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03-15-2009, 10:46 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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LANI--Commemorative Thread!!!!
LANI
We're wondering if you have seen this thread...
http://her2support.org/vbulletin/showthread.php?t=38074
Today, 01:19 AM # 495 Flori
Senior Member
Join Date: Apr 2007
Location: Beverly Hills
Posts: 731
I am obsessed - I really NEED to know - has Lani ever seen this thread? I can't flip through all 25 pages. In the history (brief as it is) of commemorative post threads - this is a very successful one. BUT, but, But-can anyone tell me if Lani's been here?
Sorry-I don't have a song. Just the usual loony tune.
__________________
1996 (age 38) br ca. 1.3 cm. lumpectomy, lymph node dissection. 20 nodes neg - CMF x 7 + radiation.
2002 local recurrence. bilateral mastect w/recon. AC x2 - skin lymphatic rash. taxotere w herceptin x4 herceptin & zeloda.
2003 lati.dorsi flap herceptin thru 4/04 NED.
2004 '05 & 06 local recurrence on scar line. Jan 06 re-radiation
March 2007 mets to lungs and sternum. July '07 Tykerb/Xeloda. October '07 TYKERB/CARBO/GEMZAR
NOV 2007wash out.
December '07 - Herceptin, Tykerb & God.
FEB '08 gamma knife.
MARCH '08 herceptin/tykerb/avastin/zometa. (June '08 - brain MRI clean. AUG '08 brain MRI clean)NOVEMBER '08 PET STABLE. CT STABLE. BRAIN NED. MARKERS COMING DOWN.
__________________
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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03-15-2009, 11:15 PM
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#2
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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thanks Sassy--I don't think I have ever been commemorated before
Have I kicked the bucket?
My first thought was--I bet I have posted many more than 2500 threads/posts
but there was an episode several years ago when someone hacked the site and I thought they lost about 1400 of my posts.
Could Joe confirm/deny that?
I am not certain I get the gist of each of the songs utilizing a word from a previous song, but it sure kept on going!
Flori--my brother's nickname for me growing up was: Looney Tunes!
Guess I haven't changed much!
I tried to see if I read the thread "in my sleep and forgot about it".. ie, whether as someone posted, I had acknowledged the thread on pg 3. I didn't remember doing so, nor can I find evidence that I did.
Thanks everyone for the commemoration!
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03-15-2009, 11:17 PM
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#3
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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glad I don't have to be deceased to be commemorated:
com⋅mem⋅o⋅rate [kuh-mem-uh-reyt] Show IPA
–verb (used with object), -rat⋅ed, -rat⋅ing.
1. to serve as a memorial or reminder of: The monument commemorates the signing of the Declaration of Independence.
2. to honor the memory of by some observance: to commemorate the dead by a moment of silence; to commemorate Bastille Day.
3. to make honorable mention of
Whewww!!!
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03-16-2009, 04:04 AM
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#4
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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As far as I'm concerned it's the honorable mention of!
I try to find a youtube video every time I post the name of a song, so people can actually hear/watch it.
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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03-16-2009, 10:54 AM
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#5
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Oh, my goodness--I now see that there are
505 replies and over 2800 views! WOWWWWWW!!!!!!
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03-16-2009, 09:30 PM
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#6
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Well, now I can sleep tonight! Thank you, Sassy.
And Lani - thanks for all your efforts (really Thanks).
I'm glad you have seen your huge and dedicated fan group.
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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