I LOVED reading your posts today Michelle! 

Sending you a big hug from New York

-Karen

2

(7 replies, posted in General Discussion)

No words....my heart is breaking..


-Karen

3

(4 replies, posted in Pain Management)

Fay,

The pain specialists may be thinking of switching to Methadone and steroids as they are aware that your mom isn't taking her breakthrough meds, or they feel she is developing tolerance to the current regimen. However, this sounds like more of a patient education situation, than inadequate pain control.  If her pain is tolerable with her current long-acting  and short acting oxy, then I would think they might keep her on her current regimen. 

Do you think there may be other reasons beyond fear of "addiction" that you mother may have?  Is she struggling with nausea, constipation, forgetfulness, or other symptoms?  Could she perhaps be avoiding the short acting med as she is afraid or scared, not of addiction, but of something else? Could you or another trusted family member have a heart to heart with her, asking her what is most important to her right now?  I remember you saying how she was able to go out to lunch with her friends recently.  Is this something that brings her joy?  If she is in a lot of pain, it may be difficult for her to do these activities, and perhaps then she will mull it over and decide to try the short acting meds again. 

http://www.cancercare.org/publications/ … tting_help

As you know, she will not develop addiction, tolerance yes.  From my experience, pain medication may need to be increased as needed as patients develop tolerance to a drug.  For individuals with cancer pain, this is acceptable and common.  Pain medication will need to be increased or rotated as cancer progresses. 

The reason for my asking about the Fentanyl patch, is because this is a method of pain control I see prescribed frequently.  Pain must be controlled though prior to switching, but this may be useful in the future if she has difficulty eating/drinking or has nausea.  What does the oncologist think?  Do the pain providers have a lot of experience with progressive cancer pain, or do they specialize more in chronic pain syndromes?

Providers generally start transdermal Fentanyl at a low dose of 12.5 mcg, then 25, 75, 100, 150 mcg, but it depends as well on the previous dose of oral long acting drug that was given. 

I am sorry to hear her pain has increased.   I was so happy to hear she was feeling better for awhile, and do so hope she finds relief again soon!

-Karen

THIS INFORMATION IS NOT INTENDED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE.  PLEASE CONSULT YOUR PHYSICIAN OR HEALTH CARE PROVIDER IF YOU HAVE ANY QUESTIONS OR CONCERNS

FMLA is a federal law put in place to allow for covered patients and certain family members/caregivers to take job protected unpaid leave from work. 

The leave is generally 12 weeks, or 26 weeks for family of a service-member.

Knowing about this law is important for individuals/families who are dealing with a serious illness. 

Informational step by step guide to FMLA, how it works, how to request leave, and so forth.

https://www.dol.gov/whd/fmla/employeeguide.pdf

https://www.dol.gov/whd/fmla/

Information on workplace rights

http://www.patientadvocate.org/resources.php?p=128

5

(4 replies, posted in Pain Management)

Hello Fay,

I have given Methadone quite often, but generally for chronic pain patients such as those with Sickle Cell Disease.  I do however recall giving it recently to a patient with cancer.

Here is the latest from the American Academy of Pain Medicine re: Methadone

http://www.painmed.org/files/methadone- … making.pdf

Here are the NCCN guidelines for pain management in adult cancer patients.  https://www.nccn.org/professionals/phys … supportive 

If you are unable to view these guidelines, I can email you the Pdf which I downloaded.

From my knowledge, Methadone can be useful in neuropathic pain.  As I recall, this was perhaps the kind of pain your mom has been experiencing?  Deep somatic pain/visceral pain? Is her long acting oxy and break-through oxy not keeping her pain below a 5/10?  Have they discussed transdermal pain medication such as fentanyl, AND break-through oxy?

-Karen

THIS INFORMATION IS NOT TO BE TAKEN AS MEDICAL ADVICE AND IS PURELY MY OPINION. PLEASE CONSULT YOUR PHYSICIAN OR PROVIDER IF YOU HAVE ANY QUESTIONS OR CONCERNS

Mucositis management for patients undergoing chemotherapy

Easy to understand guide to oral mucositis management from the American Cancer Society:

https://www.cancer.org/content/dam/canc … nglish.pdf

http://www.mascc.org/assets/Guidelines- … un2014.pdf

Guidelines in Spanish

http://www.mascc.org/assets/Guidelines- … panish.pdf

Link to guidelines in other languages (French, Portuguese, Turkish, Italian, etc.).
http://www.mascc.org/mucositis-guidelines

http://www.mascc.org/assets/StudyGroups … herapy.pdf

Mucositis can develop anywhere within the oral cavity (mouth), and throughout the gastrointestinal tract (esophagus, intestines) of patients undergoing chemotherapy and site specific radiation.  Oral mucositis can start as soreness, burning, and stinging, progressing to ulceration, pain, and the inability to eat or drink. 

