Here is a link to read more on pain control from Dr. Mantyh, whom I heard speak at the 2014 ASCO Palliative Care in Oncology Symposium.,- … -pain.aspx

Here is the link to the posting I placed on this board last year, re: pain control … p?id=12652



I'm sorry to hear that your dad is struggling with pain control issues.  It sounds like you have received great advice from everyone, and I'm glad that you were able to get an increase in his pain medications. 

This link may be helpful as well,
Karen … medication


(6 replies, posted in In Remembrance)

Today I have been thinking a lot about Percy and the first time I met him at ASCO around the end of May, 2012. 

I remember how full of life and energy he was!

It was a very moving experience for me meeting someone who was living with CC.  He was the first person other than my mother in law that I had ever met with this disease. 

He was an inspiration to me, and such an intelligent, warm, welcoming, and consistent support system for all who came to this website. 

I miss him!



(10 replies, posted in In Remembrance)

I'm very sorry Kris.



I read about this the other day.  Here is some further information for everyone, including the report posted from Virginia Mason, the Seattle hospital mentioned by UCLA. 



(4 replies, posted in Chemotherapy)

HI, Judy.

Here are some websites that might help.  One of them is for Pancreatic cancer, but Folfirinox is a common therapy for this type of cancer. … olfirinox/

Folfirinox consists of:

Oxaliplatin-  Remember, nothing cold in the mouth! Keep extremities warm as well, gloves, hats, etc.
5- FU (which will be in the pump for at home)

Irinotecan-  Watch for diarrhea which can be severe.  Have Lomotil available. 

The following side effects are common (occurring in greater than 30%) for patients taking irinotecan:

"Diarrhea; two types early and late forms.
Early diarrhea: Occurring within 24 hours of receiving drug, accompanied by symptoms runny nose, increased salivation, watery eyes, sweating, flushing, abdominal cramping. (This can occur while the drug is being administered.  If so, alert your healthcare professional promptly.  Medication can be given to stop and/or lessen this early side effect).
Late diarrhea: Occurring greater than 24 hours of receiving drug, usually peaks at about 11 days after treatment.  Because of concerns of dehydration and electrolyte imbalances with diarrhea it is important to be in contact with health care professionals for monitoring, and for medication and diet modifications advice. "

Is there not a home infusion nurse whom will be visiting sometime during the infusion, or is the CADD pump going to be disconnected at the oncologist's office after 46 hours? 

The pump will come in a pouch that can be tucked up or placed across the body.  The central line dressing around the port-a-cath should be tightly secured.  I do not work in home care, but we always make sure that connections along the tubing are tight and secure, that the battery is brand new in the pump, all settings are double checked by pharmacy and two oncology nurses, and emergency information such as what to do in case of a leak, are sent home with you. 
You should also have a little chemotherapy-spill kit just in case, and some gloves.

Another thing, are you guys feeling rushed with the treatment? It sounds like you might be, and if that is the case it is absolutely appropriate to ask for more time of the oncologist and or the N.P., and oncology nurses...maybe even have a home infusion nurse come by. 


I never knew that!  How beautiful!

Lainy, you're welcome!  Kris, thank you for your comments.  Yes, inflammation is known to cause many issues in our bodies, including cancer! Very fascinating, complicated, and worrisome.

By the way, Marion gave me the heads up that as of last year, the genome for a particular liver fluke was discovered. … trics/news

Oh, and Kris, I noticed you are from Chehalis! I lived in and around that area for quite a long time.  Wasn't it the Skookumchuck and Chehalis rivers that flooded so badly back in what, 1996?


Thanks, Gavin! 


This is a paper out of Korea that I had not seen before, with more discussion about liver flukes, (a known causal agent of CC) chronic inflammation, and the high incidence of Cholangiocarcinoma related to this chronic inflammation in Southeast Asia.

"These facts suggest that clonorchiasis induced chronic persistent inflammation may develop to cholangiocarcinoma, and probably through step-wise evolution via precancerous stages".  (Lim, 2011). 

Clonorchiasis sinesis is one type of liver fluke.   

What I think is very important to note, is that there is an irritant (the liver flukes and it's eggs, with subsequent bile duct irritation) and the author states that this "chronic persistent inflammation" can cause CC due to cellular changes.  In fact, he states they are "step-wise" which to me would suggest that there is a pattern. Maybe from low grade dysplasia or cellular changes that are not too different from the normal cell, on through to severe dysplasia (many abnormal cells) to cancer.

