Support info:Spouse/main support person |
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Philly526 
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Joined: Feb 08 2012 Location: Pottstown, PA Status: Offline Points: 3 |
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 Posted: Feb 09 2012 at 9:49pm |
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Mindy - Words cannot express my appreciation for your response. Thank you for the encouraging words and good wishes. While my heart is breaking, I know there is healing for both me and my daughter.
My fear was threatening to overcome my hope and steal the joy I have being a mother. Thanks again for taking time to post. Love and Light, Linda
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Feb 09 2012 at 9:51pm |
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Linda, You mentioned that your daughter will be getting TAC. Is it all 3 together? Most of the time it's A/C, then T or T, then A/C. Having all 3 together might be more toxic and have harsher side effects. You might want to get a second opinion from an NCCN facility. I think second and third opinions are great ideas and help us make informed treatment decisions. I wish I had been advised when I was diagnosed. You might also want to see if they've checked your daughter's Vitamin D level. Most of us with TNBC have severely low levels of Vit D at diagnosis. Check out http://www.vitamindcouncil.org/health-conditions/cancer/ Please know that we will help you and your daughter anyway we can. No one should travel this cancer journey alone. Hugs, Donna
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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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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Feb 10 2012 at 1:43am |
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Linda,
Your daughter is so fortunate to have you for her mom. Each person is unique. Each has a unique situation. On the forum, it is hard to know which ideas/thoughts might be helpful to someone. One knows their situation and can use the ideas that are helpful. Most oncologists are receptive to having their patients get second opinions. With TNBC, some people feel more comfortable and sure with their treatment plan after getting a second opinion. Some people ask their oncologists what the oncologists experience is in treating people with TNBC. In case your daughter might consider a second opinion, here's some nearby resources: Dr. Massimo Cristofanilli. Fox Chase Cancer Center, Philadelphia, PA http://www.fccc.edu/physicians/medical/cristofanilli.html **ADDENDUM**5/18/13: Dr. Cristofanilli no longer at Fox Chase, Philadelphia, PA Now at: Massimo Cristofanilli, MD IBC - Inflammatory Breast Cancer expert) Kimmel Cancer Center At Jefferson Philadelphia https://www.jeffersonhospital.org:443/healthcare%20professionals/massimo-cristofanilli http://www.jeffersonhospital.org/related?rel=vp&to=0fa744a3-c81a-4d7d-a9e4-cf04bbed896b&ri=eb9c9510-221c-4f38-a790-7c5beeb0bd76 Dr. Susan Domchek Penn's Abramson Cancer Center, Philadelphia, PA She is on the TNBC Foundation's Medical Advisory Board http://www.tnbcfoundation.org/ourpeople_domchek.htm http://www.penncancer.org/patients/find-a-doctor/85/ Here's the link for the NCCN (National Comprehensive Cancer Network) Cancer Centers: http://www.nccn.org/members/network.asp Some other important info for your daughter and you. If your daughter has already had genetic counseling about have the BRCA testing, great. If not, she and you might look at the following link.....as BRCA testing is now recommended for those with TNBC under age 60 years. A certified genetics counselor is best for the BRCA testing info and evaluation. link: http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html?KW=BRCA If you have any questions after reading this and other forums on the TNBC website, please post/ask your questions as there is so much information to understand. We all want to be helpful........sometimes there can be info overload. With continued caring and hopeful thoughts to you and your daughter, Grateful for today.............Judy Edited by Grateful for today - May 18 2013 at 2:10pm |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Feb 19 2012 at 7:44pm |
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Hi,
Think these videos may be helpful for both the person with breast cancer and the support person. I posted the videos also on TNBC Talk under: Psychosocial support: Sloane-Kettering videos but thought they might be helpful here as well. Sharing what I thought were excellent videos from Dr. Massie, Psychiatrist at Sloane-Kettering on Psychosocial support for breast cancer: How to ask for help. How to talk to friends. How to cope with depression. How to deal with spouse's emotions. Link: http://www.mskcc.org/cancer-care/adult/breast/multimedia (Third from bottom.......may change if other videos added to page) With caring and positive thoughts to all, Grateful for today............Judy Updated video link. Edited by Grateful for today - Aug 16 2012 at 1:16am |
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mindy555
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Joined: Aug 13 2011 Location: Oklahoma Status: Offline Points: 980 |
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Posted: Feb 19 2012 at 10:54pm |
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Excellent Judy! You're always so helpful with good information. I watched through and it's definitely worthwhile.
Grateful for YOU. Mindy |
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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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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Mar 19 2012 at 4:23pm |
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Hi,
Just put this on TNBC Talk and thought........maybe a support person also would be interested in looking at this this. So, just as a FYI if you would be interested. The Longwood Seminars at Harvard Medical School. Tuesday, March 20, 6:00–7:30 pm - Course materials now (3/19/12) available on website. Singing in the Shower to Shaking in Your Boots: The science of emotion "As the childhood song goes, “If you’re happy and you know it, then your face will surely show it,” but do you ever truly wonder why you’re happy? Have you thought about where our emotions come from and why they make us feel the way we do? A panel of Harvard faculty members whose research sheds light on the range of human emotion will explore the science behind the smiles and tears." The handouts for the this lecture cover such topics as: The effects of tears. Mindfulness meditation changes the brain. Expressive writing for mental health. Choices for harnessing positive psychology and other topics. link for handouts: http://hms.harvard.edu/sites/default/files/assets/Sites/Longwood_Seminars/ScienceofEmotion3.20.12.pdf A video of the lecture at: http://hms.harvard.edu/content/video-archive (The 2nd video down: Singing in the Shower........Science of Emotions) The main site has a video archive of some prior programs. (Under Longwood Seminars. Videos Archive) http://hms.harvard.edu/public/longwood/ And if you have something you found helpful and think it might help another support person.......and you feel comfortable in posting, please post and share. With caring, positive and thankful thoughts to all supporting family and friends, Grateful for today...............Judy Edited by Grateful for today - Jan 03 2013 at 2:41pm |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jan 03 2013 at 2:46pm |
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"bumping" thread up for spouses/main support persons who have joined the forums after March 2012.
