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Topic: So is Palliative care even available many places

Forum: Palliative Therapy/Hospice Care — A unique forum ONLY for those trying to live well and/or trying to die well.

Posted on: Nov 8, 2013 10:09AM

Chickadee wrote:

There just doesn't seem to be much out there when we inquire about Palliative care ongoing. Is it a big medical facility offering? Is it not well funded so no one is interested? Or did the ridiculous "Death Squad" BS shut the conversation down?

Not talking Hospice, I'm talking Palliative.

So many of us could benefit from the added care to our discomforts and pain yet we have to dig for anyone who will even hire someone to provide the service.

Apparently my large Medical system has a fledgling organization if I am willing to drive 60 miles to their flagship facility. But no plans yet to bring it closer.

Stupid.

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012 Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Nov 9, 2013 04:55PM Bren-2007 wrote:

Chickadee ... My friend Brenda uses palliative care services in Hickory, NC. I believe a nurse comes to visit her once a week.

hugs,

Bren

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Nov 9, 2013 05:09PM - edited Nov 9, 2013 05:12PM by AmyQ

My husband is Director of Pallative Medicine at Hennepin County Medical Center in Minneapolis. The department is growing every year and he travels and speaks a fair amount to other physicans and hospitals instilling the message. He worked for the VA for 26 years where they were one of the first facilities to recognize and endorse pallative medicine. I was so very grateful for his wisdom, support and loving kindness while going through my 5 surgeries and 5 chemos this year. I gleaned a lot of comfort from his knowledge and assistance and cried many tears for all the people who do not have access to such wonderful support. And to think I sleep with this wonderful man. God has blessed me.

Let me add that I see Pallative medicine growing as it can be a huge money saver to medical institutions and yet provide comfort care to patients and their families.

Dx 2/7/2013, IDC, 1cm, Stage IV, Grade 2, 2/3 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/9/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/19/2013 Femara (letrozole) Radiation Therapy 11/25/2015 External: Bone Hormonal Therapy 1/10/2016 Faslodex (fulvestrant)
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Nov 9, 2013 05:23PM DianeKS wrote:

chickadee,

Sorry you are struggling to find services in your area. I feel like there should be one person to call to connect you to palliative care. It is hard enough to deal with the physical challenges of this disease ...not to mention the stress of co-ordination your own care. Does your oncology clinic nurse have any resources for you?

It would be a long drive, but 60 miles for an assessment and getting you in the 'system' might be worth it..

Sorry, no other practical help here, in the Canadian system, either system can be a struggle.

Hope you get some more advice here, good luck with your search,

Diane

'Be thou a smooth way before me...'. Dx with mets to bones May, 2011, first dx 2006, BRACA2 Targeted Therapy 7/25/2013 Tykerb (lapatinib) Chemotherapy 9/4/2014 Gemzar (gemcitabine)
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Nov 9, 2013 07:21PM steelrose wrote:

Chick,

I live in a small town, and my radiologist offered to refer me right after my stage iv diagnosis. He stressed that palliative care is not hospice, and that stage iv patients survive longer under this care. I was too freaked out and stubborn to pursue it at the time, but it does sound good. Radiologists are somehow very eager to help in this area. Maybe ask yours?

Always thinking of you, and wishing you the best!

Rose.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Nov 24, 2013 11:57PM Rosevalley wrote:

Our stupid Oregon HMO doesn't have anyone listed.. figures. I wouldn't be surprised if it saved money and made patients happier about the care they receive. Everything I have read is that palliative care MDs are an asset to the patient. makes me mad. Amy Q you are very lucky!!

Double mastectomy 07/ chemo ACT, Radiation/ 07 Arimidex, 08 Aromasin, 2012 Faslodex, 2014 Afinitor / mets spine, bones 6/2015 mets to omentum, malignant ascites, lung, liver/ 2016 Herceptin, Doxil, Faslodex. Ibrance, Taxol, Abraxane, Navelbine Dx 1/2/2007, ILC, 6cm+, Stage IIIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2- Dx 6/1/2015, ILC, 6cm+, Stage IV, Grade 2, 1/17 nodes, ER+/PR+, HER2+ (FISH)
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Nov 25, 2013 12:48AM AmyQ wrote:

Rosevalley

Thank you. I am very lucky and very grateful.

Dx 2/7/2013, IDC, 1cm, Stage IV, Grade 2, 2/3 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/9/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/19/2013 Femara (letrozole) Radiation Therapy 11/25/2015 External: Bone Hormonal Therapy 1/10/2016 Faslodex (fulvestrant)
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Nov 25, 2013 01:14AM wyo wrote:

Thought you all might find this palliative care state-by-state grading system helpful. AmyQ your wonderful-sounding husband probably knows all about this in his work.

Oregon actually has an A grade and is better than western region and US both.

Texas on the other hand has a C-grade- I searched Williamson Cty.

http://www.capc.org/reportcard/home/TX/RC/Texas/2853

http://www.capc.org/reportcard/home/OR/ST/Oregon

Dx 9/2013, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 9/30/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 11/6/2013 Whole-breast: Breast Hormonal Therapy 12/6/2013 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx
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Nov 26, 2013 12:56AM Rosevalley wrote:

Wyo- that's a very interesting link. You can access by counties and up comes the hospitals. My husband signed us up for an HMO and of course nothing is listed on their provider list for palliative MDs. Yet their own hospitals list the service... but not for our HMO portion. Really?? Insurance is a mixed blessing and a curse all in one. I so miss the days when we had Blue Cross/ Blue Shield.

Double mastectomy 07/ chemo ACT, Radiation/ 07 Arimidex, 08 Aromasin, 2012 Faslodex, 2014 Afinitor / mets spine, bones 6/2015 mets to omentum, malignant ascites, lung, liver/ 2016 Herceptin, Doxil, Faslodex. Ibrance, Taxol, Abraxane, Navelbine Dx 1/2/2007, ILC, 6cm+, Stage IIIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2- Dx 6/1/2015, ILC, 6cm+, Stage IV, Grade 2, 1/17 nodes, ER+/PR+, HER2+ (FISH)
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Nov 27, 2013 01:59PM Jelson wrote:

Can palliative care be provided even if there isn't a formal program - but there is a provider who has embraced the concept?

A friend with stage IV gastric cancer sent me this link. something to ponder.

http://sunriserounds.com/chemo-palliative-perspective/

Dx 4/17/2009, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+
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Jan 20, 2014 08:45AM bhd1 wrote:

I don't understand .  Are they saying chemo for stage 4 bc does not prolong life?

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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May 17, 2014 10:49AM Padiddle wrote:

I know this is an older topic but I wanted to add that I recently signed up for visiting nurse help.  Been having tough times lately.  At any rate, the visiting nurse told me that "palliative care," is just the new buzz word for visiting nurse help.  I'm in the state of NH, so maybe it's different here.  Jean

Mets to sternum, ribs, thoracic and lumbar spine, femur, pelvis, lungs, skin, peritoneum, adrenal glands Dx 8/2000, IDC, 1cm, Stage IIB, 10/13 nodes, ER+/PR+, HER2- Surgery 9/9/2000 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 11/16/2000 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/19/2001 Breast Dx 10/5/2009, IDC, 2cm, Stage IV, 1/1 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 2/28/2010 Femara (letrozole) Surgery 11/29/2011 Mastectomy: Left Chemotherapy 4/3/2012 Taxol (paclitaxel) Chemotherapy 11/25/2012 Gemzar (gemcitabine) Chemotherapy 2/3/2013 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 1/5/2014 Halaven (eribulin) Chemotherapy 4/27/2014 Navelbine (vinorelbine)

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