Now I just want to know what causes the inflammation in people WITHOUT liver flukes, PSC, and other diseases, such as with my mother in law. Also, how to catch the precancerous, low grade dysplastic changes which must surely be present, and remove the cells before cancer develops.


Please understand that this is only my opinion and not intended as fact.  Always consult with your physician if you have questions or concerns regarding your medical condition.


(0 replies, posted in Thought for the Day)

I came across this positive message after meeting a special woman in Georgetown this past weekend.  She has a follow up scan on Monday, after liver resection for Cholangio and clinical trial treatment.  I will be thinking of her tomorrow!

Scanxiety [skan-zhay-i-tee] (n.): the sense of anxiety induced by an upcoming scan.

"Try getting yourself ready for your upcoming scans this way: imagine that the scan machine is a security guard who works for you and is there to protect you and check for intruders and not a big, scary symbol of sickness. Even though your previous scans led to your current diagnosis it doesn’t mean your next scans will. Just stick to the facts, and remember that the scan machine might save your life".


Two years before diagnosis my mother-in-law developed a heart arrhythmia which she started treatment for.  I think that she was also under quite a bit of stress around this time.

1.5 years before diagnosis, she began  to act strange, just not herself.  Confused in a way-forgetful. Unable to handle any life situation that was slightly out of the norm.
She also began to change her diet, complaining of stomach issues.  She thought it was a  possible gluten allergy.

3 months prior to diagnosis, she told me that she thought she had stomach cancer, and that she had been losing weight. 2 months, right upper quadrant pain, ascites.

In the late 1970s she was accidentally caught in the spraying field of a bi-plane crop sprayer, and developed fulminant hepatitis sometime after that, which she recovered from.  This hepatitis was not related to a virus.  It developed for an unknown reason. 

Unresectable Intrahepatic CC June 2010.


(8 replies, posted in General Discussion)

Hi, Erin,

I'm sorry to hear that your Mother-in-law is suffering from this.
There is no set time with which someone can live with ascites, I mean, there isn't a time frame per say.  The only issue is that it can get rather uncomfortable for someone if their belly is very swollen.  You may see that it makes it harder for her to breathe if she is laying flat, as the fluid will be pushing upwards on her diaphragm in this position.   She may need to sleep in a recliner, an adjustable hospital bed, or be propped up with many pillows to provide comfort, which is definitely do-able.  She could also have an external drain placed that is attached to a bag for emptying.  There is a small valve on it that can be opened to allow fluid from her belly to drain out, which will ease some of that pressure/discomfort. … /patients/

I hope this info helps you, to help her! 

Karen D

Please see this message as my opinion only, and do seek professional medical advice from your treating physician.

My apologies for including the incorrect link for Dr. Bower's inflammation study.  I have updated with the correct link where a PDF may be accessed.

Thank you,


http://www.integrativeoncology-essentia … europathy/ … ptoms.aspx


Here is a brief report for our discussion board reviewing information about cancer related fatigue.  Fatigue is the number one side effect experienced by those receiving cancer treatment or those who have completed treatment. 

Some of the information is technical for those who like data, but please scroll to the bottom of the report as it outlines 3 important things to bring to your health care provider.  Fatigue can really impact your quality of life, so any method to diminish this side effect is a plus in my book. 


                                                 Palliative Care in Oncology Symposium
                                                             Boston, Massachusetts
                                                               October 24-25, 2014
                                                              Cancer Related Fatigue

  The National Cancer Institute states that "Fatigue is the most common side effect of cancer treatment with chemotherapy, radiation therapy, or selected biologic response modifiers". (National Cancer Institute, n.d.).  It is an often under-reported symptom which may persist even years after treatment. 

  One of the very interesting sessions I attended was lead by Julienne Bower, PhD from the University of California, Los Angeles.  She has done extensive research involving fatigue in cancer patients and survivors.  What she shared with attendees was information about the ASCO committee which works to improve the lives of survivors through evidence based practices.  A screening assessment for fatigue has been developed for health care provider usage.  This assessment assists them in evaluating the true degree of fatigue that someone may be experiencing.  Certain steps are then taken depending on where the person rates themselves on the scale.  This scale is a part of the ASCO clinical practice guidelines on fatigue publication. … y-clinical

  Dr. Bower’s interest in cancer related fatigue (CRF) not only focuses on the possible causes for this symptom, but ways in which to treat it.  It has been hypothesized that CRF is a result of inflammation within the body.  An older study that Dr. Bower co-authored in 2007 discusses how this might occur. … s30265.pdf

  Because it has been speculated that inflammation is a possible cause of CRF, and inflammation is a complicated body response to stress, methods to reduce stress were studied. 

