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Old 08-24-2012, 02:04 PM   #1
Paula O
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Fun Free Opportunities/resources for Breast Cancer patients

Hi,

I thought I'd start a thread where we can share free fun things and resources for breast cancer patients that we come across.

Our family was selected to participate in a free, one week retreat at a "Little Pink House of Hope" in N.C. in September. We are all very excited! The next applications will be accepted again in January 2013 for next year's retreats in the Carolinas if folks are interested in applying. Here's the web site: http://www.littlepinkhousesofhope.org/index.html

Another really cool thing I got to partiicpate in was a "Casting For Recovery" weekend which are held Nationwide. http://castingforrecovery.org/ What fun I had learning to Fly Fish with other survivors!

Paula
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Old 08-24-2012, 02:28 PM   #2
suzan w
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Re: Fun Free Opportunities/resources for Breast Cancer patients

Thanks Paula, what a great idea! Don't have anything to add...but will sure start to keep my eyes and ears open. I am a fly fisherwoman and I love it!!!
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
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Old 08-25-2012, 04:56 PM   #3
Pray
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Re: Fun Free Opportunities/resources for Breast Cancer patients

Thank you Paula! How sweet of you!
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 08-26-2012, 01:08 AM   #4
Paula O
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Re: Fun Free Opportunities/resources for Breast Cancer patients

http://www.cleaningforareason.org/

Cleaning For A Reason is a nonprofit organization partnering with maid services to offer free professional house cleanings to improve the lives of women undergoing cancer treatment.

When I signed up, a very gracious owner of a maid service (who was volunteering her services in honor of her Mom) cleaned my house four times free of charge while I was going through chemo. It sure was nice to have a sparkling clean house when I was so exhausted and not feeling well.

Hope this lovely resource is a help to others here too,

Paula
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Old 08-28-2012, 04:47 PM   #5
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Re: Fun Free Opportunities/resources for Breast Cancer patients

http://www.campkesem.org./

This a a great , free week long overnight summer camp for kids with a parent with cancer (or who has died from cancer). It is held in different states by University students who support it through fund raisers and who run the whole thing. This past year they opened it to kids up to age 16. (The web site I just checked that is linked above says it is up to age 13 so I don't know if there's a change so I sent an email to inquire). I believe the application process begins in January for camp next summer--we squeeked in at the last minute before camp started because I heard about it late. Apparently slots fill up fast usually.

This is an awesome camp experience: the Camp Kesem my girls attended in Florida is usually used as a Girl Scout Camp. It had a zip line, rock climbing wall, boating, swimming pool, air conditioned cabins, all sorts of fun activities along with no-pressure sessions where kids could open up about their feelings about cancer if they wanted to and were able to connect with peers with similar experiences. It was a fun and refreshing time for two of my children who participated. Kids are welcome to attend more than one year and the couselors seemed outstanding.

Our kids go through so much right along with us, what a blessing to have an outreach addressed specifically to their needs!
Paula

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Old 08-28-2012, 06:55 PM   #6
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Re: Fun Free Opportunities/resources for Breast Cancer patients

Just got a reponse from my email to a Camp Kesem director re: age eligibility I mentioned above . Here it is copied and pasted below:

"No change for next year. You don't mention which chapter you are part of,
but I can assure you that if your chapter had teen camp this summer, they
will have it next year too.

Camp Kesem was originally created for children ages 6 to 13. Over the past
12 years, as the organization has grown - and as chapters grow, and our
campers grow up - Camp Kesem has added Teen Programs for 14 to 16 year olds.


We are in our third summer of Counselor in Training Programs (17-18yrs olds)
at several chapters too. The CIT program was developed by two teen campers
who wanted a way to bridge the gap from being "camper" to becoming a
"college student leader." They are both now in college and volunteering as
student leaders to create Camp Kesem for the next generation of campers.

