Wow....Important info for our NJ patients.  Thanks for sharing.

Hugs
Marion

Hello, Wim, welcome to our special group of people touched by this cancer.  So sorry to hear of your Mom's pain following stent insertion.  Hoping it will have eased by now.  In any case, make sure to report to the physician any changes i.e. fever as well as an increase in pain.

Your Mom should feel significantly better.  Her bilirubin will drop and the yelowing of her skin color will disappear, but give it some time.  Skin takes a bit longer than the yellowing of her eyes, which can be gone within hours. 

The nausea should decrease as well.  It's very difficult to predict life expectancy as it varies from person to person, but I would not focus on it.  This cancer can be treated similar to that of a chronic disease, your Mom very well be around to talk about it in years to come. 

I realize that surgery is not possible at this point, but what treatments have been offerd to her?

Hoping for others to chime in as well, as the collective wisdom of this board derives from the hundreds of members sharing and advising us all.

Hugs
Marion

Fay.....your Mom is doing fantastic, couldn't be more thrilled to read your posting.  Physicians are people, some have good manners whereas others do not.  Try to not take it to heart, the fact your Mom is doing well only attests to the fact that this disease can be treated.   Who knows what will happen next year or the time to come?  For all we know, your Mom will be dancing.

Hugs
Marion

Love it, Beatriz. 

Hugs
Marion

Excellent article.  Thanks for sharing

Hugs
Marion

6

(3 replies, posted in Nutrition)

positivity......tons of postings on Megace.  It appears to help some and not do so well for others.  Basically, it is the synthetic form of cannabis. 

All drugs contain substances we could do without, but the way I look at it:
What is the most important reason for using a specific drug? Does it achieve the overall goal of what I am looking for? 

Hugs
Marion

positivity....have you tried the "search" function by entering Cryosurgery?  It's been around for quite some time and has been used for CCA treatment as well.

Hugs
Marion

Katrina......I am over the moon for you.  Virtually no side effects and significant shrinkage of 20%.  Wow.  You are doing great.

Thanks for sharing the tips and hints with all.   I expect continuous good news coming your way?
Thanks again for keeping us informed, we are with you, all the way.

Hugs
Marion

9

(10 replies, posted in General Discussion)

positivity....it's really important to know why your Mom is fearful of eating.  Has she ever vomited due to overeating and if so,  how much food had she consumed?  Abdominal pain - is it caused by a certain type of food (carb's can be difficult to digest as is meat).  Does she have regular bowel movements? 
Have you discussed with her physician the use of stool softeners? 
Inactivity - is your Mom moving around and especially following her meal intake?
Years ago I attended a seminar on sluggish bowels treatments. In severe cases patients were advised eating meals while standing up. 

The more you are able to identify the more answers will come your way.

Hugs
Marion

10

(1 replies, posted in General Discussion)

deadlift....you have a great oncologist on your side.  Although, my husband tried his best with the intake of fluid, but every three days  we had to take him to the hospital for hydration.  Ultimately we choose TPN, which in turn satifsfied his nutritional need as well as solved the hydration issues.

Hugs
Marion

Jjgunny....please accept my most sincere condolences on the passing of your dearest sister.  There are no words to help ease you through this most difficult of times, but know that we are here for you, always.  Myrna's legacy is forever embedded in our hearts and on this site.

Hugs and love,

Marion

You must wonder why at times we simply place a link on the site minus our comments.  The problem with many of the publications is that they are protected by copyright, it's stricly enforced.

13

(10 replies, posted in General Discussion)

positivity.....Appetite loss is common among cancer patients, and can be directly caused by cancer, particularly cancers of the gastrointestinal tract like stomach and pancreatic cancers.  Have you considered consulting wih a Dietitian?  Also, who is your Mom's primary care physician, who is in charge of her care?    Is she depressed?  Are there certain foods she can be enticed with?  What happens if she eats foods not on the allowable list due to her underlying disease? Does your Mom have access to a palliative care team? Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

It's very difficult to regain weight when on a downward spiral and eventually, no matter how hard we try, cachexia (wasting syndrome) may set in.  When that happens nothing helps with weight gain,  food simply becomes the fuel for cancer growth.  http://www.cancercachexia.com/what-is-cancer-cachexia
I don't have the answer to what is causing your Mom's lack of apetitite, but have you spoken with her?  What does your Mom want? Does she want to continue to fight or is she doing it for you only?
I thinks it's really important to have these questions answered, because without a common goal neither of you will obtain positive results. 

Realize that caregiving is enormouly taxing on the individual not only emotionally but physically as well. Be kind to yourself. We want to have a definite answer to our questions, but the reality is that too many things are not explainable and the answer may be floating around somewhere in the Universe.  That's when our  focus shifts to symptom control.

Hugs,
Marion

14

(7 replies, posted in Survivor Stories -->[NEW]<--)

Julie....you just know to make our day!!!!!!!

Hugs
Marion

I googled: "Grief sessions for childen" and many places popped up. Perhaps you can find one near you.  As Lainy mentioned, Hospice is another good resource.  Also, see if you can make contact with the school counselor, local clergy (if applicable) and the City itself for possible programs.

Hoping for others in same situtation to come forward and help you out.

