The waiting room!!!

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kare369
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Re:The waiting room!!! - Tuesday, July 27, 2010 9:08 AM
THANK-YOU ALL !!! 1 MORE DAY TO WAIT.
I WILL TRY TO POST MY NEWS ON FRIDAY
AS MY APT. IS IN THE LATE AFTERNOON THURS.
 
IT IS SO WONDERFUL TO HAVE THIS SUPPORT
FROM PEOPLE IN THE SAME BOAT !

LaudyLo
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Re:The waiting room!!! - Tuesday, July 27, 2010 9:23 AM
Hi Karen, just saw your posts I was a way for a couple weeks to Mi. back now and wanted to say a hello and to let you know I'm thinking of you:) I'm sending hugs to ya!!
Laurie/S.Fl.
DX@ age: 46 on 8/17/09
IDC Stage 1, Grade 3, Node Neg. Hert2-
Lumpectomy R.B. 1.08 CM.  Er+ & PR+
Onca score:  "24"          BRCA-Negitive!
Chemo-(8) C.M.F...   DONE final 3/17/10
Rads x 36..............   DONE final 6/04/10
1200 UI Vitamin D    & Tamoxifen 5 yrs.




Sharon
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Re:The waiting room!!! - Tuesday, July 27, 2010 12:44 PM
Pals

Not long to wait Karen, everything crossed for you :)
Non Hodgkins Lymphoma Extra Nodal (Stomach + BM)
Stage IV C. Survivor x 5 years
T/ment: 8 cycles Rituxan CVP x 8 + Rads. x 30
Friends affected by Breast Cancer


Rena
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Re:The waiting room!!! - Tuesday, July 27, 2010 1:09 PM
To Karen and to anyone else waiting, I'm sending positive thoughts!!
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Pat Patterson
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Re:The waiting room!!! - Tuesday, July 27, 2010 7:47 PM
My thoughts and prayers are with you, Karen - the wait is almost over and you will be on your way.   Farla..so good to hear that everything is copacetic.  My kids are gone and I long for those days, well, not the accident part.  That is truly a mother's worst nightmare.  Thank God he wasn't hurt.    My 8yr old grandson, Ian, will be with me next week.  He is going to camp at our Clearwater Marine Aquarium, SHARK camp in the morning and OTTER camp in the afternoon.  They are great programs and I am so happy to be part of his adventures!  They go out snorkeling and everything!  TTFN! 
DX 5/13/08 Clearwater, FL HER2 +
IDC Stage IIIA changed 12/2/08 to IIB Grade 3
Taxotere, Carbo & Herceptin  6/11/08
Part Mas 11/5/08 SNB neg & addl node neg - CLEAN MARGINS!
Arimidex 11/25/08  35 Rads 12/15/08

Rose Cafe523
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Re:The waiting room!!! - Tuesday, July 27, 2010 9:22 PM
Just thought I would pop in to the waiting room and see how everyone is doing!  I think we should come up with some ideas for those waiting rooms to improve them.  May not get accomplished but worth thinking about.  The cancer center that was remodeled, that my Mother used to go to, had made some nice improvements.  They had the seating arranged that was in smaller groupings and it seemed to promote others talking to each other a little more.  Lots of snacks- crackers, cookies, of course tea or coffee, an ice machine and water.  They had a large screen TV in one  are  for any that wished to watch that.  Seemed to be a larger selection of  magazines too. 
 Pink Impacts Forever
5-23-06 DCIS High Grade
Strong family history BC/OVCA
denied(lost appeals)out of network surgery
10-30-06 BM SICA left,DIEP right
Nodes Neg No chemo or rads 
Revisions along with LAVH/BSO/TVT 1-23-08
Biopsies x 3 10/20/08,neg
Bone scan 2/23/11 spot on R frontal and occiptal bone
PET/CT scan 3/4/11 negative

