A study out of the University of Southern California where researchers link a high protein diet in middle age to an increased risk for cancer development.  Interesting!

https://news.usc.edu/59199/meat-and-che … s-smoking/

Karen, BSN, RN, CHPN

Great picture! 

-Karen

A nice article discussing integrative oncology and exercising caution when taking over the counter herbs and supplements. 

https://conquer-magazine.com/integrativ … role-care/

-Karen, RN

Lainy,

I'm sorry to get back to respond to you so late! I'm glad that you liked the article!  When I read through it, it made a lot of sense to me and I wanted to share.

Good luck with your surgery, and what a great way to think about it!  You ARE getting rid of things you don't need.  I love that!

-Karen

As research is continuing to show, physical activity will help during your treatment.  Light activity such as a short walk or stretching can help you to feel less fatigued, and decrease your anxiety level.

Here is a video provided by the Oncology Nursing Society that promotes activity.  As fatigue is such a common side effect of cancer and cancer treatment, it is good to know that there is another way in which to combat this side effect that doesn't include medication.

https://www.youtube.com/watch?v=MbH_-Ei … redirect=1

In the past, as is stated in this video, it was suggested that cancer patients rest as much as possible.  It is still recommended of course to conserve energy and perform activity during the times of least fatigue, but a change is occurring in oncology care.  Less rest, more movement!

Karen, RN, CHPN

A powerful article that recognizes the ways in which the " language" of cancer can be very negative. 

"The Language of CANCER: Do Our Word Choices Give Cancer More Power Than It Deserves?

“Diagnosed with cancer.” “Cancer victim.” “Cancer patient.” “Battling cancer.” “Cancer survivor.” Words are powerful. How do these words make you feel?
These common phrases are the lingua franca of cancer, ingrained in our discourse. The way we talk about a disease we’re facing can affect how we feel about it, and those feelings can impact our quality of life. Now, some people—including patients and healthcare professionals—are calling for a change."

https://conquer-magazine.com/the-langua … -deserves/

The author of this article notes that individuals with cancer should "name your own terms" or "choose your own words" which can change the way you feel about illness. 

-Karen D., RN, CHPN

You're welcome Gavin!  Hope all is well across the pond! :-)

-Karen

You're welcome Melinda! :-)

Index of drugs with clickable links for individuals/patients who needs financial prescription assistance.  For the insured, uninsured, and everyone in-between. The links provide information on where assistance may be obtained.  Many of these drugs will be familiar to those of you who have received or are receiving treatment for CC.   The list that I have provided is only a few of the drugs included.  View the link to see the full list.

http://oncpracticemanagement.com/pssgui … x-by-drug/


Neupogen

Opdivo

Emend (Aprepitant)

Gemzar

Keytruda

Neulasta

Taxotere

Velcade

Tarceva

and MANY more

Karen, RN, CHPN

Index of drugs with clickable links for individuals/patients who needs financial prescription assistance.  For the insured, uninsured, and everyone in-between. The links provide information on where assistance may be obtained.  Many of these drugs will be familiar to those of you who have received or are receiving treatment for CC.   The list that I have provided is only a few of the drugs included.  View the link to see the full list.

http://oncpracticemanagement.com/pssgui … x-by-drug/


Neupogen

Opdivo

Emend (Aprepitant)

Gemzar

Keytruda

Neulasta

Taxotere

Velcade

Tarceva

and MANY more

Karen, RN, CHPN

Hello everyone on the discussion board!

I wanted to put this link out here for those who may be interested. 

https://www.canceradvocacy.org/cancer-a … vor-story/

Share your story with the National Coalition for Cancer Survivorship!

This link allows you to input information on your own personal story of survivorship.  I know that  many of you may not think of yourselves as "survivors", but you are because you are working to find the treatments that will keep cancer at bay.

More and more stories of individuals living with cholangiocarcinoma beyond the initial time frame given by your physicians is becoming a reality, and will continue to become a reality.  This is not only the case with cholangiocarcinoma, but with many other cancers as well.

Many cancers are being treated as a chronic illness and not a terminal illness, and the voices of those living with a chronically managed disease should be heard, because it is YOU and your families that help to change the way in which cancer patients are treated.

-Karen

You're welcome, Scott!

Good luck with the port placement, and happy St. Paddy's day to you too!

-Karen

13

(4 replies, posted in Members' Cafe)

HI Scott!  Here is our Facebook page.  Come and check it out!

https://www.facebook.com/cholangiocarcinoma/?fref=ts


-Karen

The distressing symptom "cluster" of fatigue, depression, and loss of appetite (anorexia) was found to improve with the use of decadron (dexamethasone) for individuals who have advanced cancer.

http://theoncologist.alphamedpress.org/ … 4.abstract

http://theoncologist.alphamedpress.org/ … l.pdf+html



-Karen

Hi Scott!