Great question, thanks for asking... and thanks for being part of Camp
Kesem."
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Old 08-29-2012, 02:25 AM   #7
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Re: Fun Free Opportunities/resources for Breast Cancer patients



Anybody else here besides me participate in the "Look Good, Feel Better Program"? It's a "cheerin' uppin" sort of thing to do whether you are into wearing makeup under normal circumstances or not IMHO.
Paula

http://lookgoodfeelbetter.org/

"Look Good…Feel Better is available free of charge in every state, the District of Columbia, and Puerto Rico. Look Good…Feel Better holds group workshops that teach beauty techniques to female cancer patients to help them combat the appearance-related side effects of cancer treatment. Look Good…Feel Better also offers programs for teens, individual consultations in select areas, Spanish language and Spanish/English programs, and a Web site for men undergoing cancer treatment. Since 1989, Look Good…Feel Better has served more than 800,000 women in the United States and is supported by more than 15,000 volunteers.

Group Programs

Group programs are step-by-step makeover learning sessions led by cosmetology professionals using products donated by the cosmetic industry. Each two-hour, hands-on workshop includes a 12-step skin care and makeup lesson, nail care techniques, and professional advice on how to deal with hair loss using wigs, scarves, hats, hairpieces, and other accessories.
Patients at various stages of treatment receive personal attention and take home instruction booklets and complimentary cosmetic kits in shades that match their skin tones. Each year, more than 50,000 individuals participate in small groups of five to 10 that create a sense of support and community.
Group programs are offered nationwide in comprehensive cancer centers, hospitals, local American Cancer Society offices, and other community settings. Find a local group program via the link above.
One-on-One Consultations

One-on-one consultations are offered in salons in some areas by Look Good…Feel Better volunteer cosmetologists using the individual’s own makeup as learning tools.

Self-help Materials

Self-help materials, including a video or DVD and instructional booklet, are available to those who cannot locally access Look Good…Feel Better. Please call 1-800-395-LOOK (5665) to request a kit in English or Spanish."
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Old 08-30-2012, 05:49 AM   #8
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Re: Fun Free Opportunities/resources for Breast Cancer patients




Here's another beautiful blessing available without cost:

http://www.goodwishesscarves.org/index.html

With love to all my Her2 Positive Sistas,

Paula


Info from their web site:

Our Mission

Our mission is simple: to provide free of charge, one beautiful It's a Wrap© or Good Wishes Scarf to anyone experiencing the thinning or loss of hair as a result of illness or treatment. Our goal is to in some small way ease their journey, provide a small bit of comfort and share the power of positive thinking and good wishes with these individuals on their path to healing and recovery.
How It Works

When possible, we ask people, or their friends and loved ones, to choose three or more fabrics that suit their taste and style and then contact us through our online request form, by phone (888-778-5998) or e-mail (info@goodwishesscarves.org). We then send a wrap or scarf in a fabric of their choosing directly to these individuals along with the support and Good Wishes of all of our staff!. If someone does not have access to the internet, we are more than happy to talk with them about their pattern and color preferences to select something beautiful for them. [Shipping may take 3-6 weeks depending upon stock and demand. International requests will need to pay shipping costs only.]
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Old 09-02-2012, 01:57 AM   #9
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Re: Fun Free Opportunities/resources for Breast Cancer patients

This sounds like a boost during the rigors of chemo:

http://www.chemoangels.net/

"Chemo Angels is a volunteer organization dedicated to adding a ray of sunshine to the lives of those undergoing IV chemo treatment. They believe people going through the physical, emotional and mental rigors of chemotherapy deserve lots of encouragement.

Since their service is provided through the postal mail, your location is unimportant. They have many international patients and volunteers as well."

http://www.chemoangels.net/In%20the%...ic_stories.htm
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Old 09-09-2012, 04:12 PM   #10
Paula O
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Re: Fun Free Opportunities/resources for Breast Cancer patients




Many American Cancer Society offices offer free wigs, hats and scarves, mastectomy bras, and breast prosthetics to help patients cope with the changes in appearances that come with cancer treatment.
1-800-227-2345.