Pat Patterson
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Re:The waiting room!!! - Wednesday, July 28, 2010 6:31 AM
Can we also have HAPPY HOUR?  
DX 5/13/08 Clearwater, FL HER2 +
IDC Stage IIIA changed 12/2/08 to IIB Grade 3
Taxotere, Carbo & Herceptin  6/11/08
Part Mas 11/5/08 SNB neg & addl node neg - CLEAN MARGINS!
Arimidex 11/25/08  35 Rads 12/15/08

Rena
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Re:The waiting room!!! - Wednesday, July 28, 2010 2:11 PM
When I was treated in 1986-87, the radiology dept. where I had radiation was in the basement of the hospital and was dark and austere, like a dungeon. I alway felt as though I was walking into Dr. Frankenstein's lab and would come out looking like Peter Boyle, with bolts in my neck and huge platform shoes (Has everyone seen "Young Frankenstein"?) .  Anyway, the Cancer Center at the hospital now is gorgeous! They have a screen that shows changing pictures of famous paintings, with information about the artist at the bottom. It's very soothing. In the waiting area, there are always tea and snacks and an ongoing jigsaw puzzle that everyone is welcome to work on. And, best of all, it's light and bright! What a difference 20 years makes! Now, if we could just get rid of the need for cancer centers! 
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Tricia Keegan
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Re:The waiting room!!! - Wednesday, July 28, 2010 2:45 PM
Oh Rena, that rads dept sounds awful and so depressing!

I see "our" komen waiting room similar to to the cancer wellness centre I volunteer at, when I bring the people to the waiting room they're amazed to be brought into a beautiful comfortable and bright lounge with comfy chairs, magazine's, soothing music and snacks....and of course tea/coffee and it looks onto a beautiful garden with a mini waterfall.
People immediatly say wow when they walk in, I myself go home feeling very calmed having been there:)

All the therapy rooms are designed in similar fashion with the names called after a flower with large prints on the walls etc....

I'm sure you all have your own thoughts as to what should be added to this, but this is my idea of the komen waiting room:)


Oh, almost forgot..lets add a Dr in the corner to answer any questions while we wait lol....


Pat, did'nt forget you, drinks served at the water feature in the garden!!!
<message edited by Tricia Keegan on Wednesday, July 28, 2010 2:47 PM>
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

farla
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Re:The waiting room!!! - Wednesday, July 28, 2010 7:52 PM
My rad center had granola bars, and bags of chips next to a coffee/tea maker.  There was never a long wait, so I never indulged.  But here, in this room?  I'm not driving anywhere, so I'll just sit next to that water feature, a pink zinfadel, please!
Farla
dx 8/09, R double lumpectomy, invasive mixed DCIS/LCIS
ER + PR + Her -
1/3 Sentinel pos. 1/15 nodes pos
 Stage 2A  Grade 2, Nottingham 6
chemo A/C x4, Taxol x 4 started 9/21/09 DONE!!!
femara  started 2/5/10
rads  2/8/10 DONE!!!
Now - osteoporosis?  Vit D, calcium, and a baby aspirin to boot!

Sharon
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Re:The waiting room!!! - Thursday, July 29, 2010 1:44 PM
A Pink Zinfadel coming over Farla, enjoy, Cheers/Slainte/ Nastrovia! x
Non Hodgkins Lymphoma Extra Nodal (Stomach + BM)
Stage IV C. Survivor x 5 years
T/ment: 8 cycles Rituxan CVP x 8 + Rads. x 30
Friends affected by Breast Cancer


kare369
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Re:The waiting room!!! - Friday, July 30, 2010 8:03 AM
Hello everyone, I have met all the dr.'s on my team and got some more info.
I need to get a pet scan and 1 more biopsy. If the biopsy is poss. I will have to
have a masectomy vs. a lumpectomy. If the pet scan is clear my plan will go like this:
Chemo for about 4 months to shrink the tumor, surgery and then radiation. I will
be having a port put in also. 1st chemo will be Aug. 16 Not looking forward to more tests and the
port being put in but I am ready to get this going. Also they want to do a genetics test,
how do they do that? I can't believe I didn't ask. So much info in a short time. So, I guess
I am still in the waiting room for awhile. They should be calling me today to give me my apt.
times for the biopsy, pet scan and the port. Oh, my chest x-ray and blood work came back normal.
 
