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    Posted: Sep 30 2011 at 6:48am
Dear TNBC Foundation Family,


A true story…recently I accompanied a woman with MTNBC to her appt. with her oncologist. She looked extremely drawn/tired and in the waiting room, I asked “How are you doing pain-wise..on a scale of 1 to 10 with 10 the worst how would you describe it?” She thought for a moment and said “about a 12” and we both cracked up but that soon was replaced by her very serious face. “it’s really bad, Steve.” “How would you feel about seeing a palliative care physician to get some help?” Visibly agitated, the woman told me “I didn’t say I wanted to ‘give up’…I told you I was in a lot of pain..weren’t you listening?” I actually apologized for mentioning the words palliative care and then asked “how would you like to see a pain management specialist?” and she readily agreed…and her oncologist referred her to a pain management specialist within the hospital’s palliative care unit. As we walked in to that consultation she saw the Palliative Care sign and turned to me and said “sorry, I exploded..I get it.”

And therein lies the problem mentioned in another thread on palliative care. The misconception that palliative care is solely hospice. In time, I believe we will all receive an education and the term palliative care will mean many different things, including a variety of  supportive care services..

There will be much emphasis placed on palliative care, by the medical community, in the coming years and the public, in general, will better understand all aspects of it. I like to think that The TNBC Foundation is at the forefront of these efforts.

Let’s please see how useful these forums are as presently named. We can always rename them as suggested. I totally understand the problem. Those in the palliative care field struggle as well with what to call their palliative care efforts.

all the best,

Steve

p.s. stronger, hopefully more effective pain meds come with some side effects. One of the major ones is constipation and that is also dealt with through the palliative care/pain management experts. 





Edited by steve - Oct 18 2011 at 2:43pm
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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As I mentioned in a previous thread on palliative care many hospitals seem to be struggling about how to describe their palliative care efforts..

I started doing a small search this morning and found it interesting that Dana Farber Cancer Center calls their dept. Pain Management and Palliative Care or do they? once you click on the link you are met with Adult Palliative Care. 

http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Treatment-Centers-and-Clinical-Services/Pain-Management-and-Palliative-Care.aspx

                        Home Adult Care: Treatment and Support Treatment Centers and Clinical Services Pain Management and Palliative Care

      Adult Palliative Care


         The Adult Palliative Care Program at Dana-Farber/Brigham and Women's Cancer Center helps adults with cancer live as well as possible while facing a serious or life-threatening illness.

            Our Services
 

            Care Team

 

            Contact Us

 

       Our Services
Palliative care can be helpful through all stages of illness. Early on, it can help make medical treatments more tolerable; at later stages, it can reduce suffering, help you carry on with daily life, assist you in planning for future medical care, and provide support for living with a life-threatening illness.
Palliative care focuses on the whole person: body, mind, and spirit. Our team of professionals aims to provide comfort, preserve your dignity, and help you achieve open communication with your family and caregivers.
Coping with Cancer Pain: A Handbook for Patients  
By working with you, your oncology team, and providers in your community, we blend palliative care into your cancer therapy. We provide:

         Expert treatment of pain and other symptoms
Pain, nausea, breathing difficulties, anxiety, and difficulty sleeping can make it hard to enjoy life. We can suggest treatments that address these problems.

         Emotional and spiritual support for you and your family
A serious illness can be sad and frightening for both patient and family. Talking can be helpful, as can medication. Palliative care can help family members support one another, especially when young children are involved.

         Help in navigating the healthcare system
The healthcare system is often confusing and overwhelming. We can help you find resources and figure out what you need.

         Guidance and support with difficult treatment choices and end-of-life issues
Sometimes, patients and families face difficult choices about future treatments: Is it better to continue treatment for cancer, or to consider hospice care at home? Are the side effects of a particular therapy worth going through? We can help patients and families think about and discuss these concerns.

         Help in coordinating care at home and in the community
Community resources can make it possible for you to receive care at home. We can help you find services, including hospice, and coordinate symptom management and psychosocial support plans with community resources.