Please see especially some resources listed in the 1st post on page 1. With caring and positive thoughts, Grateful for today.............Judy |
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beck
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Joined: Nov 30 2012 Location: ILLINOIS Status: Offline Points: 276 |
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Posted: Jan 03 2013 at 5:50pm |
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OH LET ME CHIME IN ON THIS ONE, I CANT SAY MY HUSBAND DIDNT TRY, HE DID , IT WASNT DURING THE CHEMO, HE WAS REAL GOOD , KEPT UP ON THE HOUSEWORK. BUT ITS NOW AFTER WORDS , HE THINKS WELL, YOU DID CHEMO YOUR CURED, DOSENT HE GET IT , THIS IS MY SECOND TIME, NO ONE WANTS TO HEAR ABOUT IT, ITS TO MUCH FOR THEM, SO I VOWED , NOT TO BRING IT UP, WITHS FRIEND OR FAIMLY, THEY ACT LIKE IM TRYING TO RUIN THEIR DAY.. THANK GOD I FOUND YOU GUYS I WENT TO ALL MY CHEMOS ALONE, BUT IT WAS MY CHOICE,SAD AS IT IS WITH A 16 YEAR OLD GRAND DAUGHTER TO RAISE , IVE HAD HER SINCE SHE WAS 3 , A GROWN SON, MY HUSBAND , 5 CATS, A DOG AND A PET RAT , MY HANDS ARE FULL, WHEN I WENT TO DO CHEMO, I PUT MY FEET UP, TURNED ON THE TV, AND THEY BROUGHT ME TREATS, IT WAS MY RELAXING TIME , OH HOW CRAZY IS THAT, THERE WERE PEOPLE THERE I COULD RELATE TO , MY FAIMLY WOULD OF DROVE ME NUTS THERE...MY GRAND DAUGHTER GOT HER PERMIT, AND SAID GRANDMA CAN I DRIVE YOU TO CHEMO TODAY, . OH HELL NO, DO YOU KNOW HOW HIGH MY BLOOD PRESSURE WOULD OF BEEN, IM SURE THEY WOULD OF SENT ME HOME, I REALLY LIKE ALONE TIME , WALKS, GOING OUT TO MY PARENT HOME, THEY ARE BOTH GONE, BUT ITS IN THE COUNTRY AND VERY PIECEFUL THATS WHAT ITS ABOUT FOR ME ALONE TIME BECK
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jan 03 2013 at 6:28pm |
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Beck,
Very sorry that there has not been support for you this second time. There is another thread - Managing without a main support person -......... http://forum.tnbcfoundation.org/topic9573_post97110.html#97110 Some members without a main support person have posted on that thread. I think it is better for members to be informed twice rather than chance not at all.............. So, just as a FYI for your consideration.......for now or sometime in the future or not at all............ .......or just disregard if not helpfpul. There is a TNBC Helpline. It is free and staffed by experienced TNBC oncology social workers. I have called the Helpline and have been amazed at their insights and understanding and support. Call toll free number: 877-880-TNBC (8622) Monday through Thursday 9am to 7pm EST and Friday 9am to 5pm EST.* With caring and good thoughts, Grateful for today...........Judy *The Triple Negative Breast Cancer Foundation® has partnered with CancerCare to offer free, professional support services to patients, families and health providers coping with a diagnosis of triple negative breast cancer. The TNBC Helpline is staffed by experienced oncology social workers with specific knowledge of triple negative disease. In addition to counseling, TNBC Helpline staff can assist callers in availing themselves of the various other services CancerCare has to offer including, where appropriate, helping patients apply for co-pay assistance, transportation and other social services. |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jan 07 2013 at 9:49pm |
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Cancercare.org has a number of podcasts (prior programs) for caregivers/caregvinig.
They have also have support groups and publications. There is also the TNBC Helpline: http://www.tnbcfoundation.org/helpline.htm http://www.cancercare.org/tagged/caregiving For example, Connect Education Workshops™ Podcasts of prior programs. (Go to above link for link to the various following podcasts) For Any Cancer Diagnosis: Helping Cancer Patients and Their Families Cope with the Stresses of Caregiving Stress Management for Caregivers: Practical Tips to Cope Changing Roles and Responsibilities for Caregivers Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally For Caregivers: Coping with a Loved One's Cancer During the Holidays Survivors Too: Family, Friends and Loved Ones - Managing the Fatigue of Caregiving For Caregivers: Coping with Holidays, Special Occasions and Birthdays, Throughout the Year Survivors Too: Family, Friends and Loved Ones For Caregivers: Coping with a Loved One's Cancer During the Holidays Balancing Your Needs and Your Role as a Caregiver For Breast Cancer: Caregivers of Women Living with Metastatic Breast Cancer With caring, positive and thankful thoughts to all supporting family and friends, Grateful for today...............Judy |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: May 18 2013 at 2:12pm |
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"Bumping" up for support persons/spouses/caregivers who have joined since January, 2013.
Grateful for today............Judy |
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