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Palliative Care: Supportive Care Resources

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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2012 at 6:16pm
Hi, Sue.  I hope your palliative team is great.  How are you doing with pain and energy and such?    I miss 'seeing' you.
Love,
Denise

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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TNBC_in_NS View Drop Down
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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: Apr 03 2012 at 10:15pm
Hi Sue:
Just checking in with you to see how things are going.  Hope you are getting what you need and more! Send us a post if you can to let us know how you are managing and if you were able to get into the trial.
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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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2012 at 12:49am
Dear Sue,

If you have the inclination/strength to post about your palliative program as it unfolds that would be educational to all of us. Since every patient is different, one patientís program may have some similarities but, from my experience, often some differences as well. When I was at Mayo in Rochester with a patient a few years ago we were told that Mayo had a palliative care program very early on.

More and more hospitals are starting palliative care units and the recent ASCO recommendations that oncologists start a palliative program, early on, hopefully will take hold. Regarding pain, as an example, there is no reason a cancer patient has to endure excruciating pain without some relief. I went to a pain conference about a year ago and several lectures were on constipation, which is often a difficult SE due to pain killers slowing your system down, including the GI tract. It was interesting to see the knowledge the pain experts had about constipation treatment. It is an important issue and again that many oncologists donít have the time or the expertise to focus on.

Good luck, Sue!!! Thank you, so much, for posting.

My heart remains with you,

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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suec View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suec Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2012 at 3:17am
steve, denise, helen, et al....sorry to be absent for few days.  have spent three wonderful days with my no. one niece and her sweet young family.  what a joy! 
thanks so much for your continued interest and support.  the palliative team is not in place due to holidays perhaps but don't think there's a huge rush yet.  i have zero pain with only mild pain patch and only serious symptom is fatigue.  my blood work of course shows low whites and reds but platelets are ok and all digestive issues under control.
steve, earlier you asked about dr p at mayo.  i have not met her and may not be likely to as she seems to be concentrating on research.  i did see dr moreno over a yr ago, liked him a lot, but when i made latest appts my main desire was speed so i went to youngest of the onco group.  since they are all heavily supervised and i like the kid a lot, i am pleased with this arrangement.  the mayo drs here in jax know my reg. onc, he is well respected, and i think they will all chat about my case to some degree.  i did not qalify for any  2 trials, so my name is now with trial coordinator and they are checking on phase one trials.  will keep ou up as things progress.  cyber hugs to all, 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote nonna1642 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2014 at 12:35am
Dear Steve,

Thank you for that excellent article about Palliative care or supported services. It helps us with chronic pain to understand it much better. Again many many thanks.
Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
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