Palliative Care

Posted by Merry, Volunteer Mentor @merpreb, Tue, Sep 3 6:54am

I know that I have been confused as to what palliative care means until my oncologist recently used it in reference to me me! I said, “Whoa, hold your horses am I dying or near the end, I have plans?” All of my life I have known it to be in reference to dying patients, keeping them comfortable and pain free. Boy was I wrong!
“The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and treatment. Palliative care also treats emotional, social, practical, and spiritual problems that illnesses can bring up. When the person feels better in these areas, they have an improved quality of life.
Palliative care can be given at the same time as treatments meant to cure or treat the disease. Palliative care may be given when the illness is diagnosed, throughout treatment, during follow-up, and at the end of life.
https://medlineplus.gov/ency/patientinstructions/000536.htm
I am blessed to have such an excellent oncologist. Dr. Jennifer Temel is an expert in palliative care and uses it with her patients along with other doctors caring for that patient. Palliative care needs to begin at diagnosis and follow you through your illness- from hang nail to manicure. (http://www.dfhcc.harvard.edu/insider/member-detail/member/jennifer-s-temel-md/)

So with out further blathering please read what she has to say because she says it perfectly.
https://www.ascopost.com/archive/meetings/2015-palliative-care-in-oncology-symposium/jennifer-s-temel-mds-expert-perspective-palliative-care-in-2015/
(By the way, it’s true- the camera does add 10 lbs on!)
My palliative care has been excellent since the very beginning. After surgery I have had every pain and discomfort tended to, medicines or suggestions given to me, explanations made as clear as they could on the day that I asked. I think of palliative care as having a new “mommy.”

This is the video that Dr. Temel refers to at the end of her talk. https://www.ascopost.com/archive/meetings/2015-palliative-care-in-oncology-symposium/vicki-jackson-md-mph-on-effective-care-integration-and-the-comanagement-model/

What have your Palliative care experiences been like?

I have been with Mayo in Florida for 5 years with stage iv and have never been offered palliative care….amazing.

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@seaspray– Palliative care is all care, from t he beginning of your illness to it's end. I don't think that a doctor would normally say this. My oncologist did because she was explaining something to me that I did not understand. Also palliative care is a rather new concept in treating everyone, although it shouldn't be. And it's far from complete unless it involves all qualities of life, including spiritual or religious. I know from your posts that you have had problems with Mayo in FL getting into trials and testings. But remember that palliative care also takes care of all basic care too. it's an all encompassing care regime that is slowly improving and evolving. It's far from perfect or finished. How are your scans now? How are you feeling?

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@merpreb Thatis really an eye-opener regarding the truth about Palliative Care. I had no idea–just thought it had to do with end of life issues. Thank you for enlightening at least this person.

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I have released by my PAalliative team because I do not need pain medications at this time and spiritual support consistent with non non-theist belief system is not available. I am fearful of my demise and do see the teams clinical psychologist periodically to deal with that and that has been helpful

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My husband was offered palliative care when he was diagnosed and that was a year ago. Unfortunately the team that does this for our insurance/doctors were very weak in explaining what that really was or what they could do. Just last week I finally got an answer and some support. The addition of palliative care is very important and helpful but the quality of the team providing it makes all the difference. I'm grateful to finally have found a social worker within the team who 'gets it' and is helping us get more support.

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@bentrivercarla – I can't imagine how that made you feel. I am terrified of dying too. Is counseling helping with this? Do you need more help with this? Have you been released from all treatments too? How do you feel about being released? In which manner were you released? I can I help?

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@cindylb

My husband was offered palliative care when he was diagnosed and that was a year ago. Unfortunately the team that does this for our insurance/doctors were very weak in explaining what that really was or what they could do. Just last week I finally got an answer and some support. The addition of palliative care is very important and helpful but the quality of the team providing it makes all the difference. I'm grateful to finally have found a social worker within the team who 'gets it' and is helping us get more support.

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Happy for you

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@cindylb

My husband was offered palliative care when he was diagnosed and that was a year ago. Unfortunately the team that does this for our insurance/doctors were very weak in explaining what that really was or what they could do. Just last week I finally got an answer and some support. The addition of palliative care is very important and helpful but the quality of the team providing it makes all the difference. I'm grateful to finally have found a social worker within the team who 'gets it' and is helping us get more support.

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@cindylb– Hi! This is so encouraging to hear. People who "get it" make life easier to live with even if it's a downhill battle. Are there any special comments that have been made by your counselor that you might share with us that could help someone else?

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@merpreb

@bentrivercarla – I can't imagine how that made you feel. I am terrified of dying too. Is counseling helping with this? Do you need more help with this? Have you been released from all treatments too? How do you feel about being released? In which manner were you released? I can I help?

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It has helped a bit because the psychologist listened and even pointed out that in many ways she agreed with me, helped me accept that I am more a fighter than a mystic (I was trying to be more a mystic HA). She also pointed out the current realities of the health care system which was accurate but not necessarily helpful. We did some exercises as part of a relatively new practice called meaning-centered therapy. We discussed my results the essence of which were I am afraid of death. I thought this was useless but my sweet husband pointed out that was just the test result – now we work on applying it. I am being helped enough to remain committed. My psychologist is at Mayo and I am finding her more than competent and would recommend her. Thanks

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@bentrivercarla– I love this, thank you.

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@merpreb

@cindylb– Hi! This is so encouraging to hear. People who "get it" make life easier to live with even if it's a downhill battle. Are there any special comments that have been made by your counselor that you might share with us that could help someone else?