Thanks ladies, I will let you know more when I find out.
Hope everyone is well!

LaudyLo
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Re:The waiting room!!! - Friday, July 30, 2010 8:52 AM
Hey there girlfriend:)    Yeah, I know what you're say'in, I remember wanting to get things started as well!    I have had 2 genetic tests: The first one was for the Onca DX , the surgeon simply sends a sample from your tumor to their lab in California. I suppose the same might be done from a sampling from a biopsy of the tumor as well. Anyhow this genetic test will show the most likely rate of occurence you may or may not have.There is nothing extra you need to have done for this test:)

The 2nd genetic test I had done was called the BRCA analysis and is tested by a simple blood test from you and then sent to their lab that tests for this... (sometimes the Onc does this before chemo, in my case she did it after and therefore it was done about a month or so after chemo so chemo could get out of system enough for the blood test to be accurate)  This test is great to detect if you may or may not be carrying the mutation for ovarian cancer as well as other types of cancers and can be a great tool for your treatment plan for your doctor. Hope this helps:)
Laurie/S.Fl.
DX@ age: 46 on 8/17/09
IDC Stage 1, Grade 3, Node Neg. Hert2-
Lumpectomy R.B. 1.08 CM.  Er+ & PR+
Onca score:  "24"          BRCA-Negitive!
Chemo-(8) C.M.F...   DONE final 3/17/10
Rads x 36..............   DONE final 6/04/10
1200 UI Vitamin D    & Tamoxifen 5 yrs.




Sharon
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Re:The waiting room!!! - Friday, July 30, 2010 1:04 PM
Karen, you are treading a road there aren't you?  A lot of info. you had  to take in.  Happy for you that the Bloods were OK.

Wish for you that 16th August passes well. I think of you.

Sharon x
Non Hodgkins Lymphoma Extra Nodal (Stomach + BM)
Stage IV C. Survivor x 5 years
T/ment: 8 cycles Rituxan CVP x 8 + Rads. x 30
Friends affected by Breast Cancer


Skindy
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Re:The waiting room!!! - Friday, July 30, 2010 2:26 PM
Tricia,
 
Awesome idea.  The waiting room is a lonely place and it would be nice to have a place where you can have support.  You have such lovely ideas.  You are a beautiful, caring person to do this. 
 
Cindy
"I would rather have thirty minutes of wonderful than a lifetime of nothing special".... Steel Magnolias

C Berrier, Austin, Tx 55
Diag. 3/02/2006 Stage IV
11/13 positive nodes, e/p +
Mast/Hyst. 3/24/06
Almost 7 years Yeah!!!!

kare369
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Re:The waiting room!!! - Saturday, July 31, 2010 9:59 AM
Thank-you for the info !

Tricia Keegan
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Re:The waiting room!!! - Saturday, July 31, 2010 3:01 PM
Thank you Cindy, I cant take the credit as saw the idea on another board but loved it so much I knew we needed our own on komen:)

Good luck Karen, you're going to be busy with medical appts for a while but it will settle down, and you're never alone in the waiting room:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Pat Patterson
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Re:The waiting room!!! - Sunday, August 01, 2010 6:40 AM
Karen - this is exactly how the plan went for me.  I was a nervous wreck, I will tell you, waiting for the results of that PET scan.   It all went extremely well, the chemo first annihilated the cancer, it never showed again on the ultrasound or MRI's!  The suregeon said it was a good thing that the radiologist put markers in there or he wouldn't know what tissue to remove in the partial mastectomy.  Hang in there - you are almost on your way     and we are right beside you! 
DX 5/13/08 Clearwater, FL HER2 +
IDC Stage IIIA changed 12/2/08 to IIB Grade 3
Taxotere, Carbo & Herceptin  6/11/08
Part Mas 11/5/08 SNB neg & addl node neg - CLEAN MARGINS!
Arimidex 11/25/08  35 Rads 12/15/08

