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Palliative Care: Supportive Care Resources

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Barbi View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2011 at 8:57pm
It is very interesting that Palliative Care is a field that is changing and growing as the field learns what the needs are as well.
For instance, it is sometimes hard to turn away a referral from a doctor for palliative care when we felt that the pain management department was a better choice. A good example might be someone with a chronic illness or injury might need an epidural injection or a PCA.  Those things are handled really well by the anesthesiologist (SP?) that make up the pain management department. But, we might be able to really help on an ongoing basis the cancer patient who suffers from bone pain due to their bone metastasis. Maybe the bone metastasis is stable but the pain continues. I knew a teenager who was cured of his cancer, but his bone pain was so bad, he had his leg amputated. Maybe palliative care could have helped in that case.
There were times that the docs in our hospital would look at us like we were crazy when we made certain suggestions about drugs for constipation or increased dosages for pain management (or drugs they were not comfortable using), but if we could ever convince them to take our recommendations, they were usually surprised at the positive outcomes.
Symptom management, not just pain.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2011 at 10:51am
Barbi, I'm curious what your experience has been as an insider so to speak, with patients finding pallative care in smaller more rural facilities...do the clinic oncologists do double time or how do they address this?
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2011 at 11:13am
Mainy, I don't know as I worked in a regional Children's Hospital. I would guess most rural hospitals don't have a Palliative Care Department and hope that those facilities  doctor's either stay well informed of current practice or are not afraid to refer their patients out the same way we hope they will refer out to a medical oncologist who specializes in TNBC. It's always nice if we can treat at home but have the input of docs at a larger facility and, as we all know, they will often continue making recommendations without necessarily having "hand on" once they've established a relationship with a patient.
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2011 at 4:47pm
Thanks Barbi for the insight, I think I'll ask the local visiting nurses association if they have any involvement. I have so many friends and neighbors here who have to do without all kinds of care because we are such a distance from a hospital and our local clinic is just not set up for much beyond unspecialized care.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2011 at 10:20am
Yes gals, it is so strange that when someone hears Palliative Care they automatically think of death, when in fact pain management and comfort are so important to this journey.  Just because the cells are zapped, does not mean that we are cured from all the treatments, what it does mean is that there are other things that happen after treatment that need good attention to continue on this new life. 
 
Our pain management dept is so overwhelmed that to refer patients there would take up to 9 months to get a consult let alone a plan.  By that time, the pain is so overwhelming that yes, in the instance of the teen that Barbi mentioned having his leg amputated could have been avoided.  Did that really change his pain? I know I had phathom pain after my bmx.  I still get twinges where the nipple used to be on the left side???
 
Information is so vital to our well being and when this is not related to each patient of the options, we fall through the cracks.  Yes, physicians need to learn to listen to us.  We have been there and are on our way back! Please pray for this, everyone.....
Hugs, h.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2011 at 4:57am
Hello, 

It has taken time for me to be able to read further than the Newbie stuff and at times i will read a little, cry, come back in a few days and read a little more. I just ventured here tonight as I am up very late - almost 5 am as we are really having some storms here in South Florida this weekend. I was not given much information while going through my surgery and chemo other than where i could buy a wig, prosthesis and that there was a local service for cancer patients that i could use to clean my house. I was very depressed at the time and only recently started sleeping through the night. It's nice to know these things have a place to be addressed now on this forum and i hope newer people will feel comfortable enough with the title to venture here...i didn't until today but not everyone is like me...i couldn't even shave my head - i just waited until it fell out...but i do love my new, beautiful, thicker, wavy hair!

Thank you all and i think i'll try to get some sleep now since it is still raining and my husband is snoring loudly as usual! 

Blair

33 years married to a wonderful man, mother of two sons 26 and 28
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2011 at 8:10am
Living Beyond Breast Cancer (LBBC) Teleconference Series on Palliative Care.

http://lbbc.org/Events/2011-10-24-Living-Well-with-Metastatic-Breast-Cancer-Part-2?tr=y&auid=9659066