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I found the lack of any emotional support from our medical people during my breast cancer journey very disappointing. However, that's how I found the Mayo site and it's been a real blessing and help. To finally find someone who acknowledges that having cancer and now being a cancer caregiver is difficult and challenging has been uplifting. I tend to both act and be strong but underneath that is great fear and sadness that I'm sure is universal. When you act like you have it 'all together' doctors tend to think you do and don't offer much hand holding. As my husband and I face his cancer we have found that our world view on illness and death are somewhat different. I think it's important that my husband has the chance to talk to a counselor without me and then for me to talk with the counselor without the interference/noise of years of married life, I hope I can see my husband's point of view better and be better able to help him face this diagnosis. I'm a fix it, get it done, do whatever it takes kind of person with illness and he's a quality of life guy who is much more accepting of death……..this will help us work this out and I think we won't feel so alone and abandoned. My husband's difficult diagnosis of Cancer of Unknown Primary (which persists after 18 months) has been a whole new kind of stress.

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@cindylb– I also found the lack of emotional support very disappointing. But my husband askekd me, do you want a friend or surgeon? What a good point! Surgeons and radiologists seem to be very straightforward, dealing with precision and numbers. I do remind my radiologist, who I adore, that I am a person and he has to look at that too. He always says "Numbers don't lie" or some such nonsense. I tend to make my doctors my friends, at least my lung team.
Your husband is very lucky to have a wife as willing to help and compromise during this difficult journey. It's so important to know what kind of a person you are helping too- I take care of things immediately too, but I tend to trip over my other emotional self.
However having stage 4 lung cancer myself I also want a good quality of life. I am petrified myself of accepting my own death. I'm also thinking about looking into counseling about this through my oncologist's office.
I love, love, love the expression, "noise of married life and life itself!" I'm going to steal this term!
I am so glad that you have spoken freely as you an here. I hope that others will see the value of searching out such a person. Has your husband benefited from the counseling too?

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@merpreb

@seaspray– Palliative care is all care, from t he beginning of your illness to it's end. I don't think that a doctor would normally say this. My oncologist did because she was explaining something to me that I did not understand. Also palliative care is a rather new concept in treating everyone, although it shouldn't be. And it's far from complete unless it involves all qualities of life, including spiritual or religious. I know from your posts that you have had problems with Mayo in FL getting into trials and testings. But remember that palliative care also takes care of all basic care too. it's an all encompassing care regime that is slowly improving and evolving. It's far from perfect or finished. How are your scans now? How are you feeling?

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@merpreb -To answer your questions, my scan last week was all stable! I am thrilled as this shows that the Tecentriq that I started months ago is working although many had doubts switching from 3 1/2 years of Opdivo to another immunotherapy would help. I do have a Rhuematologist appt coming up in 2 weeks to see if all my pain is from one of the "itis" family. Inflammation is my worst complaint along with extremely tight muscles. Just went through a few days of prepping for this Hurricane, which will be on our coast in a few hours. Now I can actually have a day off.
BTW, I never had problems with Mayo for trials…..they had no trials back in 2014. I went to Tampa, Florida to Moffitt for the trials that I flunked out of!
Even after my husband died at Mayo, there was no offerings of any type of service. I have to be my own advocate on everything. I only see the oncologist once every 3 months for 15 minutes. They are understaffed and have grown to so much in the 5 years I have been going there.
Hopefully I will still have power at my house tomorrow morning to take a shower….have my labs and infusion at 8:45!!

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@seaspray

@merpreb -To answer your questions, my scan last week was all stable! I am thrilled as this shows that the Tecentriq that I started months ago is working although many had doubts switching from 3 1/2 years of Opdivo to another immunotherapy would help. I do have a Rhuematologist appt coming up in 2 weeks to see if all my pain is from one of the "itis" family. Inflammation is my worst complaint along with extremely tight muscles. Just went through a few days of prepping for this Hurricane, which will be on our coast in a few hours. Now I can actually have a day off.
BTW, I never had problems with Mayo for trials…..they had no trials back in 2014. I went to Tampa, Florida to Moffitt for the trials that I flunked out of!
Even after my husband died at Mayo, there was no offerings of any type of service. I have to be my own advocate on everything. I only see the oncologist once every 3 months for 15 minutes. They are understaffed and have grown to so much in the 5 years I have been going there.
Hopefully I will still have power at my house tomorrow morning to take a shower….have my labs and infusion at 8:45!!

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@seaspray– Oh no, you were in Dorian's path? Do you have anyone down there that can check?
Hip hip hooray! Such excellent news about Tecentriq. What is your status now?
I have never tried to get into any trials as SBRT has worked beautifully for me. Also my oncologist thinks that for me, any infusions would make my quality of life pretty miserable without knowing if it will do anything. My doctors have given me 22+ years so far so I'm not arguing!
Good idea seeing rheumatologist. They have so many extra blood tests that they can do to limit the focus and see what they can find.
Let me know about your home, will you?

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@ seaspray Hope the hurricane leaves you alone. We never lost power here in Ormond Beach…..flickered a few times. Mayo does now have clinical trials at least in the triple negative breast cancer area. I also went to Moffitt for a clinical trial for the breast cancer, which I also flunked out of. They had a trial of the same drug at Mayo but it didn’t start as soon as Moffitt's did and my oncologist was afraid I wouldn’t qualify at Mayo time wise as they didn’t have a start date yet and there was a time limit on how long it could be after your chemo ended. Now that it's back in my lungs, there is another trial at Mayo that I may qualify for depending on my Foundation One and PD-L1 test results.

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