positivity...more harm than good depends on the individual circumstances and the patient's desire and options available to fight his/her disease.  Overall life has been extended with the various treatment options, but it doesn't fit everyone.  This cancer is unique in it's presentation and should be evaluated case by case.

Hugs
Marion

Brigitte....I don't recall when your status changed, but have you noticed the current description in your signature box as  Senior Member. 

Nothing has been easy with your treatments, but ultimately you have faired well.  I like the fact you are kept overnight for observation.  Yes, it's cumbersome to board the dog and having to ask someone to take care of your fish.  You are well cared for and the dog (don't know about the fish) will be thrilled to have you back the following day.

TACE has shown to be quite successful with numerous patients and I expect the same for you.

Crossing my fingers for a "perfect" outcome

Hugs
Marion

3

(51 replies, posted in Introductions!)

momof3....perhaps your husband needs to see additional information re: the efficacy of chemoembolization and what the anticipated  outcome may be for him.   


Hugs
Marion

Fred...You are welcome we are here to help and we are in this together.

In reference to "My oncologists are skeptical because of the risk of surgery and the likelihood of recurrence" I would want this confirmed by a super qualified surgeon. This cancer requires 2nd or 3rd opinions from physicians treating a "high" volume of cholangiocarcinoma patients. 

Having said that the current path of treatment i.e. gem/cis, tissue analyses is pretty much the course everyone else would recommend.  Winship sees a fair amount of CCA patients, but specialist disagree with their approaches, hence obtaining an additional opinion (or two) may also be beneficial.  If nothing else  you will receive confirmation that the current treatment prrotocol is agreeable with other physicians as well.

Happy to hear you are viewing the 2017 conference.  It provides the most up to date information for this disease. 

My motto is:  an educated patient makes the most educated decision and knowledge is power.


Hugs
Marion

Thanks, Gavin, for adding the link

Hugs
Marion

Fred...I agree with Mary's assessment, investigate with another surgeon treating a high volume of cholangiocarcinoma patients. 

Secondary resections are not uncommon, but much depends on the location of the recurrence.

You may want to take a look at Dr. Kato's web presentation:
Surgical Management of Cholangiocarcinoma – State of the Art and Beyond
http://cholangiocarcinoma.org/webinar-s … nd-beyond/

Hugs
Marion

Fay......here is a bit more information about hyperthermia.  I don't recall anyone on this site cured with this type of treatment, but some have tried it. 
http://www.gorter-model.org/hyperthermia/

Hugs
Marion

A more detailed information provided by the FDA

https://www.fda.gov/NewsEvents/Newsroom … 560167.htm

Please know that MSI is a DNA repair gene and is indicative of Lynch Syndrome, which can lead to a variety of cancer  manly colon, but also cholangiocarcinoma.

Most physicians have tissue tested for MSI.

Hugs
Marion

patients with unresectable or metastatic, microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) solid tumors that have progressed following prior treatment and who have no satisfactory alternative treatment options

Read more:
https://www.fda.gov/Drugs/InformationOn … 560040.htm

11

(0 replies, posted in Insurance)

Register for the New Rare Webinar.  Liston to financial experts help guide you through the maze of occurring cost:
http://mailchi.mp/globalgenes/t695d0cds6?e=40d868179c

Finally, us "rare" ones are receiving more attention, because 20% of all cancer diagnosed are "rare".
http://www.ascopost.com/News/55663?utm_ … rm=6643655

FDA report: Products Claiming to "Cure" Cancer Are a Cruel Deception

14

(51 replies, posted in Introductions!)

Gail....Rambling is good, we are here and we understand and want to support you all the way

Are you able to switch to a palliative care team?

So much agree with you, quality of life is taking precedence over quantity of "possible" life.  It's likely that with good support addressing all physical and mental needs your family will enjoy meaningful time together. 

Hang in there, dear Gail. Sending a tidal wave of good wishes your way.

Hugs and love,

Marion

positivity....there are many similarities with our cancer, but unfortunately similarities do not transfer to our cancer.  Many other cancers have approval for drugs, which in turn have not shown to benefit our patient community

There are numerous cholangiocarcinoma  studies underway holding the  answers we are waiting for.

Hugs
Marion
.

Don.... Recovery is not easy, but should be slow and steady.  Try to remember to hold a pillow against your abdomen when coughing.  How is your digestion coming along?

Hugs
Marion

Rellhabit....welcome to our site and congratulations on your successful surgery. So happy you joined us.   How is your recovery coming along? 

Hugs
Marion

18

(2 replies, posted in Clinical Trials)

deadlift.....absolutely, the  abdominal drainage will ease your wife's discomfort.  One never knows who will respond to the immune checkpoint inhibitor.  We have seen some remarkable outcome and I wish the same for your wife.

Hugs,
Marion

19

(10 replies, posted in Introductions!)

Heap....you have to know that statistics are used to generate the data.  Eleven months are the average, but then there are those on the other end of the spectrum. 

Most importantly one should remember that this cancer can be treated similar to that of a chronic disease.  Once the patient experiences drug resistance or maximum benefit then the next treatment is considered. 

It's best to not focus on life expectancy as no one can predict that.  Better to focus on response to treatment and contemplate the next course of action.

Hugs
Marion

20

(10 replies, posted in Introductions!)

Heap....correct, gem/cis is the preferred standard of treatment for cholangiocarcinoma. This is based on the ABC-02 clinical research study
http://www.nejm.org/doi/full/10.1056/ne … #t=article

Hugs
Marion

Diane....good luck and please keep us in the loop.  We care and we are in this together.

Hugs,
Marion

Some prefer wearing wigs while undergoing cancer treatments. I don't know of anyone taking advantage of this service, but if you are contemplating such  please share your experience with us. 
http://hair.lovetoknow.com/Free_Wigs_fo … r_Patients

Hugs
Marion

This study relates to breast and colon cancer, but fear of recurrence affects everyone

A study showed Patients received benefits from Blended Cognitive Behavior Therapy
http://www.ascopost.com/News/55647?utm_ … rm=6631117

24

(16 replies, posted in General Discussion)

Taylor....the 3 months time line is not written in stone,  it's a "likely" prediction only.  For all we know your mother in-law will be talking about this cancer for quite a while to come.  We experienced it on the board many times over in that patient's outlived this cancer for years and  are going strong. to this date.  Take a look at Cathy's (jathy1125) posting. 

The issue of Quality of life vs. Quantity of life ultimately is made by the patient.  Current treatment options offer "hope" but do not guarantee individual success.  A  cancer diagnosis most often translates into loss of power over one's life, however the decision of how to address the disease is in the individual's hand. 

If indeed your mother in-law seeks the recommended treatment then she doesn't give up the power of either continuing or abandoning the treatment. 

It's unlikely for any physician to recommend Cannabis.  It's been studied and proven to be successful in many ways, but physicians can refer to any  data derived from clinical research studies, which in turn set's the gold standard of patient care.  For our cancer as well as any other cancer we can't refer to one single outcome of survival with Cannabis.

From a personal standpoint I strongly believe for cannabis to have a role in all areas of healthcare.  We are noticing an explosion in research into the healing properties of cannabis and soon will have clear data to look back on.

My two cents. 

Hugs
Marion

Julie...we must believe you benefitted as well.  That's the great mystery of cancer treatment some benefit whereas others do not.  Let's see what comes out of the discussion.

Hugs
Marion