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Old 12-28-2012, 07:50 AM   #1
Paula O
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Any Interest in a Her2 Group Meet-Up in Fl in 2013?

I wondered if there is any interest in a Her2 Support group get together for a fun get-away in sunny, warm, beautiful Florida at a beach in 2013, perhaps in the winter or spring? If there is interest, we could get accomadations fairly economically and I'm sure we'd have a grand time. If this sounds good to you and feasible for you to make plans for, please let me know here or via a PM, including a time frame that works best for you, (i.e.: when could you do it/ how may days you could get away/would a long weekend work).

Any interest?

Paula
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Old 12-28-2012, 08:08 PM   #2
Paty
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

Paula,

Sounds like a great idea. I would need to know ariund when, so I can make plans, as this would be an internatinal flight for me, I think it would probably have to be at least a 5-day trip. Anyway, i could adjust things according to plan. Where in Florida would this be?
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Old 12-29-2012, 05:56 AM   #3
Paula O
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

Hi Paty,

I'd love to meet you if a meet-up does work out. We'll see if there are others who would like to get together. So far not an overwhelming response.

I know it is difficult to make plans like this when people are in treatment and perhaps there is not enough interest overall anyway at this time to make it happen, no problem, just an idea for some fun.

I saw that there is some great fare competion going on--the other day Travel Zoo had deals like Providence and New York were only $120/$140 round trip including taxes to Orlando. Sometimes Allegiant Air has rock bottom prices.

If a FL meet-up happens, I was thinking of the Daytona Beach/Ormond Beach area but elsewhere might work for me. I'm flexible as to timing. Sometimes there are extraordinary deals on posh timeshare resorts or lovely houses at the beach along Fl coasts that people have and can't use for part or all of a week. No guarentees that the timing would be right for it but my husband is great at finding fabulous places at bargain prices. Even if one of those didn't work out, splitting the cost at a beachfront hotel would be reasonable and there are tons of interesting things to do.

Have a great day!

Paula
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Old 12-29-2012, 05:06 PM   #4
Laurel
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

Paula,

Great idea! I am interested.
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

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I think I just might hang around awhile....

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Old 12-30-2012, 06:00 AM   #5
Paula O
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

That's great, Laurel, I'm glad.

Are there others interested? Please do pipe right up if you are.

Paula
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Old 12-30-2012, 06:53 AM   #6
europa
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

I'm interested. However I work so I could only do a weekend.
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PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
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every 3 weeks of Herceptin for another year.
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Old 12-31-2012, 07:09 AM   #7
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

That would be great to have you too, Europa!

Are winter/spring months equally workable for you guys? Is that the best time for you all? The lowest prices are off season which is when kids get back to school in the fall but it's a great place to get out of the cold for a while.

Paula
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Old 12-31-2012, 01:06 PM   #8
StephN
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

Having driven that part of the Florida Atlantic litteral, I can say that it has a lot to offer, and is not as heavily developed as other parts of the coast.

I have some relatives in central Florida, so this would be nice. However, we already have some travel plans around birthdays, etc. So maybe a time that avoids the school breaks should be proposed?
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MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-01-2013, 06:18 AM   #9
Paula O
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

I enjoyed getting to spend time with you in San Antonio, Stephanie. I'm glad maybe you can come too.

It's a great idea to avoid Spring break when it's swarming with college kids or other school breaks as long as that works with people here going. I'd like to avoid Bike Week if possible when Daytona is roaring with motorcycles and need to check when that is.

EVERYBODY is welcome--that means YOU if you are reading this and are interested. Anyone else?

Paula
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Old 01-02-2013, 09:39 PM   #10
Paula O
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

Hi,

Are you guys who responded still interested in a meet-up in FL? One other person who is considering also going contacted me privately by PM. This is a very small group and may dwindle further once details come together---are you all fine with this size group or smaller? Ie: if it was 3 people able to go, would you still want to do it ( ie: in a smaller unit? ) or just as soon skip/postpone it?

This is a really good time to speak up if you are no longer interested or haven't yet expressed interest but think it might work for you.