Mucositis can manifest as diarrhea, rectal bleeding, as well as ulcers. 





Be vigilant about your oral health when receiving chemotherapy, and alert your oncologist or oncology nurse if you experience any change in your mouth/lips, bowel movements, eating, etc.

-Karen

More biliary drain, PTC tube, biliary stent instructions from various facilities.

University of Mississippi

https://www.ummchealth.com/uploadedFile … ctions.pdf

University of Michigan

http://www.med.umich.edu/1libr/aha/umliver11.htm

NHS Birmingham

https://www.uhb.nhs.uk/Downloads/pdf/PiPtcBiliary.pdf

Georgetown

https://www.medstargeorgetown.org/our-s … rain/#q={}

Positivity,

There is a lot of literature out there on the effects of chronic low level inflammation.  Take for example hepatitis B and C.  These are viruses that cause inflammatory changes to the liver.  "itis" meaning "inflammation".  Individuals with chronic hepatitis are at an increased risk for the development of primary HCC (Hepatocellular carcinoma).  Most individuals receive routine CT scans of the liver to monitor for changes. 
If you do a search on chronic low level inflammation on PubMed, Medscape, NIH, or NCI, you should be able to find reliable research on this topic.  For example, here is a new publication I found, although I was unable to obtain full access.  This link is for the abstract.   

https://link.springer.com/article/10.10 … 016-1158-4

Although I have not run across research that directly states "CCA is caused by inflammation", perhaps it plays a role in the development of this cancer.  The current research points to a "multifactorial process"....there is no one specific cause for the development of CCA. 

Here is a link to a very good publication from 2014 written by physicians who are well known to the cholangiocarcinoma community, Dr. Bridgewater, Dr. Pawlik, Dr. Gores, etc. Although the article focuses on intrahepatic CCA, they do discuss all CCA.  If you read the article, look specifically at the section "Risk factors for iCCA". 

http://www.journal-of-hepatology.eu/art … 1/abstract

I hope this helps,
Karen

THIS INFORMATION IS NOT MEANT TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE.  PLEASE CONSULT YOUR PHYSICIAN IF YOU HAVE ANY QUESTIONS OR CONCERNS.

Tia,

You are doing everything humanly possible to get the absolute best care for your mom, including researching information on nutrition and alternative treatments that could help.  Family is a part of the care team, and in my opinion, the patient and family are the most important members of this team.  You are doing an extraordinary job from what I have seen here on the board, and the love you have for your mom and others is apparent to everyone through your posts!  I very much enjoy reading the information you find. :-)


If it seems like I post on palliative care a lot, it is probably because I specialize in this type of nursing, but also because symptoms can be so distressing even at the time of diagnosis. 
This is not only with cancer, but for any serious illness.  Helping people to feel better on a day to day basis during their treatment (or after) is very important to me.

In my experience, quality of life is improved when the whole person is cared for...mind, body, and spirit.  Palliative care practitioners are experts in managing pain control, nausea and vomiting, nutritional issues, depression, anxiety, impaired coping, and so forth.  When people hear "palliative care" they think hospice.  Hospice is a form of palliative care, but palliative care can be given to those who do not have a terminal diagnosis.  Palliative care can be given to people with diabetes, heart disease, dementia, chronic pain, etc. Think of it as a doctor who manages symptoms.

 

Additionally as Gavin so wisely said, there isn't a carers manual out there.  It is a learning process, and things change day to day.  Cholangiocarcinoma is not an easy cancer to figure out, the learning curve is huge. 
   I remember very well what it was like when my mother in law was diagnosed with intrahepatic cholangio.   There I was, an oncology nurse and I felt like I didn't know anything!  The emotions were overwhelming.

We are all here for each other though, Tia, and please do not hesitate to reach out to us. 

Hugs,
-Karen

Palliative care should be implemented at the beginning of any serious or life-limiting diagnosis.  It restores control of decisions to the individual. 

