Annie,

I have read through the study that you posted, and it is a very interesting study.  Thank you for sharing it with all of us!

I so wish that I could give you an answer that would be of help to you, but I just do not have one.  I remember very well feeling frustrated with the lack of clear diagnostic information when my mother in law was diagnosed.  I felt I should have seen that something was wrong, that her physicians must have missed something, that there had to have been some sign that she had cancer. 

Unfortunately, there are currently no early diagnostic tests, tumor markers, or anything of the sort that would flag someone as having developed cholangiocarcinoma...or at least none that I know of.  I must say that I feel if there were a clear association between gallstones/cholecystectomy and bile duct cancer, that the incidence rate would be rising exponentially.  Unfortunately, the current evidence does not strongly suggest that this is the case.  But this is just what I know, and I am certainly not an oncologist or a researcher.  I am however, someone who has been where you are, and I too continue to look for information that may lead me to a greater understanding of this disease. 

It is important to know as well that researchers have taken notice of this disease within the last few years.  Work is diligently being done to discover why this disease develops, and how it can be treated. 

Again, I am very sorry that I cannot give you a clearer answer.

-Karen

Hello Tony,

I am so sorry to hear that you wife is experiencing pain such as you described.  I will ask you just a few questions about her pain, and will also suggest that you keep in close contact with her oncologist or a palliative care physician as they are skilled in cancer pain control.

In the U.S. we ask individuals to rate their pain on a 0-10 scale.  0 is no pain, and 10 is the worst pain imaginable.  How would she score herself on this scale?  Is her pain interfering with her regular daily activities?  Is she experiencing any new loss of sensation, numbness of tingling in her  feet/toes/legs?  Is she having bowel of bladder control issues that are new, or loss of balance?

Has she taken any opioids like morphine before?  Physicians generally follow an analgesic ladder to treat pain.  She could ask the oncologist if taking an NSAID such as ibuprofen would be alright, or perhaps Tylenol if her liver functions are fine.  If her pain level is anywhere above a 4-5 on that 0-10 scale though, she should seek assistance from the physician to prescribe a short acting opioid.  It is best to treat her pain earlier rather than later.  It is much more difficult to control pain when it has become severe, and as research has shown, early pain control will decrease the occurrence of nerve sprouting and further increased pain episodes.

I hope this will help you both!  Increasing levels of pain significantly impacts a persons quality of life, so please do not hesitate to insist on aggressive pain management from her providers.

Karen, RN, CHPN

Hello Tony,

I am so sorry to hear that your wife is experiencing pain such as you described.  I will ask you just a few questions about her pain, and will also suggest that you keep in close contact with her oncologist or a palliative care physician as they are skilled in cancer pain control.

In the U.S. we ask individuals to rate their pain on a 0-10 scale.  0 is no pain, and 10 is the worst pain imaginable.  How would she score herself on this scale?  Is her pain interfering with her regular daily activities?  Is she experiencing any new loss of sensation, numbness or tingling in her  feet/toes/legs?  Is she having bowel or bladder control issues that are new, or loss of balance?

Has she taken any opioids like morphine before?  Physicians generally follow an analgesic ladder to treat pain.  She could ask the oncologist if taking an NSAID such as ibuprofen would be alright, or perhaps Tylenol (or Paracetamol in Europe) if her liver functions are fine.  If her pain level is anywhere above a 4-5 on that 0-10 scale though, she should seek assistance from the physician to prescribe a short acting opioid.  It is best to treat her pain earlier rather than later.  It is much more difficult to control pain when it has become severe, and as research has shown, early pain control will decrease the occurrence of nerve sprouting and further increased pain episodes.

I hope this will help you both!  Increasing levels of pain significantly impacts a persons quality of life, so please do not hesitate to insist on aggressive pain management from her providers.

Karen, RN, CHPN

What should you know about palliative care?

Hi folks,
for some reason there are issues with the links that I had posted.  I will try again with new links.

English, Spanish, and Portuguese versions with wonderful, easy to understand information about palliative care

English

http://iom.nationalacademies.org/Report … 1447254540

Spanish
http://iom.nationalacademies.org/Report … 1447254540

Portuguese

http://iom.nationalacademies.org/Report … 1447254540

Karen D., RN, CHPN

Information gathered on biliary drains from major centers of care in the United States, search terms: Biliary drain leakage, biliary drains, biliary drains not attached to drain bag, leakage at insertion site from biliary drains

Stanford
https://stanfordhealthcare.org/content/ … cation.pdf

Memorial Sloan Kettering (MSKCC)
https://www.mskcc.org/cancer-care/patie … e-catheter

University of Washington
http://www.uwmedicine.org/health-librar … drain.aspx

The Ohio State University Medical Center
https://patienteducation.osumc.edu/Docu … yDrain.pdf

University of San Francisco (UCSF)
http://campuslifeservices.ucsf.edu/dmx/ … UR0320.pdf

Beth Israel/Harvard
http://www.bidmc.org/Centers-and-Depart … 0tube.ashx


Common finding: If leakage, attach to drain bag.  These facilities say to flush daily with saline and to call if excessive leakage. 


