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Old 05-14-2006, 05:23 PM   #1
Becky
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The American Cancer Society can help you big time with this and also provide direction and advice. However, I do believe that you need to be trained as a "Reach for Recovery" volunteer. This is a 9 hour training (over 2 days) and you could then also be given names of people who call the ACS for help.


I am awaiting training at the next one given in Northern NJ. The support group I go to is ACS sponsered and our 2 group leaders are Reach for Recovery trained volunteer survivors.

Just a thought on how to get help and information as not all support groups are ACS sponsered.

Kind regards


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Old 05-14-2006, 06:46 PM   #2
jsattaw
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Hi Sassy --

I started a cancer support group in my rural area (population 1500) in January. While open to all types of cancer survivors, we mostly have breast cancer survivors attending. We meet once each month (3rd Saturday) at a local coffee shop that has a private room available to groups.

I've utilized some materials from the Lance Armstrong, Live Strong Foundation -- they have 3-ring Survivor binders that are free (you have to pay shipping) and lots of other information available on survivorship. I also have been intenting to contact our local Komen affiliate to see if they have any community grants available that could defray costs of speakers, education materials, etc. but haven't yet had a chance to follow-up with them.

Our group is working with our local library to make publications and books available and support those newly diagnosed, going through treatment, and beyond. We also attend other events in the area together (e.g. Race for the Cure, Relay for Life, etc.).

We are about 45 miles from our cancer center that has nutritionists and therapists -- they have been very willing to provide us with information and/or a guest speaker but since we're so new we are just focusing on peer support right now. We've had a good response from the community and I think it's been especially useful for people who are newly diagnosed to know there's people who have been through it and are there to assist.

Good luck with your group.

Jill
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Old 05-15-2006, 05:22 AM   #3
Sheila
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Sassy
I forgot to say that our group has also started a library of books that can be checked out from the hospital we meet at....we donate the books, all having to do with breast cancer, some humorous and some serious and more medical...this has been a great resource for anyone wanting to read up and at no expense. We have a couple of women who are trained reach to recovery volunteers, and go visit patients. The hospital and womens health section has been very supportive of us and getting us involved with newly diagnosed "just to let them know that we are available."
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 05-15-2006, 04:25 PM   #4
Ginagce
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Support Group Help

Bless you for reaching out to others who are new to our "world".

The Living Beyond Breast Cancer group has a wonderful toolkit to create a support group. Check it out.

www.lbbc.org

Ginagce
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