiated.  A big part of Percy's legacy within this community is what he has left for us.  The below link offers a wealth of information:
http://www.cholangiocarcinoma.org/punbb … p?id=10240

Also, our Medical Advisory Committee is comprised of numerous specialist, hence you might want to take a look at the below:
http://cholangiocarcinoma.org/the-chola … ry-boards/
Hoping for others to share their thoughts with you as well.
Hugs,
Marion

11

(13 replies, posted in General Discussion)

Rod....keep kicking.
Hugs,
Marion

Reacher....for second opinion you might might want to get in touch with the radiologist at Princess Margaret, Toronto.  They have a robust Hepatobiliary Department. 
Hugs,
Marion

Serena....although we stayed with mostly nutrition reach food, but for weight gain all bets were off.  Ice cream, my husband's favorite, was always available.  Perhaps there is something your Mom likes and that may get her taste buds going. 
Hugs,
Marion

14

(8 replies, posted in Chemotherapy)

Vicky....Based on the experience with my husband you should be over the worst and in the post-chemo recovery stage.  I made sure to have my husband eat as much as he wanted and then enticed him with a few things he had not thought of.  Have fun on your trip and make sure to have copy of some of your medical records and physician's phone number on hand.
Hugs,
Marion

15

(3 replies, posted in Suggestions)

Randi....have you tried "ctrl" and  + while on the site?

16

(8 replies, posted in Members' Cafe)

Ha, ha...Duke....this is close to my heart.  I too take on this huge projects and have come to realize that things don't move forward as quickly they had some years ago.  Painted my house as well, but refrained from high ladder work.  Bottom floors (small ladder) deck and doors - worked out fine.  A good friend took over the more challenging upper floors. 
Hey, good luck on your Mayo visit and completing the house painting in time.
Hugs,
Marion

17

(2 replies, posted in Suggestions)

Duke.....We had instant messaging for 2 years, 2006 - 2007, but it was never really utilized.  Perhaps we chatted 5 times in all.  Perhaps things have changed and if the interest is there I believe that it could be re-installed. 
Hugs,
Marion

Your decision, dear Gavin.

cholangiotango......Someone once said:  this cancer is not for the weak; there is much truth to that.  It is tough having to make decisions based on limited options especially those  presenting with a high risk.  The good news is that your family is closely working together and as Julie has mentioned your Dad's wishes are honored.  Please let us know the day set for the procedure so that a tidal wave of good wishes can surround your family. 
Also,  UCSF, San Francisco, is the closest institution to you conducting MK-3475 clinical research study for participants With Advanced Solid Tumors. 
http://clinicaltrials.gov/ct2/show/stud … ocs=Y#locn
Hugs,
Marion

20

(9 replies, posted in Introductions!)

Chris.....Memorial Sloan Kettering has an informative site regarding integrative medicine.  You might find some of the answers you are looking for:
http://www.mskcc.org/cancer-care/integr … r-products
But, I am hoping with you that others will chime in on this conversation.
Hugs,
Marion

Then please ask your physician to participate in this important study

http://www.cancer.gov/newscenter/newsfr … ripa1ex_pr

Today, NCI announced the Exceptional Responders Initiative, a study to investigate the molecular underpinnings of exceptional responses to systemic treatment in cancer patients. 

To support this initiative, NCI asks clinicians to identify potential exceptional responder cases.  An exceptional responder is a patient having either complete or partial response to experimental or standard cancer therapy lasting for six months or more. This could be from patients enrolled in early phase clinical trials where fewer than 10 percent responded or could be from patients treated on later phase trials of single agents or combinations. It can also be from patients having exceptional responses from established cancer treatment.

NCI plans to examine tissue and clinical data from up to 300 exceptional responder cases and will conduct genome sequencing analyses.  The information will be stored in a controlled access database so that qualified investigators will be able to access it for further research.

For more information on the Exceptional Responders Initiative, please see the press release, "NIH exceptional responders to cancer therapy study launched," as well as these questions and answers. Questions from investigators, physicians, and hospitals looking to contribute tumor samples can be sent by email to the Exceptional Responders email box at NCIExceptionalResponders@mail.nih.gov.

22

(13 replies, posted in General Discussion)

The fight continues, dear Rod.  Forgot to mention, had molecular testing been done?  Tons of good wishes are heading your way.
Hugs,
Marion

http://www.cancer.gov/cancertopics/unde … s/AllPages

24

(9 replies, posted in Introductions!)

Chris....welcome to our site.  I hope for someone to come forward and share their information regarding alternative treatments for this disease.  In the meantime you might want to take a look at the Complementary & Alternative Treatments thread established on our site:
http://www.cholangiocarcinoma.org/punbb … .php?id=23
Hugs,
Marion

Crissie.....we have not seen it on this site.  Here is a link:
http://www.cancer.gov/cancertopics/type … liferative
Also, dear Crissie, have you considered participating in the International Cholangiocarcinoma Patient Registry?   Here you are able to read the de-identified information from others with the disease of Cholangiocarcinoma.  You would need your Dad's medical history.
http://cholangiocarcinoma.org/professio … -registry/
Hugs,
Marion