Oh I am so sorry to hear that your PICC is giving you trouble.  I know that they can be kind of a hassle if you are a very active person.  I understand your frustration....don't lift anything on this arm, don't get it wet, be careful that you don't bump it with anything, etc. etc.  Then on top of it, you have to have the dressings changed every 7 days and get it flushed.  I would probably be a down in the dumps about it too. 
PICCs do serve a very important role in intravenous therapy, but if you are going to be having very long term therapy, a port a cath is a better option in my opinion.

Although I have not personally experienced having a port, the port care that I have given it fairly straight forward.  Ports will be placed under your skin and you will have tubing going into a major vessel to your heart.  All of this will be internal other than the doorbell type apparatus that is able to be felt under the skin of your upper chest.

Here is a link to a post I did awhile ago on ports.

http://www.cholangiocarcinoma.org/punbb … p?id=13800

After your outpatient procedure to have the port placed, you will have to keep the new surgical site dry for a bit to allow the skin to heal.  After healing has occurred, there will be nothing outside of your skin.  You will only have two minimal surgical scars.  You will be able to swim, shower, bike,  and do your normal activities, but I would probably be careful with carrying the wood against your chest on that side.  I know that when I stack wood I hold the logs up to my chest and it can get fairly heavy!  So my suggestion would be to make more log carrying/stacking trips. :-)

I should mention though that you will still have to periodically have the port "accessed" and "flushed" just as with the PICC.  This needs to occur at least once a month if the port is not actively being used.

If you have any more questions, feel free to ask and I will answer them as best that I can!

-Karen, RN, CHPN

Hi Scott! 

Oh I am so sorry to hear that your PICC is giving you trouble.  I know that they can be kind of a hassle if you are a very active person.  I understand your frustration....don't lift anything on this arm, don't get it wet, be careful that you don't bump it with anything, etc. etc.  Then on top of it, you have to have the dressings changed every 7 days and get it flushed.  I would probably be a down in the dumps about it too. 
PICCs do serve a very important role in intravenous therapy, but if you are going to be having very long term therapy, a port a cath is a better option in my opinion. 

Although I have not personally experienced having a port, the port care that I have given it fairly straight forward.  Ports will be placed under your skin and you will have tubing going into a major vessel to your heart.  All of this will be internal other than the doorbell type apparatus that is able to be felt under the skin of your upper chest. 

Here is a link to a post I did awhile ago on ports.

http://www.cholangiocarcinoma.org/punbb … p?id=13800

After your outpatient procedure to have the port placed, you will have to keep the new surgical site dry for a bit to allow the skin to heal.  After healing has occurred, there will be nothing outside of your skin.  You will only have two minimal surgical scars.  You will be able to swim, shower, bike,  and do your normal activities, but I would probably be careful with carrying the wood against your chest on that side.  I know that when I stack wood I hold the logs up to my chest and it can get fairly heavy!  So my suggestion would be to make more log carrying/stacking trips. :-)

I should mention though that you will still have to periodically have the port "accessed" and "flushed" just as with the PICC.  This needs to occur at least once a month if the port is not actively being used. 

If you have any more questions, feel free to ask and I will answer them as best that I can!

-Karen, RN, CHPN

You're welcome, Gavin!

-Karen

Hello all,

I ran across this today, and I feel that it is important information to know in case anyone has used research information from certain studies to make treatment decisions.

http://www.houstonchronicle.com/news/ho … 865704.php

Karen

(All information presented is my opinion only and is not a substitute for medical advice.  Always, please seek assistance from your physician if you have questions or concerns)

19

(3 replies, posted in New Developments)

Hello Sherry!

Marion asked if I would comment on this thread re: Peripheral neuropathy from chemotherapy, or the numbness/tingling, pain, loss of sensation that occurs with nerve damage from chemotherapy, diabetes, etc. 

Here is some info for you:

CIPN (chemotherapy induced peripheral neuropathy)  is a common occurrence with different types of chemotherapy medications such as the platinum agents (Oxaliplatin, Carboplatin, Cisplatin, etc.)  taxanes (Abraxane/Paclitaxel, etc.).  and others. 

Dose reduction of the chemo agent can and may be ordered to reduce the severity of neuropathy, or the agent may be stopped all-together. 

From what I know, neuropathy may improve over time but can definitely persist (for Abraxane improvement MAY be seen beginning around 3 months post treatment per the National Comprehensive Cancer Network [NCCN] but is also treated with medications such as neurontin/gabapentin, tricyclic antidepressants (amitriptyline and others), pain medications,or  lidocaine patches (although I do not really see this).   

CIPN is a side effect that seriously impacts quality of life and unfortunately, does not have many good treatment options and persists for many individuals.

I have read about clinical trials using Glutamine
https://clinicaltrials.gov/ct2/show/NCT02215083 and there are also some actual publications on this treatment. 

Here is something from Dana-Farber as well:
http://www.dana-farber.org/Health-Libra … ptoms.aspx

The Oncology Nursing Society has some great information here: https://www.ons.org/practice-resources/ … neuropathy
This link gives you information on scientifically proven methods of managing CIPN, treatments that MAY be helpful, treatments that are highly unlikely to be helpful, and treatments that should not be used.