Palliative care practitioners work with individuals to control symptoms related to the illness, or the treatment.  This includes pain, nausea/vomiting, appetite and taste changes, nutrition, etc.  With any diagnosis that is serious, a provider team should be established to care for the individual holistically.  This may include a medical oncologist, surgical oncologist, radiation oncologist, palliative care physician/nurse practitioner, social worker, nutritionist, clinical nurse navigator, and others. 

The following podcast is an excellent explanation of palliative care/symptom management, and is meant to help explain how individuals and caregivers can care for themselves throughout their journey. 

https://soundcloud.com/get-palliative-c … -diagnosis

-Karen, BSN, RN, CHPN

Thank you for this posting, Marion.

-Karen

Cancer is a cruel disease which tests the strength and emotional resilience of individuals, including caregivers and others.  There is a ripple effect, spreading outward from the person diagnosed.

Care must be given to all who are affected, as emotions can be overwhelming leading individuals to develop complicated grieving.  I see this as anger at others, anger at the system, anger at life, fear of loss, fear of the unknown, fear of authority, fear of a loss of control, and great sadness manifested as other emotions.

I am speaking about this from a place of understanding, not only as someone who has witnessed many, many family members struggle with cancer, some who are surviving and others who have not, but also someone who has physically been changed because of cancer.  I am also a nurse who has cared for individuals (and their families) with cancer for years.  It can be a messy ride, but it can also be a time of togetherness and great clarity if we allow it to be.

Listen and trust in those who are trying to help, but do also be educated about the disease, your own health (emotional and physical), and be proactive.  Advocate for yourself/ family member/friend, become an active team member in treatment or after treatment, do not fear science and those who work to care for you or others, collaborate and share ideas. 

I am sorry if this post bothers anyone, but this topic has been weighing heavily on my heart and I felt the need to thoughtfully share my feelings.

-Karen

I have seen recent postings about why certain chemotherapy agents are chosen or how chemotherapy works.  Here are a few links on basic cell division, including cancer cell division, and how chemotherapy works to interrupt this process.

Chemotherapy can be confusing and misunderstood, but is still used because it works for many, many cancers. 

https://www.biology.iupui.edu/biocourse … notes.html

http://www.biology.iupui.edu/biocourses … otes.html]

http://www.biology.iupui.edu/biocourses/N100/images/8mitosiscropped.jpg

How does Gemcitabine (Gemzar) work?

http://www.watsonclinic.com/uploads/Gemcitabine.pdf

How does Cisplatin work?
http://www.medscape.com/viewarticle/563882_2

https://www.youtube.com/watch?v=VRhz3DhjG5M

http://chemocare.com/chemotherapy/what- … -give.aspx

Xeloda (Capecitabine)

https://www.youtube.com/watch?v=fy24PE8dPK4

http://reference.medscape.com/drug/xelo … -342211#10

Keytruda, or Pembrolizumab is referred to as a "targeted therapy", specifically a monoclonal antibody (the MAB in Pembrolizumab).  This drug allows the T-cells of our immune system to recognize the foreign cancer cells so that they can be removed, but is not interrupting cellular division.   

http://www.mayoclinic.org/diseases-cond … T-20047808

https://www.youtube.com/watch?v=aobxYfY-8p0


http://chemocare.com/chemotherapy/what- … erapy.aspx

-Karen BSN,RN, CHPN

14

(4 replies, posted in General Discussion)

Fay,

I am so sorry to hear this and wish that I could give you a hug, as I understand.  I do not know how much help this may give you, but as you are in Seattle and your mother in B.C., have you thought to reach out to Bastyr?  They do conduct clinical research on integrative oncology, and perhaps  your mother could receive additional treatment along with her conventional treatment.

https://bastyr.edu/research/clinical-re … e-oncology

-Karen

Julie,

I have seen this same issue countless times, and I know how bad it can be.  I am so sorry!  Marion contacted me about this awhile ago....I finally found some information that I myself am planning to bring back to our inpatient/outpatient units at our next staff meeting.  We struggle with severe tape allergies quite often.

http://www.medscape.com/viewarticle/763161_3

This article suggests a soft foam dressing over the site.  I can envision what they are referring to, as we have similar dressings at my facility.  The port needle would not be visible however, so this is a problem.  Look through the article and see what you think.

-Karen

Hopeseeker,

The chemotherapy agent with cold sensitivity is most likely Oxaliplatin. 