                  Hospice care
If your illness progresses despite the treatments you're receiving at Dana-Farber, you and your caregivers may address the idea of hospice.
This service can enhance the quality of the time you have left and enable you to manage your symptoms and address emotional and spiritual concerns. It can help you spend time with loved ones and live your final days with dignity. We are happy to provide information or a referral to hospice care.
Psychosocial oncology and palliative care
The Adult Palliative Care Program is part of the Department of Psychosocial Oncology and Palliative Care. Our teams help cancer patients and their families maintain the best quality of life during and after treatment. Our clinicians include physicians, psychologists, nurses, social workers, and a pharmacist who work closely with you and your healthcare team to provide integrated care and support your unique needs.

Learn more about the Adult Psychosocial Oncology Program  

………………….

For those of you dealing with severe pain I would like to call your attention to Dana Farber’s handbook, mentioned above. Coping with Cancer Pain: A Handbook for Patients  

For those of you in Southern California there is a wonderful resource for pain management at University of Southern California Norris Cancer Center. They call their clinic the USC Pain Clinic and no mention is made of palliative care but if you speak to them and ask them..”is this part of palliative care?” the answer is yes.

http://www.helpforpain.com/clinicinfo.htm

From the above link-

The USC Pain Center has put together an exceptional team of pain specialists who can provide assessment and treatment to patients with complex and refractory pain problems.  Steven Richeimer, M.D., is the Director of the Center. He has triple board certifications in Psychiatry, Anesthesiology, and Pain Management.  He trained at the UCSF, UCLA, and Harvard Medical Schools.

The professional I would also like to mention who is at USC’s pain center is Pamela Merriam. Pamela has been extremely helpful to me as I have learned about palliative care. She is a highly experienced oncology nurse, an expert in pain management and a lovely, compassionate woman. I am honored to call her my friend. As I have said often on this board-“May G-d bless the nurses.”

http://sccpi.coh.org/2010GALA/Merraim.htm

It is my unprofessional view that folks suffering from pain caused by their cancer should not have to suffer unnecessarily. Often, from my experience, the best medical professionals to help with these problems are the palliative care/pain management specialists. Call them what you will but please ask your oncologist for a referral and in some cases you can ‘self-refer’ yourself.

The specialists above are also experts in addiction problems that may be caused by taking strong pain meds. I know this is a concern that has been expressed to me by several patients. All the more reason to see specialists who are alert to abuse problems that may develop.

all the best,
Steve


Edited by steve - Sep 30 2011 at 7:28am
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 Debris Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2011 at 3:50pm
Steve, just wanted to comment on my own very recent experience on this topic. When we met, this came up as one of the topics of conversation. Well, when I had my "episode", which sent me to the ER just shortly theafter, and before I was transferred to Fox Chase the next day, I mentioned something to the attending (nurse?) about Palliative Care (meaning in the context of pain management), and the response "Oh, you are nowhere near that! That's just for hospice patients." What a shame that person was not up on this subject, and didn't get what I was asking about. I must admit, I was too tired to argue, so just let it drop.

I had been basically living from one pain pill session to another, counting the hours until it was "time" for the next pill. I hated it, but was determined not to keep taking the pills closer and closer together. It was painful for DH, too, to see me rocking with pain, but not able to do anything for me on that front.

At FCCC, they took over that aspect, with a thorough review of my situation. They changed the meds, the pain patch and the breakthrough relief. They included the management of the constipation side of it, and, they included the neuropathy issues. The total approach has meant that I am now going the whole day without needing breakthrough medication, which has been so liberating, and has enabled me to focus on getting strength back. And last night I went the whole night without needing that additional help, too.

They also took on the swallowing issues I had, with a food/eating plan, and I just feel so much more cared for, than merely attacking the cancer- big though that is.

So yes, this support service needs more light. It seems there is also a need for the medical industry as a whole to get on board with this, so that patients can view it as one more weapon in the arsenal to fight their chronic issues.

Thank you for being instrumental in getting these threads going.

Take care.

Deborah

w
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2011 at 5:47pm
Deborah, You are the perfect example of what Palliative Care ought to be. And, yes, health care workers should all get on board.
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 HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Oct 10 2011 at 3:26pm
Deborah
You are in my prayers, I am praying for returned vitalitality and a respite from all that you are experiencing now.
Love.
Karen
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zacar Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2011 at 3:25pm
Deborah,

Just checking in on you to see how you are doing.  Sending love and prayers your way.

Hugs,

Caryn
DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: Oct 12 2011 at 12:12am
Hi Caryn. I tried to send you a PM, but your box is full... Wanted to share some info re visit Fox Chase.

