Here is an excellent and easy to understand, patient handout from the European Society for Medical Oncology (ESMO) on skin reactions and issues related to EGFR inhibitors.  (Tarceva, Vectibix, Iressa, Erbitux, and Tyverb). 

This handout outlines what these reactions may look like, and what to do and not do to care for your skin. 

http://oncologypro.esmo.org/content/dow … i-EGFR.pdf

Pictures of what these skin reactions may look like:

http://oncologypro.esmo.org/Guidelines- … in-Changes

Karen D., BSN, RN, CHPN

2

(17 replies, posted in General Discussion)

Daisy,

You are so welcome, and I only wish that I could make things better for you both.

My mother in law experienced jaundice, confusion, ascites, and the "weeping" edema just as your mom has now.  I do know how it feels to want to do something, anything to help. 

You are doing just what your mother needs right now; you are a kind and loving daughter who is attentive to the comfort of your mom.  Everything that you do, even sitting with her and chatting, combing her hair, giving her sips of water, or putting lip balm on to keep her lips from being to dry, is important...loving....and make a real difference in how she is feeling. 

-Karen

3

(17 replies, posted in General Discussion)

Steven,

I will say that in my practice of close to 20 years, I recall giving albumin infusions two times for acites related issues/cancer affecting the liver.  One of these times was at an academic medical facility, and once at a community cancer center.  I do remember that the individuals whom I gave the infusions were stable, though very ill. 

There is quite a balancing act that occurs to keep an individual safe, and all treatments must be carefully considered and the risks vs. benefits. 

Albumin is a blood product and is infused and treated similarly to a blood transfusion, though it has a lower risk of reaction.  It is generally given as a volume expander and must be used with caution. 

http://www.fda.gov/downloads/Biolog...i … 056844.pdf

Your post had me searching through medical literature to see what the experts have to say about albumin infusion for the treatment of ascites/edema, and here is what I found:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3290049/

"Management of patients with ascities in GI malignancies is controversial".

"A logical approach is to individualize treatment. The rationale in the management of malignant ascites involves consideration of survival and QoL issues. Palliative techniques play an important role in the reduction of symptoms, which bear a direct correlation to patient satisfaction and therapeutic choices".

QoL=  Quality of life

"The most commonly used means of managing malignant ascites was paracentesis, which was also felt to be the most effective by the group surveyed. After paracentesis, diuretics and peritoneovenous shunting were used most frequently, but there was no apparent consensus as to their effectiveness.14 A survey by Lee and colleagues showed that paracentesis and diuretics were the most commonly used procedures in management of malignant ascites followed by peritoneovenous shunts, diet measures and other modalities like systemic or intraperitoneal chemotherapy".

"There is no evidence of concurrent albumin infusions in patients with malignant ascites". 

It is difficult to find literature on the use of albumin for malignant ascites.  Most of what I have found discusses the treatment of ascites in patients with cirrhosis. 

The indications for albumin infusion for someone such as your mother may be if she has at least 5 liters of fluid removed via her abdominal catheter (White, 2014). This appears to be a common reason for the use of albumin, and similar to your mother's situation.  This same article by White does state albumin has been used to "mobilize ascites" although the studies cited discussed individuals with cirrhosis of the liver. 
Outpatient Interventions for Hepatology Patients With Fluid Retention: A Review and Synthesis of the Literature
White, Asha DNP, RN, ACNS-BC

There are other studies that I have read that state that the use of albumin is well established in certain instances (large volume paracentesis, volume expansion, kidney disease, etc.), but controversial in others (high blood pressure (hypertension), fluid in the lungs (pulmonary edema), anemia, etc). 

So, I know that I have thrown a lot of information at you, but it is good to see what the evidence out there says about treatment for ascites.  I can say without hesitation that in my experience, treatment of ascites/edema is based on the quality of life of the affected individual.  I have seen people have a weekly paracentesis performed, or a valved catheter with which to periodically drain the fluid.  I've also seen medications like Lasix given to reduce the fluid retention, as well as restricting sodium and fluid intake.  Other times no measures are taken as the individual is comfortable and treatment will do more harm than good. 

I feel that if I were in your situation, there would be no harm in asking your mother's oncologist how they feel about albumin infusion for the treatment of her ascites/edema.  Perhaps you will find that they may be open to trying it, especially since she is being treated at Rutgers.  Although one study I read did not recommend it for use in malignant ascites, this study is from 2009 and new evidence may be available that contradicts the findings of this study. 

Most importantly and the reason for putting so much information into this post, is that being informed and able to discuss treatment with the oncologists/nurses will help you as you advocate for your mother.  You never know, perhaps you will spark an idea in the oncologist and help them to consider treatments that they might not have otherwise! 

All the best to you and your mother, Steven!

Karen D., BSN, RN, CHPN

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

4

(17 replies, posted in General Discussion)

Daisy,

I'm sorry for the late reply!  It sounds like the physicians have already gone ahead with the lasix, which is an excellent diuretic used to reduce symptoms such as edema in the legs. 

You asked if the edema of the legs is normal, as well as the leaking of fluid.  Edema or swelling can occur along with the ascites (fluid/swelling of the abdomen) which your mom is experiencing.

It is somewhat complicated to explain, as there are several things that can cause what is called dependent edema of the lower extremities...one being a liver that is having difficulty functioning.  Your mom's albumin level is quite possibly low because of the cancer and decreased appetite/nutrition which is no fault of her own and is common. (Albumin is a protein manufactured in the liver).  With a low albumin level, fluid in the body that is normally within the vessels will leak out causing ascites and eventually the edema of the legs that you see.  When the tissues in your mom's legs are unable to retain this excess fluid that is not within the vessels, it will leak out.  Sometimes fluid filled blisters will form as well. 

I personally have never used sanitary pads to absorb the fluids, but I think that it was probably a good and safe way in which to manage the leaking.  The nurses probably do not want to stick anything to the fragile skin, and want air flow as well.  They also need to watch your mom's legs to assess them for signs or symptoms of infection or other such issues. 

In my practice I have sometimes used large absorbent abdominal wound pads over the leaking areas, which I gently wrap with kling wrap which is a very loose gauzy roll of dressing material.  Elevation of her legs is another thing I would do very often as this may help to decrease the swelling. 

Here is some information that is for nurses, but may be helpful for you to read a little bit about edema and fluid leakage from the legs/extremities; some of the issues nurses are watching for, etc.   
http://www.nursingtimes.net/clinical-ar … ullarticle

The only thing that I would add is that I would not think that compression hose would be used for your mom to decrease swelling.  I also think that most likely elevation of the legs and medications will perhaps be the avenue chosen by your mom's physicians as they are not overly uncomfortable, but are still treatments that are safe for her, and they work. 

From what I have gathered, it sounds like everyone is working hard to keep your mom's quality of life high at this time- to not cause any undo discomfort for her. 

I hope all of this information helps!  I'm sorry that this is such a lengthy post!!!  Of course please do remember that I'm not a physician, and the information I have provided is just what I know from my own nursing practice and is my personal opinion and not medical advice.

I advise you to ask as many questions as you need to from your mom's physicians/nurses to get the answers that you need. 

And lastly, what a wonderful daughter you are to search for everything that you can to help your mom, and I will be thinking of you both!

-Karen D., BSN, RN., CHPN

https://thedianerehmshow.org/audio/#/sh … 380/@00:00

A poignant interview with Amy Berman, a 51 year old woman diagnosed with terminal cancer.

Karen D.

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

18

(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)

24

(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

25

(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