Paula
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Old 09-16-2012, 03:30 PM   #11
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Re: Fun Free Opportunities/resources for Breast Cancer patients

Someone I know received some free hats during chemo through this organization:

http://www.heavenlyhats.com/heavenly...ts/default.asp


Photo taken at a Relay For Life event by my friend.
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Old 09-16-2012, 09:43 PM   #12
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Re: Fun Free Opportunities/resources for Breast Cancer patients

Thank you for posting all of these great resources. I've wondered what might be out there that I could tap into, but never really knew how to find out. I have stage IV mets and two children ages 12 and 13. Since I can't work, resources are quite limited. I would love to find resources I could tap into for my children. Any others you could post would be appreciated. Thanks again.
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Old 09-16-2012, 10:11 PM   #13
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Re: Fun Free Opportunities/resources for Breast Cancer patients

hi search the forums for disability from social security, taking money from life insurance policies.

If you live in the US your are automatically eligible for social security disability. you can apply on line it is based on your work history dollar amount, and then you get your money and the kids get half of your amount divided between them. Eligible for medical care 24 months after filing.

I also was able to take 75% of my term life insurance policy, cash out, non taxed and it left the 25% to cover anything, they take the premium out of the 25%.
This is not a loan (There are places who try to loan you the money). Called an Accelerated death Benefit.

Good luck to you prayers and hope
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 09-21-2012, 05:43 AM   #14
Paula O
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Re: Fun Free Opportunities/resources for Breast Cancer patients


We leave for our week’s all-expenses paid (except for the cost of travel) vacation on the beach in N.C. tomorrow http://www.littlepinkhousesofhope.org/ . Dealing with cancer certainly can be rough stuff for the entire family, including our precious kiddos and this unexpected trip is like a hug from God to us . What a sweet blessing. I can’t wait! It sounds like they have some amazing fun planned for us while we are there.

If you are interested, check out the link. In January they open up applications again for free family and couples retreats for 2013. Families from all over the country meet up in vacation homes at the beach that have been donated for the week in Delaware and the Carolinas.

Thanking God for this lovely gift that our family was selected to participate in a Little Pink House of Hope week,

Paula
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Old 09-21-2012, 10:47 AM   #15
Pray
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Re: Fun Free Opportunities/resources for Breast Cancer patients

Hope you have a great time Paula! You so deserve it! I can't wait to hear all about it!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-22-2012, 04:21 AM   #16
Paula O
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Re: Fun Free Opportunities/resources for Breast Cancer patients

Thanks for being happy for us, Pray.
Paula
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Old 09-24-2012, 12:31 PM   #17
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Re: Fun Free Opportunities/resources for Breast Cancer patients

I wrote today in my blog about our adventures at our Little Pink House of Hope:

http://jpoliver.com/wordpress/archives/1196

Hope some of you guys apply and get to come on a future retreat too. You'd love it too. I know many apply and there are limited spots open but very much worth trying for IMHO--ya never know!

After a great time at the beach with the other families also going through breast cancer, I had a nice chat with a fellow Triple Positive survivor over lunch today--a Mom of two very young children. She is Stage 4 with brain and bone mets and doing much better after a craniotomy and brain radiation.

It might possibly work out to meet up with Barb and Mike before we leave. That'd be great!

Paula
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Old 09-25-2012, 03:34 AM   #18
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Re: Fun Free Opportunities/resources for Breast Cancer patients

I just learned yesterday that the founder of the Little Pink Houses of Hope is also Her2 positive. She is an amazing lady as are all the volunteers giving of themselves alongside her: making a difference in the lives they are touching. What an example of folks serving up refreshing lemonade from the lemons in life they've been handed.

Paula
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Old 10-01-2012, 04:24 AM   #19
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Re: Fun Free Opportunities/resources for Breast Cancer patients

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Old 10-01-2012, 04:28 AM   #20
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Re: Fun Free Opportunities/resources for Breast Cancer patients

We got home yesterday from our Little Pink House of Hope adventure. It was an amazing time, wonderful in every way, and the icing on the cake was a nice visit with Barb, Mike, and family.

Paula
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