I'll share a couple options at what I imagine most people consider the nicest resort in Daytona, "The Wyndham Ocean Walk". My family has stayed there many times and it's a great place. Below I am listing links to "Buy it nows" on Ebay on the 3 BR/2BA rental units which we would do instead of the auction option even though that's where the biggest bargains are --we need to be able to count on it without the wait or uncertainty in price/availability so people can make plans.

If we decide to do the meetup at the Ocean Walk or else where, I would need payment from EVERYBODY wanting to go BEFORE the transaction takes place. I think once the arrangements are made we should consider it non-refundable out of consideration to the rest of the group so people know up front how much this will cost and not get stuck with a higher bill if folks back out. Of course if somebody here wants to take your place if you can't go afterall, that's fine.

The best deal is on the first one listed below. That one comes up in one month. I didn't see much that included weekends--most were five days and one of these is for a whole week. Europa can do just weekends. There are lots of other resorts/hotels/motels, other cities along the coast, and other times that are other possibilities. I am just starting with this place because it is well known to me to have consistently excellent accomodations, it's a good value for what you get and reasonable to split, and see what you guys think. These listed have 5 beds including the sofa sleeper and they sleep 10 . If we have more than 5 ladies interested, are people comfortable sharing a bed?

If anyone else wants to do a search and propose anything else, please feel free to jump right in with other options. WWW.VRBO.com is another good resource besides Ebay.

Here's what I saw tonite:
http://www.ebay.com/itm/Luxury-Wyndh...item19d7739844

http://www.ebay.com/itm/Wyndham-Ocea...item4d0848b7b7

http://www.ebay.com/itm/Wyndham-Ocea...item53f2696d98

http://www.ebay.com/itm/Wyndham-Ocea...item53f299e6a2

http://www.ebay.com/itm/Wyndham-Ocea...item53f269695b

Please let us know. I'm sure we'd all have a marvelous time if it works out but am fine either way: to move forward or drop the idea if there isn't enough interest.
Paula
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Old 01-07-2013, 06:13 PM   #11
Laurel
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

Paula,

I guess we need to nail down a date? Are you thinking April or May?
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 01-08-2013, 04:38 AM   #12
Paula O
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

Laurel, I'm not sure there is really even enough interest to make it happen but maybe there is. Is April or May best for you? I had thought maybe people might enjoy a few days of defrost mode of balmy weather in the winter if they live in cold climates but perhaps people would rather do it in the spring or summer or not at all which is fine with me too. If anyone wants to share input/other ideas (would people rather do a short cruise or meet somewhere else?), share away, otherwise I'm fine to just drop the idea.

That first link above at the Wyndham was for $545 for 5 days--a fabulous place that is very reasonable to split among 5 or more people but coming up in February which is not a lot of notice.

Whatdaya think? Any feedback/input?

Paula
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Old 01-15-2013, 10:07 AM   #13
suzan w
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

I am in Naples until the end of April...and I think Patb will be here in Naples soon. Just logged on today after a while so don't know if this is still in the works!!!
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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!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 01-16-2013, 08:33 AM   #14
Paula O
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

Suzane,

That's neat that you and Patb will be able to connect. I'm glad.

You, or anybody else are more than welcome to organize a Her2 meet up with you guys in Naples or somewhere else altogether if anybody would like. Perhaps there would be more interest.

Have a great day!

Paula
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Old 01-16-2013, 12:32 PM   #15
msmanuf
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

Hi, I am basically a stranger to everyone, but I would love to meet women with this terrible disease. I am available anytime. I live in NE PA in case anyone from the area would like to talk, get together, etc.

Mary Jo
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Old 01-16-2013, 09:09 PM   #16
NEDenise
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Re: Any Interest in a Her2 Group Meet-Up in Fl in 2013?

Mary Jo
There are several of us in PA - me, LeahM, hestko, Laurel. ammebarb and now my chemo addled brain won't let me remember any others.
Where in NE PA do you live? I'm in Lansdale. LeahM is in Bethlehem. Someone lives in Glenside...but I can't remember who just now.
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
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6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
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7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
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