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10-02-2012, 11:31 AM
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#21
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: A few words from the (not) heartless
Debbie - you have once again started a great thread. And having met you last December and hugged you, I know your heart shines through your eyes, and is easily felt in a sincere hug!
This is exactly the kind of exchange our founder Joe would have wanted. He and Christine created this site for any and all comers (except the you-know-whos). Created it as a place for sharing, exchanging, finding and taking away what we needed.
I am sure the proportions of members and posts now is even beyond Joe's expectation. Although the last redo was aimed at opening up more avenues for information coming in to the site as well as keeping up with the current science and how the members/guests here are able to access and use the results in new treatments.
So much has happened since his passing that maybe the site is not as well organized as could be, but as long as patients, caregivers, and oncology professionals keep using the site to suit their needs his intention is sustained.
Love you all whether you are strong, weakened, wordy or laconic.
__________________
"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.
Last edited by StephN; 10-02-2012 at 11:34 AM..
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10-02-2012, 02:45 PM
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#22
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Senior Member
Join Date: Jun 2012
Posts: 129
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Re: A few words from the (not) heartless
Yes, very well put...i have gained so much knowledge and support, and humorous moments, and...and...and! I often dont feel that i have anythingof substance to add. As an old, crusty RN, (read: down to earth and practical!) i just lurk here and occasionally pop out from under my rock. My own journey has, thankfully, been smooth, and those of you who share your stories here are in my prayers!
__________________
Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year anniversary of last Herceptin.
Sept'14- bloodwork good, return to onco in 8 months.
Oct'14- surgeon will see me in April '15. Moving on.
May '15- mammo unchanged, keeping same schedule. Tumor markers soon and if all is well port comes out.
July '15-tumor markers normal. See onco in a year. Appt. for port end of month. First grandchild born July 1st- for today, life is good.
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10-04-2012, 11:15 AM
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#23
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Senior Member
Join Date: Jan 2010
Location: Wisconsin
Posts: 80
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Re: A few words from the (not) heartless
Very well said and I agree with you....I'm one of those that doesn't post very often, but I lurk EVERY single day!  Hugs and prayers to all!
__________________
Sandra from WI
Stage 1, Tumor 1.4 cm, Grade 3, ER-/PR-/HER2+++
Poorly Differentiated IDC with comedo type necrosis with DCIS/ALH :(
Mammogram: 11/12/09
Call Back Mammo: 11/17/09
Biopsy: 11/25/09
Diagnosis Call: 12/2/09
Partial MX: 12/16/09. 3 LN clean.
6 Cycles Chemo (TCH) Jan-April/10; Herceptin all of 2010; 33 Rads complete 7/10. Herceptin done 12/10.
FOLLOW UPS:
Bil mammo, and Breast MRI 12/10 - CLEAN! (after a second lump was biopsied and BENIGN - showed giant cell reaction?).
Bil mammo 6/11 - CLEAN!
Left mammo 12/11 - CLEAN!
PET/CT scan 4/6/12 - CLEAN!
Bil mammo 8/12 - CLEAN!
November 2012 - Gallbladder Removed.
Bil MRI 2/13 - CLEAN!
http://www.caringbridge.org/visit/sandragreen
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10-04-2012, 01:30 PM
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#24
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Senior Member
Join Date: Sep 2012
Posts: 111
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Re: A few words from the (not) heartless
Before I had cancer (or knew I had cancer) I never knew what to say to people that might help them.
Now that I have it myself, I'm surprised to find out that I still don't know what to say!
I am very much a newbie here, and I'm grateful for all of you who have such wonderful words of kindness and say it so well. I am learning...
__________________
7/30/2012 Diagnosed with metastatic breast cancer
8/3/2012 CT scan mets to liver (major!!), lungs, spine, and skin
8/8/2012 Biopsy results: invasive ductal carcinoma
ER+/PR+/HER2+ amplification 4.8 (whatever that means)
8/13/2012 Brain MRI (clear); bone scan verified CT scan
8/14/12 started Taxotere/Carboplatin/Herceptin, 2 rounds (added Neulasta after 9/4 treatment)
9/4/12 CA 15-3: >3000
9/15/12 CA 15-3: 840
9/15/12 started Taxotere/Perjeta/Herceptin, 4 rounds (no Neulasta)
10/29/12 CT scan showed dramatic improvement in all areas - largest liver met 2.5 cm, largest lung met 10 cm
12/17/12 Started Perjeta/Herceptin, 2 rounds
12/17/12 CA 15-3: 17 Yay!!!