How are you doing? So far, I'm doing so much better than before, so I'm very hopeful... .
You too, are always in our prayers.

Take care

Deborah


Edited by Debris - Oct 12 2011 at 12:13am
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2011 at 8:58pm
From MD Anderson -

Pain Expert Punctures MythsNetwork - Fall


Rob Yates, physician assistant in theDepartment of Pain Medicine, sees up to 60 patients a week in MD Anderson’s hospitals and the Pain Management Center

“I have them describe their pain,” he says. “That helps me determine what kind of pain they have and what’s causing it.  This information allows me to determine treatment plans tailored to their needs.”

Throughout his time at MD Anderson, Yates has helped patients deal with pain. He can’t imagine doing any other type of work.

“Our patients go through a lot dealing with cancer and its treatment. I consider it an honor and a privilege to be part of their lives during this difficult time.”

Here, Yates punctures three myths about managing cancer pain.

There’s nothing I can do. I'm going to suffer in pain now that I have cancer.

Take responsibility for your pain. Do what you can to lessen it naturally. Stop smoking, increase your activity, eat well,  sleep well, consider doing yoga, acupuncture or meditation.

I’ll get addicted to pain medication.

The risk of patients becoming addicted to pain medication is the same as their risk of addiction before the cancer, the same as in the general population — about 7% to 10%. Those who develop addiction are those who take pain medication for other reasons than pain. Staying under the care and guidance of your physicians, the risk of becoming addicted is minimal.

If I complain about my pain, I won’t get treatment.

You must talk to your doctor and your medical team. Telling them you are in pain will enable them to help you. If you cannot be active, you may not qualify for treatment.

“I’ve been called to the Emergency Center to treat patients whose pain was poorly controlled,” Yates says. “Your pain control affects your performance status, which is used to determine whether or not you get treatment.”

http://www.mdanderson.org/publications/network/issues/2011-fall/breast-cancer-survivor-pain-calls-for-resourcefulness.html?utm_source=Bronto+at+MD+Anderson&utm_medium=email&utm_term=Br

Breast Cancer Survivor: Pain Calls for Resourcefulness

Network - Fall 2011

By Mary Brolley

"Dark chocolate, music, exercise,” Dara Insley pauses. “Crying. Praying.”

And her secret weapon.

“Cursing.”

Insley is describing how she deals with the chronic pain that is a frequent companion since her double mastectomy and subsequent extensive armpit and neck surgery in 2010.

Pain is considered chronic when it persists for longer than three months.

After her diagnosis with breast cancer in late 2009, Insley underwent chemotherapy, then had a double mastectomy at Walter Reed Army Medical Center in Washington, D.C., in May 2010.

When it was discovered that there was major lymph node involvement, her oncologist at Walter Reed sent her to MD Anderson.

She had the second surgery in June 2010.

She doesn’t know what causes her pain, and its type varies.

'Endorphin addict' uses exercise to relieve pain


“Sometimes, it’s like a gripping vice around my whole arm. Other times, my shoulder feels like someone is clamping down on it. And sometimes it's actual sharp pins-and-needles pain in my arm or finger,” she says.

Her surgeon, Merrick Ross, M.D., professor in the Department of Surgical Oncology, was solicitous and understanding about her reports of pain. He offered pain medication, but deferred to her wishes when she declined.

“He said some of his patients had used Lyrica® with success. But I told him I didn’t want to deal with side effects or add stress to my kidneys, if I could avoid it.”

A self-described “endorphin addict,” Insley prefers to exercise to ease her pain.

“I remember my first visit post-surgery. I was worried he might say it was too soon to exercise. But when I told him I was dying to, he said, ‘No, you go, superstar! You go!’” she recalls, laughing.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2012 at 5:00pm
Pamela Merriam, a RN at USC Norris Comprehensive Cancer Center has had a profound effect on my advocacy career and she has educated me that pain caused by cancer can be dealt with. Also, the constipation often caused by painkillers can also be handled. 

It has been my experience that professionals who specialize in pain management, like Pam does, may be able to devote more time and do a better job helping a woman with cancer than a primary care physician or oncologist can.

I am proud to call Pam my friend.

Here is a short video that I think says it better than my words.


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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