The Role of Palliative Care: Exploring What’s Meaningful for You

When:   Monday, October 24, 2011 
12:00 p.m. - 1:15 p.m. EDT

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Barbi View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2011 at 6:03pm
This looks like a great conference which explores many of the difficult issues we've been touching on.
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote reynabb Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2011 at 9:10pm
with all my respects, this is just my opinion :
I would like you to call things by the real name so I don!t have any confusion and I can have more information and know exactly what I!m dealing with so I can fight it. since my 1st dx jan/2008 I had been reading a lot of post in diferent forums even metastesis when I got my 2nd dx april/2010 , reading metastesis help me to learn about diferent quimotherapy treatments, pills, side efects, ways to controll them, learn how to read my lab test, being aware of prognosis... and I fighted, got 29 quimotherapys, in Jan/2011 the 6 tumors in the lungs shrenk 50% I stop for 4months because I got bronquitis, and continued them in 4/2011 the last taxotere did not work and unfortunate the Doctor didn!t see my body was not responding, I supposed to have 6 treatments and I decide to stop at 5ft and change Doctor.this new doctor send me with the pulmonary decease doctor and I got a broncoscophy, then he burn a little tumor bleading inside the airway (since march/2011I was suffering from this), my new pet scan show my tumors increased (lungs are full almost no space). this Lung doctor talked with the family about palliative care and hospice (Greatest thing because my new oncologist put me on xeloda and he talked about more Quimotherapy). whatttttttttttt.......to keep on sufering in my last days of life?
knowing about my condition make me more strong,I was very happy before and now, I!m living well, I don!t waiste my life thinking that I am dying but Iam ready to do so any minute and I!m prepared.
I think we still have a hard time and pain accepting dead and the reason is because nobody wants to talk about it.
thank you very much for your work and dedication to this forums.
Thumbs Up Best wishes
XOXO!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2011 at 5:06pm
Dear Reyna:
 
I am so sorry to hear about all the treatments you have had since 2008! You are a fighter though! Me too!
 
My first diagnosis was in 2009 and then again in 2011, so we have been battling this quite a while.  The only difference is that I had a bilateral mastectomy (both breasts removed) in June of this year and opted for no chemo or radiation.  I believe in quality of life now, not quantity. But this is my choice.  Hopefully, I will get a few good years out of my decision.
 
Yes, I agree with you about using terms we can all understand and we have to include the hard terms too, such as Palliative Care, Pain Management, and Hospice.  When I am ready, if I have pain to be managed, I will ask for Palliative Care to be involved in my care.   They are wonderful and come to the home to assess your needs, etc.  When I know the end is near, I then will ask for Hospice to help my loved ones journey to the end with me.  I too am ready whenever the good Lord is ready for me. 
 
How old are you?  I am 60. 
Do you have children?  I have two.  One boy, one girl.
Do you have grandchildren?  I have two.  Two boys and two girls and they are what keep me going. 
 
Death is hard to speak about but it is one final chore that we all have to do so why not discuss it and let our loved ones know what we want and don't want?  I know my grandsons worried about me and thought I might die the first time around because of how sick I was from the chemotherapy.   They now know that we can fight hard and keep going each day and I tell them, it is them that I live for as well as my God. 
 
I like to ask God every day: What do you have on the agenda for today, Lord?  He usually tells me to call someone or if I am out speak to that someone who may need a smile as reassurance and I do.  You are like me we will continue on until we can't continue on any more. 
 
Are you in pain at all?  If so, get some pain management through Palliative Care.  They are wonderful people and know how to make our days as good as they can be. 
 
Do you have a good support system in place?  Come back here and we will be here for you.  Check out our other forums as well.  We have a wonderful spiritual forum with great warriors who pray all the time for everyone here, for people they know and don't know.  Just believe that we are here to make a difference and you are making a difference whether you know it or not.
Take care, Hugs, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2011 at 11:22am
You can order a complimentary copy of this brochure -

Metastatic Breast Cancer Series: Understanding Palliative Care

http://www.kintera.org/site/apps/ka/ec/product.asp?c=ajIRK7NHLeJ4E&b=6455811&en=rmJVLbOUJeL2IcNPLhKXIjN1JgIYLhMYJjL6IrOeG&ProductID=1496091&tr=y&auid=9707821

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Donna:  We always think alike! I just received this in my email and am passing it on. 
 
If anyone wants to register just click on the blue register now and it should bring you to the right area.
 

Teleconference on Palliative Care

Register now for our free teleconference, The Role of Palliative Care: Exploring What’s Meaningful for You, on Monday, Oct. 24 from 12:00 p.m. – 1:15 p.m. ET. This is the second of a two-part teleconference series on metastatic breast cancer. Learn more.

Jamie Von Roenn, MD, will explore the benefits of palliative care and the ways to discuss your options with your healthcare providers. During this teleconference, you will:

  • Find out how palliative care can be part of an integrated approach to treatment
  • Understand how palliative care differs from hospice care
  • Learn how a palliative care plan supports your quality of life while addressing your physical, emotional, social and spiritual needs
  • Explore ways to cope with your reactions and the reactions of those you love around the often difficult feelings associated with palliative care

Take care, Helen in NS



Edited by TNBC_in_NS - Oct 19 2011 at 8:40pm
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2011 at 5:24pm
Kudos to the US for having Palliative Care in 85% of their hospitals!
.
PALLIATIVE CARE
5. Sharp rise in number of palliative care programs
A new report notes that the number of hospitals that have implemented palliative care programs has risen since 2008, with such programs now in 63% of hospitals that have 50-plus beds. (Among hospitals with 300 beds or more, 85% have programs.) The report, released by the Center to Advance Palliative Care, gives states grades for the percentage of hospitals in that state with palliative care programs. Only two states (Delaware and Mississippi) received an "F" for having palliative care programs in less than 20% of hospitals in those states, while seven states received an "A" for having programs in between 83% and 100% of their hospitals. Read more on the Center to Advance Palliative Care Web site.