Tricia Keegan
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Re:The waiting room!!! - Monday, August 02, 2010 5:13 PM
I've copied/paste the following from Cindys thread -

Tricia, I looked for the new thread but it must not be up yet.  I am in the waiting room right now.  I thought I could talk myself out of it, but I just can't.  I have my regular 3 month check-up on August 16th, and I am already worrying myself sick about it.  I do this every three months, so it's nothing new.  I become weepy, withdrawn, and feel as if none of my family understands when I try to explain how I feel.
 
I keep hoping this will go away, and it has improved tremendously, but I am 4 1/2 years out and still feel very, very anxious every three months.  I think that going every three months is probably a constant reminder that I had a high risk of recurrence and my Oncologist has kept me on this program for 4 1/2 years now.  I used to go every 2 months, then he upped it to 3 months.  I also think when he changes it to 6 months or a year, I will still freak when I have a twinge. 
 
This just sucks.  I am functional and everyone thinks I am a-ok, but inside my gut is rumbling and I feel as if I want to jump out of my skin.  I know I am the only one who can change this, and I do work on it.  It's just hard and I wanted to say "I WAS IN THE WAITING ROOM".  Anyone else?
 
Thanks Tricia, I do think the Waiting Room is an excellent idea!!!
 
Cindy


Okay Cindy, NOW you're in the waiting room!   Pat will pour you a drink by the water feature in the garden while we all gather to hold your hand:)  (Hurry up Pat!!! mine's a dry white wine please)

Cindy, I dont think your onc is doing you any favours by dragging you back for appts every three months, I also have a high recurrance risk along with many other's here, but only see my onc once a year unless I have a problem.
It just leads to more stress and anxiety, and if you're feeling okay, why bother???

I think we need to help ourseleves leave cancer in the past somewhat and it's more difficult for you, if you're seeing the onc so often as if you're still in tx!
This is really not the norm, and while it may have been reassuring in the early days, I'd speak to him/her about stretching the appt's out further now.

Cindy, I doubt you have anything to worry about, you're feeling well, and almost five years out!!!  Thats a great milestone to reach for anyone, so take confidence in that.
While your appt is worrying of course, tell yourself it's only a routine appt, and it's not as if you found a lump or have pain and worrying about bone mets or something.

Please try to reassure yourself, the Dr can only do so much.
Of course we're all here for you through the waiting but I have a hunch you'll be fine:)

Slainte!!!  and ((((hugs))))
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Pat Patterson
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Re:The waiting room!!! - Monday, August 02, 2010 6:35 PM
Tricia, my dear, dear friend...here you go!!!!  I'm having a beer - anyone join me?       Cindy, aren't we supposed to feel the way that you do?  I thought I would go out of my mind when, after I saw my oncologist,  they called me back for more bloodwork.  In case you didn't see my post...I just about had myself dead and buried, and all over a low potassium level!  And he had told me that everything was good but I was convinced they must have found something after I left.  I believe that this is our fate, we can do this to ourselves or not, it is OUR choice!  Que sera, sera....





[link=http://www.smileycentral.com/dl/index.jhtml?partner=ZSzeb098_ZNxdm801YTUS&utm_id=7926][/link]
DX 5/13/08 Clearwater, FL HER2 +
IDC Stage IIIA changed 12/2/08 to IIB Grade 3
Taxotere, Carbo & Herceptin  6/11/08
Part Mas 11/5/08 SNB neg & addl node neg - CLEAN MARGINS!
Arimidex 11/25/08  35 Rads 12/15/08

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