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03-08-2007, 12:16 AM
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#1
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Guest
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Thank You All!
At night when I can't sleep, or write, or even think (I can always eat), I log on to this site and read everyone's posts. I was trying to explain to my husband this evening what this site means to me but it was difficult, other than telling him how much I admire each of you. So many of you have had a harder time than I: younger, still raising children, diagnosed at a higher stage, and yet, even when you're low, confused, or angry (how can we not be angry), you're always positive about life and getting on with it. So I'm taking a lesson from all of you. We've decided to buy a house in the countryside, plant an herb garden, get some more cats (we have two) and maybe a dog, and get on with life. I will stop worrying all day every day about cancer and will get on with living--about time too.
So thank you all. It's nice to have so many new friends.
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03-08-2007, 01:09 AM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Cats are SO comfy
Dear Grace -
What you have described is just what we all go through at some point with this disease. Only you put it in such plain yet eloquent language. Having a site like this is MORE than just knowing you are not alone - we all know that when we go to our cancer centers. There is flesh and blood here, and smart people who care for others.
It takes many months to begin to look forward and get beyond all the appointments and the steep learning curve that comes with a diagnosis of any major disease. I recall thinking that I needed to be so practical and only buy new clothes with buttons or zippers in front to wear to treatment. And other restrictive nonsense.
Treatment saps our energy level and that in itself makes it hard to do anything but what we HAVE to. Takes the fun right out of life! I felt like I had a flat tire and was limping along handicapped.
Spring is a new season and a good time to have thoughts of renewing your life. Start a new chapter. Let go of some of the fear that we harbor over our future. Get your hands in the dirt - I planted some bright primroses yesterday and it felt very good.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
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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03-08-2007, 09:58 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Thank you for your post...I know EXACTLY what you mean!!!
__________________
 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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03-08-2007, 10:45 AM
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#4
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Senior Member
Join Date: Nov 2004
Location: Colorado
Posts: 131
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Spot on...
But I have a suggestion too. Have hubby logon and experience the site for himself - he too may come to love and respect eveyone here - and Lord knows he has caregiver insights he could share!
Love and Light
Mel
__________________
Mel Gordon, Husband of Lisa Lowe - Queen of Love and Light and the bravest person I know!
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03-08-2007, 11:18 AM
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#5
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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I have encouraged my husband from the beginning to become an active part of this forum but he never seems to make the time for it. Guess it isn't a priority and that is a shame because I think he could connect better with what we go through if he would take the time and read through some of the posts. For him, there is work, sports, (both playing and watching), golf, (his addiction), and then me. I am being a bit hard on him as he was by my side from the moment I was diagnosed, through every chemo session and doctor appointment until tax season began, (he is a CPA). I have noticed that he is a bit disconnected from the entire cancer thing now, as he hasn't been able to be involved much at all since early December. I know he cares though. Just wish he would reconnect by reading up on this site.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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03-08-2007, 12:05 PM
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#6
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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you have such a great way with words
I've been noticing in you posts. Thank you for such a thoughtful and inspiring message.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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03-08-2007, 12:44 PM
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#7
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Guest
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Thanks,Steph, Susan, Mel, Rinaina, and Joy. And thanks also for the kind words about my writing. I've had a long time to hone my skills. I'm a writer, with a murder mystery set in Italy coming out this May.
Joy, you are the person I was speaking of to my husband last night. You are always so positive and alive that you make me feel ashamed of myself when I get into one of my "woe is me" moods. You are a wonderful example of the self-fulfilling prophecy, embodying joy in everything you do.
And so also for the rest of you.
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03-08-2007, 03:13 PM
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#8
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Me too grace!
Grace just before I was diagnosed we moved to a little seaside village and got two more cats which make four!!
Having been in treatments for the past 18 months I know exactly what you mean and I too take great comfort and joy in my feline friends and just walking on the beach, and of course coming here.
Enjoy your life..it begins here 
And hug those kitties!
Blessings
Tricia
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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03-08-2007, 03:22 PM
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#9
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Guest
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Where in Ireland?
Hi Tricia,
I have an Irish passport through my mother, born in Donegal and my father, born in Kilkenny. Most of my Irish family live in little fishing villages, in Donegal. Where are you and the kitties enjoying life? Regards.
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03-08-2007, 04:12 PM
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#10
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Hi Grace
We were living in Dublin but moved to Bettystown in County meath.
It's still very quiet and sleepy and I was so glad of that during chemo.
It made me feel I was meant to come here for my recuperation lol!!
I've been to Kilkenny a few times and love it there (great pubs!) but
have'nt got to Donegal yet.
If ever you decide to visit be sure to let me know and maybe we can meet up.
This place is so chilled I have'nt even returned to work yet and for the moment I'm just taking it easy and enjoying my beach walks despite our wet climate!!
Tricia
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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03-08-2007, 10:38 PM
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#11
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Grace,
So very true about this site. Often times when I don't feel like smiling
I just come to the site. I always find a post or article to lift me up. I
don't know how I would have made it through the different emotional
stages that we go through.
If I had a nickel for everytime my husband has called out and asked,
"are you on the her2 site again"? I would be rich!
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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03-09-2007, 01:41 AM
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#12
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Senior Member
Join Date: May 2006
Posts: 143
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Grace-- thanks for articulating what many of us feel. I don't post often, but I scan the site most every day. Luckily, my life has returned to normal and I'm busy with work and family. But I'm not the same person I was before I had breast cancer, and it's important to me to have a place to join my community of women who've all gone through this experience.
Regards to you all.
Linda
Stage 3a, dx May, 05
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03-09-2007, 08:03 AM
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#13
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Grace -- What a wonderful, inspiring message. You relayed my feelings and I'm sure many more women's feelings about this site. When I was first diagnosed, I didn't know what to do, where to go, who to talk to. The women on this wonderful site have such a wealthy of first hand information which has made me a very informed patient. I feel that I do have a say in my treatment. There are so many women on this site who, even when they're at their worst the continue to have such a positive attitude. I gain such inspiration here. I admire each and every women here and keep all of them in my prayers.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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