I'm glad that she is following up with her Oncologist tomorrow, and perhaps she could even call today if the rash is severe. Oxaliplatin can cause hypersensitivity reactions in rare cases, sometimes severe with shortness of breath and facial swelling.  A rash can occur from Oxali. as well, and is also a hypersensitivity reaction which should be reported to the oncologist.  Antihistamines like Benadryl and steroids like Decadron can be given to manage this reaction along with emollient creams. 

I'm sure that the oncologist will order blood work tomorrow to see what her blood counts show, including her white blood cells, platelets, hemoglobin, etc.  There is a typical period around 7-10 days after chemotherapy where blood counts will drop which is called the "nadir".  Your MIL's ability to fight off infection will decrease, so if the rash is causing any cracking of the skin, or she is scratching a lot or causing breaks in the skin accidentally where infection could start, this should be reported to the oncologist. 

I hope this helps a little, and mention to her that she should discuss any strange symptoms such as this rash to her oncologist. 

All the best,
Karen

Here are some informational links for you:

http://chemocare.com/chemotherapy/drug- … latin.aspx

http://www.cancernetwork.com/review-art … nagement-0

http://theoncologist.alphamedpress.org/ … 5/546.full

Management of Hypersensitivity Reactions
Mild hypersensitivity reactions to oxaliplatin and other platinum compounds can be ameliorated in some patients through the use of steroids and antihistamines before administration of subsequent cycles [7]. However, premedication cannot prevent all hypersensitivity reactions, and mild reactions may escalate to severe reactions even when steroids and antihistamines are administered prior to oxaliplatin infusion. There are case reports in the literature describing patients who experienced hypersensitivity reactions during initial therapy with oxaliplatin and experienced similar and sometimes more severe symptoms during subsequent cycles despite receiving prophylactic steroids and antihistamines [7, 13]. In all cases of severe hypersensitivity to oxaliplatin, treatment had to be discontinued. In such cases, initiation of a desensitization protocol may allow the patient to continue treatment with oxaliplatin


This information is not intended to be a substitute for medical advice from a physician or medical  care provider.  Please consult your physician or medical provider if you have questions or concerns.

Lainy,

What a blessing you have been to everyone throughout the years, and I for one will miss you VERY MUCH!! 

I'm so glad that I was able to meet you and Mel in SLC this year, and hope that you will pop in periodically and say hello!

Much love,
Karen

Hopeseeker,

I'm so sorry to hear this.  What chemotherapy is your mother in law receiving?  Does she have a fever or any other symptoms?  As she just had chemo last week, when is her follow up appointment scheduled for this week?

-Karen

All,

The NCI link discussing nausea and vomiting is broken in the former posting.  Here is the correct link.

https://www.cancer.gov/about-cancer/tre … nausea-pdq

-Karen

20

(6 replies, posted in Introductions!)

Hello Lou!

I'm so sorry to hear that your wife is experiencing so much nausea.  As you posted this message on Tuesday, I'm hoping perhaps that she has seen her oncologist since then and discussed her recurrent nausea and found some relief. 

In looking over your message and thinking about a few things, the first question I had is concerning the medications that she takes for her nausea before chemotherapy, the day of chemotherapy, and for the days following her infusion. 
One of the medications she is receiving, Cisplatin, is referred to as a "highly emetogenic" agent, or in layman's terms, it causes severe nausea.  There are clear guidelines on the management of chemotherapy induced nausea and vomiting for medications such as Cisplatin, and it wouldn't hurt to ask if your wife is receiving the medications as recommended.   

If we were to look at days 1-4 of chemotherapy, she should be receiving medication like Emend (Aprepitant), Zofran, Dexamethasone, etc. The Emend is a pill and should be taken before chemotherapy and then orally on day 2 and 3 along with Decadron (Dexamethasone) i.v. or by mouth on days 2, 3, and 4. 

The guidelines are actually quite lengthy, so I only included the first top section of the National Comprehensive Cancer Network (NCCN) antiemesis guidelines from 2017.   

https://NCCN.org

For the professional guidelines an account is needed, but is free to set up. 

https://www.nccn.org/patients/resources … ausea.aspx
There may be other reasons for her persistent nausea as well including the effects of the tumor.  Here is a great resource for you to look through from the National Cancer Institute on nausea and vomiting in cancer.

https://www.cancer.gov/about-cancer/tre … nausea-pdq

This can be an issue that will require a lot of trial and error, changing of medications, working to find foods/beverages that are easily digested, etc.  I have also seen some good success with the use of peppermint oil on a cotton ball in a little dish, and having an individual gently inhale the aroma of this.  Yes I know it sounds silly, but I have seen it work for some individuals who were struggling with ongoing nausea due to liver, colon, and endometrial cancers...or cancers that are prone to causing nausea. 