-Karen, RN, CHPN

Dmr1965,

I'm sorry to hear of the problems that you have been having with your biliary drain, pain, and constipation.  This must be so very frustrating for you!

My name is Karen, and I am an oncology nurse who is involved with the foundation doing various activities.  Marion contacted me about your specific posting to see if I could add any information for you.

As far as your drain goes, I have cared for people with external drains that are capped and or attached to a drainage bag.  I have always flushed drains at least once a day with 5-10 ml of saline to assess patency and reduce the chances for occlusion. 
It is not uncommon for the biliary drains to leak at the insertion site, and I've had to do many dressing changes on people with this issue.  Have you or do you ever attach your drain to a bag for drainage?  Have you tried this to see if leakage at the site of insertion subsides? 
Are you bilirubin levels checked often, and are you free from jaundice?

You mentioned as well, that you suffer from abdominal pain, bloating, and so forth that it managed with narcotics.  Has your oncologist or gastroenterologist ever suggested enzyme replacement?   Here is a link to an old thread on digestive enzymes: http://www.cholangiocarcinoma.org/punbb … hp?id=9106

I will do some more searching around for you for reputable, peer-reviewed articles that may be of help for your stent leakage, or pain issues as well as searching for drain care from the major cancer centers.   My personal experience though, as I mentioned, is that leakage is bothersome but not uncommon.

-Karen

http://www.cancer.gov/publications/pati … ced-cancer


A link to a quality publication to help those diagnosed with cancer that is not curable, and their families.

-Karen D

NuclearNikki,

I read through both of your posts about your dad, and I am so very sorry that he has been diagnosed, and to hear of the struggles he and your family are having.  I understand completely, as my mother in law (who was 61 when she was diagnosed and passed away from cholangiocarcinoma) experienced a steady decline in cognition as well.  It was something that she noticed, but she just didn’t understand what was happening and it was very hard.  I feel that her very first symptoms of this cancer were periods of forgetfulness, depression, “fogginess”, etc.  a full year or more prior to diagnosis. These symptoms did progress, even wax and wane at times after her treatment started and she became more ill.
Your dad may also be experiencing depression.   Men may exhibit depressive symptoms differently than women.....such as the "grumpiness" you mentioned.

Some of the symptoms you are describing in your dad may be due to the chemotherapy as well, which can cause something that those who get chemo, or give chemo call “chemo-brain”.  It’s forgetfulness, fatigue, a lack of mental sharpness, that sort of thing.  It should pass after he has a bit of a chemo break.
You said your dad also had tumors in his lungs, and outside of his liver near his stomach.  I know professionally as an oncology nurse, I have seen paraneoplastic type symptoms occur in those who have cancer involvement in the lungs, liver, and peritoneal cavity (in the abdomen). 

Now to try to explain what your dad’s oncologist is talking about with having to stop the Gem/Cis due to toxicity…..chemotherapy drugs do often adversely affect the recipient's body.  Gemzar can cause shortness of breath (dyspnea), or a chronic cough that worsens.  It can also affect the liver and kidneys, although you said his liver/kidney function was ok.
As for Cisplatin, this chemotherapy drug is from the platinum family of chemo drugs.  It most definitely affects the kidneys, so I am glad to hear that your dad’s kidney function is ok.   It can also be neurotoxic causing symptoms (which may be permanent) such as numbness and tingling of the hands/feet, decreased balance, loss of strength, muscle cramps, pain,etc.  These symptoms will be seen in many people receiving Cisplatin, but especially when the person has received what we call a cumulative dose beyond 400 mg/m2.  (dosing of chemotherapy drugs are done based on weight, and body surface area, and other factors).  Your dad may be very close, or over that dose limit leading to the oncologist stopping treatment at this time because more of the cisplatin would hurt your dad.

The nurses and the oncologist may have noticed symptoms too that indicate your dad is experiencing toxicity from these drugs, and deemed it necessary to stop at this time as more of this chemo would cause more damage which would seriously impact quality of life for your dad.  He may also have blood counts that are not improving quickly after treatments, such as white blood cell (WBC) counts, platelets, hemoglobin or hematocrit.  If a person receiving chemo has low WBCs, they are very prone to developing dangerous infections.  If they have low platelets (especially from the cisplatin) they may bleed and not be able to clot like normal.  Low hemoglobin and hematocrit may cause him to be short of breath, fatigued, pale, and so on.