For the rash, cream with benadryl may help, or emollient lotions like bag-balm, or another unscented lotion. 

I would love to hear more about your husband's acupuncture treatments! I think it is wonderful to try other methods of healing. 

-Karen RN, CHPN

20

(13 replies, posted in General Discussion)

Hi Donna,

Not to negate the advice that Lainy has given you, but here is another thought to help out:

As you are on Xeloda and Gemzar.....are your physicians routinely checking your lab tests?  You could very well be anemic. 

Anemia will also give you shortness of breath, fatigue, weakness, increased pulse rate, etc. etc. You stated that you have had some sensitivity to these medications, so you may just have a low hemoglobin and hematocrit, aka, anemia. 

Keep us posted!
KarenD, RN, CHPN

http://www.cityofhope.org/blog/cancer-pain-tips

BREAKTHROUGHS
7 TIPS FOR MANAGING CANCER PAIN: FIRST, CONTROL IT EARLY
September 4, 2014 | by Nicole White RSS

"There’s more to cancer care than simply helping patients survive. There's more to cancer treatment than simple survival.

Cancer patients should report their pain to their caregivers, and enlist their doctors to help them manage it. Pain does not have to be part of daily life, even during cancer treatment, says City of Hope's Betty Ferrell and other experts in palliative care.
Constant pain should not be part of conquering cancer,  insists Betty Ferrell, Ph.D., R.N., director of nursing research and education at City of Hope. She wants patients and caregivers alike to understand, and act on, this principle.

Ferrell, an international expert in palliative care, and her colleagues have spent years investigating pain management and the barriers that prevent patients from receiving the help and medication needed to manage their pain. Overcoming these barriers starts with understanding that pain management is vital. Even when people are fighting cancer, their day-to-day lives should not hampered by physical pain.

“Patients and caregivers need to understand that pain is important,” she said. “Pain has a tremendous impact on quality of life. There is an urgency. If pain is not controlled, their lives are out of control.”

Patients and their caregivers must know how to assess and talk about pain, Ferrell said. She and other experts in palliative care are committed to helping patients and caregivers address fears and misconceptions about pain medication and management.

“We can have the most effective drugs in the world, but if people aren’t taking them, they’re not going to help,” Ferrell said.

Of the seven tips on managing cancer pain, two are crucial.

1. Control pain before it becomes severe.

2. As a cancer patient, you deserve the best pain relief.



Other tips for cancer patients experiencing pain:

3. Quantify your pain. Rate pain on a 0 to 10 scale, with zero being no pain and 10 being the worst pain. Track when the pain started, what makes it better or worse, where it's located and how long it lasts. Be able to describe the kind of pain sharp: shooting, dull or burning. The description will help caregivers treat it effectively.

4. Call your nurse or doctor about pain. Do not hesitate to reach out to your caregiver if your pain is new, if it is getting worse or if it is keeping you from your everyday activities.

5. Remember that you have many treatment options. Doctors have many pain-controlling medicines at their disposal, and they can be given in many ways. If one doesn’t work well, patients and doctors can try another kind.

6. Do not let fear of addiction prevent you from taking medication to manage pain. Ferrell says a common fear patients and their caregivers have is that they will become addicted to their pain medication. She stresses that patients need to understand the difference between normal physical reactions to medication and drug addiction.

For example, tolerance to a drug – requiring an increase in dosage when the body adjusts to the current medication – is normal and is not addiction. Physical dependence is also not addiction. Anyone taking opioids (morphine-like medicines that are commonly used for pain) is likely to become physically dependent for a period time. If you stop the opioid abruptly, you will experience withdrawal symptoms, such as shaking, agitation, fear and chills. This is why it’s important not to stop the medication abruptly and to taper off the dosage.

Normal, physical reactions to necessary pain medication are different from a psychological addiction, Ferrell says. Addicts crave drugs to satisfy physical, emotional and psychological needs – not for pain relief.

7. Follow directions when taking pain medication. Communicate with your doctors, nurses and caregivers when you have questions about how to take your medication, encounter problems getting your medicine, feel the medicine doesn’t work, experience side effects, or have concerns or questions about using pain medication.

**

Caregivers should also note that sometimes their loved one will be reluctant to report their pain.

“People will often say ‘I have cancer, so of course I have pain,’” Ferrell said. “We have to constantly emphasize that there is much that can be done.”

The hopeful message of Ferrell’s research: Pain can be managed, and these barriers can be overcome. Misconceptions can be dispelled through teaching and support.

“So often, the public, patients, even medical professionals only think about pain in advanced disease,” Ferrell said. “People are doing so well surviving cancer, and many survivors have ongoing pain problems.”

Palliative care – care that focuses on quality-of-life issues – isn’t only for people with advanced disease. All patients and survivors – and their caregivers – should have care plans and survivorship plans that emphasize quality of life, and that includes a daily life without physical pain.

Cancer patients and survivors do not have to settle, and should not hesitate to enlist their doctors, nurses, a palliative care specialist and pain specialists to get them the treatment they need to stop pain."

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