1. Mind-body treatment
2. Exercise
3. Activity modification

  Restorative yoga was the mind-body/exercise that Dr. Bower has shown to produce a measurable improvement in the degree of CRF experienced by cancer patients and survivors.

  The possibility that a gentle exercise program such as yoga has been clinically shown to decrease the level of fatigue and depressive symptoms, and increase vigor, is very promising in my opinion.  Yoga is a non-pharmacological intervention that has in this study, been shown to work.

  For those of you reading over this information who may not be medical professionals,  what I would take away from this report is as follows:

1. Fatigue is a common symptom that cancer patients experience.  You are not alone.
2. Tell your physician, oncology nurse, or other health care provider if you are experiencing fatigue that impacts your daily activities.
3. Discuss with your healthcare provider the potential for you to engage in stress reduction techniques such as a gentle yoga program, walking, stretching, or other simple exercise routine. 

Thank you,
Karen D, CCF patient advocate

Bower, J. (2014, October). Fatigue and the cancer survivor: ASCO guidance recommendations. Palliative Care in Oncology Symposium. Lecture conducted from Boston, Massachusetts.

National Cancer Institute. (n.d.). Fatigue. Retrieved from … onal/page1

You're welcome, Gavin and Marion!


Palliative Care in Oncology Symposium
Patient-Centered Care Across the Cancer Continuum

October 24-25, 2014
Boston, MA

Hello everyone on our discussion board!  Today I am attending the inaugural symposium of palliative care in oncology with another advocate, Heidi. We are attending to our booth,  distributing information about our foundation, and networking with healthcare providers.  We are also attending sessions to gather information about the latest research in palliative care.

The first session we attended was entitled, The Three Ms of Symptom Science- Mechanisms, Measurement, and Management.

Mechanisms driving cancer pain was the initial topic of discussion, presented by Patrick W. Mantyh, PhD, JD from The University of Arizona.  Dr. Mantyh stated that the main goal of his work was translation of research from lab based to human based clinical trials on cancer pain.

The main type of pain that Dr. Mantyh discussed was bone pain.  This is a very common type of pain for cancer patients due to various factors including bone metastasis.  He explained through his presentation that nerve fibers undergo a rapid growth within the tumor that is abnormal.  These neuromas, or nerve tumors in bone can spontaneously discharge (suddenly send out a nerve impulse) unrelated to movement of any kind which can cause sudden bone pain.  From my understanding, Nerve Growth Factor (NGF) involved in the growth of these neuromas is driven from stromal cells ( not just from bone cancers but from other cancers as well.

The main points gleaned from this session are as follows:
1. Start cancer pain management early as this has been shown to diminish the nerve sprouting thereby decreasing the pain
2. Early pain management helps the patient to be more resilient throughout treatment

Mantyh, P.W. (October 24,2014). Mechanisms Driving Cancer Pain. Palliative Care in Oncology Symposium. Lecture conducted from Boston, Massachusetts.

Thank you,
Karen D, CCF Patient Advocate

Thank you for posting a link to this article, Gavin.  This was a hot topic of discussion this past week at the AHPBA convention in Miami.



(11 replies, posted in Members' Cafe)

Thinking of you Percy!


(7 replies, posted in General Discussion)

I'm posting a little late on this, but just to add to Kris' comment, it's Monday, and if the surgeon who placed your new port on Friday accessed it ( left a needle in the port under your skin), and there is gauze around the needle and this is covered with the clear sticky dressing, you should notify your oncologist's office. Then you can stop in and have the nurses remove the sticky clear dressing and the gauze underneath and do a sterile central line dressing change. ( gauze underneath a central line dressing should be changed within 24 hours).

This is only if the physician who placed the port a cath  left a needle in, with gauze around it.

Hope this helps and that you are doing well!

Karen D
( Oncology nurse)


(14 replies, posted in General Discussion)

Danna I just thought of another thing,
when the pharmacists are mixing your chemo drugs up into the solutions, sometimes there is some "over-fill ".  The bags are not always the same. You will get the right amount of drug, but might be more or less diluent. (more fluids that the drugs were mixed with).

