Topic: Palliative care is: Taking control of your life

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

This information is not intended nor implied to be a substitute for professional medical advice.  If you have questions or concerns, please consult your physician or health care provider.

Re: Palliative care is: Taking control of your life

Totally agree Karen and I know from both my dads and mums experiences that they both felt better once things were in place  before arrangements had to be made for palliative care etc.

Thanks for this.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Palliative care is: Taking control of your life

Thanks for the information.  It is tough, but I feel that this is the only thing I could offer my mom at this point.  She is not getting help from a palliative team, but from family.  Also, getting stents is part of palliative care and she has it.

Re: Palliative care is: Taking control of your life

Hi Tia,

Please don't beat yourself up about any of this and what you are doing for your mum. I so know from my dad and from looking after my mum for 11 years as well how hard all of this is. None of us are professionals in caring and there sure is not some carers manual that we can all refer to when things get tough!

I know how much it will mean to your mum what you and the rest of your family are doing for her so please do not beat yourself up over anything. You are doing everything that you possibly can for her and that will mean the world to her. Would it not be possible to speak to your mums med team, local doctor or something to see about getting some palliative help for her? Remember as well that we are all always here for you too.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

5 (edited by KarenD Thu, 01 Jun 2017 10:42:53)

Re: Palliative care is: Taking control of your life

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

This information is not intended nor implied to be a substitute for professional medical advice.  If you have questions or concerns, please consult your physician or health care provider.

Re: Palliative care is: Taking control of your life

Fay....I agree with what has been said.  Palliative Care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
Take a look at this link:
https://getpalliativecare.org/whatis/

Are you with your Mom in Canada or have you returned to the US?

Hugs
Marion

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

Re: Palliative care is: Taking control of your life

Thank you so much for your feedback and support.  I am glad to be part of this board, and I highly believe, as Karen has stated that CC is hard to figure out.  I feel doctors are learning also by each patient they treat.

My mom had a serious chronic anemia before diagnosis, and this was a deterrent to moving forward with chemo, as chemo would make her more anemic.  I have not seen another patient who had chronic anemia pre-diagnosis, so again each individual is unique.  I can't imagine with someone who already has low platelets and hemoglobin and RBC that chemo would help them.  So again we were in a bind, and really nothing to do, but support.  Her CC is not operable and stable at this time.   This is still a challenge as we have to keep her energy level up and manage the anemia.  Individuals who are dealing with several medical issues concurrently can be harder.

Karen, is high inflammation a typical symptom for all individuals with CC?

8 (edited by KarenD Fri, 02 Jun 2017 08:57:41)

Re: Palliative care is: Taking control of your life

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.

This information is not intended nor implied to be a substitute for professional medical advice.  If you have questions or concerns, please consult your physician or health care provider.

Re: Palliative care is: Taking control of your life

Thanks Karen for sharing.  This is helpful.  It seems that way in that individuals are different when getting a CC diagnosis and different in how they respond to treatment.  It's almost like the medical team has to dissect each patient which is more time consuming and that's why there is one standard treatment to recommend for all.

Re: Palliative care is: Taking control of your life

Unfortunately, the majority of our patients are not offered Palliative Care while undergoing treatments.

This article describes the details and also reminds us to push for this type of care:

http://healthaffairs.org/blog/2015/03/3 … th-system/

Marion

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

Re: Palliative care is: Taking control of your life

What we have witness on this board too few patients are offered palliative care, because there is a shortage of Palliative Care Specialists.

Take a look at this link:
http://khn.org/news/how-long-have-i-got … e-answers/

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

Re: Palliative care is: Taking control of your life

Thanks for the article Marion.  Doctor's should be upfront and not mislead any patient, even if the news is tough to deliver.  In my journey doctors had no problem giving the bad information from the beginning.  Such as: awful tumor, poor prognosis, surgery may be a cure, will eventually cause bad stomach pain if no chemo, 6 months with no treatment, bad location, chemo may not work
Yes it was difficult to endure this information, and chemotherapy was not an option for our case.  The only option we had is palliative care, and part of this care was for family to implement it.  As we have said on this site, palliative care must be offered from the beginning of a patient's care.