1/21/13 CT scan showed improvement - largest liver met 1.9 cm, largest lung met 2 mm
1/29/13 CA 15-3: 12 Started Herceptin only
3/12/13 CA 15-3: still 12 yay!! Back to Perjeta/Herceptin
3/29/13 CT scan more improvement - largest liver met 1.2 cm, some lung mets disappeared!
3/7/14 started Tamoxifen
6/27/13 - 1/2015 CT scan stable
Began a diet of only single ingredient foods and went nearly NED excepts for some tiny lung spots - ask me if you want to know more...
1/2015 - 1/2017 CT scan stable
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10-04-2012, 01:58 PM
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#25
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: A few words from the (not) heartless
Well said Debbie and AA and others. We all add our words to the fabric of this forum and together we weave a safetynet for all of us. Some have many words to add, some just a few, some just quietly cheer the others along. Our safetynet would not be the same without the words of some of the less eloquent writers. It is what it is because of all of us. And because of the variety of contributions, there is a safe corner for each and everyone. I am more than 8 years past diagnosis and recently had a scare. That's when I reread some posts on this forum and it helped me get through the waiting period.
Today I want to share the good news with you: both the biopsy of the cyst in my breast and the MRI and CT scan of my head were completely, utterly clear.
There, another thread in the safetynet.
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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10-04-2012, 02:20 PM
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#26
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: A few words from the (not) heartless
Jacqueline, good news indeed. The safety net prevails!
Conmyself, sometimes just saying what is in your heart is the very best. A word of encouragement from one newcomer to another can make a world of difference. Just knowing one is not alone....even by saying you dont know what to say probably helped someone!
Keep the faith.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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10-04-2012, 04:39 PM
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#27
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: A few words from the (not) heartless
It is wonderful to see the support we all have for one another, either in posting, or in silence.
I do have to disagree with one statement----
Chrissy, you are NOT our worst nightmare!!
“Encourage, lift and strengthen one another. For the positive energy spread to one will be felt by us all. For we are connected, one and all.”
― Deborah Day
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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10-04-2012, 06:51 PM
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#28
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: A few words from the (not) heartless
Thanks Debbie for a great thread. I don't come here as often as I use too but always check in on my sisters. I sometimes feel as if I don't have much to offer anymore as I, too, am an old timer. Sometimes I suffer from "survivors guilt" and feel as if so many are going through so much that they don't want to hear from me. If I feel the need to encourage or feel as if I might be of some help, I will post.
Like you, I care deeply about all of you and carry you with me in my heart. From my heart to God's ears.
Love to you my sweet sisters,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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10-04-2012, 09:26 PM
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#29
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: A few words from the (not) heartless
Well said.
We are here. That means we care even if some of us don't share their thoughts verbally.
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10-05-2012, 01:36 AM
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#30
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: A few words from the (not) heartless
I, too, have such a difficult time finding words that would adequately convey my feelings on some threads, and I don't post. I dont have enough experience to contribute most times as far as advice to anyone, but if I can I will.
I certainly have taken a lot of support and advice from the members of this site, and even if I could find my words, I could probably never give back to this site as much as it has given me.
So, even if I don't post on a thread, know I am praying for you and thinking of you all daily, including the people who don't post often and I have not gotten the chance to know. I know you are all there sharing in the laughs and tears and frustration and joy..and Im grateful for you.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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10-05-2012, 03:31 PM
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#31
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: A few words from the (not) heartless
Believe it or not, I often also can't come up with the right words and sit it out...especially when I'm feeling personally overwhelmed.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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10-05-2012, 04:11 PM
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#32
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: A few words from the (not) heartless
Great thread and posts. I can't add anything to these perfect words. I'm more of a lurker than a poster. Love you all.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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