Just a thought.



(14 replies, posted in General Discussion)

Hi Danna!

You're right, why would the doctor be upset the first time and not the second?   If I were getting chemo and there were any changes, I would want to know what in the world was going on too! smile 
Is the doctor you are speaking of your local oncologist, and he is following Dr. Javle's/MD Anderson chemo protocol?

Your pre-medication (before chemo) probably runs between 15 minutes and 30 minutes per bag.
Then you said 2 hours of hydration. Is the Gemzar running at the same time as your i.v. fluids or are they doing it after? (you said they "combined" this).
Then 1 hour of Cisplatin.
So maybe 4.5-5 hours?

Was it the entire process from start to finish that was 6 hours before? Pre-medication, hydration, Gemzar, Cisplatin?

What do you think the nurses are running in faster this time? The hydration maybe? I think the most important point is how fast the CHEMO is being infused.  The hydration can go faster or slower, the pre-meds can go faster or slower....but the chemo should be infused per the specific orders and required time frame, (the drug information from the drug company, etc. sets the standard).  unless there are issues.

As far as potassium in your bags of fluid, that was most likely because your potassium level was off a little when your labs results were reviewed and your oncologist ordered for it to be added. Or maybe you just got little mini bags of potassium. Those are usually a dose of 10 MEQ (milliequivalents)  and infuse over 1 hour per bag.

I hope you are feeling "ok" while getting your infusions.  Are your pre-meds keeping nausea at bay?  Are you able to get enough rest and adequate hydration? 

I will keep you in my thoughts, let me know what you hear back!


(All information is my educated opinion only and not to be used as medical advice. Please consult your prescribing physician).

Hi Percy,

Thinking about you and hoping all is well in California!



(14 replies, posted in General Discussion)

Hi Danna,

This is Karen!  Marion contacted me about your question.....and Jason's response it pretty spot-on. 

Here is what I emailed Marion:

As far as that question goes, there are many factors that go into chemo dosing.
Gemzar is generally over 30 minutes, Cisplatin anywhere from 2-3 hours rapid bolus infusion, or 6-8 hours.  (Plus pre-hydration with 1-2 Liters of normal saline pre-chemo and sometimes more afterwards.) BUT, with chemotherapy the patient's age, weight, their body surface area (BSA), their labs (hemoglobin/hematocrit, WBCs, absolute neutrophils, etc.  are all part of the calculation.  Also, with Cisplatin, the serum creatinine, liver and kidney functions, and urine output, come into consideration.  So it is a slightly difficult question to answer without all of the information.  Also, I don't know if she is on some sort of clinical trial being that they have orders from MD Anderson. That hospital or trial may have a different protocol than another.  (or the patient may have dose modifications based on the above listed criteria, or toxicity issues).

I'm curious if the chemo orders are for 6 hours total including pre-hydration, Gemzar, then Cisplatin?   Maybe it's 30 minutes of Gemzar, 2 hours Cisplatin, 1 hour hydration, I'm not sure.

What I would suggest, is to just ask the nurses that are giving the infusion.  Sometimes doctors will say "you will be in the infusion room for "this" many hours", when in reality, they are there for less time, or more.  Ask the nurses how long it takes for the Gemzar and why, how long do you run the pre or post hydration and why, and how long do you infuse the Cisplatin, and why? The nurses are following the doctors orders, but we are also required to have gone through training from ONS and become Chemo/Biotherapy certified, and be tested to hang chemo per the hospital and the Oncology Nursing Society protocols.
Chemotherapy orders are also checked by two chemotherapy pharmacists prior to mixing and again when done mixing, checked by the pharmacist/chemo nurse on receipt of the drug, then checked again with two chemo nurses before hanging the drug.   Many checks along the way, and if there were a mistake it will be caught.
The nurses will be able to explain their reasoning....and I'm sure there is a good explanation.  I'm sorry if I am not able to give a simple answer! Hopefully this response helps a little though.

In addition, Danna,  if you feel any sense of worry or concern over your infusion just let those nurses know.  YOU are the one getting the chemotherapy, and YOU should feel comfortable.  Ask them a million questions and they should take the time to explain everything.   It is their responsibility to do so.

I wish you the best,


(All information is my educated opinion only and not to be used as medical advice. Please consult your prescribing physician).