It is low-tech, but worth a try but do always ask her oncologist or oncology nurse before trying anything new, and do not use this if your wife as an allergy to peppermint.

http://ecancer.org/journal/7/full/290-a … miting.php

Does the facility where your wife is being treated have palliative care physicians on staff?  If so, it might be a good idea to see if someone from their service could be a consult and work with the oncologist to treat her nausea.
Palliative care specialists are not hospice doctors, but practitioners who specialize in symptom management on a short term or long term basis.  This physician team (Oncologist/Palliative care physician) could work together to trial different medications, or work with a nutritionist, manage pain medications, constipation, etc.  They work wonders and are a great asset when struggling with persistent and distressing symptoms. 

Lou, I will be thinking of the both of you and keeping good thoughts and hope for relief of the nausea.  Please let us know how you are both doing.

-Karen

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

21

(8 replies, posted in Pain Management)

Fay,

Here is an article that discusses visceral pain management, which you may find helpful. 


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348642/

-Karen

22

(8 replies, posted in Pain Management)

Fay,

I wanted to add a little bit more information to the other great postings on this topic.

It appears that your mother's physician is prescribing per WHO analgesic ladder guidelines, however, she is only on long and short acting oral Dilaudid as the opioid.  Your mother is on the highest step- step three.  She is not taking an NSAID though, but Tylenol.  The ladder at step 3 is an NSAID, opioid, and an adjuvant (i.e. Neurontin). 

As her pain level is severe at times, I would have her see her prescribing physician ASAP for pain medication adjustment, or bring her to the hospital as Marion suggested.  With cancer pain, there should be frequent assessment and reassessment of the patient's pain experience and the adjustment of medications accordingly.  This may include increasing dosages, or changing opioids. 

Make sure she is on a bowel regimen too (stimulant laxative and stool softener) with the heavy doses of opioids she is on as constipation can happen quickly, which can bring nausea and obstruction.

 
I would ask the physician if she should perhaps be using a fentanyl patch, along with the long acting oral opioid and a short acting oral opioid for break through pain. 

Lidocaine-
In my practice, I have not seen much relief from the use of lidocaine patches for severe cancer pain, and they can bunch up/stick on clothing/come off easily.  This is not to say I NEVER see them being prescribed, but it is quite infrequent and seemingly used only for those who have manageable pain levels  at around 5 or less.

Neuropathic pain-
If you feel that her pain is neuropathic, then tricyclic antidepressants are another option instead of the Neurontin.  Corticosteroids are used to treat liver mets or visceral pain too.   

I'm so sorry your mom is having so much pain, and I will be thinking of you both.

-Karen

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

A colleague of mine passed this information on to me, and I thought to share.  This is an organization with summer camps across the country for children who have a parent affected by cancer. 

The camps are generally 1 week in length and are free. 

The camps are run by college student leaders who are extensively trained, and supported by medical and mental health staff.   Applications open in January of each year. 

http://campkesem.org/

-Karen

Beatriz,

What a kind thing for you to say, thank you! :-)

-Karen

Hi Megan,

I'm so sorry to hear about your mom, and hope that she starts feeling better soon!

This is just a quick response right now so you aren't having to wait on me too long. 

1. Did the hospital rule out pancreatitis? 2. Are they doing daily lab work?  (CBC, CMP) 3. Is your mom still nauseated?  4. Is her belly swollen or tender?  5. Does she have a fever?  6. Is her blood pressure ok?
7. Is she having bowel movements and urinating without difficulty?   
8. How does she describe her pain?  9. Are the physicians discussing on a daily basis what their next step is, or what plan they have for your mom?

  If they are not giving clear information, or you, your mom, and family feel distressed with what is happening, hold a physician/family meeting.  The physicians should be writing daily notes in the chart which always end with what they have seen that day, and what they are planning to do now, tomorrow, and so on.  This information should be shared and understood by everyone so that there is a clear understanding of the plan of care.  Additionally, ruling out the source of the pain is first and foremost, but also aggressive pain management is imperative.  Insist on this.

I hope this helps a little!

-Karen

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