Edited by TNBC_in_NS - Oct 21 2011 at 5:24pm
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2011 at 5:27pm
While we're here discussing pain issues, what does your doctor allow you to take for pain?  I asked the MDA pharmacologist and she said "We prescribe Tramadol for pain."  MDA is so picky about what you can and can't take, I don't even know if OTC meds are OK at this point.  It's a question I will ask via their message system since Tramadol isn't touching my leg pain. 

I have a high pain threshold, always have.  Not long ago I was a regular biker- the kind you pedal.  I've taken major spills more than once, was bleeding and sore, but brushed it off and kept going- It didn't keep me from getting back on the bike and making my destination.   Stupid probably, though that's the way I've always been.  As a kid I did a lot of ice skating.. also with injuries, but they never stopped me from getting up and going some more.

So, those with major pain issues.. my question is, what does your doctor prescribe?  I have leftover Tylenol with codeine since I've had back issues since 2002, but won't take because I'm deathly afraid they will interfere with my chemo treatment.  I've already had one chemo fail without any pain at all.  Now I'm afraid I have residual pain from the first failed chemo.  Like I said, it's mainly in my legs and keeps me up all night.


Edited by mindy555 - Nov 07 2011 at 5:38pm
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wade Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2011 at 7:57pm
Hi Mindy,

Kerri's doc prescribed hydrocodone/apap (Vicodin 5-500) every 4 hrs as needed and Tylenol and Motrin as needed. She ended up not using much of the Vicodin, except at night to help her sleep.

I hope you're feeling better...

Wade
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2011 at 9:22pm

Hi Mindy:

Sorry for not getting back to you sooner :(  and also sad to hear of your leg pain. 

Are you finished your chemo?  Oh ok, just read yes you are done now but not too long ago.  I think the chemo keeps our bodies in pain for a few months after as it is still working each day.  Wade mentioned Vicodin, and some use this, and if you are like me with high tolerance to pain, this may be what you need?? I took Neupogen injections during my chemo.  My legs were dreadfully painful, but after a few days they settled down and was able to live with Tylenol/Advil. 
 
Speak with your onc or better yet, your onc nurse, they know more about the pain we have during this trying time.  I used to elevate my legs with pillows and that would take the pulse like pounding away and try to sleep.  Try warm baths as well.  I do hope you will find the right type of medication to alleviate this pain.  If you can't get anything to work, then ask for Palliative Care to regulate some meds for you.  Bless you, Helen in NS

 

 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote suec Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2012 at 11:49am
i'm happy with any term;  feel like most of us have faced so much by this timethat terminology no longer makes too much difference.  i am entering somekind of palliative care this week at two oncs suggestions. one from mayo jax who says studies show life extension the sooner one starts.  thanks to all who are concerned and remain involved.  suec
tnbc 3b: partial mas 5/06; 6 rounds FEC; 36 rad; 05/09-mets to bone; xeloda, avastin, zometa; gemzar & avastin; rads to hips; 8 mo on methotrexate+5fu; 5/11 mets to liver/lung; halevan fails;carb&Abrx
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Dear Sue,

I am not sure what kind of palliative care program you will be on, and I am not trying to pry, but if it is a supplemental program to your treatment program that’s one thing. If it is a Home Hospice program you cannot be on chemo, BUT e.g. if a new clinical trial came along that your oncologists felt you would qualify for and they recommended it you could leave Home Hospice, at any point, and start the trial.

good luck to you!! I know you have been through a lot and you shall always have our support.

warmly,

Steve


Edited by steve - Apr 03 2012 at 12:43pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suec Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2012 at 5:23pm
steve, i will not be under hospice at least not yet.  we are waiting to hear from mayo re phase 1 trial.   i did not qualify for phase 2 trials.   this was not a surprise to me and will have to ck carefully before signing up for any others in dr. perez's arsenal.  thanks for your continued interest.  sue 
tnbc 3b: partial mas 5/06; 6 rounds FEC; 36 rad; 05/09-mets to bone; xeloda, avastin, zometa; gemzar & avastin; rads to hips; 8 mo on methotrexate+5fu; 5/11 mets to liver/lung; halevan fails;carb&Abrx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2012 at 5:34pm
Dear Sue,

I understand. I think I wrote what I did to you more for others who don’t realize that you can get supportive care (as part of a palliative care program) while you are undergoing chemo. It is unfortunate that supportive care services and hospice (whether home or in-patient) get put together under the same umbrella. Most people only think of hospice when they hear the term palliative care and that is unfortunate
because I think people equate palliative care with end-of-life care so they don’t even try to find out what services are available.

Please say hi to Dr. Perez next time you see her. I met her just once in San Diego last January, I believe. I doubt if she remembers me, but please tell her I am still a big fan of hers. I think she is a wonderful oncologist and a marvelous woman.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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