I cannot say for sure the toxicity that your oncologist is speaking of, but I’m guessing it’s the cumulative dose of the Cisplatin.  The best thing to do, of course, is to ask him/her, or the infusion nurses.  They are there to help, and as Lainy mentioned, maybe you (or another family member) should offer to go along to the next visit.  Write questions down prior to the visit so that you are organized and prepared.  Demand time with the doctor, your dad’s time is valuable too!

It’s great though to hear that your dad has an appointment for a second opinion/clinical trial.  I wish him well and hope he is able to be enrolled!

Please keep us posted!

-Karen D.

9

(3 replies, posted in General Discussion)

Here are two additional photos for you.

The first one is of an un-accessed port site, and the second is of the accessed port site.  (It has the needle in it for use). 

http://1.bp.blogspot.com/-VdSMu6b-pQk/T3PLrT9whSI/AAAAAAAAAb8/cpT3gVgMKTs/s1600/y1p-_l-sXaFOoz61MqrtUGBHLU0B81Qy3y5rlawxNcE1hkyQJARS--bxhBjNC9A7MDPG8AWUSP5fKw%255B1%255D.jpg

http://2.bp.blogspot.com/-X47hz1MEEPM/U8AK0VBuzuI/AAAAAAAAHK0/ubLjN08YZt0/s1600/IMG_0522.JPG

Karen D

10

(3 replies, posted in General Discussion)

Hi 6gonzalez6,

There are many individuals on this discussion board with personal experience related to port-a-caths that may be able to give you more detailed info.

From my experience as an oncology nurse, here are some brief answers to your questions:

1. What has worked for you to sooth the area before treatment?

Nurses can apply a cream to the site of the port-a-cath (which is implanted under the skin) prior to accessing the port with a needle.  (Accessing is when a huber needle is inserted into the hard part of the port under the skin).  This cream is called Emla cream.

2. Any possible issues or things to look for?

The main issues to watch for are signs of symptoms of infection at the site of the implanted port.  A new port will have two incision areas that are generally closed with some internal sutures and dermabond, or a type of skin super glue.  Signs of infection at the site would be: redness, swelling, pain, or drainage from the incision that is profuse, yellow/white/green.   Also after treatment of blood draws when the needle is inserted into the port, any swelling around the needle is cause for concern.  A lack of blood return (the ability of the nurse to draw blood back into a syringe from the port) or difficulty flushing saline or fluid into the port when it is accessed should be investigated.

3. Any special care?

When the port-a-cath has a needle in it, it will be covered with a sticky clear dressing that should be kept dry.  After the site has healed, there will be two small scars on the chest and slightly above the port insertion site and no special care will be needed.

4. Does it ever need to be changed?

The port a cath will not have a needle in it unless it is being used.  That needle is changed (along with the dressing) every 7 days.  The caps on the tubing are to be changed every time blood is drawn from the port.  Your wife will perhaps remain accessed if she is getting chemo in an outpatient infusion department, and she is coming for a number of days.  Sometimes the nurses will leave the needle in, and remove it a few days later after consecutive days of chemo.  They may also remove it after the infusion, then re-access the next day. 


I hope this helps!!! 

Here is a helpful link for you as well along with a picture of what the new port a cath sites looks like right after the procedure to place it.

https://thisthinginsideme.files.wordpress.com/2011/08/100_4796.jpg

http://www.smiths-medical.com/Upload/pr … nfo809.pdf

-KarenD

Conquer- the patient voice, is a magazine for people with cancer, their caregivers, family, and others. 

I've included the link for the June 2015 issue as I found it to be such a good resource.

In the current issue, there are some great articles with information on chemotherapy induced peripheral neuropathy, fear of recurrence, managing treatment cost, etc.

http://issuu.com/theoncologynurse/docs/ … ital_issue

-Karen

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.

http://www.ascopost.com/issues/may-25,- … -pain.aspx


Here is the link to the posting I placed on this board last year, re: pain control

http://www.cholangiocarcinoma.org/punbb … p?id=12652

Karen

aa_nj,

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

http://www.cancer.net/navigating-cancer … medication

14

(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!

Karen

15

(10 replies, posted in In Remembrance)

I'm very sorry Kris.

-Karen

Marion,

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. 

-Karen

https://www.virginiamason.org/EndoscopesandERCP


http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6251a4.htm

17

(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. 

https://pancreaticcanceraction.org/panc … olfirinox/

http://www.chemocare.com/default.aspx

Folfirinox consists of:

Oxaliplatin-  Remember, nothing cold in the mouth! Keep extremities warm as well, gloves, hats, etc.
Leucovorin
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. 


Karen

Kris,
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.

http://www.nature.com/ncomms/2014/14070 … 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?

-Karen

Thanks, Gavin! 

-Karen

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. 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3088844/

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.

-Karen




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.

22

(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".

Duke,

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.

24

(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. http://www.carefusion.com/medical-produ … /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.

Everyone,
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,

Karen