Hugs
Marion

The decrease in cancer death rates in the United States has been uplifting news for the nation and a great source of hope for the cancer research community. A point of frustration, however, has been the continued ethnic/racial and socioeconomic disparities in cancer outcomes.

https://www.cancer.gov/news-events/canc … =eb_govdel

TAPUR Trial Leverages Genomic Testing for Precision Medicine

http://www.oncotherapynetwork.com/cance … s=11072017

http://www.oncotherapynetwork.com/news/ … s=11072017

Probiotics are live microorganisms (in most cases, bacteria) that are similar to beneficial microorganisms found in the human gut. They’re also called “friendly bacteria” or “good bacteria.”

There’s preliminary evidence that some types of probiotics may help to prevent diarrhea caused by infections or antibiotics and help with symptoms of irritable bowel syndrome. However, we don’t have definitive research proving that probiotics improve any health condition.

Read more:  https://content.govdelivery.com/account … ns/1a9235f


Marion

Jonas....good to hear that all test results came back as normal.  I wonder, have they checked her potassium level?  Just thinking out loud.  It may or may not provide some answers re: Myrna's occasional state of confusion. 

Thinking of you and sending a tidal wave of good wishes your way,

Hugs
Marion

positivity.....This board was developed for sharing of opinions, glad to see that you bring your point of view to our attention. 

My personal experience with this cancer as well as what I have learned as a member of this board for 11 years in additional to my professional function as clinical research/patient navigator and patient advocate has taught me to fully support the wishes of the patient.  And, this leads me to the expression of “hope” and what it means to me.

Simply said, having hope is to imagine a positive outcome.

Again, this varies from person to person.  As far as I recall, your Mom is not healthy enough to undergo  cytotoxic (chemotherapy) treatments and also she is underweight.    You choose to focus on building her immune system and the implementation of  nutritional changes best suited to her.  So, you are doing what you feel is right for her.  Makes perfect sense for your Mom.

However, this approach does not fit everyone and I wonder whether you would have a different viewpoint if things were different for your dear Mom.  Would you consider chemotherapy if indeed your Mom could tolerate it? 

Myrna, wants to fight this cancer in a different way, that is understandable as well.   

And, what about the thousands of patients choosing active treatments with the variety of drugs available to us?  We have seen some incredible responses to currently applicable treatment.  Yes, there are side effects (some people experience it more than others) but most recover and are here to talk about it. 

Ultimately, we must remember that due to lack of funding  rare cancer suffer from research neglect.  Unlike the major cancers (breast, prostate, lung, etc) we simply don’t have enough data to fall back on.  Phase III clinical trials are difficult to conduct (too few patients and too many  late stage diagnosis),   but we need the data of Phase III studies, which proves the advantage of one particular treatment vs the other. 

The good news is that the current research is focused on biologic agents such as immune checkpoint inhibitors and molecular drugs, which in turn addresses the molecular underpinnings of tumor growths.  Immune checkpoint inhibitors allow T-cells to recognize cancer cells and thereby support the body to fight off these unwanted cancer cells.   This is Personalized Medicine.

Hugs and more power to all,

Marion

See the currently available 27 targeted agents  with expedited acess for basic and clinical research: 
https://nciformulary.cancer.gov/availab … efault.htm


Marion

Patients will dramatic and long-lasting respone to treatment that was not effective for most similar patients are considered exceptional responders.

Who is an Exceptional Responder?
An exceptional responder is defined as a patient with cancer who has:

a complete response to a drug(s) where complete response is seen in less than 10% of patients receiving similar treatment; or
a partial response lasting at least 6 months where such a response is seen in less than 10% of patients receiving similar treatment; or
a complete or partial response that lasts longer than 3 times the median response duration in the literature for the treatment

Read more: https://www.cancer.gov/news-events/canc … =eb_govdel

The National Cancer Institute (NCI) has embarked on the Exceptional Responders Initiative (ERI) to understand the molecular underpinnings of exceptional responses to treatment, primarily via chemotherapy, in cancer patients.

To read more: https://www.cancer.gov/about-cancer/tre … tiative-qa

Marion

Jjgunny...it's so difficult to accept the seriousness of your sister's current health condition.  But, given the fact that they physician administered chemotherpay despite the high bilirubin count (7) when normally it should read 2. only  shows how hard he is trying to change things for the better.  You must know that all toxins are filtered by the liver and a compromised liver is incable of doing it's job.  Your sister must regain some of her strenghts and feel much better prior to moving on to another regimen.

Hugs and love,
Marion

Diane.....venting helps, glad you choose to do so on this site.

I have learned that gastric cancer patients , including CCA patients have a tendency to throw clots.  It was discovered by Armand Trousseau, who first describes this finding  in the 1860s and he later found the same sign in himself.  Trousseau syndrome is an acquired blood clotting disorder that results in migratory thrombophlebitis (inflammation of a vein due to a blood clot). Although not always associated with an internal malignancy, many cases do show an underlying cancer.  However; based on the thousands of reports on this site,  I estimate (don't hold me to it)
trombosis affects less than 10% of our patient, hence you never know in advance who will be affected by this syndrome. 

Stents are a different story in that we know that at one point they will become infected.  On the average plastic stents last for 90 days, but here again some people can go longer whereas others need replacement within 6 weeks or less.  In this case it's best to take the temperature (daily) and to head to the hospital once it reads 101 F.  Other signs of an impending infection can be a sudden onset of shaking minus a raised temperature.  This shaking is called "rigors".  In any case, a physician must be notfied. 

I so much understand your frustration, Diane, because we would love to know in advance what to expect with this cancer, but it's so darn hard to predict as to who get's what.

Hang in there Diane, you are handling everything in the best way possible.

Hugs
Marion