Discussion Board Forums Supportive, Palliative & Hospice Care Palliative care is: Taking control of your life

Viewing 12 posts - 1 through 12 (of 12 total)
  • Author
    Posts
  • #95088
    positivity
    Participant

    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.

    #95087
    marions
    Moderator

    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-doc-why-many-cancer-patients-dont-have-answers/

    #95086
    marions
    Moderator

    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/2015/03/30/building-a-quality-of-life-national-movement-igniting-advocacy-to-integrate-palliative-care-in-our-us-health-system/

    Marion

    #95085
    positivity
    Participant

    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.

    #95084
    karend
    Participant

    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/10.1007/s00394-016-1158-4

    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/article/S0168-8278(14)00067-1/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.

    #95083
    positivity
    Participant

    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?

    #95082
    marions
    Moderator

    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

    #95081
    karend
    Participant

    • This reply was modified 2 years, 6 months ago by karend.
    #95080
    gavin
    Moderator

    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

    #95079
    positivity
    Participant

    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.

    #95078
    gavin
    Moderator

    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

    #13407
    karend
    Participant

    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-care/a-quality-life-season-2-episode-3-life-after-diagnosis

    -Karen

    • This topic was modified 2 years, 6 months ago by karend.
Viewing 12 posts - 1 through 12 (of 12 total)
  • You must be logged in to reply to this topic.